Week 16: Thursday 09 March - Wednesday 15 March 2017
Started writing this blog over the weekend so I can actually play catch up and try stick to my planned publication schedule... I have been a bit busy over the last few weeks and have ended up publishing at weekends rather than the Thursday/ Friday I originally planned... absolutely of no relevance or interest to anyone other than me, but I am trying to maintain a little bit of self discipline even through the chemo fog and the dramas in order to keep me on track with my mini goals lol. 😀😀😀
So much has already happened by the time I got to Sunday of this week, that it is good to have time to take stock and reflect on what has been a really great, but full on couple of days. (I write this at 3am in the morning after waking up after 4hrs of good sleep but actually feeling fine lol.)
Thursday (after checking to see that the summer house had survived the night - it had lol), Mum took me over to St John's where I was scheduled to have my Headstrong appointment. This was a one to one service which saw two ladies actually take me through how to care for my balding scalp, to offer counselling on the different changes that were happening in me, and also to give me tips on how to wear different types of head gear. It was a really excellent session actually, with helpful tips about using a baby hairbrush to stimulate my scalp and keep my hair follicles clear, to using aloe gel to smooth my scalp when it gets a bit dry. We also discussed what happens with finger and toe nails with particular chemos, and I can now laugh at last week's worry that my nails were off... whilst that IS likely to happen further down the line, last week's occurrence was actually nothing more than my shellac manicure just peeling away naturally 😀😀😀.
When it came to trying on headgear, I wasn't sure how I would feel about it... the only kind of breakdown I have had during the whole cancer experience was when I was trying to learn to tie a scarf after xmas. I think that's because a wig can be fun and playful, baldness is almost a badge of honour, and my skull caps are just light and convenient. So, actually I was a bit nervous about trying on stuff... but in reality it was a bit of a laugh, and it was also fascinating what you can do with different bits of material!
... It turns out that hat wise, I actually look quite cool in the crochet / woollen caps with the flowers attached to the side, but I don't look so good like a Russian-esque spy with a fur cloche...
... I laughed myself silly with the detachable fringes... but they did make me look different... maybe if I ever pretend to be a secret detective they will be good for a disguise 🕵🏻♀️...
... the stiff cotton scarves, whilst great for scalp coverage for the sun and soaking up sweat, are probably a bit big and bulky for my head to carry off comfortably...
... the silk and chiffon scarves are amazing - I was getting taught how to colour up my life, and turn scarves into flowers using head bands and scrunches 🌺 ...
... and my favourite overall, a jersey material one which is a bit like an elongated skull cap, but comes with matching scrunchie and looks a bit trendy 😛.
And actually I got given some to take away for free! Completely unexpectedly, but this counselling service and gift pack are funded by Bosom Buds of Scotland, and there was so much in my pack, I continue to be overwhelmed with how much support, help and gifts are out there. I really do want to be able to give something back to all the charities when I am finished my treatment, as each wee extra bit is just such a great boost to me as I get along each day...
Honestly, my stash of goodies included 2 scarves, aloe gel for my scalp, aloe lip balm, factor 50 sun cream, hand sanitiser, a ruby quartz bracelet, a nail file, a spa treatment voucher for after chemo / radiotherapy, and so many helpful leaflets that can signpost me to things I might need, contact numbers for people who can help, and also just reminders that I am still alive and not some robot going through a medical process 😀😀😀.
Thursday night I stayed over at mum and dad's, as mornings can still be a bit wobbly for me first thing, and I expected that after a two day seminar, I might be a bit drained on Saturday... so mum's taxi came into being yet again lol.
The joys of staying over is I get spoiled with every need and desire, and I also get to see new types of tv programme that I might not pick up at home, so I got exposed to 'Code Black' and 'Prime Suspect:1973'... more shows I need to put on my watch list lol.
Friday I was all set and packed ready to go, when I was struck with sudden vomiting. No warning, and just water, but I don't know if this was some form of anxiety about going away for a few days, or if it's just chemo. I have also had some extra new side effects again so far this week... can I just say at this point that haemorrhoids are no laughing matter...? Well, technically they ARE the butt of many jokes, but it's a right bugger to spell correctly... 😜😜😜.
Anyway... continued on into attending the seminar, a bit weak kneed, but determined to go regardless.... and I was so glad that I did, on so many levels. (Mum was kind enough to say I could phone at any point if I needed rescued, got bored, got ill... and that she would be my getaway car... but thankfully I did stay the whole course 😀.)
If I start by making the humorous observation that there are always distinct types of conference-goer, and over time, I think I have played each of these characters depending on my mood and maturity on the day and depending on the subject matter... maybe this makes it sound less sarcastic and judgemental lol.... 😀 (or maybe not...)
1. The swot. The one person on the room who has researched everything and every one, and is a bit like Hermione Granger from Harry Potter. Puts up her hand and pronounces things before anyone else even knows there has been a question.
2. The know-it-all. The person on the room who knows more than the expert speaker.
3. The disbeliever. The person who actively disagrees with the expert in the room.
4. The eye-roller. The person where it doesn't matter who is speaking, on what topic, but they breathe heavily and do dramatic eye rolling as if everything is beneath them...
5. The 'all-about-me'. The person who makes every question or subject about themselves, even down to the most personal, confidential or intimate detail.
6. The heckler. The person that shouts out and disrupts just for the fun of it... even (and maybe especially) if they have nothing actually to say.
7. The rude talkers. The people who have side conversations over the main speaker so the audience is distracted and can't actually hear properly.
8. The tutters. The people who tut disapprovingly at the rude talkers, but maybe don't realise they add to the noise pollution.
9. The "excuse-me" brigade. The people who actually try to shush other people politely by asking them to quieten down... this can go one of only two ways.... lol.
10. The bored. The people who stare longingly at clocks, fidget, read their phones... harder to get away with in a small group btw lol.
And of course then there are the genuinely sick people who may just have piles.... 😜 (That would be me on this occasion lol...)
The content of the seminar was truly amazing, inspirational and a complete emotional rollercoaster. Apart from learning about other girls' experiences of this life changing diagnosis, we had the most up to date medical facts, professional dietician and exercise advice, as well as master classes in dealing with menopausal symptoms, laughter as a medicine, dealing with reconstruction and also a sexual therapy class.
(That particular session started with quite an explosive beginning, that I am pretty sure we all felt like giggling and blushing teenagers again 😀😀😀!)
The whole event was full of coping mechanisms, hints and practical tips, and also about being able to challenge my own self prejudices and perceptions...ultimately what came through is that I am NEVER going to the the same person that I was. But that is not a bad thing. 🤗
It does refer to being different on the physical level in relation to current and potential future body scars, but it is also about who I am as a person on an emotional and mental level too. In effect, I have had a brush with my own mortality, and it does make me think about my priorities in life, what is important, what I am prepared to tolerate in my life, and equally what I am not.
Don't get me wrong, I am not going to be making any life changing decisions as I go through active treatment - aside from the fact I have chemo brain at the moment, there is no doubt that I am not able to think completely cogently about stuff, so there will be things to consider after treatment when any chemical or surgical induced changes are complete. You never know, I may become a naked hitchhiker and commune with nature this time next year 😜❤️😀...
Going through the conference itself, I also overcome other wee barriers... I so did not want to present a 'sick' picture of myself... but after an hour sitting overheating and feeling queasy in the conference hall... I allowed myself the luxury of taking my headscarf off and just sitting on the floor against the wall... it was a lot cooler down there, and I stopped feeling dizzy and stopped worrying about what it would look like, and meant I could stop stressing about falling off my chair with a dramatic crash... 😀.
I also just 'went bald' for the entire duration of the 2 days. Now that was clearly fine when I was with the other gorgeous ladies who had been through that themselves... but I was conscious at lunch and dinner that a few members of the public were glancing curiously at me, and there were a few whispered conversations... but actually... if they were either nosy or pitying me... actually I was ok with it, because it's not me that has an issue with being bald 😀.
It also turns out that I was the newest cancer newbie in attendance. I think one lady was still getting radiotherapy, but most people had stopped active treatment and had gone onto the long term drug phase.... but everyone was so lovely to me, and kept checking if I was feeling ok, and making sure I had water and snacks to keep me going throughout the day 😀😀.
The venue was also amazing, but I heartily laughed when I was discovered that I had been put into Room 101... it's like they knew me so well already... 😀😀😀.
Other stories from the course involved a complaint from a gentleman who's bedroom was near the breakout room where we had been talking about the menopause... supposedly we were too noisy for him!!!!
(As an aside, I do wonder if he had known the topic, if he would have dared to come in and complain with a group of 15 menopausal women face to face... hahahahaahahah 😀😀😀😀😀.)
Interestingly, in ways of dealing with the menopause, there are the practical suggestions about cool bedding, layers of clothes, water sprays etc... and it can also be chemically controlled through drugs... but there is also a new thing out about wearing a special magnet in your pants! Some ladies swear by them, so when I get to that stage, you never know... I might be attracting loose change and cutlery as I pass by dinner tables 😱
(The downside is that these magnets are so strong that they can wipe iPads and laptops if they are too close to your tummy... am not sure I fancy trying to explain that to work on a regular basis!!!)
On another note, I was also laughing when one of the ladies had suggested that we could collectively be seen like the Angelica Houston-led witches in the Ronald Dahl film.... you know... the one that has the line... "Put on your vvvvigs" in a strong Bavarian accent... (it is indeed the small things that make me laugh ❤️)
Coming home on Saturday night, I was exhausted. Despite having a couple of snoozes, the two days had been the longest I had been physically been awake for in a long time, and it was emotionally draining.... and still wouldn't have changed it for the world.
Sunday was mainly a chill day - managed a quick coffee catch up for about 90 minutes with my friend Delina, but literally the rest of the day was just a pj and snooze day... having now read the spoon theory it really does make sense.... basically everyone has a set amount of spoons that equate to energy levels each day. Sometimes you can save spoons up to have busy days, but sometimes if you use too many spoons, you don't have enough to keep going the next day. Great analogy... and this is where I need to learn to pace myself ... and I am 😀😀😀. Plus... the feeling of motion sickness was quite prevalent that day, so trying to remain as quiet and still as possible was definitely the order of the day!
Monday was a great day, as mum and I went back down to the new house, and helped my brother in law out by stripping wall paper. I took the smallest room in the house, on the basis I could sit on the toilet seat and not exert myself... (that's a horrible mental picture in itself by the way, so apologies for that!), and mum took the gigantic huge drop hall way... she had finished ALL of that in the time it took me to clear a third of the w.c.... was not impressed with myself. In my defence, it was the type of waterproof plastic paper that only came off in one inch squares top layer only, and then I had to clear the underlining paper... but talk about frustrating and literally getting under my finger nails!! (And not that I am competitive at all about finishing stuff... lol!)
Monday night was an excellent meal out with mum, auntie and cousin - lots of girl talk and laughter, and I felt so exhilarated and awake 😀😀😀, same for Tuesday when I went across to see my book club besties, where Michelle is due to give imminent birth to baby number two, whilst baby number one just took her first steps as we were watching her... amazing day to have fun around friends and babies ❤️❤️❤️. I also managed a fantastic catch up with the lovely Elaine too... I truly am lucky to have great friends 🤗.
Today (Wednesday), back off to the new house to do some mindfulness training (wallpaper stripping), and hopefully that means the entire house will be ready for quick sand down by Geo before he and Angie start painting it over the Easter holidays 🐣😀.
So... another week to look forward to next week... am going for a specialised personal fitness assessment which is appropriate to my stage of going through chemo, planning on a brief visit to work on Friday to catch up with my teams, I have family and friends coming over to stay at different points in the weekend, and then I have bloods on Monday and my next chemo next Wednesday too... so... as ever, onwards and upwards... have fun everyone! Xxx
Tuesday, 14 March 2017
Thursday, 9 March 2017
Week 15: Cycle 2, Week 1 - new discoveries and busy week...
Week 15: Thursday 02 March - Wednesday 08 March 2017
Starting this week's blog I thought I would recap on some of the stories I have missed over the last few weeks due to sickness....
The best one is when I told my niece I had cancer (and my sister was telling her 2 kids at the same time as they have a funny way of texting stuff when you don't want them finding out stuff lol)...
After reminding Codie I had talked about shaving my head a few weeks previous for a laugh, she did the whole "no... you didn't....", and I did the " yes... I did" discussion, I persuaded her to lift my pink wig off my head....
She approached with dramatic trepidation, and then when she lifted my wig off, I pounced on her laughing...
I then took her through the fact that my 'spotty boob' surgery at xmas time was actually cancer, but it was all removed now, but I was going to get some medicine that would make me feel a little bit sick on some days, but longer term was to make sure everything was completely safe in my body. Indeed... I had already had one treatment, and I had shaved my head in advance of my hair falling out as I really wanted to wear some of my new wigs. I told her I wanted to be honest with her, hence why I was telling her now, and it was ok if she had questions about anything. I then pointed out that I was sitting before her and I was fine, laughing and clearly still a "gorgeous drama queen 👸", to which she agreed... I did explain there would be days where I might not be able to see her, but that was normal, and we would all focus on a big family holiday maybe late summer.
Anyway, she basically told me that she loved me but she wasn't shaving her head in sympathy, but how cool were my wigs, and now I could spy on her... Kelsey and Kaleb were similarly impressed with the wigs too lol. 😜😋😛.
Mum went on to say that Codie would never have to worry about passing on any head lice now as there was nowhere for them to go on me, at which point we all had a good laugh and she asked if she could call me Captain Blue Boob... to which my mum said "no, you can call her Auntie Linz"... but actually the kids were dead cool about it and we can now make lots of inappropriate jokes, but they also know they can ask questions about anything now... much better this way 😀😀😀.
In fact, Codie asked if I could come to her school event with her the following week, as she was proud to show me off, and I could wear whatever wig, or scarf or be bald if I wanted as she was so proud of me, and my other niece Kelsey had posted on Facebook about how much she loved me and was proud of me too. Talk about tears in the eye moment, but in such a good way ❤️❤️❤️. But then it was like a watershed moment, and then I felt able to change my Facebook picture to a bald pic, and everything just felt right and natural. (2 words which I would never have used in relation to a bald pic of me 4 months ago though!!!)
Then there were the stories of my fellow inmates on the wards... having been in two weeks running I can now do a neat compare and contrast 😱. Basically I think I am just a grumpy and antisocial person now. Or maybe I just expect other patients to deal with nursing staff with a little bit better respect. 😡😡😡
Both times I seemed to be in with people who lived life to complain, had no sense of privacy or indeed diplomacy, and made nursing staff lives miserable. There seemed to be unrelenting demands for fresh water, orange juice, yoghurt, biscuits, toast, medication, checking of times, ringing of alarms because they want company...and being all types of incontinent and not owning up to it - in multiple common spaces (! 😭💩)... they then talked loudly to their visitors about how rubbish the staff were, and generally I was quite appalled.
Aside from the doctor that butchered my arm the first occasion (whilst apologising, to be fair), absolutely everyone was so lovely to me, and bent over backwards to make sure I had anything I needed or wanted at any time of day and night, so I just can't understand why people were so rude. Hats off to all the staff who remained professional and polite, as I think even I had images of stabbing some people!
There was one woman who had OCPD and complained about why she couldn't get an oxygen cylinder at home. The fact that she was heavy smoker and it would present a fire risk to have oxygen at home she just would not accept. Then, when the smoking cessation advisor came up, she was given short shrift for just wasting the woman's time because she had got to 75 without people interfering in HER life....
Then there was the woman who refused to eat any of the hospital food, and then told her family that the hospital were starving her...
Then there was the collective group of women who were in with me the first time round when I was in distress and crying... they gathered in a group of chairs immediately outside my curtains and proceeded to have a debate about what was wrong with me, could I not be quiet, and I must be either 'hoighty toighty' if I wasn't willing to have my curtains open to join in with them, or I was about to die...
Then there was the woman who was loudly discussing about having her lumbar puncture in the bed next to me, which although not her fault, really made me queasy with the whole needle thing.... she needed multiple attempts at having the lumbar puncture done whilst IN THE BED BESIDE ME, and the gauge of the needle and running commentary really were like something out of a horror film 😔.
But it wasn't all bad... there was the 91 year old who was a fount of all knowledge, the poor lady with dementia who couldn't remember that she had fallen and why she was in hospital, the 87 year old opera singer who regaled the ward with tales of the unexpected, and the lady who was on the ventilator who sounded like Darth Vader... and then there was the phantom poo-er 😷🤢😱. (I know I have chemo fog at present, but I know enough to know that that was definitely not me lol.)
The key thing I suppose is that they all insisted on watching crap tv at blaring volume on the communal TVs... but then proceeded to talk over the tv, and there was never any down time / peace. It's funny for me to say that as normally I am a great talker, joiner-in, and really diplomatic... but I just wanted peace to sleep... oh well... who says hospitals are feel-good places? Lol...
Finally, the biggest and greatest news this week is that mum has decided to take a sabbatical from her work to come and help care for me... and to give my husband a well deserved break... and also to give her an excuse to go on shopping sprees with me 😀.
All joking aside, I know she was completely stressed when I got hospitalised and could not be there immediately, she has dad's and her own health to think about too, and I was genuinely concerned about the weight of burden on Dave who is trying to do the work of 3 people as I lay lying about like a moaning zombie. I genuinely am blessed to have offers of help from family, friends, neighbours, colleagues ... and trust me I will suck you all dry as I know the only way to get through this is to rely on all offers of help and accept them all gratefully 😀. Sometimes my husband just has to realise that too...!
Anyway... this week been a bit rough on the old body - as I had expected it to be to be honest.
Thursday I was in bed all day and did nothing other than watch my work on TV, and then watch all the twitter and news feeds fill up my alerts... I have mixed feeling about watching work things when I don't know everything that's going on... but I get the funny feeling this is going to have to be a situation I will have to get used to over the next 4 months... I don't have my finger on the pulse, and any media coverage only ever presents one side of the issue and is never in full possession of all of the facts. I worry about my teams, their morale, what's happening, what I am going to go back to, if there is anything I can do to help... and the short answer is... there isn't.
I am not indispensable, the world does not revolve around me, but I just wish there was something more I could do at the moment. 🤔😱
Anyway... that had been Thursday's challenge up to the point where I had to give myself the tummy injection... I thought I had better read the instructions that came with it, despite my lovely nurse just saying "stick it in and plunge down"... and OMG what a feardie beastie I became!!! It's like the opening of a Robert Burns poem 'Tae a Moose"... there definitely WAS a panic in my breastie!!!
Anyway, after getting past the point of needle in my skin and thinking I was going to pass out, I did the needful and it all retracted as expected and I got it into the sharps bin. Even if the box does remind me of the minions, I don't think that doing this another 4 times after chemo ever really going to be my 'thing'. 😱😱😱
Thursday night, Friday and Saturday I effectively stayed in bed and didn't move much... had some quite bad vomiting again (although less than before), but was actually drinking water and juice so was keeping hydrated - the greater number of anti sickness tablets have kept actual vomit down, but queasiness and dizziness factors are up.
Other lovely side effects this time around have included feelings that some of my toe nails and nails are a bit loose, some very attractive rectal bleeding, and starting of more ulcers in my mouth. The ongoing snot blood clots in my nose are ever present, my eyes crust over, and this time it appears my eyesight is a bit blurry first thing in the morning. And my skin is going horrible scaly like. 🐲
Oh, and the medication tastes absolutely foul. It was bad before, but the extra ones I am on are supposed to be dissolved in my top lip and not swallowed. Well, they have a unique barf-like quality all in themselves, and then I have dissolvable steroids which don't dissolve, and antibiotics which tasted like I can only liken to feet! (And no, I don't have any kind of weird feet fetish in my past which I can compare to... just before anyone asks... 👹 weirdos lol.)
Also... my sense of smell is so acute that the smell of things when I open fridge door is enough to make me feel sick, and even when friends send pictures of food, sometimes I can go a little green around the gills... it is just rubbish.
Then I also have to decide if I can take my lactulose solution or not, as if no solid food in my stomach, that would then cause stomach cramps and excess acid, wind, reflux... omg the list is endless... I now wonder if it's just easier to sleep through all of this... and this is technically voluntary!!!
Poor mum and Codie visited Saturday afternoon bearing more gifts from multiple people and cuddles galore... but I think I just looked grey and could hardly speak. Combined with my clumpy baldness I felt terrible about the image I was presenting to Codie, but I spoke to mum afterwards and she is ok with it.... but still feel bad that she saw me like that - at least in hospital I was perky and awake!
Most of Sunday was in bed, but actually managed to get up and be vertical for food on Sunday evening which was first night I actually felt at least a little alive. 😀
Monday was a great day... felt I had completely turned a corner, and mum phoned me to ask if I was up for a wee day trip out... so I jumped at the chance 😀😀😀.
Managed to be driven to tram, get tram into town, went for coffee and a trip to bravissimo where I got a new jacket... and then I managed to (slow) walk the entire length of Princes Street, before long lunch and then back on tram direct to car. It felt like such an amazing achievement, and it was such a lovely looking spring day, that I was just so chuffed with myself... that's the most I have managed in 5 days 👩🏻🎤🤗😀.
Mum was very careful and kept making sure I had rests, and when I came back I basically sat on the couch and snoozed for a couple of hours, but I was so chuffed. I need wee milestones like this to make sure I keep active, as otherwise I am pretty sure it would be easy to sleep all day, every day. And I refuse to do that lol.
Tuesday was a great day, as mum and I went to visit my brother in law in the new family house, and actually managed to strip some wall paper for a few hours. My perspective on life has quite radically changed, as my sense of achievement of stripping wallpaper was probably disproportionate to the task... but I was awake, vertical, active, and felt like I was being useful.
When mum dropped me home I had planned to go for a bath, but instead just went straight up to bed at 7.30pm and slept right through until about 8am... so it was good to be active and have good solid night's sleep actually 😴.
Wednesday started off as uneventful... quick run to IKEA with Maureen as I had a notion for meatballs, and then did some errands on way back like picking up parcels from Post Office... all was going fine till I got home, and realised I needed to get something from summer house...
To cut a very long story short, the door was open, the stormy weather caught the door, and literally wrenched the door off its hinges, and I was half way up the garden when the door landed beside me, battered, bruised and properly torn 😱😱😱😱😱.
Rather than panic, I phoned mum who was due to come across anyway, thinking that if we could get tarpaulin and nails, we could make the door watertight as a temp fix overnight until weather better and something more permanent could be done.
Well, my family are like super heroes. Both my parents came across, as well as my brother and his family, and things were going swimmingly, with Danny also putting up my new washing line and spot lights in the rain and the dark whilst he was waiting for the glue to cure as it was clamped.... when the wind caught the door again, and this time the internal pane of glass cracked... talk about comedy farce 😜.
But... in the scale of things, it was actually all sealed back up and everything is secure, but it just doesn't look pretty at the moment. So long term I will get a new door, but Dave had a different view of the situation, whereas I think by that point, I just found it almost funny - I mean you just can't write the script for these kinds of things 😜.
Anyway it turned into a pizza party, which was then when I discovered that my sense of smell was so overcome that I had to go lock myself in the bathroom for a while, and let's just say that the end of this day was not necessarily one I wish to remember lol...
But positive notes... I had so many mini days out where I accomplished stuff, my family are great at swinging into action when there are mini emergencies, and it's an ever evolving voyage of discovery with new and weird side effects on a daily basis...
I am looking forward to next week, as I actually have my Headstrong counselling appointment, and I am lucky enough to be going to a Younger Women Together seminar at the weekend... so much writing to do for next week's blog....
Onwards and upwards... I just keep reminding myself that a sense of humour is everything 😋🤗😁 x
Starting this week's blog I thought I would recap on some of the stories I have missed over the last few weeks due to sickness....
The best one is when I told my niece I had cancer (and my sister was telling her 2 kids at the same time as they have a funny way of texting stuff when you don't want them finding out stuff lol)...
After reminding Codie I had talked about shaving my head a few weeks previous for a laugh, she did the whole "no... you didn't....", and I did the " yes... I did" discussion, I persuaded her to lift my pink wig off my head....
She approached with dramatic trepidation, and then when she lifted my wig off, I pounced on her laughing...
I then took her through the fact that my 'spotty boob' surgery at xmas time was actually cancer, but it was all removed now, but I was going to get some medicine that would make me feel a little bit sick on some days, but longer term was to make sure everything was completely safe in my body. Indeed... I had already had one treatment, and I had shaved my head in advance of my hair falling out as I really wanted to wear some of my new wigs. I told her I wanted to be honest with her, hence why I was telling her now, and it was ok if she had questions about anything. I then pointed out that I was sitting before her and I was fine, laughing and clearly still a "gorgeous drama queen 👸", to which she agreed... I did explain there would be days where I might not be able to see her, but that was normal, and we would all focus on a big family holiday maybe late summer.
Anyway, she basically told me that she loved me but she wasn't shaving her head in sympathy, but how cool were my wigs, and now I could spy on her... Kelsey and Kaleb were similarly impressed with the wigs too lol. 😜😋😛.
Mum went on to say that Codie would never have to worry about passing on any head lice now as there was nowhere for them to go on me, at which point we all had a good laugh and she asked if she could call me Captain Blue Boob... to which my mum said "no, you can call her Auntie Linz"... but actually the kids were dead cool about it and we can now make lots of inappropriate jokes, but they also know they can ask questions about anything now... much better this way 😀😀😀.
In fact, Codie asked if I could come to her school event with her the following week, as she was proud to show me off, and I could wear whatever wig, or scarf or be bald if I wanted as she was so proud of me, and my other niece Kelsey had posted on Facebook about how much she loved me and was proud of me too. Talk about tears in the eye moment, but in such a good way ❤️❤️❤️. But then it was like a watershed moment, and then I felt able to change my Facebook picture to a bald pic, and everything just felt right and natural. (2 words which I would never have used in relation to a bald pic of me 4 months ago though!!!)
Then there were the stories of my fellow inmates on the wards... having been in two weeks running I can now do a neat compare and contrast 😱. Basically I think I am just a grumpy and antisocial person now. Or maybe I just expect other patients to deal with nursing staff with a little bit better respect. 😡😡😡
Both times I seemed to be in with people who lived life to complain, had no sense of privacy or indeed diplomacy, and made nursing staff lives miserable. There seemed to be unrelenting demands for fresh water, orange juice, yoghurt, biscuits, toast, medication, checking of times, ringing of alarms because they want company...and being all types of incontinent and not owning up to it - in multiple common spaces (! 😭💩)... they then talked loudly to their visitors about how rubbish the staff were, and generally I was quite appalled.
Aside from the doctor that butchered my arm the first occasion (whilst apologising, to be fair), absolutely everyone was so lovely to me, and bent over backwards to make sure I had anything I needed or wanted at any time of day and night, so I just can't understand why people were so rude. Hats off to all the staff who remained professional and polite, as I think even I had images of stabbing some people!
There was one woman who had OCPD and complained about why she couldn't get an oxygen cylinder at home. The fact that she was heavy smoker and it would present a fire risk to have oxygen at home she just would not accept. Then, when the smoking cessation advisor came up, she was given short shrift for just wasting the woman's time because she had got to 75 without people interfering in HER life....
Then there was the woman who refused to eat any of the hospital food, and then told her family that the hospital were starving her...
Then there was the collective group of women who were in with me the first time round when I was in distress and crying... they gathered in a group of chairs immediately outside my curtains and proceeded to have a debate about what was wrong with me, could I not be quiet, and I must be either 'hoighty toighty' if I wasn't willing to have my curtains open to join in with them, or I was about to die...
Then there was the woman who was loudly discussing about having her lumbar puncture in the bed next to me, which although not her fault, really made me queasy with the whole needle thing.... she needed multiple attempts at having the lumbar puncture done whilst IN THE BED BESIDE ME, and the gauge of the needle and running commentary really were like something out of a horror film 😔.
But it wasn't all bad... there was the 91 year old who was a fount of all knowledge, the poor lady with dementia who couldn't remember that she had fallen and why she was in hospital, the 87 year old opera singer who regaled the ward with tales of the unexpected, and the lady who was on the ventilator who sounded like Darth Vader... and then there was the phantom poo-er 😷🤢😱. (I know I have chemo fog at present, but I know enough to know that that was definitely not me lol.)
The key thing I suppose is that they all insisted on watching crap tv at blaring volume on the communal TVs... but then proceeded to talk over the tv, and there was never any down time / peace. It's funny for me to say that as normally I am a great talker, joiner-in, and really diplomatic... but I just wanted peace to sleep... oh well... who says hospitals are feel-good places? Lol...
Finally, the biggest and greatest news this week is that mum has decided to take a sabbatical from her work to come and help care for me... and to give my husband a well deserved break... and also to give her an excuse to go on shopping sprees with me 😀.
All joking aside, I know she was completely stressed when I got hospitalised and could not be there immediately, she has dad's and her own health to think about too, and I was genuinely concerned about the weight of burden on Dave who is trying to do the work of 3 people as I lay lying about like a moaning zombie. I genuinely am blessed to have offers of help from family, friends, neighbours, colleagues ... and trust me I will suck you all dry as I know the only way to get through this is to rely on all offers of help and accept them all gratefully 😀. Sometimes my husband just has to realise that too...!
Anyway... this week been a bit rough on the old body - as I had expected it to be to be honest.
Thursday I was in bed all day and did nothing other than watch my work on TV, and then watch all the twitter and news feeds fill up my alerts... I have mixed feeling about watching work things when I don't know everything that's going on... but I get the funny feeling this is going to have to be a situation I will have to get used to over the next 4 months... I don't have my finger on the pulse, and any media coverage only ever presents one side of the issue and is never in full possession of all of the facts. I worry about my teams, their morale, what's happening, what I am going to go back to, if there is anything I can do to help... and the short answer is... there isn't.
I am not indispensable, the world does not revolve around me, but I just wish there was something more I could do at the moment. 🤔😱
Anyway... that had been Thursday's challenge up to the point where I had to give myself the tummy injection... I thought I had better read the instructions that came with it, despite my lovely nurse just saying "stick it in and plunge down"... and OMG what a feardie beastie I became!!! It's like the opening of a Robert Burns poem 'Tae a Moose"... there definitely WAS a panic in my breastie!!!
Anyway, after getting past the point of needle in my skin and thinking I was going to pass out, I did the needful and it all retracted as expected and I got it into the sharps bin. Even if the box does remind me of the minions, I don't think that doing this another 4 times after chemo ever really going to be my 'thing'. 😱😱😱
Thursday night, Friday and Saturday I effectively stayed in bed and didn't move much... had some quite bad vomiting again (although less than before), but was actually drinking water and juice so was keeping hydrated - the greater number of anti sickness tablets have kept actual vomit down, but queasiness and dizziness factors are up.
Other lovely side effects this time around have included feelings that some of my toe nails and nails are a bit loose, some very attractive rectal bleeding, and starting of more ulcers in my mouth. The ongoing snot blood clots in my nose are ever present, my eyes crust over, and this time it appears my eyesight is a bit blurry first thing in the morning. And my skin is going horrible scaly like. 🐲
Oh, and the medication tastes absolutely foul. It was bad before, but the extra ones I am on are supposed to be dissolved in my top lip and not swallowed. Well, they have a unique barf-like quality all in themselves, and then I have dissolvable steroids which don't dissolve, and antibiotics which tasted like I can only liken to feet! (And no, I don't have any kind of weird feet fetish in my past which I can compare to... just before anyone asks... 👹 weirdos lol.)
Also... my sense of smell is so acute that the smell of things when I open fridge door is enough to make me feel sick, and even when friends send pictures of food, sometimes I can go a little green around the gills... it is just rubbish.
Then I also have to decide if I can take my lactulose solution or not, as if no solid food in my stomach, that would then cause stomach cramps and excess acid, wind, reflux... omg the list is endless... I now wonder if it's just easier to sleep through all of this... and this is technically voluntary!!!
Poor mum and Codie visited Saturday afternoon bearing more gifts from multiple people and cuddles galore... but I think I just looked grey and could hardly speak. Combined with my clumpy baldness I felt terrible about the image I was presenting to Codie, but I spoke to mum afterwards and she is ok with it.... but still feel bad that she saw me like that - at least in hospital I was perky and awake!
Most of Sunday was in bed, but actually managed to get up and be vertical for food on Sunday evening which was first night I actually felt at least a little alive. 😀
Monday was a great day... felt I had completely turned a corner, and mum phoned me to ask if I was up for a wee day trip out... so I jumped at the chance 😀😀😀.
Managed to be driven to tram, get tram into town, went for coffee and a trip to bravissimo where I got a new jacket... and then I managed to (slow) walk the entire length of Princes Street, before long lunch and then back on tram direct to car. It felt like such an amazing achievement, and it was such a lovely looking spring day, that I was just so chuffed with myself... that's the most I have managed in 5 days 👩🏻🎤🤗😀.
Mum was very careful and kept making sure I had rests, and when I came back I basically sat on the couch and snoozed for a couple of hours, but I was so chuffed. I need wee milestones like this to make sure I keep active, as otherwise I am pretty sure it would be easy to sleep all day, every day. And I refuse to do that lol.
Tuesday was a great day, as mum and I went to visit my brother in law in the new family house, and actually managed to strip some wall paper for a few hours. My perspective on life has quite radically changed, as my sense of achievement of stripping wallpaper was probably disproportionate to the task... but I was awake, vertical, active, and felt like I was being useful.
When mum dropped me home I had planned to go for a bath, but instead just went straight up to bed at 7.30pm and slept right through until about 8am... so it was good to be active and have good solid night's sleep actually 😴.
Wednesday started off as uneventful... quick run to IKEA with Maureen as I had a notion for meatballs, and then did some errands on way back like picking up parcels from Post Office... all was going fine till I got home, and realised I needed to get something from summer house...
To cut a very long story short, the door was open, the stormy weather caught the door, and literally wrenched the door off its hinges, and I was half way up the garden when the door landed beside me, battered, bruised and properly torn 😱😱😱😱😱.
Rather than panic, I phoned mum who was due to come across anyway, thinking that if we could get tarpaulin and nails, we could make the door watertight as a temp fix overnight until weather better and something more permanent could be done.
Well, my family are like super heroes. Both my parents came across, as well as my brother and his family, and things were going swimmingly, with Danny also putting up my new washing line and spot lights in the rain and the dark whilst he was waiting for the glue to cure as it was clamped.... when the wind caught the door again, and this time the internal pane of glass cracked... talk about comedy farce 😜.
But... in the scale of things, it was actually all sealed back up and everything is secure, but it just doesn't look pretty at the moment. So long term I will get a new door, but Dave had a different view of the situation, whereas I think by that point, I just found it almost funny - I mean you just can't write the script for these kinds of things 😜.
Anyway it turned into a pizza party, which was then when I discovered that my sense of smell was so overcome that I had to go lock myself in the bathroom for a while, and let's just say that the end of this day was not necessarily one I wish to remember lol...
But positive notes... I had so many mini days out where I accomplished stuff, my family are great at swinging into action when there are mini emergencies, and it's an ever evolving voyage of discovery with new and weird side effects on a daily basis...
I am looking forward to next week, as I actually have my Headstrong counselling appointment, and I am lucky enough to be going to a Younger Women Together seminar at the weekend... so much writing to do for next week's blog....
Onwards and upwards... I just keep reminding myself that a sense of humour is everything 😋🤗😁 x
Thursday, 2 March 2017
Week 14: Cycle 1, Week 3 - back in hospital...
Week 14: Thursday 23 February - Wednesday 01 March 2017
Dah dah dah....
Drum roll please...
Clearly I am a jinx to myself 😜😜😜.
Literally 30 mins after I posted last week's blog, I went to bed early, thinking I was a bit cold and tired. Literally was shaking with chills, and could not get warm at all despite fleecy pjs, fleecy socks and fleecy dressing gown. Cut to an hour later, checking my temperature, I had exceeded the danger mark of 38 degrees celsius. Husband and I debated the merits of ear vs oral thermometers, but either way I phoned the cancer hotline again, and got told to report to A&E immediately... 🤒.
Unfortunately, as Dave had had a dram or two whilst watching the football, it was good that my neighbour was able to come to the rescue, and the unlikely band of 3 pitched up to A&E at 10.30pm...
Despite being referred there by the cancer hotline, they didn't know I was coming. I then got told there was a 4hr waiting time, at which point I explained that I had to be seen within the hour due to the chemo alert card...
So after 20 mins, I saw the triage nurse, who explained that she was still putting me at high risk, but may take up to 2 hrs to be seen... at which point I did mention the 1hr necessity, and then she took my obs... and whisked me through the back pronto...
Basically my heart rate had escalated to 140 (normal is between 60 and 80?), and my temperature was 38.9 degrees Celsius. Both are danger signs for any healthy person, but for someone going through chemo, turns out to be classified as life threatening. 😱
Anyway, got seen by a very dishy nurse, whose main redeeming quality was his ability to get a cannula in my arm without hurting me, and taking literally only seconds to do it. (Who knew a little prick with such swiftness could give such joy... ? Lol 😜🤗)
After that, bloods were taken and doctor came to see me - basically even before the blood tests came back, they were following the protocol for neutropenia sepsis.
By this point, I sent both Dave and Nic home, as I just knew I was never going to get home that night... just as well I had brought in my pre-packed hospital bag that all chemo patients are told to prepare. (Once a scout... lol)
So... just for the uninitiated, this is what I had.
I have taken the explanation from a cancer website, as I would rather people know the truth, rather than think I am either over playing it, or being a drama queen. I list this, as to be honest I think I had gone the other way in my own mind, as I certainly did not feel near death! (And just to clarify - I wasn't near death as it was all caught and treated early enough!!! 😀)
"What is ‘neutropenic sepsis’?
You may see or hear the term ‘neutropenic sepsis’ (also called ‘febrile neutropenia’). Sepsis is a whole-body reaction triggered by an infection. Neutropenic sepsis is a serious condition, which can be life-threatening so it must be treated urgently.
Your medical team will diagnose neutropenic sepsis if you have both of the following:
* a temperature above 38°C.
* a neutrophil count that is below 0.5.
It is also possible to have neutropenic sepsis without having a high temperature. This is more likely if your chemotherapy regime includes steroids as these can reduce fevers and hide infection. For this reason, your doctors may also carry out other checks. They might measure your heart rate, blood pressure, breathing rate, and kidney and liver function." (I got all these done lol)
So... what happened, was that I was put on broad spectrum antibiotics and then transferred to a private room in the High Dependency Unit. I don't necessarily think I needed the High Dependency bit, but what I didn't understand was that I did need infection control and could not be exposed to anybody else....
A good range of neutrophils (mentioned in above article) is greater than 2.0. It turns out that my neutrophil level was 0.03. Yup, you read that correctly: 0.03. 😱😱😱
What this meant was that I wasn't even allowed to use the communal toilet in case I picked up any residual bugs from anyone else... so I got my own personal potty in the shape of a very undignified commode... well, there has to be a first time for everything I suppose, and I am quickly learning again, that there is no personal dignity when you are sick.
Have to say though, having my own room was a complete luxury as it was uber peaceful and there was only 2 of us on the entire floor, so the nursing staff for the first 2 nights treated me like I was in a 5 star hotel!
I did have to undergo a barrage of tests, and basically there was no source of infection other than my body's own inability to produce white blood cells to deal with the chemo killing everything off. So this illness wasn't anything to do with my eating habits, or contact with other people, or even being sociable or going to work which caused any of this, in essence, my body is not used to being sick, and didn't know how to cope.
(Even if my sister does refuse to believe that lol!)
Indeed, I felt like a complete fraud, as aside from having a high temperature (which perversely made me feel chilled), I actually felt fine. Well, maybe apart from an ongoing issue with low blood pressure. But I didn't really feel that, and I was lucid, I was eating, I was bored... that was until they gave me medication.
Unfortunately, although the antibiotics were fine to treat the immediate signs of my body going into a form of shut down, the root of the problem was actually my lack of white blood cells. So they gave me an injection into my tummy to stimulate cell production. A little weird sensation but felt ok in immediate aftermath... but OMG... a few hours later I was curled up on my knees, and felt like howling at the moon. What they had not prepared me for, was spasms at the bottom of my spine... this was the drugs actually working, but the pain was so incredible that they gave me two lots of diazepam, and then progressed to giving me oral morphine...
I literally can't find the word to describe the pain, and to be honest, if childbirth is anything like this, then I am really glad I never had kids. I think I must be a real woose!
I think they were quite concerned about the back pain - basically I had to go get more X-rays done - there were some concerns that either I had damaged it with all the movement, or indeed, checking to see if any cancer had spread. (Thankfully neither of these turned out to be the case - it's just a known side of effect of the tummy jag!!!!!)
So the rest of Wednesday night and Thursday nights were spent in my own room, and I had the joys of a non-working tv that I was convinced had some kind of weird poltergeist in it - it would randomly turn itself on, and then go through channels and turn itself up.... with no one touching the remote control... which is why it possibly had no aerial lead connected... it was just weird and I am glad I had my audible book app on my phone lol... it doesn't pay to overthink these things. 👹😈🎃🤖👽
The only crappy thing that happened after my back pain subsided and I was dreaming on a morphine cloud, was they had to give me another tummy jag, this time as a blood thinner seeing as I was in hospital and not very active.... and OMG that was so painful. Indeed, having had to get 2 lots of these jags during my stay there, I now have 2 lovely bruises on my tummy from the warfarin injections only. All I will say is that my needle phobia is really being tested, and I think I am just going to be one big bruise after a while - they are going to have to go searching for non-bruised areas of skin for new needle pricks!!!
It was great when mum, dad and hubby came to visit - having been on my own all day, I did actually feel a bit lonely. But even they expressed surprise about how big and roomy my room was... and being a private space, I could make all the dodgy jokes, and give all the personal gross details of my stuff I liked without fear of offending anyone in the vicinity lol. (Didn't even manage to make my dad embarrassed or squeamish - hats off to him lol 😀😀😀.)
On the Friday, I had great hopes of getting home, as they had talked about moving me.... the doctor and oncologist had been up to see me and changed me from iv antibiotics 4 times a day, to oral tablets 3 times a day, and my anti sickness medication changed again to include one type which I just took once a day and left to dissolve under my gum... this was progress and I thought the end was in sight...
Alas, this was not meant to be. Instead I got transferred to a communal ward on the ground floor, as whilst I was out of the woods for infection control, I still needed medical supervision 😢.
As soon as I got taken into the communal ward, my heart sank. It was like a repeat of the week before... bad tv; loud and nosy old women; topped off by the staff warning me about one woman in particular who would drive me demented and I was just to ignore her... aaaaaaaaahhhhhhhhhhhhhhhhh!!!!!
Anyway... my lovely mother in law crossed all kinds of weird bus routes to come and spend the afternoon with me, and we had a great time chewing the fat, and then in the evening, my mum, my niece and hubby all came to see me too. Codie as ever had me in stitches with her stories and laughter... and this was the first time she had spent with me without me wearing a wig... so she was sitting on my bed with me and offered to 'share' her long hair with me... so she proceeded to drape her hair over my head as we took some silly selfies together 😀😀😀.
Overnight was another night of no sleep - a communal ward means lots of beeping machines, moaning zombies, and some random police presence due to a particularly volatile patient who had smuggled in bottles of vodka and was going ape... all pleasant aspects when trying to get some shut eye 😨. Also, I was still on regular observations through the night, 'just in case'. (It really is quite hard to sleep when the blood pressure cuff squeezes your arm, and the thermometer gets shoved in your ear lol!)
Saturday morning I asked if there was any chance of getting released that day... the repeated cries of "wait and see" were starting to chafe slightly. I mean, I felt great. I offered to help make the beds up, go to for the very last shower so I could get straight into my day clothes, and even when the Bed Manager was looking for spare beds on three occasions I offered to leave!!!
They kept me waiting ALL day.... mum and Codie had been for the 3-5pm shift and I was still chasing the staff nurse to ask if I could leave. I was by this point in my day clothes (unfortunately my fleecy sweater and no t-shirt - note to self for next time!), and I was hot and sweaty sitting about - although playing cards and dominoes for a few hours was good fun 😀. My bags were packed (x 3 by this point with all the extra goodies brought in), when finally the nurse came up with the great beacon of a green medical bag.....
... supposedly I had been given the all clear, BUT that pharmacy was closed, BUT if she could get enough drugs to get me over the night then I could go home.... success!!!
Anyway, long story short, got the drugs, I looked like some kind of addict and we stopped at the calorie laden McDonalds on the way home as I sucked in fresh air from the car window... I probably really did look like some kind of weirdo, but being stuck in hermetically sealed hospital definitely addles your brain! 👹
Unsurprisingly, I slept on Saturday night... and Sunday I felt so great I decided to do a quick run into the office to drop off laptop for further surgical work on it by IT. It does not make for easy remote working when things stop letting me dialling in - am sure it's like a conspiracy lol 👀. All was fine and I know I have that impetus to always be doing something... but I was free!!! I also went shopping for comfortable chemo clothes. Basically big Bridget Jones pants for when tummy bloats during week 1 with the drugs, and comfy trackies to wear when lounging. Any sense of style, panache or sense now going out the window as I now just want to be comfortable.... OMG I am descending into middle age already 😱😱😱😱. (I jest - I am fine with it all. Perspective rapidly changing these days lol... and Asda sells clothes for much cheapness!)
Monday morning was my planned pre-chemo blood with my favourite phlebotomist... she was exclaiming over the sad state of my arms so I had to give the 2 minute run down of doctor butchery and nursing saviours 😀. Thankfully these bloods got taken just fine, and I said goodbye in my usual cheery fashion - honestly, the whole process takes less than 5 mins in and out including making the next appointment!
Monday rest of day was quiet - fair bit of catching up on sleeping, although also had time to help neighbour with interview prep... as well as catching up with my brother and sister... my mind does need to be kept busy 😀😀😀.
As a point of note - since starting these shenanigans with surgery before xmas, I have now listened to all of the 7 unabridged Harry Potters... in some places multiple times if I have drifted off lol.
Tuesday was a quiet day - perversely I felt shattered - but I think this was the usual apprehension in preparing for chemo. I mean... Cycle 1 hadn't gone too well, had it? Although alas - hospital food previous week had made me put on 2lbs??? That clearly goes against the recent articles saying the hospital food terrible and non plentiful - I have never eaten so well ever.... and that's even with the article saying that St John's had one of the lowest cost bases!!!
Also... today was the day my head really really hurt with hair falling out. Proper pain when even placing my head on a pillow... I really do look the dying pheonix from Harry Potter (right before it re-spawns btw, not being gloomy lol). It's just really coming out in patches now, and I am definitely moulting more than my dogs ever do, and when I went for a bath, I hadn't realised that I had left hair from previous bath still in it!!!
(Sorry that seems really minging, but I don't generally leave tide marks when I go for baths, but it was from where I had leant my head on the edge of the bath, it's like being at the hairdressers and seeing all the fuzz on the floor and on the nape of your neck... there was just a lot of it...!)
Anyway... early to bed, as Wednesday was round 2.... and I think I was definitely in the mood for fighting with anyone and everyone who would have said a cross word to me... sometimes it pays to switch off technology, pull the duvet over your head and not speak lol 🥊
And... it all went fine. Cannula went in fine, drugs were mostly fine, and LOTS of preventative drugs through the IV system. Had to bathe my arm in warm water to help fluff up the veins, but they came up a peach and it was all over in 2 hours.
2 bags of drugs to take home with me this time... as well as my own sharps bucket. The only thing that is likely to induce me to vomit with fear. The jag I had to have in hospital I need to do 24 hrs after chemo exactly... and I have to give it to myself. Really... the whole phobia definitely being tested to its limits, but will grit my teeth. Or maybe pass out.
Got some photos of my chemo drugs - my word there ARE a lot of syringes that go into me.... no wonder I always need to pee after treatment lol.
Came home and slept for a bit - adrenaline only goes so far these days... made rookie mistake and took a steroid before bed so woke up in the small hours... but touch wood... so far so good.
Still trying to see the positives... tomorrow I get to learn to inject myself. Either way... going to be a learning day.
Loads more stories even from last week - but will save them till next week... I always think I write too much lol.
Till then peeps... 😀 x
Dah dah dah....
Drum roll please...
Clearly I am a jinx to myself 😜😜😜.
Literally 30 mins after I posted last week's blog, I went to bed early, thinking I was a bit cold and tired. Literally was shaking with chills, and could not get warm at all despite fleecy pjs, fleecy socks and fleecy dressing gown. Cut to an hour later, checking my temperature, I had exceeded the danger mark of 38 degrees celsius. Husband and I debated the merits of ear vs oral thermometers, but either way I phoned the cancer hotline again, and got told to report to A&E immediately... 🤒.
Unfortunately, as Dave had had a dram or two whilst watching the football, it was good that my neighbour was able to come to the rescue, and the unlikely band of 3 pitched up to A&E at 10.30pm...
Despite being referred there by the cancer hotline, they didn't know I was coming. I then got told there was a 4hr waiting time, at which point I explained that I had to be seen within the hour due to the chemo alert card...
So after 20 mins, I saw the triage nurse, who explained that she was still putting me at high risk, but may take up to 2 hrs to be seen... at which point I did mention the 1hr necessity, and then she took my obs... and whisked me through the back pronto...
Basically my heart rate had escalated to 140 (normal is between 60 and 80?), and my temperature was 38.9 degrees Celsius. Both are danger signs for any healthy person, but for someone going through chemo, turns out to be classified as life threatening. 😱
Anyway, got seen by a very dishy nurse, whose main redeeming quality was his ability to get a cannula in my arm without hurting me, and taking literally only seconds to do it. (Who knew a little prick with such swiftness could give such joy... ? Lol 😜🤗)
After that, bloods were taken and doctor came to see me - basically even before the blood tests came back, they were following the protocol for neutropenia sepsis.
By this point, I sent both Dave and Nic home, as I just knew I was never going to get home that night... just as well I had brought in my pre-packed hospital bag that all chemo patients are told to prepare. (Once a scout... lol)
So... just for the uninitiated, this is what I had.
I have taken the explanation from a cancer website, as I would rather people know the truth, rather than think I am either over playing it, or being a drama queen. I list this, as to be honest I think I had gone the other way in my own mind, as I certainly did not feel near death! (And just to clarify - I wasn't near death as it was all caught and treated early enough!!! 😀)
"What is ‘neutropenic sepsis’?
You may see or hear the term ‘neutropenic sepsis’ (also called ‘febrile neutropenia’). Sepsis is a whole-body reaction triggered by an infection. Neutropenic sepsis is a serious condition, which can be life-threatening so it must be treated urgently.
Your medical team will diagnose neutropenic sepsis if you have both of the following:
* a temperature above 38°C.
* a neutrophil count that is below 0.5.
It is also possible to have neutropenic sepsis without having a high temperature. This is more likely if your chemotherapy regime includes steroids as these can reduce fevers and hide infection. For this reason, your doctors may also carry out other checks. They might measure your heart rate, blood pressure, breathing rate, and kidney and liver function." (I got all these done lol)
So... what happened, was that I was put on broad spectrum antibiotics and then transferred to a private room in the High Dependency Unit. I don't necessarily think I needed the High Dependency bit, but what I didn't understand was that I did need infection control and could not be exposed to anybody else....
A good range of neutrophils (mentioned in above article) is greater than 2.0. It turns out that my neutrophil level was 0.03. Yup, you read that correctly: 0.03. 😱😱😱
What this meant was that I wasn't even allowed to use the communal toilet in case I picked up any residual bugs from anyone else... so I got my own personal potty in the shape of a very undignified commode... well, there has to be a first time for everything I suppose, and I am quickly learning again, that there is no personal dignity when you are sick.
Have to say though, having my own room was a complete luxury as it was uber peaceful and there was only 2 of us on the entire floor, so the nursing staff for the first 2 nights treated me like I was in a 5 star hotel!
I did have to undergo a barrage of tests, and basically there was no source of infection other than my body's own inability to produce white blood cells to deal with the chemo killing everything off. So this illness wasn't anything to do with my eating habits, or contact with other people, or even being sociable or going to work which caused any of this, in essence, my body is not used to being sick, and didn't know how to cope.
(Even if my sister does refuse to believe that lol!)
Indeed, I felt like a complete fraud, as aside from having a high temperature (which perversely made me feel chilled), I actually felt fine. Well, maybe apart from an ongoing issue with low blood pressure. But I didn't really feel that, and I was lucid, I was eating, I was bored... that was until they gave me medication.
Unfortunately, although the antibiotics were fine to treat the immediate signs of my body going into a form of shut down, the root of the problem was actually my lack of white blood cells. So they gave me an injection into my tummy to stimulate cell production. A little weird sensation but felt ok in immediate aftermath... but OMG... a few hours later I was curled up on my knees, and felt like howling at the moon. What they had not prepared me for, was spasms at the bottom of my spine... this was the drugs actually working, but the pain was so incredible that they gave me two lots of diazepam, and then progressed to giving me oral morphine...
I literally can't find the word to describe the pain, and to be honest, if childbirth is anything like this, then I am really glad I never had kids. I think I must be a real woose!
I think they were quite concerned about the back pain - basically I had to go get more X-rays done - there were some concerns that either I had damaged it with all the movement, or indeed, checking to see if any cancer had spread. (Thankfully neither of these turned out to be the case - it's just a known side of effect of the tummy jag!!!!!)
So the rest of Wednesday night and Thursday nights were spent in my own room, and I had the joys of a non-working tv that I was convinced had some kind of weird poltergeist in it - it would randomly turn itself on, and then go through channels and turn itself up.... with no one touching the remote control... which is why it possibly had no aerial lead connected... it was just weird and I am glad I had my audible book app on my phone lol... it doesn't pay to overthink these things. 👹😈🎃🤖👽
The only crappy thing that happened after my back pain subsided and I was dreaming on a morphine cloud, was they had to give me another tummy jag, this time as a blood thinner seeing as I was in hospital and not very active.... and OMG that was so painful. Indeed, having had to get 2 lots of these jags during my stay there, I now have 2 lovely bruises on my tummy from the warfarin injections only. All I will say is that my needle phobia is really being tested, and I think I am just going to be one big bruise after a while - they are going to have to go searching for non-bruised areas of skin for new needle pricks!!!
It was great when mum, dad and hubby came to visit - having been on my own all day, I did actually feel a bit lonely. But even they expressed surprise about how big and roomy my room was... and being a private space, I could make all the dodgy jokes, and give all the personal gross details of my stuff I liked without fear of offending anyone in the vicinity lol. (Didn't even manage to make my dad embarrassed or squeamish - hats off to him lol 😀😀😀.)
On the Friday, I had great hopes of getting home, as they had talked about moving me.... the doctor and oncologist had been up to see me and changed me from iv antibiotics 4 times a day, to oral tablets 3 times a day, and my anti sickness medication changed again to include one type which I just took once a day and left to dissolve under my gum... this was progress and I thought the end was in sight...
Alas, this was not meant to be. Instead I got transferred to a communal ward on the ground floor, as whilst I was out of the woods for infection control, I still needed medical supervision 😢.
As soon as I got taken into the communal ward, my heart sank. It was like a repeat of the week before... bad tv; loud and nosy old women; topped off by the staff warning me about one woman in particular who would drive me demented and I was just to ignore her... aaaaaaaaahhhhhhhhhhhhhhhhh!!!!!
Anyway... my lovely mother in law crossed all kinds of weird bus routes to come and spend the afternoon with me, and we had a great time chewing the fat, and then in the evening, my mum, my niece and hubby all came to see me too. Codie as ever had me in stitches with her stories and laughter... and this was the first time she had spent with me without me wearing a wig... so she was sitting on my bed with me and offered to 'share' her long hair with me... so she proceeded to drape her hair over my head as we took some silly selfies together 😀😀😀.
Overnight was another night of no sleep - a communal ward means lots of beeping machines, moaning zombies, and some random police presence due to a particularly volatile patient who had smuggled in bottles of vodka and was going ape... all pleasant aspects when trying to get some shut eye 😨. Also, I was still on regular observations through the night, 'just in case'. (It really is quite hard to sleep when the blood pressure cuff squeezes your arm, and the thermometer gets shoved in your ear lol!)
Saturday morning I asked if there was any chance of getting released that day... the repeated cries of "wait and see" were starting to chafe slightly. I mean, I felt great. I offered to help make the beds up, go to for the very last shower so I could get straight into my day clothes, and even when the Bed Manager was looking for spare beds on three occasions I offered to leave!!!
They kept me waiting ALL day.... mum and Codie had been for the 3-5pm shift and I was still chasing the staff nurse to ask if I could leave. I was by this point in my day clothes (unfortunately my fleecy sweater and no t-shirt - note to self for next time!), and I was hot and sweaty sitting about - although playing cards and dominoes for a few hours was good fun 😀. My bags were packed (x 3 by this point with all the extra goodies brought in), when finally the nurse came up with the great beacon of a green medical bag.....
... supposedly I had been given the all clear, BUT that pharmacy was closed, BUT if she could get enough drugs to get me over the night then I could go home.... success!!!
Anyway, long story short, got the drugs, I looked like some kind of addict and we stopped at the calorie laden McDonalds on the way home as I sucked in fresh air from the car window... I probably really did look like some kind of weirdo, but being stuck in hermetically sealed hospital definitely addles your brain! 👹
Unsurprisingly, I slept on Saturday night... and Sunday I felt so great I decided to do a quick run into the office to drop off laptop for further surgical work on it by IT. It does not make for easy remote working when things stop letting me dialling in - am sure it's like a conspiracy lol 👀. All was fine and I know I have that impetus to always be doing something... but I was free!!! I also went shopping for comfortable chemo clothes. Basically big Bridget Jones pants for when tummy bloats during week 1 with the drugs, and comfy trackies to wear when lounging. Any sense of style, panache or sense now going out the window as I now just want to be comfortable.... OMG I am descending into middle age already 😱😱😱😱. (I jest - I am fine with it all. Perspective rapidly changing these days lol... and Asda sells clothes for much cheapness!)
Monday morning was my planned pre-chemo blood with my favourite phlebotomist... she was exclaiming over the sad state of my arms so I had to give the 2 minute run down of doctor butchery and nursing saviours 😀. Thankfully these bloods got taken just fine, and I said goodbye in my usual cheery fashion - honestly, the whole process takes less than 5 mins in and out including making the next appointment!
Monday rest of day was quiet - fair bit of catching up on sleeping, although also had time to help neighbour with interview prep... as well as catching up with my brother and sister... my mind does need to be kept busy 😀😀😀.
As a point of note - since starting these shenanigans with surgery before xmas, I have now listened to all of the 7 unabridged Harry Potters... in some places multiple times if I have drifted off lol.
Tuesday was a quiet day - perversely I felt shattered - but I think this was the usual apprehension in preparing for chemo. I mean... Cycle 1 hadn't gone too well, had it? Although alas - hospital food previous week had made me put on 2lbs??? That clearly goes against the recent articles saying the hospital food terrible and non plentiful - I have never eaten so well ever.... and that's even with the article saying that St John's had one of the lowest cost bases!!!
Also... today was the day my head really really hurt with hair falling out. Proper pain when even placing my head on a pillow... I really do look the dying pheonix from Harry Potter (right before it re-spawns btw, not being gloomy lol). It's just really coming out in patches now, and I am definitely moulting more than my dogs ever do, and when I went for a bath, I hadn't realised that I had left hair from previous bath still in it!!!
(Sorry that seems really minging, but I don't generally leave tide marks when I go for baths, but it was from where I had leant my head on the edge of the bath, it's like being at the hairdressers and seeing all the fuzz on the floor and on the nape of your neck... there was just a lot of it...!)
Anyway... early to bed, as Wednesday was round 2.... and I think I was definitely in the mood for fighting with anyone and everyone who would have said a cross word to me... sometimes it pays to switch off technology, pull the duvet over your head and not speak lol 🥊
And... it all went fine. Cannula went in fine, drugs were mostly fine, and LOTS of preventative drugs through the IV system. Had to bathe my arm in warm water to help fluff up the veins, but they came up a peach and it was all over in 2 hours.
2 bags of drugs to take home with me this time... as well as my own sharps bucket. The only thing that is likely to induce me to vomit with fear. The jag I had to have in hospital I need to do 24 hrs after chemo exactly... and I have to give it to myself. Really... the whole phobia definitely being tested to its limits, but will grit my teeth. Or maybe pass out.
Got some photos of my chemo drugs - my word there ARE a lot of syringes that go into me.... no wonder I always need to pee after treatment lol.
Came home and slept for a bit - adrenaline only goes so far these days... made rookie mistake and took a steroid before bed so woke up in the small hours... but touch wood... so far so good.
Still trying to see the positives... tomorrow I get to learn to inject myself. Either way... going to be a learning day.
Loads more stories even from last week - but will save them till next week... I always think I write too much lol.
Till then peeps... 😀 x
Wednesday, 22 February 2017
Week 13: Cycle 1, Week 2 - taking stock...
Week 13: Thursday 16 - Wednesday 22 February 2017
So... just to avoid jumping straight into continuing where I left off last week, like any good soap opera, I have decided to take this episode off on a parallel storyline 😀.
I have realised it's been a few weeks (actually 5 😮) since I did a stock take of my current status of pains and ailments, so here goes.... done in my own imitable style lol... you have been warned 😋.
In terms of where I am pain wise / other updates this week...
I think that's covered everything... after discovering the joys of lactulose solution (better than laxido or fybrogel in terms of taste, quantity required and quality of product, I can now give an independent review lol), there are no issues with bowel, bladder or stomach thankfully 😀😀😀.
My appetite is to do little and often - so think I am ok in that arena too now.
So.... returning to the big drama that was the tail end of last week... the thing to remember as you read this - I am absolutely fine now, and can actually look back and laugh. 👌😜❤️
Thursday was not a great day. And that may even be a slight understatement.
(Yip, sometimes even a drama queen like me can be understated lol 😜.)
After a horrendous night, and literally feeling like I could quite happily roll over and die with the head and back pain, sheer exhaustion, not being able to keep anything down, the dry retching, the whole body and muscle pain from being sick, the chills and the fevers, the swollen stomach, the bloody snot clots from my nose.... I phoned the cancer treatment hotline. I also managed to stand on my scales to note that I had lost 5lbs in 3 days... I was pleasantly pleased for my diet, but clearly that was not what the hotline wanted to hear.
They slightly misrepresented my symptoms to the hospital, as I had explained my urine was still pink from the red chemo....that translated in their message as being blood in my urine, but aside from that, the service worked fast, and I was asked to attend the Acute Medical Unit at St Johns, preferably within the hour in case I needed emergency treatment.... keep that phrase in mind, when I then explain what actually happened in reality... 😜.
First off, the unit is located on the far side of the hospital, on the second floor. I had to stop for a rest half way there as I was quite knackered. Following the signs in the hospital, the name of the unit changed twice as we progressed along the corridor, and then there was no signage apart from Ward numbers once we actually got onto the second floor.
Once we worked out where we actually supposed to be, we got buzzed in and asked for my referral letter. Twice. Despite me saying that it had been via the cancer hotline just an hour previously.
They also asked I was there for EMA or PPA unit.... at which point I think I maybe wanted just to stab someone... 🤐😢😫. I mean wtf is with all the changing acronyms for someone who really just wants some kind of magic pill to make her feel better???
Then I got ushered to a bed, and what began as a very long day of testing and chatting began.
First off, after about 20 mins, I was seen by my key nurse. So I explained all my symptoms which I had explained on the phone, and then got my blood pressure, temperature and weight checked.
(At this point I sent Dave home - I had an impending spidey-sense that I was not going to be getting out in under an hour... and there was nothing for him to do other than pace the hospital waiting for me.)
After about another 20 mins, then the doctor arrived and asked me to tell her all my symptoms. At which point she took more notes, did the listening to my heart, chest, liver, kidneys, and did that hollow tap thing on various parts of my body. She then did the feeling and prodding all over my lower torso, and actually it transpired I had a really tender area over my gall bladder. Discovered that when I nearly hit the roof with the pain of her prodding her fingers in deep, whilst asking me to breathe in....
Anyway... after this she said that she wanted to send me for chest x ray, possibly an ultrasound, do a urine sample, do a mouth swab and get me fluids, anti sickness and painkillers, but the immediate thing was to get blood tests done asap.
So with her lovely Irish brogue, she then proceeded to butcher my arm. 🔪🔪🔪😰😰😰
She took 3 attempts (and about 20 minutes) at getting the cannula in, and it was so painful, that literally I sobbed in pain, and my whole body was convulsing. I tried to tell her that it didn't feel right - even through my fear of needles, I know when the cannulas are in, as I have had quite a few in my time. However, she kept stroking my arm, and apologising for hurting me, to the point where I think she was upset herself... so I then apologised to her for being so bad at getting needles in my arm... it was a vicious cycle.
However, when she then broke the news to me that she couldn't get blood out of the arm she had just knackered, and that was only going to be good for putting things into my arm, she then asked if it was ok to take blood from the other arm, but this time with a smaller needle... at which point I was really quite anxious... which maybe didn't help of course. But genuinely, so far in all this process and having surgery, I have never had any issues with anyone getting blood out of me, but this poor woman took yet another 15 minutes and 2 different locations to get blood out of my left arm... and physically drawing the blood was for the first time excruciatingly sore.
With the benefit of clear thinking now I am better, I am guessing that me being dehydrated and having chemo in my veins, as well as nerve ending pain will have contributed to all of this drama... but genuinely I don't think I have ever cried so loudly, and been in so much distress ever before. 😢
Anyway, once the torture was over, the curtains remained closed around my bed as they had decided I needed some privacy to calm down. My cell inmates were an interesting and nosy bunch...
I should point out at this stage, I was knackered from no sleep, really splitting headache, and I had some sensitivity to light. And I was dead dead grumpy. So having noisy and tactless fellow patients did really not improve my humour. And there was rubbish playing loudly on the tv too. As I said... really 😡 lol.
Then... after about another 25 mins, the senior doctor came in. She also asked me to give her a rundown on my symptoms. Turns out there was some concern I may have gall stones, so I had to go through more prodding and poking in the tender area... and yes, it was still sore 😢.
Anyway, she also went onto explain they were very worried about me not being able to keep anything down, so she needed to get the fluids into me, and I would have to be able to eat food and demonstrate I was not going to be sick before I could even think about going home. She also couldn't prescribe any drugs until they blood test results came back 😢.
So I offered to try tea and digestive biscuits.... but just in case, I also asked for a sick bowl...
Anyway, I have to say, that things started moving rapidly at that point - the senior registrar came in to see me, as did the on-call Oncologist and the pharmacist - all separately. At each point, I had to reiterate my symptoms, what drugs I had been taking (none for 2 days by that point) and which point I had practiced it to perfection and could cover it off in 5 key bullet points.
Basically they all agreed I needed anti sickness meds ASAP, and that going forward my chemo treatment needed to include longer course of steroids to help sustain my body, permanent anti sickness tablets through 4 months of chemo, and possible pain relief that would not interact with the other stuff. Oh, and the lactulose solution as all these tablets together have the added bonus of causing constipation. And we can't have that now, can we? 😜
Anyhow, I was finally allowed some drugs. Oral tablets, as well as through the cannula... 😢.
The tablets were fine, but I knew as soon as the drugs were going into my arm, there was something wrong - it was really painful going in. Like liquid fire. I did mention this to the nurse, who asked if the doctor had got the cannula in first time... so I had to say no...
Anyway, she said she would keep an eye on it, and actually put an extra bandage over it so I didn't have to worry about keeping my arm rigid.
So... next thing was that I was whisked off in a wheelchair for my X-ray (speedy jump the queue service if you are brought from a ward 😀).
Unfortunately I had missed lunch by this point, but Dave had swung by with rescue sandwich and lucozade for me... but interesting that I was supposed to eat before I got to leave and I didn't even get hospital lunch to test the theory!!
Good thing was that I managed to keep the sandwich down, but that wasn't quite enough to prove me well. The senior doctor came back and said that although absolutely the best place was for me to go home to avoid any extra infections from hospital, I just needed to persevere and get iv fluids in me... so that took a wee bit longer to arrange....
In the meantime,the ECG technician came and ran a trace on me, and the on duty senior doctor had changed over, so he also came by to ask about my symptoms and tell me what the next steps were.
On good news front, my bloods were fine, although my lymphocytes were a bit low and they thought I also had a viral infection.
Anyway, he then asked if I had any questions, and I said to him that my arm was really sore with the cannula in... at which point he looked at my arm and exclaimed that the iv fluids had to stop immediately (they had been running for over an hour by this point...). Turns out my cannula was not in right, and all of the iv fluid had gone into my tissue as opposed to my vein, and my upper arm had literally doubled in size without anyone noticing. I mean, I don't normally like to be petty and say "I told you so", but in this case I really felt I merited the right! 🤒
Anyway, the offending article was then quickly removed, and the relief was immediate. Happy days!!! ❤️❤️❤️
The only downside is that I then needed to lie flat with my arm elevated for a few hours until the liquid could start draining away and they could check for any adverse reactions.... so... realised at that point I would be staying for dinner....
After a few hours, I was feeling great. 😊
All the drugs had actually kicked in, I no longer looked grey, I felt I could even smile at my fellow inmates... right before I put my headphones on, put my skull cap over my eyes and listened to my audio book lol.
The only downside is that I found it really difficult to use my phone as my right arm was elevated and had to stay still, and it takes ages to text anything with just my left hand... I feel this may be something I need to develop given that anything they need to do to me will generally be on my right side due to dodgy lymph glands on other side...
I ended up having 3 course dinner in hospital, and it was quite tasty - I avoided the tapioca and semolina though. Reminded me too much of what I had seen in previous 24hrs!
As soon as I saw the magic green bag with my drugs I knew I was on the home stretch. The senior doctor came and gave me a hard look and asked if I was sure I was not going to be sick... and I basically I lied and said yes. To be truthful I think 3 courses had been a tad over adventurous given I had not eaten properly for a week, but there was no way I was planning on staying the night. I mean the staff are all lovely, but I just wanted to go home....
Anyway, finally got home at 8pm, 11hrs after arriving at the hospital for emergency treatment required within an hour lol.
Come Friday - I was a brand new woman. Felt like I could wear my pants outside my trousers, and maybe don a small cape. 👩🏻🎤😀. Oh the miracle of drugs 😀😀😀.
I was up and dressed by 8am, having had a great sleep for 6 solid hours, had breakfast, went a wee walk with the dogs (with a few breaks for energy levels), and kept all my food down, and then played catch up with all the messages I had received and basically ignored over the course of the previous week.
Saturday and Sunday were the same! Coffee and cake out with the neighbours one day, and then lunch out the next...
The only hiccup was that the completely amazing anti sickness meds can cause insomnia. And they have given them to me, a serial insomniac at the best of times. Oops.
Oh well, I am pretty sure we can get a concoction where everything will balance out eventually... 😀😀😀.
Rest of this week was excellent as I got my work laptop kick started, got back into the swing of things and even made it into the office to report for duty. Happy days... all's well that ends well this week.
There were a couple of other stories to share, but will save them for next week - have just realised that I am writing a novel here... but hey, this was started as my therapy activity and record of events... if no-one reads this far, then I am cool with that lol.
Just need to keep reminding myself... I can get through this.
And I most definitely will.
Super Linz 👩🏻🎤 - special power: humour, sarcasm and resilience lol x
So... just to avoid jumping straight into continuing where I left off last week, like any good soap opera, I have decided to take this episode off on a parallel storyline 😀.
I have realised it's been a few weeks (actually 5 😮) since I did a stock take of my current status of pains and ailments, so here goes.... done in my own imitable style lol... you have been warned 😋.
In terms of where I am pain wise / other updates this week...
- Boob is still blue. Even after surgery 8 weeks ago. And despite continual daily washing in the shower lol. I am now just disappointed that it is not luminous. Would save excessively bright lighting to read at night if I could have used it as a torch... (just joking 🤡🤡🤡)
- Both scars healed completely and I am now discovering the wonders of Bio-oil... if you believe the hype, it will make my scars magically 'disappear' 😀.
- My lymph node scar actually does show a 'divot' out of my sideways profile under my arm. It doesn't bother me - if I lose weight, maybe the rest of my skin / size will shrink to match.... and if I don't, then it will be one of those badges of honour I will wear with pride of my survival 😀😀😀.
- My left arm (lymph node one) had been feeling slightly better, but it appears that the chemo may now be attacking the healthy repair of nerve endings... so actually it is more tingly than before, and to actually touch it can hurt sometimes... it's a bit like if I run my hand down whole arm, the whole thing is like getting mini electrical shocks... so the quick answer is for me NOT to run my hand down my arm lol...
- Still having issues unscrewing some jar lids with my left hand as it requires too much effort.
- Because of the nerve damage, I am having some issues fully raising my arm above my head just now, and weirdly, sometimes my elbow doesn't want to straighten out either... am hoping that all these effects are temporary, as otherwise I am going to start looking like some kind of weird Quasimodo creature!
- Have a constant runny nose, which is more just an annoyance than anything else.
- I have discovered that my skin is drying out quite quickly as a result of the night sweats, and the chemo itself. For the first time ever, I am now actually regularly moisturising my skin all over - I should really have made more of an effort before I got to this age 😜. On the upside, the moisturiser is working in the main - but I have been offered 'cow udder' cream when things start getting worse. (Not a word of a lie btw - it was discovered by vets massaging cows udders... and it's quite expensive supposedly!!!)
- Had to cut my lovely long nails down short... it feels random to say this, but even my long nails touching anything or texting actually sent little flashes of pain up my fingers - this is neutropenia - nerve pain.
- Started to have on/off back pain. Having asked the support groups, this is quite common as it's the cells in my bone marrow trying to replenish themselves after the chemo attack of last week. I will of course have this verified when I go back to oncology for chemo next week... just to have the facts lol.
- Clearly last week's blog documented the various side effects of the chemo plus viral infection, but generally I am now keeping in good health, although I have discovered that if I go too long without food, my body physically starts shaking. It's not a good look. And I think I might get cranky too lol. 🤔
- Sleeping patterns are varying - if I get between 4 and 6 hrs sleep a night that's good... but if I get really tired through the day, I tend to have 15 minute power naps without much warning lol.
- Have started having much changed taste buds, and my mouth starting to dry out and feel quite sore. Discovered that trying to eat something with chillies in it, really not a good idea 😢. Normal mouthwash and mint imperials were also too strong for me, and gave an unfortunate burning sensation, so I will speak to hospital when I go there next week, but in the meantime I have ordered special mouthwash and toothpaste via Amazon, at to be honest, quite eye watering prices - £10 for a small bottle of gentle mouthwash for people undergoing chemo and £7 for the associated toothpaste!!!
- Perversely, since my head shave, noticeable fuzz had already grown back in the 9 days before I had chemo. I can't decide if my non chemo hair is almost blonde nowadays (I was mousy brown), or if it is actually coming back grey (silver highlights) naturally... but all this has shown me is how little hair I actually do have physically growing out of my scalp pre- chemo!
- My eyes are starting to get quite dry and crusty at times, and a few eyebrow hairs are now starting to come away when I cleanse my face or if I itch them (they are quite itchy - am guessing this is the beginning of the hair follicles disintegrating).
- My arms are starting to wear lovely shades of bruising at different intervals and spacing up both arms... the rest of this blog will explain why later lol. But in essence, I don't think I will be wearing vest t-shirts by choice anytime soon 😜.
I think that's covered everything... after discovering the joys of lactulose solution (better than laxido or fybrogel in terms of taste, quantity required and quality of product, I can now give an independent review lol), there are no issues with bowel, bladder or stomach thankfully 😀😀😀.
My appetite is to do little and often - so think I am ok in that arena too now.
So.... returning to the big drama that was the tail end of last week... the thing to remember as you read this - I am absolutely fine now, and can actually look back and laugh. 👌😜❤️
Thursday was not a great day. And that may even be a slight understatement.
(Yip, sometimes even a drama queen like me can be understated lol 😜.)
After a horrendous night, and literally feeling like I could quite happily roll over and die with the head and back pain, sheer exhaustion, not being able to keep anything down, the dry retching, the whole body and muscle pain from being sick, the chills and the fevers, the swollen stomach, the bloody snot clots from my nose.... I phoned the cancer treatment hotline. I also managed to stand on my scales to note that I had lost 5lbs in 3 days... I was pleasantly pleased for my diet, but clearly that was not what the hotline wanted to hear.
They slightly misrepresented my symptoms to the hospital, as I had explained my urine was still pink from the red chemo....that translated in their message as being blood in my urine, but aside from that, the service worked fast, and I was asked to attend the Acute Medical Unit at St Johns, preferably within the hour in case I needed emergency treatment.... keep that phrase in mind, when I then explain what actually happened in reality... 😜.
First off, the unit is located on the far side of the hospital, on the second floor. I had to stop for a rest half way there as I was quite knackered. Following the signs in the hospital, the name of the unit changed twice as we progressed along the corridor, and then there was no signage apart from Ward numbers once we actually got onto the second floor.
Once we worked out where we actually supposed to be, we got buzzed in and asked for my referral letter. Twice. Despite me saying that it had been via the cancer hotline just an hour previously.
They also asked I was there for EMA or PPA unit.... at which point I think I maybe wanted just to stab someone... 🤐😢😫. I mean wtf is with all the changing acronyms for someone who really just wants some kind of magic pill to make her feel better???
Then I got ushered to a bed, and what began as a very long day of testing and chatting began.
First off, after about 20 mins, I was seen by my key nurse. So I explained all my symptoms which I had explained on the phone, and then got my blood pressure, temperature and weight checked.
(At this point I sent Dave home - I had an impending spidey-sense that I was not going to be getting out in under an hour... and there was nothing for him to do other than pace the hospital waiting for me.)
After about another 20 mins, then the doctor arrived and asked me to tell her all my symptoms. At which point she took more notes, did the listening to my heart, chest, liver, kidneys, and did that hollow tap thing on various parts of my body. She then did the feeling and prodding all over my lower torso, and actually it transpired I had a really tender area over my gall bladder. Discovered that when I nearly hit the roof with the pain of her prodding her fingers in deep, whilst asking me to breathe in....
Anyway... after this she said that she wanted to send me for chest x ray, possibly an ultrasound, do a urine sample, do a mouth swab and get me fluids, anti sickness and painkillers, but the immediate thing was to get blood tests done asap.
So with her lovely Irish brogue, she then proceeded to butcher my arm. 🔪🔪🔪😰😰😰
She took 3 attempts (and about 20 minutes) at getting the cannula in, and it was so painful, that literally I sobbed in pain, and my whole body was convulsing. I tried to tell her that it didn't feel right - even through my fear of needles, I know when the cannulas are in, as I have had quite a few in my time. However, she kept stroking my arm, and apologising for hurting me, to the point where I think she was upset herself... so I then apologised to her for being so bad at getting needles in my arm... it was a vicious cycle.
However, when she then broke the news to me that she couldn't get blood out of the arm she had just knackered, and that was only going to be good for putting things into my arm, she then asked if it was ok to take blood from the other arm, but this time with a smaller needle... at which point I was really quite anxious... which maybe didn't help of course. But genuinely, so far in all this process and having surgery, I have never had any issues with anyone getting blood out of me, but this poor woman took yet another 15 minutes and 2 different locations to get blood out of my left arm... and physically drawing the blood was for the first time excruciatingly sore.
With the benefit of clear thinking now I am better, I am guessing that me being dehydrated and having chemo in my veins, as well as nerve ending pain will have contributed to all of this drama... but genuinely I don't think I have ever cried so loudly, and been in so much distress ever before. 😢
Anyway, once the torture was over, the curtains remained closed around my bed as they had decided I needed some privacy to calm down. My cell inmates were an interesting and nosy bunch...
I should point out at this stage, I was knackered from no sleep, really splitting headache, and I had some sensitivity to light. And I was dead dead grumpy. So having noisy and tactless fellow patients did really not improve my humour. And there was rubbish playing loudly on the tv too. As I said... really 😡 lol.
Then... after about another 25 mins, the senior doctor came in. She also asked me to give her a rundown on my symptoms. Turns out there was some concern I may have gall stones, so I had to go through more prodding and poking in the tender area... and yes, it was still sore 😢.
Anyway, she also went onto explain they were very worried about me not being able to keep anything down, so she needed to get the fluids into me, and I would have to be able to eat food and demonstrate I was not going to be sick before I could even think about going home. She also couldn't prescribe any drugs until they blood test results came back 😢.
So I offered to try tea and digestive biscuits.... but just in case, I also asked for a sick bowl...
Anyway, I have to say, that things started moving rapidly at that point - the senior registrar came in to see me, as did the on-call Oncologist and the pharmacist - all separately. At each point, I had to reiterate my symptoms, what drugs I had been taking (none for 2 days by that point) and which point I had practiced it to perfection and could cover it off in 5 key bullet points.
Basically they all agreed I needed anti sickness meds ASAP, and that going forward my chemo treatment needed to include longer course of steroids to help sustain my body, permanent anti sickness tablets through 4 months of chemo, and possible pain relief that would not interact with the other stuff. Oh, and the lactulose solution as all these tablets together have the added bonus of causing constipation. And we can't have that now, can we? 😜
Anyhow, I was finally allowed some drugs. Oral tablets, as well as through the cannula... 😢.
The tablets were fine, but I knew as soon as the drugs were going into my arm, there was something wrong - it was really painful going in. Like liquid fire. I did mention this to the nurse, who asked if the doctor had got the cannula in first time... so I had to say no...
Anyway, she said she would keep an eye on it, and actually put an extra bandage over it so I didn't have to worry about keeping my arm rigid.
So... next thing was that I was whisked off in a wheelchair for my X-ray (speedy jump the queue service if you are brought from a ward 😀).
Unfortunately I had missed lunch by this point, but Dave had swung by with rescue sandwich and lucozade for me... but interesting that I was supposed to eat before I got to leave and I didn't even get hospital lunch to test the theory!!
Good thing was that I managed to keep the sandwich down, but that wasn't quite enough to prove me well. The senior doctor came back and said that although absolutely the best place was for me to go home to avoid any extra infections from hospital, I just needed to persevere and get iv fluids in me... so that took a wee bit longer to arrange....
In the meantime,the ECG technician came and ran a trace on me, and the on duty senior doctor had changed over, so he also came by to ask about my symptoms and tell me what the next steps were.
On good news front, my bloods were fine, although my lymphocytes were a bit low and they thought I also had a viral infection.
Anyway, he then asked if I had any questions, and I said to him that my arm was really sore with the cannula in... at which point he looked at my arm and exclaimed that the iv fluids had to stop immediately (they had been running for over an hour by this point...). Turns out my cannula was not in right, and all of the iv fluid had gone into my tissue as opposed to my vein, and my upper arm had literally doubled in size without anyone noticing. I mean, I don't normally like to be petty and say "I told you so", but in this case I really felt I merited the right! 🤒
Anyway, the offending article was then quickly removed, and the relief was immediate. Happy days!!! ❤️❤️❤️
The only downside is that I then needed to lie flat with my arm elevated for a few hours until the liquid could start draining away and they could check for any adverse reactions.... so... realised at that point I would be staying for dinner....
After a few hours, I was feeling great. 😊
All the drugs had actually kicked in, I no longer looked grey, I felt I could even smile at my fellow inmates... right before I put my headphones on, put my skull cap over my eyes and listened to my audio book lol.
The only downside is that I found it really difficult to use my phone as my right arm was elevated and had to stay still, and it takes ages to text anything with just my left hand... I feel this may be something I need to develop given that anything they need to do to me will generally be on my right side due to dodgy lymph glands on other side...
I ended up having 3 course dinner in hospital, and it was quite tasty - I avoided the tapioca and semolina though. Reminded me too much of what I had seen in previous 24hrs!
As soon as I saw the magic green bag with my drugs I knew I was on the home stretch. The senior doctor came and gave me a hard look and asked if I was sure I was not going to be sick... and I basically I lied and said yes. To be truthful I think 3 courses had been a tad over adventurous given I had not eaten properly for a week, but there was no way I was planning on staying the night. I mean the staff are all lovely, but I just wanted to go home....
Anyway, finally got home at 8pm, 11hrs after arriving at the hospital for emergency treatment required within an hour lol.
Come Friday - I was a brand new woman. Felt like I could wear my pants outside my trousers, and maybe don a small cape. 👩🏻🎤😀. Oh the miracle of drugs 😀😀😀.
I was up and dressed by 8am, having had a great sleep for 6 solid hours, had breakfast, went a wee walk with the dogs (with a few breaks for energy levels), and kept all my food down, and then played catch up with all the messages I had received and basically ignored over the course of the previous week.
Saturday and Sunday were the same! Coffee and cake out with the neighbours one day, and then lunch out the next...
The only hiccup was that the completely amazing anti sickness meds can cause insomnia. And they have given them to me, a serial insomniac at the best of times. Oops.
Oh well, I am pretty sure we can get a concoction where everything will balance out eventually... 😀😀😀.
Rest of this week was excellent as I got my work laptop kick started, got back into the swing of things and even made it into the office to report for duty. Happy days... all's well that ends well this week.
There were a couple of other stories to share, but will save them for next week - have just realised that I am writing a novel here... but hey, this was started as my therapy activity and record of events... if no-one reads this far, then I am cool with that lol.
Just need to keep reminding myself... I can get through this.
And I most definitely will.
Super Linz 👩🏻🎤 - special power: humour, sarcasm and resilience lol x
Friday, 17 February 2017
Week 12: Cycle 1, Week 1... it's been a rollercoaster...
Week 12: Thursday 09 - Wednesday 15 February 2017
Start of this week was great - having prepared for all possible side effects, the first day post chemo was a breeze 😀😀😀😀😀.
I made sure to try eat little and often (mainly cheese and crackers, pringles and rice pudding lol), drank lots of water, took my steroids all before lunchtime to try avoid sleep deprivation, chilled out, watched tv, took dogs for a wee strolls, napped and everything was great.
Most of what I felt was just a bit dizzy, but could live with that. Indeed on the Thursday I had to nip back to the hospital to pick up my insurance form, that I even had a craving for McDonalds, and my lovely friend and neighbour Nic drove me like a regular girls' lunch out!
What did happen, was that about 6pm my body just slumped. Like my batteries had ran out. Couldn't lift my head off the pillow. Wasn't a bad thing, just a really weird sensation.
So... I went with my body and just slept... see, I can follow doctors orders lol 😀😀😜.
However, that night the real hot and cold sweats began. But weirdly my core temperature did not vary much between 36.8 and 37.2 degrees. My skin temperature on the other hand... well let's just say I didn't realise your skin could be polar opposite temperatures at the same point in time! 🤔😜😷.
(I do like my gadget thermometer though lol.)
What this meant though was that I did not get a good night sleep as I was so uncomfortable. Just as well I slept alone as even the dogs didn't want to be beside me that night! What I didn't realise though, was that this was going to the pattern for all week.... and broken sleep means harder to recover.... 😢.
Friday and Saturday I just felt hot and a bit queasy - thoughts of food were ok, but I didn't actually manage to eat that much. On upside, sure this will have done wonders for my diet... but with hindsight, I should have realised I should have logged stuff better.
Saturday and Sunday I also felt really grumpy - mainly due to lack of sleep, but again, hindsight tells me I was getting really dehydrated as I had developed a pounding headache, and you are not supposed to take paracetamol or ibuprofen with chemo in case it masks a fever... so had to keep double checking my temperature as I then desperately took 2 paracetamol for the headache....
Rolling around like a moaning zombie in bed for a couple of days is never going to be good for anyone, but I just felt really quite miserable.
Sunday was the day I got told that I may be emotional as a come down from the steroids, so was trying to be uber careful not to over-vex myself or fall out with my husband... not sure I really succeeded on that front, but didn't get teary until Sunday night, when basically for the first time I didn't think I could do this.
I was so distressed about the pain levels, and taking this medication which makes me feel sick voluntarily, where my whole body aches... I genuinely thought about quitting and not going back for the rest of the treatment. I mean... surgery got it all out, right?
However, after about half an hour of my own pity party, I washed my face and pulled myself together. I always knew it was going to be tough, and actually, how naive had I been to think that preparing for being ill, and actually being ill are two completely separate things???
Now I know I am probably being harsh on myself, but I genuinely expected more from myself. But maybe that's half my problem, but also half my strength. I do push myself, not because I am a glutton for punishment, but because I am focussing on the end goal 😀.
Anyway, come Monday I went for yet another bath to ease my bones (doesn't work btw lol), and I basically had yet another day stuck in bed. Didn't have any energy to get up apart from to go to the toilet, but the problem was that my body was weak, but my mind was racing. So tried to read, but couldn't concentrate on words, so listened to John Cleese on audible instead.
Food had progressed to ice lollies, frozen grapes, and still with cheese and crackers... but I have now completely gone off scrambled egg and all my green teas.... which is tragic 😫.
Tuesday I stayed in bed and listened to Carrie Fisher - actually didn't really enjoy that one. Maybe because I kept drifting off, I am judging it too harshly. Had a lovely surprise delivery from my 2 neighbourhood girls.... flowers and a teddy bear to cheer me up... in what was actually a really crap day, that really cheered me up 😀😀😀.
Wednesday still not having had enough sleep, I decided to go back to audible Harry Potter... and can I just say that although I had had difficulty in getting out of bed for several days due to fatigue... OMG I learned how fast I can move when the vomiting showed up. Genuinely never thought I would be seeing that beast again, as I had escaped all week and was impressed with the anti sickness drugs.
The issue was that I was told to take them for 5 days and stop.... I didn't take on board the fact that actually I could have just kept taking them...doh! 😫😫😫
Additionally, new pains were starting to develop, including that old wives favourite "a chill in my kidneys", and blowing my nose gave me light nose bleeds.
Anyway, although I am cutting into next week's blog, basically overnight on the Wednesday, myself and the toilet bowl became close friends once again, and early hours of morning I tried to eat crackers in case that would help settle stomach. It didn't. So I phoned the cancer treatment hotline and got referred to hospital for assessment. Without spoiling next week's content... ultimately I turned out to be fine. 😀😀😀
Anyway... lessons to be learned from all things this week... I know what to expect from chemo going forwards, I know the general balance of how my moods will be, and I need to make sure I record food and drink I am taking in to make sure it's enough.
On a slightly different tangent, the online groups are good at making jokes at our own expense.... although I started to worry when one lady wrote, "Sometimes a fart is not just a fart ladies....". This started a whole new level of paranoia in me. I mean, I am a lady. I don't do that at any point in time... and to think it may be more....???
That will be a bit crap then... (yip, ALL poo puns are intended lol).
To be fair, I have not been afflicted that way, but makes me think that maybe i should start investing in Tena Ladies or something? Or maybe invest in a butt plug? Or gastric hose?
Oh well, on all of those bum notes, I leave this blog, and leave the hospital trip tale till next week...
But be assured I am fine, back in good humour and hoping that this upcoming week will be better.
I have no immune system this week coming, and my hair should fall out... so will document with interest and share all next week lol. 😀 x
Start of this week was great - having prepared for all possible side effects, the first day post chemo was a breeze 😀😀😀😀😀.
I made sure to try eat little and often (mainly cheese and crackers, pringles and rice pudding lol), drank lots of water, took my steroids all before lunchtime to try avoid sleep deprivation, chilled out, watched tv, took dogs for a wee strolls, napped and everything was great.
Most of what I felt was just a bit dizzy, but could live with that. Indeed on the Thursday I had to nip back to the hospital to pick up my insurance form, that I even had a craving for McDonalds, and my lovely friend and neighbour Nic drove me like a regular girls' lunch out!
What did happen, was that about 6pm my body just slumped. Like my batteries had ran out. Couldn't lift my head off the pillow. Wasn't a bad thing, just a really weird sensation.
So... I went with my body and just slept... see, I can follow doctors orders lol 😀😀😜.
However, that night the real hot and cold sweats began. But weirdly my core temperature did not vary much between 36.8 and 37.2 degrees. My skin temperature on the other hand... well let's just say I didn't realise your skin could be polar opposite temperatures at the same point in time! 🤔😜😷.
(I do like my gadget thermometer though lol.)
What this meant though was that I did not get a good night sleep as I was so uncomfortable. Just as well I slept alone as even the dogs didn't want to be beside me that night! What I didn't realise though, was that this was going to the pattern for all week.... and broken sleep means harder to recover.... 😢.
Friday and Saturday I just felt hot and a bit queasy - thoughts of food were ok, but I didn't actually manage to eat that much. On upside, sure this will have done wonders for my diet... but with hindsight, I should have realised I should have logged stuff better.
Saturday and Sunday I also felt really grumpy - mainly due to lack of sleep, but again, hindsight tells me I was getting really dehydrated as I had developed a pounding headache, and you are not supposed to take paracetamol or ibuprofen with chemo in case it masks a fever... so had to keep double checking my temperature as I then desperately took 2 paracetamol for the headache....
Rolling around like a moaning zombie in bed for a couple of days is never going to be good for anyone, but I just felt really quite miserable.
Sunday was the day I got told that I may be emotional as a come down from the steroids, so was trying to be uber careful not to over-vex myself or fall out with my husband... not sure I really succeeded on that front, but didn't get teary until Sunday night, when basically for the first time I didn't think I could do this.
I was so distressed about the pain levels, and taking this medication which makes me feel sick voluntarily, where my whole body aches... I genuinely thought about quitting and not going back for the rest of the treatment. I mean... surgery got it all out, right?
However, after about half an hour of my own pity party, I washed my face and pulled myself together. I always knew it was going to be tough, and actually, how naive had I been to think that preparing for being ill, and actually being ill are two completely separate things???
Now I know I am probably being harsh on myself, but I genuinely expected more from myself. But maybe that's half my problem, but also half my strength. I do push myself, not because I am a glutton for punishment, but because I am focussing on the end goal 😀.
Anyway, come Monday I went for yet another bath to ease my bones (doesn't work btw lol), and I basically had yet another day stuck in bed. Didn't have any energy to get up apart from to go to the toilet, but the problem was that my body was weak, but my mind was racing. So tried to read, but couldn't concentrate on words, so listened to John Cleese on audible instead.
Food had progressed to ice lollies, frozen grapes, and still with cheese and crackers... but I have now completely gone off scrambled egg and all my green teas.... which is tragic 😫.
Tuesday I stayed in bed and listened to Carrie Fisher - actually didn't really enjoy that one. Maybe because I kept drifting off, I am judging it too harshly. Had a lovely surprise delivery from my 2 neighbourhood girls.... flowers and a teddy bear to cheer me up... in what was actually a really crap day, that really cheered me up 😀😀😀.
Wednesday still not having had enough sleep, I decided to go back to audible Harry Potter... and can I just say that although I had had difficulty in getting out of bed for several days due to fatigue... OMG I learned how fast I can move when the vomiting showed up. Genuinely never thought I would be seeing that beast again, as I had escaped all week and was impressed with the anti sickness drugs.
The issue was that I was told to take them for 5 days and stop.... I didn't take on board the fact that actually I could have just kept taking them...doh! 😫😫😫
Additionally, new pains were starting to develop, including that old wives favourite "a chill in my kidneys", and blowing my nose gave me light nose bleeds.
Anyway, although I am cutting into next week's blog, basically overnight on the Wednesday, myself and the toilet bowl became close friends once again, and early hours of morning I tried to eat crackers in case that would help settle stomach. It didn't. So I phoned the cancer treatment hotline and got referred to hospital for assessment. Without spoiling next week's content... ultimately I turned out to be fine. 😀😀😀
Anyway... lessons to be learned from all things this week... I know what to expect from chemo going forwards, I know the general balance of how my moods will be, and I need to make sure I record food and drink I am taking in to make sure it's enough.
On a slightly different tangent, the online groups are good at making jokes at our own expense.... although I started to worry when one lady wrote, "Sometimes a fart is not just a fart ladies....". This started a whole new level of paranoia in me. I mean, I am a lady. I don't do that at any point in time... and to think it may be more....???
That will be a bit crap then... (yip, ALL poo puns are intended lol).
To be fair, I have not been afflicted that way, but makes me think that maybe i should start investing in Tena Ladies or something? Or maybe invest in a butt plug? Or gastric hose?
Oh well, on all of those bum notes, I leave this blog, and leave the hospital trip tale till next week...
But be assured I am fine, back in good humour and hoping that this upcoming week will be better.
I have no immune system this week coming, and my hair should fall out... so will document with interest and share all next week lol. 😀 x
Wednesday, 8 February 2017
Week 11(b): Chemo and gene testing...
End of Week 11: Wednesday 08 February 2017
Well this was the big chemo and gene testing day... I was both curious and nervous at the same time. I was also actually upbeat, but quite calm within myself. Go figure lol.
Mum and I headed across to Howden Centre early, to grab a cup of tea and to complete the genetics questionnaire. Trying to work out everyone on both sides of my extended family who may ever have had any type of cancer, how old they were when they were diagnosed, where they were treated and if / when they died was really quite taxing - especially when it went back to my great grandparents generation if possible!!!
Anyway, form duly completed (got to love a good bit of paperwork!), we headed to the genetics appointment. Randomly it was being held within the maternity unit at the hospital. I guess like most places of work, trying to book meeting / consultation rooms is at a premium, but I am definitely getting to see more departments of the hospital each time I visit 😀.
We were met by a Genetics Counsellor and trainee. They asked me what I understood of the referral, and were pleasantly surprised that I seemed to know so much.
(As an aside, why do people ask you what you know before they just explain stuff? Is it a test? Is it to save time? Is it a comfort factor for them to see how much they have to / are able to tell you? As another aside... they clearly don't know me, my research and 'need to know' everything tendencies lol.)
So we ran through the whole scenario, and what the whole process was for. Basically, given my type of cancer, and my age, I meet the criteria for being tested for specific genes. Compiled with my family history, they may look for additional genes with the whole purpose of establishing if there is any genetic mutation or distortion.
The reasons for doing so are many. First off, it may give a definitive reason as to why I developed my type of cancer. Supposedly I am too young to be have been in receipt of any potential environmental factors to have built up in my body to cause cancer, and they already know it is not hormonal. However, equally the tests may come back that getting cancer was just one of those random 'luck of the draw' things that happen in life.
Secondly, if anything does come back from the test, then it may impact on my cancer treatment plan. Thirdly, it may have potential implications for my family members.
Of course, the testing itself may come back as negative for anything. The counsellor was quite clear in saying that they only find a positive result in about 15% of cases. Most of the time the results are a distinct negative for any mutations, and in some cases they are inconclusive. What that means is that sometimes they can find altered genes, but don't actually know what is altered, or why, or what it does. If that turns out to be the case, they do not make any medical recommendations on my treatment plan.
The counsellor then asked how I would feel about certain aspects... effectively what they are going to be looking for is the BRCA 1, BRCA2 and RAD51 gene. These are genes which may show a pre-disposition to both breast and ovarian cancers.
I was quite upfront and said I had already researched the various possibilities, and aside from potentially ending up with a barbie-like body, I would opt for elective surgery to remove everything. This is on the basis that I never want to have to go through chemo again, I want to minimise the possibility of ever getting any other cancer, and I want to be able to live the rest of my life worried about the possibility of recurrence, or secondary cancers.
I was also honest and said that I was very pragmatic about these things, but in life as I am at work, I take a risk based approach to these types of thing. That means that if I ended up having any additional surgery, I was still hoping to be sliced, diced and sorted within the next 12 months.
Although mum did point out that clearly the results may still be negative, and the counsellor did agree that we were talking hypothetically, the counsellor also did say it was good to walk through all the possibilities now when I am well, of sound mind, and not having to make snap judgements when I am potentially under the sick feeling of chemo.
Don't get me wrong. I also know perfectly well she was also assessing if I was potentially loony, just after free body morphing operations free on the NHS, attention seeking, or indeed going to crumble at the first sign of trouble. Hopefully I am none of them. But who knows what she wrote on my notes afterwards...
Anyway... after all of this, we then did a family tree - which she drew out long hand on graph paper with various symbols - really fascinating to watch actually.... although throughout it I had to practically force her to take my completed questionnaire as she is clearly a visual person, rather that a form person lol 😜.
(I can swing both ways in that regards, so actually I am easy either way lol.)
The whole session was absolutely fascinating... aside from the fact I also learned my mum had been stabbed as a child! Will definitely return to THAT story at a later date!!!
After all of this chat, I was then formally asked if I wanted to proceed with the gene testing. Although I couldn't actually work out who wouldn't proceed at this point, I gave both my formal consent and a small vial of blood.
Interestingly, they have explained that looking for mutations is a bit like looking for a spelling mistake in the entire Bible, so I am not quite sure how this is all going to work out, but I guess she was trying to manage my expectations. Results will take up to 12 weeks and she will phone me directly with the results. (I am impatient and I don't want letters going astray in the post lol.). She then laughed and said if she had not contacted me by then, I should phone to chase her... but she just had a feeling I had already mentally scheduled the call in diary anyhow... see... she was getting to know me 😀😀😀.
After this session it was a quick bite to eat before chemo session - supposedly it's good to eat and drink before hand, partly in case you are sick, partly to help things circulate faster, and also fluid and warmth keeps your veins plump and easy to access 🤔.
Anyway, entering the chemo unit, I clearly caused confusion by shaving my head. They didn't recognise me lol. However after 5 mins, my lovely nurse came out to get me and take mum and I through to the lounge area.
It was actually really busy - more than the planned 5 in for treatment, so it was a bit of a squash. Once I got settled, I took iPad, colouring book, mints, water and tissues out, and mum sat beside me as my blood pressure, temp and weight were all checked. I got to reiterate my name, date of birth and address on multiple occasions, but that's because each drug has to be dispensed and cross checked - hats off to the NHS for the thoroughness though!
I have to say, the worst part was actually getting the cannula into my arm. I cried 😢.
My veins were really good and plump, but the cannula going into the vein over the boney part of my wrist was REALLY sore. There was no brave Linz at that point.
However, once it was in and taped into place, I calmed down and even got mum to take a picture to mark the big occasion. At this point after 10 mins I was already roasting hot, so the skull cap had to come off to let my temperature cool a little - the baldness thing really good for when I overheat!!!
(With hindsight my temperature had gone up with the whole fear / pain of cannula thing... but I will try get over that next time.)
Then my nurse came back with a tray full of LOTS of syringes. And I mean LOADS...
First off was a flush through for my veins ~ 5 mins
Second one was the steroids ~ 10 mins
Third one was anti sickness ~ 10 mins
Fourth one was chemo drug 1 - fluorouracil ~ 15 mins
Fifth one was chemo drug 2 - epirubicin ~ 25 mins
Sixth one was chemo drug 3 - cyclophosphamide ~ 20 mins
Seventh one was another flush through ~ 5 mins
Now in between these times, my nurse also had to deal with a couple of other patients who were having either trouble finding veins, or dealing with one poor man whose nose would not stop bleeding... but I have to say the whole nursing team are fantastic.
Also, between my mum sitting playing cards with me (I think she let me win a lot lol), getting a foot massage, chatting to the nurses and the lady next to me, actually the whole experience went by quite quickly. I do think I *may* have been the loudest patient they have had in that day, but I think I can say that everyone was kept amused with various shared jokes and anecdotes. (It was not that I ended up doing a stand up comedy act btw, even despite my theatrical leanings 😀😀😀.)
The chemo itself was not painful. Just weird sensations. My nurse was really good at taking me through each one as she was injecting it, and telling me what to expect.
So the chemo 1 drug made me go a bit flushed in the face initially but that passed after about a minute, the chemo 2 drug made me feel slightly dizzy and like I wanted to go to the toilet (it irritates the bladder and turns pee pink!), and the chemo 3 drug runs cold, and produces a horrible medically, metallic taste at the back of my nose / throat - quite unlike anything I have tasted / experienced before. But that's where the bags of mints came in handy 😀👌.
After the treatment had finished, I did the first thing everyone does... went to the loo. And yip, it was bright pink 😜.
I got a goodie bag of drug to take home with me - steroids and two types of anti sickness drugs, as well as a large box of laxative solution... it's a sexy combination, but hey, it's all going to be worth it in the end.
I actually felt great, so went off at a jaunty pace back to the car after wishing everyone a merry goodbye and thank you... indeed felt so good, I even persuaded mum to go via Marks and Sparks for some tasty food for me...
Into the evening, I also felt completely wired... that will be the steroid effect... but did mean I got to see many episodes of the Gilmore Girls.... aside from that... nothing much more to add from my first chemo experience... it wasn't as bad as I had prepared for, so long may that continue!
First one down... only 5 more to go 😀😀😀😀😀. Till next week peeps x
Well this was the big chemo and gene testing day... I was both curious and nervous at the same time. I was also actually upbeat, but quite calm within myself. Go figure lol.
Mum and I headed across to Howden Centre early, to grab a cup of tea and to complete the genetics questionnaire. Trying to work out everyone on both sides of my extended family who may ever have had any type of cancer, how old they were when they were diagnosed, where they were treated and if / when they died was really quite taxing - especially when it went back to my great grandparents generation if possible!!!
Anyway, form duly completed (got to love a good bit of paperwork!), we headed to the genetics appointment. Randomly it was being held within the maternity unit at the hospital. I guess like most places of work, trying to book meeting / consultation rooms is at a premium, but I am definitely getting to see more departments of the hospital each time I visit 😀.
We were met by a Genetics Counsellor and trainee. They asked me what I understood of the referral, and were pleasantly surprised that I seemed to know so much.
(As an aside, why do people ask you what you know before they just explain stuff? Is it a test? Is it to save time? Is it a comfort factor for them to see how much they have to / are able to tell you? As another aside... they clearly don't know me, my research and 'need to know' everything tendencies lol.)
So we ran through the whole scenario, and what the whole process was for. Basically, given my type of cancer, and my age, I meet the criteria for being tested for specific genes. Compiled with my family history, they may look for additional genes with the whole purpose of establishing if there is any genetic mutation or distortion.
The reasons for doing so are many. First off, it may give a definitive reason as to why I developed my type of cancer. Supposedly I am too young to be have been in receipt of any potential environmental factors to have built up in my body to cause cancer, and they already know it is not hormonal. However, equally the tests may come back that getting cancer was just one of those random 'luck of the draw' things that happen in life.
Secondly, if anything does come back from the test, then it may impact on my cancer treatment plan. Thirdly, it may have potential implications for my family members.
Of course, the testing itself may come back as negative for anything. The counsellor was quite clear in saying that they only find a positive result in about 15% of cases. Most of the time the results are a distinct negative for any mutations, and in some cases they are inconclusive. What that means is that sometimes they can find altered genes, but don't actually know what is altered, or why, or what it does. If that turns out to be the case, they do not make any medical recommendations on my treatment plan.
The counsellor then asked how I would feel about certain aspects... effectively what they are going to be looking for is the BRCA 1, BRCA2 and RAD51 gene. These are genes which may show a pre-disposition to both breast and ovarian cancers.
I was quite upfront and said I had already researched the various possibilities, and aside from potentially ending up with a barbie-like body, I would opt for elective surgery to remove everything. This is on the basis that I never want to have to go through chemo again, I want to minimise the possibility of ever getting any other cancer, and I want to be able to live the rest of my life worried about the possibility of recurrence, or secondary cancers.
I was also honest and said that I was very pragmatic about these things, but in life as I am at work, I take a risk based approach to these types of thing. That means that if I ended up having any additional surgery, I was still hoping to be sliced, diced and sorted within the next 12 months.
Although mum did point out that clearly the results may still be negative, and the counsellor did agree that we were talking hypothetically, the counsellor also did say it was good to walk through all the possibilities now when I am well, of sound mind, and not having to make snap judgements when I am potentially under the sick feeling of chemo.
Don't get me wrong. I also know perfectly well she was also assessing if I was potentially loony, just after free body morphing operations free on the NHS, attention seeking, or indeed going to crumble at the first sign of trouble. Hopefully I am none of them. But who knows what she wrote on my notes afterwards...
Anyway... after all of this, we then did a family tree - which she drew out long hand on graph paper with various symbols - really fascinating to watch actually.... although throughout it I had to practically force her to take my completed questionnaire as she is clearly a visual person, rather that a form person lol 😜.
(I can swing both ways in that regards, so actually I am easy either way lol.)
The whole session was absolutely fascinating... aside from the fact I also learned my mum had been stabbed as a child! Will definitely return to THAT story at a later date!!!
After all of this chat, I was then formally asked if I wanted to proceed with the gene testing. Although I couldn't actually work out who wouldn't proceed at this point, I gave both my formal consent and a small vial of blood.
Interestingly, they have explained that looking for mutations is a bit like looking for a spelling mistake in the entire Bible, so I am not quite sure how this is all going to work out, but I guess she was trying to manage my expectations. Results will take up to 12 weeks and she will phone me directly with the results. (I am impatient and I don't want letters going astray in the post lol.). She then laughed and said if she had not contacted me by then, I should phone to chase her... but she just had a feeling I had already mentally scheduled the call in diary anyhow... see... she was getting to know me 😀😀😀.
After this session it was a quick bite to eat before chemo session - supposedly it's good to eat and drink before hand, partly in case you are sick, partly to help things circulate faster, and also fluid and warmth keeps your veins plump and easy to access 🤔.
Anyway, entering the chemo unit, I clearly caused confusion by shaving my head. They didn't recognise me lol. However after 5 mins, my lovely nurse came out to get me and take mum and I through to the lounge area.
It was actually really busy - more than the planned 5 in for treatment, so it was a bit of a squash. Once I got settled, I took iPad, colouring book, mints, water and tissues out, and mum sat beside me as my blood pressure, temp and weight were all checked. I got to reiterate my name, date of birth and address on multiple occasions, but that's because each drug has to be dispensed and cross checked - hats off to the NHS for the thoroughness though!
I have to say, the worst part was actually getting the cannula into my arm. I cried 😢.
My veins were really good and plump, but the cannula going into the vein over the boney part of my wrist was REALLY sore. There was no brave Linz at that point.
However, once it was in and taped into place, I calmed down and even got mum to take a picture to mark the big occasion. At this point after 10 mins I was already roasting hot, so the skull cap had to come off to let my temperature cool a little - the baldness thing really good for when I overheat!!!
(With hindsight my temperature had gone up with the whole fear / pain of cannula thing... but I will try get over that next time.)
Then my nurse came back with a tray full of LOTS of syringes. And I mean LOADS...
First off was a flush through for my veins ~ 5 mins
Second one was the steroids ~ 10 mins
Third one was anti sickness ~ 10 mins
Fourth one was chemo drug 1 - fluorouracil ~ 15 mins
Fifth one was chemo drug 2 - epirubicin ~ 25 mins
Sixth one was chemo drug 3 - cyclophosphamide ~ 20 mins
Seventh one was another flush through ~ 5 mins
Now in between these times, my nurse also had to deal with a couple of other patients who were having either trouble finding veins, or dealing with one poor man whose nose would not stop bleeding... but I have to say the whole nursing team are fantastic.
Also, between my mum sitting playing cards with me (I think she let me win a lot lol), getting a foot massage, chatting to the nurses and the lady next to me, actually the whole experience went by quite quickly. I do think I *may* have been the loudest patient they have had in that day, but I think I can say that everyone was kept amused with various shared jokes and anecdotes. (It was not that I ended up doing a stand up comedy act btw, even despite my theatrical leanings 😀😀😀.)
The chemo itself was not painful. Just weird sensations. My nurse was really good at taking me through each one as she was injecting it, and telling me what to expect.
So the chemo 1 drug made me go a bit flushed in the face initially but that passed after about a minute, the chemo 2 drug made me feel slightly dizzy and like I wanted to go to the toilet (it irritates the bladder and turns pee pink!), and the chemo 3 drug runs cold, and produces a horrible medically, metallic taste at the back of my nose / throat - quite unlike anything I have tasted / experienced before. But that's where the bags of mints came in handy 😀👌.
After the treatment had finished, I did the first thing everyone does... went to the loo. And yip, it was bright pink 😜.
I got a goodie bag of drug to take home with me - steroids and two types of anti sickness drugs, as well as a large box of laxative solution... it's a sexy combination, but hey, it's all going to be worth it in the end.
I actually felt great, so went off at a jaunty pace back to the car after wishing everyone a merry goodbye and thank you... indeed felt so good, I even persuaded mum to go via Marks and Sparks for some tasty food for me...
Into the evening, I also felt completely wired... that will be the steroid effect... but did mean I got to see many episodes of the Gilmore Girls.... aside from that... nothing much more to add from my first chemo experience... it wasn't as bad as I had prepared for, so long may that continue!
First one down... only 5 more to go 😀😀😀😀😀. Till next week peeps x
Tuesday, 7 February 2017
Week 11: Preparing for chemo - 'take two'...
Week 11: Thursday 02 - Wednesday 08 February 2017
OMG... having re-read last week's blog I promised myself that I would not be a raging banshee this week lol. 😜
So will be light, breezy, and observationally interesting (well, that's my aim anyhow lol).
Covering the last week, Thursday I managed to get myself out of bed, as I had got a phone call to say my new wig was ready... so went in to choose between shades 19 and 20... and basically I went for a slight barbie-doll look 😀😀😀. It's long, it's highlighted and it looks ok whilst wearing my glasses lol. (An important requirement if I can't wear contact lenses and may end up like Mr Magoo!)
This was actually the first day that Dave had been vertical too - basically we had drawn up barriers in the house and it was the equivalent of wearing hazmat suits, whilst living in separate sides of the house. The poor puppies had such divided loyalties about which one of us they wanted to be beside (but I think I won more of the attention though lol!).
The effort of a day trip out fairly took its toll though, and by Thursday afternoon I was lying back on the sofa, groaning like a zombie - headaches, shivers, mood all over the place - the whole thing was just ridiculous. However in an effort to keep busy and awake, I have managed to get through another audible book this week - woo hoo for book club homework lol. 🤓
Friday we went over to see my mother in law as it was her 70th birthday. Had great fun holding my new baby niece - it was even funnier when she pooped on Dave - through her babygro - who knew there could be super poo????
(Perversely that just made me laugh - but clearly I was in desperate need of a good laugh - bad Linz lol 😈.)
Didn't feel very well on Friday afternoon - ended up realising that whilst I am probably over the sickness bug, I am now suffering from a double whammy of withdrawal symptoms from coming off the contraceptive pill. 😫
To set the context of why I include this here, is that because I am about to start chemo, I was advised to stop taking any hormone-linked medication... well that all seemed a good precaution, even though my cancer is not hiormone related... so I did as the surgeon and oncologist had recommended.
What they failed to tell me what a depressed, manic, upset, headachey, bloated, anxious and generally sick person I would suddenly become!
I can laugh with hindsight now that I know WHY I was feeling like that... but at the time, I could not understand why I was so teary! I thought I was dealing ok with my diagnosis and treatment plan, but all it ended up it was 'just' the worse case of PMS ever 😨😨😨.
(Without making anyone blush or be ill - basically the pills I have been taking for a long long time meant I never really had mood swings or anything else to do with having periods - only weight gain about 10 years ago - I thought they were wonderful!!!)
Anyway, once I understood that, I actually felt ok. It's not cancer stress. Just me being hormonal. But oh, what deep joy for when chemo brings on the menopause... I can now possibly understand talk about women flying into murderous rages.... wonder if that counts as mitigating circumstances in a court of law? Hmmm best not find out I suppose lol. 😜
Saturday saw me home alone and going into deep cleaning mode again. This was partly to clean the house of the sick bugs, but also because one of my poor pups had also been ill. Very ill. Very messy. 🤔💩🤢.
So I spent 6 hrs (yes 6hrs!) cleaning my carpets. And then another couple of hours changing the bedding in all rooms. And disinfecting all door handles and bannisters. And double checking that the cooker was still clean from week previous, and re-cleaning all the bathrooms. I do think I suffer from / enjoy OCD when it comes to my levels of clean lol. Made me absolutely knackered, but it was good therapy for the soul, and quietened my mind.
It also gave me some down time to catch up with various support groups online - there are some really interesting articles out there - there are now real discussions taking place about the big data issues emerging out of breast cancer research, and actually there is now a big piece of work linking those who have cancer ending up with quite significant mental health issues.
(That's not me getting my excuses in early by the way - I do find the whole topic absolutely fascinating! Linking 'cancer' and 'mental health' in any google search brings up a myriad of results, but underpinned by medical advice available on Macmillan, Cancer Research and the Breast Cancer Care websites.)
The support groups are really good for allowing me to speak to women who have actually been through, or are currently going through the exact same diagnosis and treatment plan as me. There are still elements of the unknown which I am scared about, and there are certainly a whole spectrum of side effects and reactions - but I guess I just have to wait and see what lucky mix I will get... however I am still planning on being a model patient and breezing through this with a positive attitude and a smile on my face.... (ok - sometimes it may be a little like a rictus grin, but I will rock it either way lol.)
One of the best articles I read though, was the inspirational one about celebrities who have had breast cancer and lived to tell the tale... special hats off to Dame Maggie Smith who continued to film Harry Potter whilst getting chemo!!!
(Supposedly being bald made getting her wig and make up on so much easier ❤️)
http://www.huffingtonpost.co.uk/2014/09/16/celebrity-breast-cancer-survivors_n_5803146.html?ncid=engmodushpmg00000006
Sunday was a great day out with Mum and my niece... knew I was maybe going to be a little nervous before bloods and big head shave, so was just lovely to have a good laugh, inappropriate conversations and lots of cuddles with Codie. As for making the craft sock / fake coconut teddies... well, those will be moments of laughter which will stick with me for a long time. Along with Codie's face when we dug out the DVD of my dad's 50th... Codie would have been 3, and we had captured the outtakes of her singing "happy birthday"...
As they say, for most things there is MasterCard, but then there was Codie's face... priceless 😀❤️😀.
Monday was a trip to see my new BFF - the phlebotomy nurse at the GP surgery. She was surprised to see me so soon, but after I explained the whole sickness thing, she empathised and then whisked a tourniquet on opposite arm from last week whilst she did her vampire-esque role on me.
All was going so well, and I thought she said she was finished... so I turned my head back round and then gasped as I saw the needle was still half sticking out my arm... I am not ashamed to admit that my stomach did somersaults and I felt a bit grey!!! Thankfully I did not pass out and make a scene though, and after a minute or two managed to compose myself to say I look forward to seeing her in 3 weeks time - I applaud myself on the professional recovery, without fainting lol. 😇
Got home in time to get ready for my big head shave... my friend Fiona came across to keep me company (without me knowing that she had a real fear about watching it!!!), and then Karyn arrived with the big clippers...
Honestly, what a hoot we all had. What could very well have been a traumatic episode with tears and snotters, instead was filled with laughter as I was styled with a Mohican, and then property scalped... although I now know that when my hair grows back, I could so do many things with it 😀😀😀.
The level of conversation ranged from what would happen with all my hair and was it ALL going to fall out (yes), and did I need the off cuts to make wigs for other parts of my body... (the answer was "errrr, no thanks" lol).
It also made me wonder... what do I do with make up / foundation? I mean, I don't wear a lot of makeup that often, but with a bald head, where do I start and stop? Do I take it all over my scalp? Or stop and leave a tide mark??? See the serious issues I will now need to consider!!! (Once I stop laughing...)
We also had a serious debate about what shampoo to use. In the shower on Monday morning, I became acutely aware that I will no longer require hair thickening shampoo... or will I? See, then it might just give me a thick scalp... and I can't even picture what that would look like!!!
Although, having now 'braved the shave', I can actually make jokes about myself looking like Uncle Fester from the Addams Family. (That analogy was actually borrowed from one of my new support group buddies, but is so funny I had to apply to myself too!)
I did decide to post my pictures on a closed group on Facebook, as I wanted everybody to know that I was not scared of what I was going through, and that whilst it would never have been my first choice, cancer does not have to be doom and gloom... my funky pink wig is testament to that. 😀😀😀
I also think that it's great that my nearest and dearest can see fit to tease me already about my baldness.... my mum offered to wax and polish it, along with one of my friends, and after telling my husband that it felt like a Brillo pad, he disputed it and then said it was more akin to a cleaning head brush for cleaning DVD's and subsequent got out one of Xbox games and polished it against my fuzzy head 😜😋😀.
(Random aside... I actually thought my scalp would be completely smooth. It's not! Instead it's a little prickly, and when I rub my scalp it feels like rubbing velvet material in the wrong direction? It's the best description I can come up with just now lol. Also, I hadn't appreciated how chilly my scalp gets, even sitting in the house... I feel all drafts!!! Thank goodness for my chemo skull caps lol.)
The other thing I was perversely pleased at, is the fact that I actually have quite a good looking scalp. (Professional hairdressing opinion by Karyn too 😀.) It turns out that it is completely smooth and round, no scars, bumps or blemishes, and I don't have big sticky out ears either... so on the whole... I stand by a previous comment that I could make the perfect snooker ball now 🎱.
Tuesday was supposed to be a day of chilling, instead I went out with a very dear friend who basically allowed me to indulge in a lunch of everything which I am now going to be banned from eating for the next 6 months 😀.
Oh yeah... that's another buggeration factor. When I got all the chemo prep information, I also got a list of things I can't eat. Basically I have to avoid raw meat, runny eggs, pate, soft or blue cheeses, probiotic yoghurts and anything like chorizo and salami. Oh, and takeaways... and re-heating any kind of food.
I am guessing this is all because of risk of infection / unpasteurised/ risk of bad hygiene if food not prepared fresh by my own fair hands... but jeez... who knew it was going to be so limiting!!! (To be fair I don't eat any of those things in any quantity at the best of times, but now I know they will be banned, I want them all, at once, now!! So I did... 😋)
The other buggeration factor appears that most people on the support network have confirmed that they put on weight with this particular type of chemo treatment. Between 1 and 3 stones to be exact. So whilst that's not exactly music to my ears, I am not going to stress about it, and I may just live in my poncho for the next wee while.
However I did take heart when one lady told me that her oncologist had said it was not the chemo making her stuff cakes into her mouth.... (clearly that's a tough love type lol).
To be fair, I think the thing is that the steroids can cause fluid retention, and the fatigue maybe means that usual physical activity is hard to continue. There is also the whole appetite thing... steroids make you really hungry, but the mouth ulcers may make you not want to eat... so then it's a balancing act with protein shakes, and getting enough calories to re-build your cells after they have been killed off by the chemo. Then there is the thing about your tastebuds changing and everything tasting metallic, and the medical team also saying that eat whatever you fancy whenever you are able to compensate for the days you might not eat at all...
So basically folks... I may become an blimp. Or I may become waif like. Or I might just stay the same. Any of those options I will deal with. Just don't judge me if I eat like a pig from a trough one day, and then abandon all food for several days... it is not an eating disorder... just chemo lol. 🤒😷🤐
Slightly off at a tangent, but there have been a few things I have considered this week - it was World Cancer Day on Saturday... and I bought some wrist bands... but I then didn't want to participate in it. Maybe because sometimes it's easier being a supporter when you are on the outside looking in? Or maybe it's because this is all still new to me, and I don't feel like part of a club? Who knows... but actually, it just made me a bit uncomfortable.
Normally I am great joiner-in-er, but I couldn't this week. Then I had feelings of guilt as I didn't want to join in, and I didn't shave my head to raise funds for cancer research either... which I know is completely irrational. However, am not going to worry about it, I just find it intriguing that I am clearly benefiting from advances in research for my illness... but not quite ready to help contribute to that yet. Who knew?
However, I also had my spirits lifted with the many gifts and cards I continue to receive from everyone... flowers to brighten my rooms and lift my mood, the wonderful and multiple bags of mint sweeties to get me through the tough tasting times ahead, and my gorgeous 'journey bag*' which has all the supplies a girl could want to see me through the next 6 months....
(* Journey bag was so well researched!! Mini wine bottles to celebrate my milestones, Vaseline for my dry lips, red lipstick for the days I need some colour, antiseptic wipes to keep my OCD at bay, colouring book and pencils to keep me busy, chocolate for emergencies, bonjela for the mouth ulcers, hankies in case I want to cry, some fancy soap to treat my skin, a green smoothie as I am currently obsessed with them, and some amazing books to keep me chuckling throughout the next 6 months!)
Anyway... I ended this week on a high. Chemo day deserves its own blog entry, and I write this at 2am on Wednesday morning anyhow.
I have had so many lovely messages wishing me well for tomorrow (as well as many messages from weirdo friends and family telling me I am beautiful bald - am sure that qualifies for some kind of fetish club somewhere lol)... but sincerely I feel like the luckiest girl alive. 👌👌👌
I really would not be able to get through this without everyone's love and support. And everyone is bearing with me when I have my drama queen and hissy fit moments too.
(Well most of people are - other people just tell me to calm down and chill the feck out lol)
I really do have the best friends and family. ❤️❤️❤️
Random final fact of the day, I treated myself earlier, so I also have another new digital thermometer - not a rectal one, in case anyone queries btw. It's a fancy in the ear one, with disposable caps. I think I am going to become obsessed with taking my own temperature... (currently 36.8 degrees 😀). Maybe I will save up and get blood pressure cuff and other medical gadgets too.... oh I could learn to play doctors and nurses... oh wait... that has different connotations.... pmsl....
Well... on that very graphic note... time to leave this blog I think!!
OMG... having re-read last week's blog I promised myself that I would not be a raging banshee this week lol. 😜
So will be light, breezy, and observationally interesting (well, that's my aim anyhow lol).
Covering the last week, Thursday I managed to get myself out of bed, as I had got a phone call to say my new wig was ready... so went in to choose between shades 19 and 20... and basically I went for a slight barbie-doll look 😀😀😀. It's long, it's highlighted and it looks ok whilst wearing my glasses lol. (An important requirement if I can't wear contact lenses and may end up like Mr Magoo!)
This was actually the first day that Dave had been vertical too - basically we had drawn up barriers in the house and it was the equivalent of wearing hazmat suits, whilst living in separate sides of the house. The poor puppies had such divided loyalties about which one of us they wanted to be beside (but I think I won more of the attention though lol!).
The effort of a day trip out fairly took its toll though, and by Thursday afternoon I was lying back on the sofa, groaning like a zombie - headaches, shivers, mood all over the place - the whole thing was just ridiculous. However in an effort to keep busy and awake, I have managed to get through another audible book this week - woo hoo for book club homework lol. 🤓
Friday we went over to see my mother in law as it was her 70th birthday. Had great fun holding my new baby niece - it was even funnier when she pooped on Dave - through her babygro - who knew there could be super poo????
(Perversely that just made me laugh - but clearly I was in desperate need of a good laugh - bad Linz lol 😈.)
Didn't feel very well on Friday afternoon - ended up realising that whilst I am probably over the sickness bug, I am now suffering from a double whammy of withdrawal symptoms from coming off the contraceptive pill. 😫
To set the context of why I include this here, is that because I am about to start chemo, I was advised to stop taking any hormone-linked medication... well that all seemed a good precaution, even though my cancer is not hiormone related... so I did as the surgeon and oncologist had recommended.
What they failed to tell me what a depressed, manic, upset, headachey, bloated, anxious and generally sick person I would suddenly become!
I can laugh with hindsight now that I know WHY I was feeling like that... but at the time, I could not understand why I was so teary! I thought I was dealing ok with my diagnosis and treatment plan, but all it ended up it was 'just' the worse case of PMS ever 😨😨😨.
(Without making anyone blush or be ill - basically the pills I have been taking for a long long time meant I never really had mood swings or anything else to do with having periods - only weight gain about 10 years ago - I thought they were wonderful!!!)
Anyway, once I understood that, I actually felt ok. It's not cancer stress. Just me being hormonal. But oh, what deep joy for when chemo brings on the menopause... I can now possibly understand talk about women flying into murderous rages.... wonder if that counts as mitigating circumstances in a court of law? Hmmm best not find out I suppose lol. 😜
Saturday saw me home alone and going into deep cleaning mode again. This was partly to clean the house of the sick bugs, but also because one of my poor pups had also been ill. Very ill. Very messy. 🤔💩🤢.
So I spent 6 hrs (yes 6hrs!) cleaning my carpets. And then another couple of hours changing the bedding in all rooms. And disinfecting all door handles and bannisters. And double checking that the cooker was still clean from week previous, and re-cleaning all the bathrooms. I do think I suffer from / enjoy OCD when it comes to my levels of clean lol. Made me absolutely knackered, but it was good therapy for the soul, and quietened my mind.
It also gave me some down time to catch up with various support groups online - there are some really interesting articles out there - there are now real discussions taking place about the big data issues emerging out of breast cancer research, and actually there is now a big piece of work linking those who have cancer ending up with quite significant mental health issues.
(That's not me getting my excuses in early by the way - I do find the whole topic absolutely fascinating! Linking 'cancer' and 'mental health' in any google search brings up a myriad of results, but underpinned by medical advice available on Macmillan, Cancer Research and the Breast Cancer Care websites.)
The support groups are really good for allowing me to speak to women who have actually been through, or are currently going through the exact same diagnosis and treatment plan as me. There are still elements of the unknown which I am scared about, and there are certainly a whole spectrum of side effects and reactions - but I guess I just have to wait and see what lucky mix I will get... however I am still planning on being a model patient and breezing through this with a positive attitude and a smile on my face.... (ok - sometimes it may be a little like a rictus grin, but I will rock it either way lol.)
One of the best articles I read though, was the inspirational one about celebrities who have had breast cancer and lived to tell the tale... special hats off to Dame Maggie Smith who continued to film Harry Potter whilst getting chemo!!!
(Supposedly being bald made getting her wig and make up on so much easier ❤️)
http://www.huffingtonpost.co.uk/2014/09/16/celebrity-breast-cancer-survivors_n_5803146.html?ncid=engmodushpmg00000006
Sunday was a great day out with Mum and my niece... knew I was maybe going to be a little nervous before bloods and big head shave, so was just lovely to have a good laugh, inappropriate conversations and lots of cuddles with Codie. As for making the craft sock / fake coconut teddies... well, those will be moments of laughter which will stick with me for a long time. Along with Codie's face when we dug out the DVD of my dad's 50th... Codie would have been 3, and we had captured the outtakes of her singing "happy birthday"...
As they say, for most things there is MasterCard, but then there was Codie's face... priceless 😀❤️😀.
Monday was a trip to see my new BFF - the phlebotomy nurse at the GP surgery. She was surprised to see me so soon, but after I explained the whole sickness thing, she empathised and then whisked a tourniquet on opposite arm from last week whilst she did her vampire-esque role on me.
All was going so well, and I thought she said she was finished... so I turned my head back round and then gasped as I saw the needle was still half sticking out my arm... I am not ashamed to admit that my stomach did somersaults and I felt a bit grey!!! Thankfully I did not pass out and make a scene though, and after a minute or two managed to compose myself to say I look forward to seeing her in 3 weeks time - I applaud myself on the professional recovery, without fainting lol. 😇
Got home in time to get ready for my big head shave... my friend Fiona came across to keep me company (without me knowing that she had a real fear about watching it!!!), and then Karyn arrived with the big clippers...
Honestly, what a hoot we all had. What could very well have been a traumatic episode with tears and snotters, instead was filled with laughter as I was styled with a Mohican, and then property scalped... although I now know that when my hair grows back, I could so do many things with it 😀😀😀.
The level of conversation ranged from what would happen with all my hair and was it ALL going to fall out (yes), and did I need the off cuts to make wigs for other parts of my body... (the answer was "errrr, no thanks" lol).
It also made me wonder... what do I do with make up / foundation? I mean, I don't wear a lot of makeup that often, but with a bald head, where do I start and stop? Do I take it all over my scalp? Or stop and leave a tide mark??? See the serious issues I will now need to consider!!! (Once I stop laughing...)
We also had a serious debate about what shampoo to use. In the shower on Monday morning, I became acutely aware that I will no longer require hair thickening shampoo... or will I? See, then it might just give me a thick scalp... and I can't even picture what that would look like!!!
Although, having now 'braved the shave', I can actually make jokes about myself looking like Uncle Fester from the Addams Family. (That analogy was actually borrowed from one of my new support group buddies, but is so funny I had to apply to myself too!)
I did decide to post my pictures on a closed group on Facebook, as I wanted everybody to know that I was not scared of what I was going through, and that whilst it would never have been my first choice, cancer does not have to be doom and gloom... my funky pink wig is testament to that. 😀😀😀
I also think that it's great that my nearest and dearest can see fit to tease me already about my baldness.... my mum offered to wax and polish it, along with one of my friends, and after telling my husband that it felt like a Brillo pad, he disputed it and then said it was more akin to a cleaning head brush for cleaning DVD's and subsequent got out one of Xbox games and polished it against my fuzzy head 😜😋😀.
(Random aside... I actually thought my scalp would be completely smooth. It's not! Instead it's a little prickly, and when I rub my scalp it feels like rubbing velvet material in the wrong direction? It's the best description I can come up with just now lol. Also, I hadn't appreciated how chilly my scalp gets, even sitting in the house... I feel all drafts!!! Thank goodness for my chemo skull caps lol.)
The other thing I was perversely pleased at, is the fact that I actually have quite a good looking scalp. (Professional hairdressing opinion by Karyn too 😀.) It turns out that it is completely smooth and round, no scars, bumps or blemishes, and I don't have big sticky out ears either... so on the whole... I stand by a previous comment that I could make the perfect snooker ball now 🎱.
Tuesday was supposed to be a day of chilling, instead I went out with a very dear friend who basically allowed me to indulge in a lunch of everything which I am now going to be banned from eating for the next 6 months 😀.
Oh yeah... that's another buggeration factor. When I got all the chemo prep information, I also got a list of things I can't eat. Basically I have to avoid raw meat, runny eggs, pate, soft or blue cheeses, probiotic yoghurts and anything like chorizo and salami. Oh, and takeaways... and re-heating any kind of food.
I am guessing this is all because of risk of infection / unpasteurised/ risk of bad hygiene if food not prepared fresh by my own fair hands... but jeez... who knew it was going to be so limiting!!! (To be fair I don't eat any of those things in any quantity at the best of times, but now I know they will be banned, I want them all, at once, now!! So I did... 😋)
The other buggeration factor appears that most people on the support network have confirmed that they put on weight with this particular type of chemo treatment. Between 1 and 3 stones to be exact. So whilst that's not exactly music to my ears, I am not going to stress about it, and I may just live in my poncho for the next wee while.
However I did take heart when one lady told me that her oncologist had said it was not the chemo making her stuff cakes into her mouth.... (clearly that's a tough love type lol).
To be fair, I think the thing is that the steroids can cause fluid retention, and the fatigue maybe means that usual physical activity is hard to continue. There is also the whole appetite thing... steroids make you really hungry, but the mouth ulcers may make you not want to eat... so then it's a balancing act with protein shakes, and getting enough calories to re-build your cells after they have been killed off by the chemo. Then there is the thing about your tastebuds changing and everything tasting metallic, and the medical team also saying that eat whatever you fancy whenever you are able to compensate for the days you might not eat at all...
So basically folks... I may become an blimp. Or I may become waif like. Or I might just stay the same. Any of those options I will deal with. Just don't judge me if I eat like a pig from a trough one day, and then abandon all food for several days... it is not an eating disorder... just chemo lol. 🤒😷🤐
Slightly off at a tangent, but there have been a few things I have considered this week - it was World Cancer Day on Saturday... and I bought some wrist bands... but I then didn't want to participate in it. Maybe because sometimes it's easier being a supporter when you are on the outside looking in? Or maybe it's because this is all still new to me, and I don't feel like part of a club? Who knows... but actually, it just made me a bit uncomfortable.
Normally I am great joiner-in-er, but I couldn't this week. Then I had feelings of guilt as I didn't want to join in, and I didn't shave my head to raise funds for cancer research either... which I know is completely irrational. However, am not going to worry about it, I just find it intriguing that I am clearly benefiting from advances in research for my illness... but not quite ready to help contribute to that yet. Who knew?
However, I also had my spirits lifted with the many gifts and cards I continue to receive from everyone... flowers to brighten my rooms and lift my mood, the wonderful and multiple bags of mint sweeties to get me through the tough tasting times ahead, and my gorgeous 'journey bag*' which has all the supplies a girl could want to see me through the next 6 months....
(* Journey bag was so well researched!! Mini wine bottles to celebrate my milestones, Vaseline for my dry lips, red lipstick for the days I need some colour, antiseptic wipes to keep my OCD at bay, colouring book and pencils to keep me busy, chocolate for emergencies, bonjela for the mouth ulcers, hankies in case I want to cry, some fancy soap to treat my skin, a green smoothie as I am currently obsessed with them, and some amazing books to keep me chuckling throughout the next 6 months!)
Anyway... I ended this week on a high. Chemo day deserves its own blog entry, and I write this at 2am on Wednesday morning anyhow.
I have had so many lovely messages wishing me well for tomorrow (as well as many messages from weirdo friends and family telling me I am beautiful bald - am sure that qualifies for some kind of fetish club somewhere lol)... but sincerely I feel like the luckiest girl alive. 👌👌👌
I really would not be able to get through this without everyone's love and support. And everyone is bearing with me when I have my drama queen and hissy fit moments too.
(Well most of people are - other people just tell me to calm down and chill the feck out lol)
I really do have the best friends and family. ❤️❤️❤️
Random final fact of the day, I treated myself earlier, so I also have another new digital thermometer - not a rectal one, in case anyone queries btw. It's a fancy in the ear one, with disposable caps. I think I am going to become obsessed with taking my own temperature... (currently 36.8 degrees 😀). Maybe I will save up and get blood pressure cuff and other medical gadgets too.... oh I could learn to play doctors and nurses... oh wait... that has different connotations.... pmsl....
Well... on that very graphic note... time to leave this blog I think!!
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