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
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