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
No comments:
Post a Comment