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
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