I realise I am not the best at this blogging thing, I find that old habits die hard. I was never good at keeping a diary and I never enjoyed writing essays at school (or English in general, except for reading and spelling tests…I can still spell antidisestablishmentarianism to this day, I may have memorised it in year 3…) Anyway I will give you a sum up of what happened between my first chemo and my last chemo from the first time round.
I spent in total up to 3 months on and off staying in hospital at the beginning of my diagnosis which I have explained some in detail. To begin with due to finding out what was wrong with me and then after because I kept getting infections, not from other people which is usually what happens but from my own skin. All skin carries bacteria but the bacteria on my skin just happened to make its way into the lines I had been given, causing me to get seriously ill and then having to have a course of antibiotics administered through a cannula and drip for a long period of time. Great fun! In this time in hospital I ended up spending a bit of time in a few different wards as they needed the bed I was in on the ward I was suppose to be under… I was an easier case than most as all I needed was a nurse that knew how to set me up with a drip and the antibiotics, easy patient for the most part, other than my diet…
I had a total of 3 lines tried in my body. The first being a PICC line that ended up making my arm blow up like Aunt Marge from Harry Potter, this was the start of the infections…(If you don’t know this reference please google it and watch/read Harry Potter). I then had a course of antibiotics, after this course was finished (thinking the infection had gone) they gave me a central Hickman line which actually never got used before being removed for the same infection which hadn’t left my body. Next thing I know I’m in for a long month of antibiotics on drip plus 2 weeks of tablets at home (if all went well) and I had no veins in which to use(tiny useless veins only and they couldn’t use my left arm as the infection had caused a blood clot in my shoulder…). Not only this but they wanted me to try and have a new pick line as I am so awful at cannulating and my veins don’t last very long… I was not happy! I had not enjoyed either pick lines being put in and I didn’t want to do it again… So I for once joined all the people that feel Blue Monday and had a really down day…
This Monday sucked… I had to not eat or drink for some reason and ended up not going for my PICC line until about 5 in the afternoon when it was scheduled for 10am. This time I was on a table with lots of machines around me, X-ray machines, ultrasounds and ones I didn’t know plus tonnes of doctors, the first PICC line procedure had only two people in the room and one machine, this was serious stuff, I was not looking forward to it just from going in the room, worse still I was awake for the whole procedure. I felt like meat on the table, listening to them talk about my veins collapsing. From putting the needle into my arm and trying to get the needle into the vein, the needle going alongside the vein, then going into the vein, the vein holding onto the needle, spasming and then the vein collapsing, this happened at least 4 times before giving up and running out of half decent veins. Not going to lie I spent the entire time in the room with tears running down into my hair (head somewhat learning back at the time, neck brace obviously still on), I was not asked if I was ok, it was like I wasn’t there and like I say I was meat on the table, I was not ok! At the end one of the nurses came over and told me how good I was and how stoic I was, no I was upset and wanted to be anywhere but there. Fair to say, it was a waste of time and useless and I got back to my bed and ate biscuits and continued crying. This was a day when I wish I was still able to eat Ben and Jerry’s ice cream, that pint of ice cream would have been demolished.
After this the doctors found out it failed, they then came to find out if I would try for a line again, I gave them a point blank crying no! I then got asked again and me being me got a bit stubborn and over zealous with my words, and was rude, no meant NO! They left me for about half an hour and sent one of the doctors I was more favourable to back to ask me if I would do it again. Sadly I was rude, I did swear and I got bit shouty, my Dad reprimanded me but he didn’t understand that they just kept asking me whether I would do it. It’s like a child who asks one parent something gets a no and goes to see the other parent to get a different answer but the answer should stay the same, no means NO!!!
They continued to ask me this question for about 4 days, different doctors, different nurses and multiple times a day, I continued to say no as I had made up my mind (once I make a decision I stick to it, it may take me a while to make one but once decided me there is no changing it, in this respect I am very much a Librian (star sign) ).
I continued to cry for most of the week which is very out of character for myself and I think I was worrying my parents quite a lot as I just seemed to be spiralling down in mood and couldn’t bring myself out of it. I don’t remember much of this week except the questions and the crying. I knew I had friends from work coming to see me on the Thursday and I had warned them that I wasn’t in a great mood and I didn’t realise but my mum and dad had popped in to work to talk to them too. When they arrived they had two extra people with them and they had brought KFC for us all! I was surprised and happy to see them all, I can honestly say it was the cheekiest of comments that turned my mood around and after a evening of food and banter (my food being chips and beans, yay gluten free…) my usual cheery disposition had returned. I am very thankful for this as I don’t know how far I could have spiralled but I am glad they got me back on the right path and my parents were too!
After this the questions finally started to die down and they were getting the hint that I wasn’t going to do it, this meant that I was potentially being cannulated once (maybe multiple times) a day so I could have the antibiotics and at odd times of the day. I had one cannula fail for my evening antibiotics (that I remember vividly) and a nurse on the ward tried to put a new one in, and failed, another nurse tried and failed then they called the on call doctor for the evening who came and he failed also which then meant they called the Acute Care team to do it but didn’t know when they would get to me. At this point I had been playing Rummikub with the nurses at the nurses desk for a few hours and by the time the Acute Care team got to me it was about 5 am. I can honestly say that that was one of the fun waits, I also found out how competitive the nurses are (I already know how bad I am). This didn’t happen too often but if I needed a cannula I would always stay awake until someone was successful as my phobia of needles meant that I needed to gear myself up for a needle and if I had slept and they had woken me for it I would just sob, shake and be a mess, this isn’t helpful to anyone and doesn’t make the person doing it feel any better so I decided I would always remain awake until it had been done. Sleep can be gained later.
Whilst in hospital the other main problem for me is food, being gluten and lactose free means not much choice, as long as you like stuff in gravy your fine but trust me after eating the same 5 meals twice a week for 2 weeks, your over it pretty quickly. Because of this I ended up living on cereal and toast for most of my stay or pasta and cheese. This caused me to go to the lowest weight I have been in years and the doctors were seriously concerned, because of this they allowed me to go out on an evening or lunchtime in between antibiotics with a visitor to somewhere outside the hospital that I could eat (as long as I was well and had no fevers this was allowed). For example the pub up the road (The Jack Rabbit), Bella Italia, Chiquitos or Nandos, (other eateries are available obviously but these were me friendly). I was very thankful for this as there is only so much toast you can eat before you start to feel like your going off food (and being a total foodie I hate going off food). I must say I was very thankful to all my friends and family that visited and took me out, it gave me a bit of sanity and obviously a happy belly but to just visit is not the most fun experience so to come to the hospital (long car ride there and back home for the visitor), come in and pick me up and then take me wherever and then eat and then take me back is a lot of effort and time and then they still have to go home after! So thank you to all of you that did this, I’m still very appreciative to this day.
After this hospital stay had finished I managed to stay as a day patient for the rest of my chemotherapy treatment and managed to just have cannulas each time I needed treatment, it was hard at times to find a vein that worked but I had amazing nurses who managed (one in particular got very used to my veins).
While I only had chemotherapy once every 2 weeks, I didn’t work as I found that my tiredness and sickness was a problem and each cycle was never the same. Some cycles I would feel sick and not eat much at all, others I would be ravenous, others I would sleep a lot of and some I would manage to pop into work for a half day here and there. Never the same feeling from one cycle to the next but my sleeping habit had been ruined from the hospital stay and my body had gotten used to late nights and being woken up every couple of hours. Once out of hospital even though I had a lovely quiet environment and the choice of when to go to bed my body just wouldn’t fall asleep until about 4/5 am and be awake again about 2/3 hours later and wake up frequently after that. I tried sleeping pills and many other peoples suggestions but it took a good few months before my body got back into the habit of normal sleep.
When feeling moderately ok though I would sit and craft, making anything from cards to tea cosies to colouring in books. I would create a corner of chaos (which frustrated mum to no end) and I left it like that for most of my time off work. I found that although I could craft I didn’t have the concentration for films or for books and by doing either of these I would forget where I was in the story on either (which is much more frustrating that you think) so even though I had the time I didn’t actually update my film knowledge or read the books that I had been meaning to read for a long time.
Each chemo day was a huge amount of effort and probably the hardest part of the day was getting me to get out of bed, poor mum and dad I was not the nicest on these mornings (not a morning person anyway) but I would get out of bed in the end, its just when you know your going to have something that is going to make you feel rubbish you just don’t want to go. The whole day would exhaust me from start to finish, the car ride is about an hour and a half to the hospital so I would sleep the journeys usually and once there the cannula process took a while (remember crap veins), then bloods taken to be tested and see how I was doing, and hour and a half wait for the results and once the results were back they would set me up with the chemo. When all sorted I would just listen to audiobooks while having chemo which took anything up to 5 hours maybe more if I needed more than the chemo (like bloods or platelets or fluids) and I would sleep in my chair on and off until time to go home. Sleep in the car on the way home and then straight to bed once home. Food was different each time, sometimes I was hungry and sometimes I wouldn’t want anything all day, it would generally be a breakfast only type of day. So a long day in which I would probably be home by about 8/9 in the evening and have left at that time in the morning, so a chemo day for me was long and filled with on/off sleep.
On my last chemo day, I was actually easier to get out of bed as I wanted it over and done with. We got there and instead of waiting for the blood results in hospital we went into town and had Nandos and met a friend and I treated myself to a charm for my bracelet to celebrate my last chemo milestone (I was determined it was the last one), I got a champagne glass, (celebration for the last day you see). Once back and the chemo was done I had photos with the nurses to mark the last chemo, these three nurses were the ones that dealt with me the most and dealt with my awful veins for the entire time I was an out patient and they were super stars. I honestly am so thankful for them and genuinely I couldn’t do what they do and we should all appreciate our NHS system more as the people working there are amazing and very under appreciated.
A few weeks after this I had my PET Scan from which the results would tell me whether the cancer was gone or not, on this day I had officially run out of veins available to be used in my arm. After multiple attempts to get a cannula into it, the nurses had to resort to putting one in my foot. The thought of this still sends a shiver down my spine. For me I hated it, I got told I could walk with one in but it seemed to dig into my bone whenever pressure was applied so I had a wheelchair to the PET Scan machine and once I had received the radioactive sugar substance I got the nurses there to remove it ASAP. The actual scan takes about an hour to do and it’s similar to a MRI machine but I just always close my eyes and drift off so I don’t notice the potential claustrophobic feeling of the situation. After the scan it was a case of waiting for the results.
In the days after my chemo I had been trying to get back to my new normal and back to work, we even had a family holiday which had been booked a long time before I got ill with my parents, my brothers and their families which was a really nice way to celebrate chemo finishing. Family means a lot to me and through all the chemo I couldn’t have done it without their support. I’m very thankful for them. It really makes you appreciate what you have.
