Just to first of all say, I won’t repeat myself on my treatments, only mention if anything changed for me from treatment one onwards.
Meeting With The Nurse - On March 8th I went with my wife to have a meeting with the Chemotherapy nurses to discuss my treatment and what was required (again I could take someone with me to this meeting, so I recommend to go with someone, as there is yet more information to take on board). In this meeting I was advised about having a PICC line installed into my arm (which would stay throughout my treatment). I was also advised how long the treatment would last each time, which for my specific treatment was around 4 hours in the chemotherapy ward at Bracknell Health Space and then I would be sent home with a 48 hour pump attached to me, which a nurse would then come and remove for me at home once it had finished. As well as then having the side effects said to us again (thankfully the same as what we previously had been told). We were then advised that my temperature needs to be checked during treatment, ideally with a mouth thermometer, we found one on Amazon for about £10, but you will find yourself using this a lot if you don’t feel quite right to make sure your temperature isn’t too low or too high.
PICC Line Install and First Chemotherapy Session – the following week, my wife dropped me off at the Bracknell Health Space for my PICC line install and first chemotherapy treatment. On a random note before I carry on I have to say how lucky I felt with the treatment location through Royal Berkshire Hospital, as the Bracknell centre is literally a 5 minute drive from our house, I heard of other patients having to arrange lifts from all over Berkshire, which I just couldn’t imagine doing.
For the PICC line install, I was given an anaesthetic in my arm (they go with the arm you write with) and it is the strangest feeling having a very thin tube put into your body. To get it to go to the right place I was fitted with a kind of magnetic heart monitor (my heart was going pretty well as I really found this all very odd) and they use the magnets to guide the tube to the right place in your body, I mean it is amazing technology and I have probably not described this very well, but in a short description, this is how a PICC line goes in, the whole procedure took around half an hour, I was then walked into the main ward for chemotherapy session one.
My first experience of chemotherapy was ok I guess, going into it not really sure what to expect, I found myself hooked up to a different run of chemotherapy drugs and also glucose throughout the 4 hours. From personal experience I found it more comfortable just to sit and read rather than attempt any puzzle books, just as I know I could move my arm, but it felt odd with the PICC line in and being connected to a medical stand. As the treatment approached its end, I was given my tablets to go home with, anti-sickness tablets should I need them if I felt sick when I got home and diarrhoea tablets should that side effect hit me. I was also given steroid tablets to take with both breakfast and lunch over the next two days and finally the bit I hated and have never got used to doing, but 5 injections to do after my pump was removed, one an evening to reduce the risks of blood clots. I was advised I could inject myself in either the stomach or the top of my leg, I went for the stomach. Oh and the other thing I got given was a sharps bin for the nurses to dispose of the chemotherapy pumps and me the used injections, forgot that detail.
Once hooked up to the 48 hour pump I was sent home, I found it easier for me to sleep in the spare bed when I had the pump attached to me, as alone I was paranoid about lying on the tubing from the bottle going to my PICC line to stop the flow of the pump, that I don’t think I would have ever slept if I stayed in the normal bed with my wife. Also with this pump attached it was impossible really to have a shower, so wet wipe washes and flannel washes were the order of the day. As soon as the pump was removed by the nurse coming to our house once it was finished, I was off for a shower. Whilst on the pump I did feel slightly sick (so utilised the anti-sickness tablets I was given) and I would say I was more constipated than usual (which I was happy with as I didn’t really want to go the other way).
For my first injection at home on myself that Wednesday night after the pump was removed, it was horrific, not because of the injection itself, but because the user (me) was really struggling with the idea of having to inject myself, I really didn’t (and still don’t) like it, I suppose the good news on this is that I won’t ever get a drug habit which involves needles, you have to take the pluses where you find them. My wife sat with me for the first injection in our bedroom, however my nervousness made her have a nervous laugh watching me and it thus made me even more nervous myself, but I didn’t like the idea of her injecting me either. Eventually I asked my wife to leave the room and shut the door so I could do the injection myself, and I did finally do it. Going forward with every injection I’ve had to do since, I have done it on my own so I can compose myself and just get it done as quickly as possible.
So after treatment on the Monday, the pump was removed on the Wednesday, I very naively decided to attempt work on the Thursday (from home of course) as I felt fine, I think I was expecting to feel worse than I actually did. However this was a grand old mistake, I really didn’t last long and felt shattered afterwards, my manager was miffed as to why I was even attempting work. I guess I felt I am young, I feel ok, I should be back to normal, I wasn’t. I learnt very quickly that I should not attempt work for a minimum of a week after treatment. Resting, having afternoon naps, whatever I needed to do to feel ok was definitely the way forward. Eventually as the days went on I found myself feeling a bit better and not having an afternoon nap, my advice is do what you feel your body is telling you to do, chemotherapy takes it out of you.
The main side effects I came across, first of all general fatigue (I feel this got progressively worse the more treatments I had) but I did notice a lethargy to me, and things like video games did tire me out, I realised when I was feeling better because I would be able to last longer at playing video games in one hit. Also after this first treatment my hair did begin to thin and fall out a bit. So throughout my treatment my wife shaved my head without using any guards on the razor, I’m not really a person who cares about the look of my hair as I used to get it cut down to a 2 or 3 , so this didn’t really bother me personally having it this short, but I can certainly understand why this will scare people, as it is odd your hair coming out like it did.
Final part of this is really to point out my next steps after treatment. So every week I would visit the PICC line care team on a Monday, here they would change the dressing around my PICC line and check it was working correctly. They would also if required take my bloods (if I was due treatment the following day) to check if I was in a fit enough state to undergo treatment. Thankfully again this was at Bracknell as it was in all around a 20 minute appointment.
Second Chemotherapy Session – was delayed by a week due to my blood results not being high enough (this really became a theme). The notes I have written in my cancer treatment record book, I have noted I felt sicker on the pump this time and that I felt my energy levels were a bit lower than last time. Also a couple of days after this treatment I had a funny turn, we sat down to have dinner on the Sunday and I suddenly went all dizzy and sweaty. As I composed myself, my wife called the 24/7 nurse’s helpline at Royal Berkshire who advised to take my temperature (that mouth thermometer coming in useful) which was 36.5 Celsius which is ok. In the end the nurse advised to go lie down and to keep taking my temperature, after lying down for about an hour taking my temperature every 15 minutes or so, I felt a bit better, the temperature only ever changed to 36.4 Celsius. So we then warmed my dinner in the microwave, I ate and then went back to bed to lie down. I have included this story just to say, odd things can happen.
Third Chemotherapy Session – was delayed by another week due to my blood results, this time I got the joy of being able to collect 2 more injections for blood clots to do in between session 2 and 3 to see if that helped me out. And after I had completed the third session, I was sent home with 7 injections rather than the usual 5 (this stayed at 7 for the rest of my treatments, as you can imagine I was overjoyed at the thought of more injections). Sickness was actually better this time, but again fatigue felt slightly worse.
Fourth Chemotherapy Session – was delayed again by another week, so this time I was given a reduced dose on the chemotherapy pump I was sent home with to see if that helped me recover in the two week time frame my treatment plan aimed for. Notes I have written in my book for this shows I felt sicker again when attached to the pump (the anti-sickness tablets helped with that) and also again the fatigue was there and lingering.
Fifth Chemotherapy Session – was delayed by yet another week (I know, shocking, who’d have thought it?) so was still on the reduced dose. My notes on this one were aside from sickness and fatigue my first bit of diarrhoea after treatment, I felt warm before I went to the toilet with a temperature of 37 Celsius, but was 36.8 afterwards. Again phoned the 24/7 nursing team who advised to keep an eye on it, if it happened too often to call them to arrange going in to A&E, but thankfully it stopped.
Sixth Chemotherapy Session – was on time, the only one I managed to do two weeks after my previous treatment, it felt like a huge achievement. So June 23rd was my final Chemotherapy treatment, aside from sickness and fatigue again, I was delighted to finish the treatment course and move on to see if I would be deemed ready for an operation.
