Picking up from where I left off last time in this blog I was on a break from treatment, during this break we slowly began to see more people but whilst still being cautious, mainly meeting outside in gardens and on one occasion venturing to a pub garden to meet my wife’s Dad, but a pub that we knew would be quiet midweek. It was really nice to do a few more “normal” things and try and get out and about, however in the initial few weeks of my break I still felt restricted by the side effects from the panitumumab as it still took a while for my skin to calm down on my face, chest and back, plus my scalp still wasn’t good for a while, fortunately now writing these have definitely got better, but there are still marks on my body where the rash was. The downside from the treatment though is that my toes are still badly affected and are not healing anytime soon, which does make walking difficult at times. What I would also say about the side effects is I didn’t realise how bad they were until they started to clear up, this may not make sense, but I think I was so used to just getting on with it during treatment, that I didn’t realise quite what it was doing to me. For example we cancelled a couple of nights away in the New Forest in the early stages of my break, as I was still having to sleep on blankets and have old hoodies on my pillows to protect them from the blood that would come from the rash/spots on my body.
Six weeks after my last treatment (so early August) I had another review with oncology, as it was my last chance to go back onto panitumumab if I wanted to (due to NHS guidelines a patient cannot have longer than a six week break from treatment, if they do, then they can never go back onto the treatment). I declined the offer to go back onto the treatment due to how bad the side effects had been and the oncologist understood why I didn’t want to go back onto the treatment. The next steps recommended to me varied from the previous appointment, so it was recommended for me to try Lonsurf tablets and keep mitomycin as a back up option should the tablets not really keep the cancer under control, the tablets viewed as the best way to allow me to live as normally as possible. Another plus from this meeting was that I got to continue my break for another few weeks as the oncologist wanted to scan me again towards the end of August before then restarting treatment, during this meeting he also referred me to Oxford to discuss clinical trials.
During this extended break we managed to see more people (again outdoors and being sensible) I was also happy as it meant I wasn’t on treatment for my wife’s birthday, as I didn’t want to feel rubbish for that, I’ve been pretty rubbish most of the last 18 months, so I should give her a day’s break and rest. We also had our first overnight stay somewhere during this section of the break, although it was for all the wrong reasons as my Nana passed away in August, we survived being away a night, staying in a cabin on the lakeside at a Golf Club, if anything this setting helped ease us into it, as when we met my family for a drink in the bar garden in the evening, as it was a golf club it was very quiet with not many other people around. The funeral itself the following day was as nice as these things can be, but it did make me think about my mortality quite a bit, one odd feeling that popped into my head was that out of all the family in the crematorium that day, I could be next. We also went to the wake, thankfully it was a nice day so we could be outside, I think I would have been a lot more anxious if we had to have been inside at the wake, even if the event was just for family members only, there were no general public people around.
The end of August approached and it was time for my scan, I started getting pains in my right side again just like I did last October/November time, so was back on pain relief medication, it didn’t fill me with hope at all. Around this time I also got a letter about my genetic testing, where reclassification as science developed now diagnosed me with Lynch Syndrome, this turned out to be a significant development. Firstly I spoke to Oxford about medical trials a couple of days before my oncology appointment, in this call I was advised that I should ask about having immunotherapy treatment through the NHS first with the new diagnosis of Lynch Syndrome, as they would only want to run me on immunotherapy trials. So currently I am no longer on the waiting list for trials as I have not exhausted all possible treatments that I can easily get access to. If I am being completely honest a couple months ago I would’ve said 100% that I would take part in trials, however now I am not so sure, from the brief description I got, it sounds like a massive commitment, that I’d have to go to Oxford at least once a week, plus they can’t really advise what the side effects would be, considering on panitumamab I had pretty extreme side effects that for a vast majority of people clear up after a couple of treatments, going into a world of unknown scares me.
So onto the oncology appointment (this was last week, early September), it was recommended that I should have immunotherapy of ipilimumab and nivolumab, I would have both of these once every 3 weeks for 4 cycles, then providing they are effective I would then have just 1 of these drugs every 4 weeks for up to 2 years. Due to the Lynch Syndrome diagnosis they feel it would be a better course of action for me than the lonsurf tablets. The scan showed that the cancerous areas had increased in size (to be expected as I’d been off treatment) and there is now a new growth in my bowel near the exit. I did initially ask for a couple of days to think about the immunotherapy as one of the main side effects is skin issues, having just recovered from these I didn’t fancy them straight away, but I have had it confirmed I can come off treatment if it really doesn’t agree with me. I am hoping to start this phase of treatment at the beginning of October (as this is the earliest the hospital can book me in). What I did discover after the oncology meeting when I contacted the hospital with my questions I thought of over the weekend was what my life expectancy would be without treatment (I wanted to gauge how different it would have been to last November when it was roughly a year) this time around they advised it would likely be months I’d be expected to live without treatment. This is gutting to have found out, I’ve been through 12 treatments and it just comes back as I have a break seemingly more powerful than it was before. The pains are still there in my right side and also a lot in my lower back, so at the moment I am surviving on codeine and paracetamol.
A final thing I wanted to put in this section is to try and explain how I want to get back to some form of normality (I admit I won’t be able to be fully normal, such as for me going to sporting events, this summer I was frustrated I couldn’t go to any of the Women’s European Championships, I have followed women’s football for a long time going abroad for away qualifiers and major competitions. Then we have a home tournament and I couldn’t attend, plus see England win).
The way I see myself is if I am playing FIFA (bear with me here) I am 5-0 down at half time, I’ve been told at half time that I cannot possibly turn the game round, I will lose, but how much I’ll lose is down to me. So November last year was half time getting the news that this cancer is incurable. I felt with the first scan result after 6 treatments I’d maybe got the score back to 5-2, however the scan after the second set of 6 treatments meant it was now 6-2, then the realisation of how bad the side effects were for me meant it was 7-2. As I managed to get out to see some people and do a few more things during my break, I’d say I made it 7-4, but the latest scan results is the opposition pulling away again, it’s probably 9-4 now. I’m not saying I’m ready to give up treatment, but I will try and change my formation to have the goalie and four defenders, but I think I might have the other six players all up front to try score a few more goals (in this instance, doing things, seeing people). I may lose in the end, but I’d much rather lose hitting some goals, rather than go defensive to limit the damage (I hope this long ramble makes sense).
