As this section is about 6 months long from scan to scan, I have broken it down into some sub sections, “Treatment and General Health”, “Scan and Results”, “Getting Back To Some Form Of Normal” and “Bowels”. Hopefully that way it will be less all over the place and make sense.
Treatment and General Health
After my last post it was my 35th birthday, I had a very chilled day but it felt odd that it was 2 years since the walk where I first felt dodgy and what lead to this, it’s hard to shrug off the significance of dates, they do just stick in the back of my mind. I did also contact Thames Hospice on my birthday to discuss slowly coming off the slow release morphine tablets I was on (which was 60mg twice a day). Come the 31st of January I was finally down to 5mg twice a day.
25th Jan was my first nivolumab on its own treatment which went well, only trouble I had before hand was that one of my blood samples taken on the 23rd had congealed so I had to dash in on the 24th for another sample to be taken. After the treatment I did find myself sniffly and sneezy randomly, but the fatigue was again the main issue for me, I started slowly trying to build up a level of exercise to try and improve my fitness and hopefully combat that fatigue feeling. A different experience for me was also feeling tired but not being able to get to sleep, the worst example of this was one Friday night I couldn’t get to sleep despite the fact I felt tired, I tried breathing exercises, counting & reading, but nothing would help me sleep. Eventually getting up and having a warm milk while playing FIFA seemed to do the trick as I finally felt ready to sleep, although it was 4 hours after I’d initially tried to sleep.
Into February and I started trying to do 4000 steps a day if I can, by going out for walks, walking around the garden or using the exercise bike (as my app measures steps still). I have been hitting the target most days and I feel the benefits with the fatigue, I feel it is less prominent and I am coping better on that front. I wouldn’t say it’s 100% better, but I do feel it’s getting better. Also I think moving around and getting outside is generally better for my mood as I started to come off the antidepressants I was put on last year. At the start of Feb I came off the last of the morphine tablets I was on which was great that I no longer feel any pain and don’t require them. The only tricky bit I had coming off them is the tablets were helping keep my bowels moving slowly, so as I came off them my bowels moved rather quickly, they have slowly started to sort themselves out, odd days they aren’t great, but I’ll go into this more in the bowels section. On the 22nd of February I had my next round of nivolumab, it’s quite odd having treatment once every 4 weeks and only being in for around an hour and a half, when I first started treatment a couple of years ago I was in for a solid 4 hours every couple of weeks.
A couple of things I have noticed now I am solely on Nivolumab is that I feel more sensitive to changes in light and temperature that makes me want to sneeze, also not immediately after treatment but a couple of days after I seem to be having a couple of nights where I can’t sleep properly, for example if I wake up for a wee, I’m then wide awake and cannot get back to sleep. When the sleep thing happened in January I swapped taking my antidepressants from an evening to a morning as I thought they could be the issue, but for it to happen again I feel it must be something odd due to the treatment.
I mentioned the above to my oncologist in our catch up at the start of March and he hadn’t heard of this before, so couldn’t recommend anything other than for the sleep asking the GP for sleeping tablets if it gets worse. He did say if these are my only issues at the moment then it’s a good thing, which I agree with, I was more curious if anyone else has ever felt this way with Nivolumab. From the rest of the appointment the oncologist said he wouldn’t scan me end of March/early April now as I am fully off painkillers and don’t feel any pain, so he is satisfied the treatment is working, so my next scan will be end of May/early June (6 months since my last scan). This must be a good thing that he isn’t in a hurry to scan me again so hopefully I can crack on with doing a few more “normal” things. The one thing the oncologist did say is he doesn’t know much about this gene defect I have that has given me the cancer, so he can’t say what this treatment will do or how long it will continue to work, it’s an unknown to him. Based on this I don’t know what I should be planning for, should I plan long term and consider I could get back to work full time? Or should I plan more short term in case things go wrong again. I’m trying to switch my brain to focussing on taking things slowly and a step at a time, but there is a part of me thinking long term.
In regards to the gene defect, my sister finally got her results from a blood test she had last year (originally told it would be 6 weeks for the results, ended up being about 5 months) and she doesn’t show the same gene that I have. Genuinely so happy that she is clear and ok, in an ideal world we would both be fine, but alas that isn’t the case, I’m just so glad she doesn’t have to worry about the same thing happening to her because of the faulty gene.
Third round of nivolumab had a little bit more faff with my bloods, I had a call on the morning I was due treatment to say that the blood results were still not back in regards to my liver function, which they needed back as on my previous results they were a little high for the Bilirubin aspect of the liver and they needed double checking before I could go ahead with this treatment. I did have the treatment a little later in the day, just I had no idea my liver bilirubin reading was a little on the high side as when we saw the oncologist after my second treatment he advised us that all my bloods were fine, just would’ve been nice to know it is ok but a little on the high side.
In April the reading for my bilirubin had got a little higher again, but for May it had gone down compared to April, even though it was still on the high side I felt good it had gone down a little bit. I’ve also noticed that my sleeping has got better after treatment compared to January and February where I was having the odd night not being able to sleep. I have been continuing to keep aiming to hit the 4000 step target I’ve set myself daily, the fatigue is still there, I guess with all that’s happened this past two years its bound to take a toll on me physically and mentally, but I feel the exercise is helping me on both of those fronts and I really enjoy doing the exercise, makes me feel normal as I would’ve done it if I was fully fit (well I may have been running as well, but can’t have it all).
Other things we have noticed is how sensitive my skin is, an example of this is when I shave my face and head that my skin goes very red very quickly, so I try and only shave my face every few days and my head every couple of months so not to upset my skin too much, just a random note to chuck in. Also on a couple of occasions in the past few months when putting shopping away in the freezer I have really felt the cold in my hands, it may sound a strange thing to say, but really felt it more than normal. I mentioned this to the oncologist in June and was told it could be a delayed reaction to the chemotherapy treatment I had where the drug made me super sensitive to cold, but it is hoped my body will just sort itself out, so something I’ll keep an eye on.
Scan and Results
On the 31st May I had my scan, a lot had changed at RBH since last time I had been there with a brand new CT Scanning Suite, not that I got to have a scan in there I went to a mobile unit, but I got to go to the reception desk and wait in the waiting room, it looked pretty good. During the scan made sure I didn’t end up tasting the dye that was put in me, I am very wary now after the time I did taste it. The scan as a whole went without a hitch, when I got home I did have a sudden short sharp pain in my head, it felt like someone had smashed me over the head with an object, only lasted about 10 seconds, but was odd, jotting it down here in case it happens again. The one thing that baffles me with the trip to RBH for the scan is the fact patients and staff alike do not seem to be wearing masks anymore in the hospital, just thinking the number of sick people in a hospital it would still be good practice to protect staff and patients alike to keep wearing them in medical places.
Onto the results of the scan, it showed a reduction in the tumours I have with no signs of any new growth. The oncologist did say that the mark on my liver hasn’t reduced in size, but it looks a lot less angry than it did on my previous scan. So the plan is to carry on as I am for now, we will see the oncologist again in around 2 months time (August) and from there he’ll decide when the next scan could be (it could be 3 months from the scan I’ve just had or 6 months, depends on how I’m feeling and how the blood tests are going).
I mentioned the high liver bilirubin levels in my blood tests and the oncologist said it’s nothing to worry about as all my other liver readings are normal, he said it could just be a naturally occurring thing for me, but they’ll keep an eye on it for every blood test. Also mentioned about at times suddenly needing a number 2 and having to dash to the loo, again oncologist isn’t concerned and said it could be down to nerve damage from the operation, the growths I have and all the treatment I’ve had.
So in summary, oncology are pleased with how things are progressing for me, it’s not as big a reduction as last time but then they didn’t expect it to be. Again we’ve been told that they don’t know what this means for long term for me, I could have years left, they just don’t know due to the gene I have, but it’s promising. I’m happy this treatment has carried on working but I will just continue to be sensible doing things and getting back to some form of “normal”. I want to do what I can and have a life while I can but equally not go crazy and push myself too much, build things up at my own pace and take each week as it comes.
From the results I am feeling a little conflicted (may not be the right word) about getting back to some form of “normal”, firstly I know I still have to avoid busy places, so that rules out going to sporting and music events which for me would be a normal thing to do, maybe if Women’s football was as popular as it was 10 years ago I’d be fine to go to matches as I used to literally be stood with a couple of friends to watch Arsenal with maybe 20 other people in the standing area, I would’ve had so much space to be in. Workwise as well, I’d love to be able to work fulltime again, but I am scared that my body could throw a massive curve ball in a few months (it has a track record of allowing things to suddenly grow and stop working with treatment) that I don’t want to work, not spend time with my wife and then suddenly be told I am back to months at best to live. Don’t get me wrong I am really happy that things are still working on Nivolumab, but the way things have gone for the past two and a half years for me with this being a roller coaster, I’m sceptical I guess at how long the good news will last for and it definitely plays on my mind. Additionally with work I can’t see myself getting back to fulltime anytime soon because at the moment I find the mornings I am doing are fine but in the afternoon I do feel pretty tired so I currently can’t see how that will dramatically change, also when I don’t sleep well for whatever reason the night before I plan to work I am more tired than usual in the afternoon. This is on my mind a lot because by getting back to “normal” the oncologist seemed to really be pushing and focusing on me getting back to work, it’s just made my mind go into overdrive.
Super quick summary on the roller coaster to hopefully explain my thoughts above, Jan 2021 diagnosed, have 6 chemo treatments, Sept 2021 have operation and think all clear, Nov 2021 it’s back and incurable start new treatment, after 6 rounds things have shrunk but side effects are bad, after another 6 side effects are worse but treatment is no longer working on the tumours, then get in a lot of pain as the tumours grow before starting immunotherapy, first 4 treatments work well, then these 6 I’ve just had still working.
Getting Back To Some Form Of Normal
We have started getting out regularly for some walks which was great (trying to do 2 or 3 outings a week) it’s so much better than walking in the garden at home, actually being out like normal people (well I say normal, going out on a weekday at 9:30 because others will be at work isn’t normal for me, as I’d be at work if I was normal, but it’s a step in the right direction). I do still have my dodgy toes but thankfully they don’t seem to be painful when I walk, just a pain in the backside that I now have to keep changing the dressings on a daily basis, hoping they will heal soon. On days that we don’t get out for walks I have either been using the exercise bike in the conservatory or still walking around the garden to hit my target of 4000 steps a day to keep myself active. The downside to going on the exercise bike is that I have to have the windows open as it does get pretty warm in the conservatory; however this then allows the smell of smoke to waft in from gardens around us.
Getting back to normal a bit more as well has meant more socialising which has been great, although my only issue is it does tire me out if it’s longer than a couple of hours to be honest. We have managed to have a private dining meal out on Easter Saturday which was great, being out on a bank holiday weekend but not actually having to worry about being round too many people, it was a really nice experience. For Mothers Day myself and my sister did a little at home afternoon tea thing at my parents & for the first time in a good couple of years due to covid and all of this I actually managed to sit down at the dining room table and have a meal with my family, that was great just to be able to do that and feel comfortable doing that. Still trying to do normal things, I feel slightly reassured that in theory if I get a cold etc I should be able to deal with it without a hospital trip, however the oncologist has said that everyone is different so he can’t guarantee that would be the case, which I fully understand, I wouldn’t actively go out and seek to get ill, definitely take precautions and make sure I see people that don’t feel ill and avoided crowded places, so slowly try and be as normal as I can I guess.
Workwise at the beginning of March I started trying to work 3 hours on a Friday morning, which thinking I used to be full times sounds not a lot, but I’m pleased I got somewhere. I am just trying to ease myself back in and not rush things, as come the end of 3 hours work I do begin to feel tired and have heavy eyes and then the afternoon I just slob on the sofa. I am aware it will take time and I don’t want to work tired and make silly mistakes, I want to be useful, so I definitely won’t overdo it (just to clarify I’m not being forced back to work, it’s me wanting to do things, my work are being so fantastically supportive and have told me to do as much as I can, I can’t thank them enough). Admittedly on treatment weeks I have only managed an hour on a Friday morning as I am still feeling tired after treatment. At the end of April I started doing a Tuesday morning as well as a Friday morning, so that too feels like a good step in the right direction, again I do feel tired after 3 hours but it does feel really good to get back into it. I have noticed working though that I am a lot slower than I used to be processing the tasks I am doing, some tasks I have completely forgotten how to do and have to refresh my memory and ask for help. When I am doing tasks I also have found myself checking multiple times what I have done to make sure it is correct, I definitely do not trust myself at the moment as I know sometimes I struggle with concentration (a non work example of this is at the end of May I was rebuilding the Lego London Bus I have, I had to dismantle a large part of the upper deck as I couldn’t connect it properly because I hadn’t quite put a piece in the right place, even with following instructions I couldn’t see what I had done wrong for a while).
Bowels
Now I thought I’d put this at the end with a big heading, because if you don’t want to read about my bowels then you can stop now and know you aren’t missing anything after it.
Food wise I have noticed too much dairy in my diet seems to set me running for the toilet, so I have stopped having cheese and have started having vegan ice cream, so far I’ve discovered a couple of the Ben and Jerrys vegan tubs are nice and also Jude’s vegan ice cream is really tasty as well.
Since I’ve stopped the pain medication it has certainly helped speed things up a bit, I can be sitting down and then suddenly need the loo, I have no warning, just have to run and hope I make it in time, largely the movements are ok and not that loose which is good, but it is havoc not needing to go and then suddenly needing to go. I have also noticed that sometimes just before I need the loo that I suddenly feel very warm, not sure what does that, but it’s a warning sign I guess. To go out I do take loperamide to make me feel comfortable that I can survive a meal and a journey day without suddenly needing to go.
I have also had a couple of mishaps, one was after having gone to the toilet and thinking I had finished, as I was downstairs getting a drink I suddenly felt my bum was wet, I’d had a liquid discharge (the only way to describe it) which wasn’t fun at all, so I now take my time to make sure that doesn’t happen again. My other moment was just walking around the garden at home I felt that I may pass wind, however that did not happen and I poo’d myself, thankfully only doing it in the garden met it was easy to sort myself out (it would have been far worse being out for a walk). But it is just embarrassing, I’ve put these stories down mainly if other people reading this are going through things to confirm it does happen.
