To follow on from my last post, I started immunotherapy, after my first session myself and my wife saw the oncologist on October 20th to discuss how things were going. We discovered these immunotherapy drugs have been around a while; however it is quite new for them to be used treating bowel cancers such as mine. The feeling we both got from the meeting was it’s kind of like a trial but not quite a trial. The oncologist needed to speak to someone with more expertise in these drugs to possibly give me a testosterone boost, this was due to me some days having a low mood that I can’t shake off as it just lingers, I’d also been having spells of hot flushes going all sweaty which the oncologist said can be linked and I’ll be blunt as he asked me bluntly, I hadn’t really noticed getting erections since that first treatment, which could’ve been a sign my testosterone levels could be low due to the treatment (I had my testosterone levels tested with my bloods for round 2, they were at the lower end of the safe range, but in the range anyway so nothing was done). For the low moods the oncologist was aware that I was talking to the mental health team that works alongside the hospital team, he also wrote to my GP to see if they’ll assess me or if they think some form of anti depressant will help me.
This first meeting summary goes on a while doesn’t it, the oncologist also agreed with what I was told about the covid booster vaccine to be the most effective I needed to have it when I’ve had treatment (1 or 2 days after) as they know then it’ll be most effective for me, so I kind of get the feeling it’s pot luck if any of my previous 5 vaccines have been any use. Based on this we decided we need to carry on being sensible in what we do and seeing people really just to keep me as safe as can be. The oncologist agreed however that if I met my treatment schedule I am ok to delay my treatment due w/c 14th November by a week so I don’t have treatment the week of our wedding anniversary, so hopefully I’d feel ok to do something nice for it. As last year the week before our anniversary we found out the cancer was back and incurable, and then the day of our anniversary we had to go in for me to sign forms to say I’d proceed with more chemotherapy alongside panitumumab. For this appointment my wife kindly drew a diagram of the insides of a body, so now we have markings from the oncologist of roughly where things are, just to give us a better idea. It does look a little scary the amount there is, but makes it easier to understand.
Having bloods taken before my 2nd possible immunotherapy, the nurses couldn’t get access to my port, so had to use my arm. However they wanted me to get my port checked out, as I had a podiatry appointment booked I had to leave and come back for my port to be checked out, I have to admit I was a little teary as I got to the car where my wife was waiting as I just felt like my body kept throwing curve balls at me and I feared my port could cause me an issue. Thankfully when it was checked it turned out the nurse was just a bit out with her attempt to get the needle into my port, it’s something I could really have done without to be honest, the mental side effects these seemingly little things have on me is just draining, I think anything going slightly wrong my mind instantly fears it’s going to be an awful moment, because nothing has been easy on this journey. Only my wife gets to see the effect on me the lucky devil.
After the second round of immunotherapy I got my next covid booster the day after treatment so that’s a win to have that done. The GP contacted me to discuss the letter from the oncologist about my mental health and I was prescribed Citalopram, to start off with 1x10mg tablet for the first week and increase the dose to two tablets thereafter, I’m not sure if the tablets have helped, I guess they may have and also the fact we got my pain medication right, so not being in excessive and constant pain is good as well. I noticed on round 2 that I seemed to have fewer hot and sweaty flushes, however myself and my wife noticed that my weight suddenly dipped over the period of a week or so, going from 11st 13lbs to 11st 8lbs, thankfully I managed to keep myself at 11st 8lbs by snacking more (have since got this back up to 11st 13lbs), I did try drinking milkshakes to increase my calorie intake, but these went right through me and gave me some toilet dashes, plus made me very gassy at night, so we had to open the windows to get some air in.
On November 10th was our next appointment with oncology; however we didn’t end up seeing the usual oncologist as we were seen half an hour late by an oncologist we’ve not seen before as I assume the usual oncologist was busy/running late. The new oncologist didn’t seem to know I am having a break for our anniversary. They did say I could expect to see side effects from this point in time, which was news to us, as we’d previously been told they aren’t sure when side effects could show. The news about the side effects and the fact this new oncologist worded his goodbye as “I hope you are able to enjoy your anniversary” as we left I’m sure wasn’t meant in a bad way, but after his information about side effects it really messed with my head again that I’d suddenly become too rough for us to go away and enjoy it. I’ve even had a nightmare where I was covered in a rash and spots and looking generally awful, just little things can really mess with my head and make me feel anxious and scared of letting my wife down. Around this appointment signified a year since everything went wrong, the 8th November being the day I got the call about the cancer being back, the 11th being the day we had an oncology appointment and were told it was incurable and I may have just a couple of years left. Just couldn’t really get this out of my mind at all, I’d temporarily be able to distract myself by either seeing people, watching tv or playing Mario Kart, but the thought of last year just kept lingering, also wondering about what I’d done in the last year since finding out and whilst I’ve tried to see people the answer to that question is largely undergo treatment.
On a random point at this time I also noticed that I’ve gone off lemon and ginger tea and ginger biscuits. Before cancer was an issue for me I used to like these things, but recently I have tried to eat/drink them and as I had to have them to control sickness feelings and get rid of the taste of chemotherapy from my mouth, I no longer enjoy them, it just reminds me of the taste of chemotherapy.
A positive note we did manage to have a night away for our wedding anniversary at a hotel that wasn’t too far from home. It was just lovely to get out of our house for a night, we booked a suite so that we had a dining table in the room for us to have dinner and breakfast in the room. As it was the hotel when we arrived offered to open up a dining room just for us, so we could eat downstairs. So having drinks outside and dinner in a proper room was fantastic and made me feel a little normal (that said, after food my body reminded me I’m not normal as I had to leave my wife at the table and dash to the loo, but still it’s as close as I’ve got to feeling normal). It was just lovely to get away and the hotel was great for helping us have a fantastic 5th wedding anniversary. Thankfully no side effects reared their ugly heads to stop us going which was great.
So onto treatment 3 and for my bloods this time the nurse was able to get access but then couldn’t stop my port from bleeding for 10 minutes or so after (it did eventually stop) I think my body is just keeping everyone on their toes. Had a few more hot flushes on this round than on round 2, but still nowhere near as much as round 1. Have noticed as well I’m feeling more fatigued, not sure if that’s to be expected or not. We saw the oncologist on the 8th December, and was advised the fatigue I’m feeling is to be expected, if I can’t walk around and I feel dizzy that’s when I should worry.
Now to try and explain this fatigue I’ve been feeling, it’s like I get brain fogs I guess and just feel tired. My example is I’ve been rebuilding my Lego Batmobile lately and the other day in the step by step instructions I needed 8 of a particular part, I could only find 6, after searching through a little pile of Lego for a good 20 minutes I still couldn’t find what I was looking for, so I opened the next numbered bag from the instructions to see if the bits were in there, I did find two more bits. However I went back to the instructions and then realised I’d been looking for the wrong bit, and easily found the 8 bits I should’ve been looking for, it’s just a silly mistake, but it’s not something that would have normally taken me that long to notice as I did keep checking the page to make sure I was looking for 8 and that item. Just feels like the only way I can explain it really is with an example. I also just feel tired when doing things, such as when seeing people at times I can just feel myself switch off or get tired and my eyes get heavy, it doesn’t matter how I sleep at night, a good night’s sleep doesn’t help me during the day.
For round 4 of treatment, thankfully had no issues this time around with my port. I’d noticed I’d been feeling a bit warmer body temperature wise but again still not as bad as round 1 with the sudden sweaty moments. The fatigue is still there, it gets worse if I don’t have a good night’s sleep, but even if I feel I’ve slept well I still feel tired during the day. Seeing a lot of people quickly over Christmas (it was literally two days and not seeing that many people, just family) but even that left me shattered and glad of a rest on Boxing Day. Back to bits from treatment, I was due to have my CT scan on the 19th of December; however this was cancelled on the morning of scan due to a technical fault. Unfortunately this delay caused everything else to be pushed back; the scan was rescheduled for the 29th of December (which was the day I was due an oncology appointment to find out the results of the scan). Arranging to push everything back turned into a bit of fiasco when the in contact with the colorectal nurses, the oncologist had told them to let me know I can continue with round 4 of treatment and it didn’t matter about the scan delay, the technical issue being, I’d had round 4 already, eventually the nurse came back to say everything needed to be pushed back, which I already knew, it was just more faff (please don’t read this as a dig at the NHS, I think it’s worth pointing out that if they had more funding, there could be a small admin team supporting the specialist nurses and oncologists, making sure they are aware of the correct information, so these specialists wouldn’t spend their time going back and forth with me). To be honest I’m not hopeful for this scan (as I write this little bit out on the 28th) I keep feeling a niggle in my right side where I’ve felt pain before where one of the tumours is, also because I’m now due the results on 5th January which is my Dads birthday and a few days before mine, I have this feeling it’s not going to be good news, it’s a hard feeling to shrug off to be honest.
On a plus note from being on immunotherapy (because you have to try find some positives) I’ve really enjoyed (it’s a weird enjoyment I know) not having a 40odd hour pump attached to me after treatment at hospital. So I come home and can carry on pretty much as normal, rather than having a pump attached which restricts me from showering, makes me sleep in the spare bed (as paranoid somehow I’d pull the needle of the pump out by accident) and just have to generally move around with a pump attached is annoying like finding the right place to hang the pump when I go to the loo. I can honestly say if I can possibly avoid it, I don’t fancy having a pump again. Not having one is a little more humanising.
Thankfully I did have my scan on the 29th, although unfortunately the vein in my left arm wasn’t big enough for the cannula, so they had to use my right arm again. This may not sound like the biggest issue, but last time my right arm was used, I think due to my port being in my right side, I could taste the dye in my mouth as it went round my body and it really made me want to throw up, it was horrid. This time around as the operator announced the dye was about to put into my body I stopped trying to breath and also swallow, it was better than last time as I didn’t get as much of the taste in mouth, I think last time I was breathing normally and swallowing, so it was worse. A side note about CT scans with dyes for you there.
Not sure how I want the results to go to be honest (as I write this on the 2nd of Jan) I want to be able to live as close to normal as possible. Take for example around Christmas, I only felt comfortable to see family for drinks on Christmas Eve and Day, I’d much rather be able to have sat down and spent longer with family then feel the need to leave early, especially having a little travelling distance to see my family, it doesn’t give you as much time to see them. Also I declined a kind offer from a friend for her and her husband to take myself and my wife out for dinner using a pod at a local restaurant, as it’s a risky time of year for illnesses, another thing that’s annoying to say no to because I don’t want to, but equally I don’t feel safe going out. Myself and my wife didn’t see any friends between Christmas and New Year (we did want to see people, however didn’t manage to get anything arranged), I do feel guilty for my wife not seeing any friends so she can keep me safe. I also feel a healthy me could’ve gotten over to the Isle of Wight during the festive time to see her Dad as well. I know she’ll tell me I shouldn’t feel guilty, but if I wasn’t ill, she could’ve maybe seen friends & family more while they were off work.
Here we go then the (now I’ve written it out long) summary of the oncologist meeting from the 5th. The oncologist was very happy with my scan results as everything shows that it has shrunken (to give an example he said the largest mass had gone from around 5cm diameter to around 3cm, which he said doesn’t sound like much, but it is significant in the time frame). He said compared to where I was 6 or so months ago after the panitumumab it’s gone well. The plan is to now go onto the nivolumab drug once a month (starting from next week assuming bloods are ok). This can last for up to 2 years but obviously will be cut short if it no longer works, I will continue to have scans around every 3 or so months to keep an eye on the treatment.
He said to be honest with us that as these drugs are new to being used on my types of cancer that they honestly can’t predict what will happen with me, but he is cautiously optimistic that maybe just maybe I could get a little more normal again. With my fatigue he has suggested that I should try to do more activity wise, longer walks, take up jogging or whatever I fancy as that may help me get healthier and physically stronger (it’s common for people when they are being hit by treatment and bad news to stop these things which I obviously have). He also said to try and slowly integrate back into a normal (ish) life, he wouldn’t recommend considering say going to a sport stadium or musical event, but be sensible about things for example go to the cinema during a week day, go to a restaurant at a quieter time of day etc. Obviously we need to do these things at our own pace and stay mindful that if we are meeting people and they feel ill, to not still see them. Hopefully on a work front he said once I’m feeling better in myself again that is something I can look to build myself back into as well to create that feeling of normality.
Finally the niggle I’ve been feeling in my right side, he said that is where the largest tumour is that has shrunken, as it’s connected on my right kidney, liver and a bit on my muscles, he thinks the tissue damage could be causing the discomfort. So for now has recommended to stop taking the ibuprofen and paracetamol top ups I have been taking and to just focus on the morphine tablets for a couple of weeks. If I find that ok then it’ll be a case for the gp to slowly reduce the dose of the morphine tablets and hopefully get me off of them completely. So overall, we are just surprised as going into this on the 5th I genuinely didn’t feel great about it and didn’t think it would go at all well. The oncologist feels there is a reason to be cautiously optimistic, but I would urge everyone to not get carried away and think I’m safe, I’m far from safe, but this is the best it’s been for a while. It’s a start, nothing is guaranteed, it is just a start. Imagine supporting Arsenal who haven’t won the league since 2004, they are currently 8 points clear (at time of writing early afternoon on January 5th), but I still don’t believe they will win the league because I’ve been burned before, it’s sort of like that in an odd way.
After we got home from the oncologist I received a call from the chemo nurses to advise now I was going from two drugs to one that I am required to have a 6 week break between treatments. So my treatment will resume on January 25th, just a little bit of information I didn’t get in the oncology appointment.
Writing this part later in the day. As I slowly process this I am a bit cautious of the optimism, purely because last year after my first scan on the Panitunamab it showed shrinkage of the cancer but then after that it didn’t do much else and that drug lost its effectiveness, I am fully away this is a different type of treatment (as Panitunamab was a anti body drug alongside chemotherapy, what I’m on now is immunotherapy) but I can’t help feel I was built up before and it didn’t go according to plan. Also I do just feel shattered now, I’d built today up in my mind to not be a good day, that getting better news has caught me by surprise and in an odd way is a strange come down because I was set for something completely different.
I will wrap up this blog entry on the morning of the 6th January, I didn’t have the best night’s sleep last night and I’ll tell you for why, it was having a lot of different thoughts running round my head. First of all I feel anxious about getting back to some form of normal, obviously it’s not going to be normal normal but after effectively having been in lockdown longer than everyone else due to illness, others have had the cautious phase and are now living like it’s 2019 whereas we are going to have to get used to cautious phase but also likely stay there, trying to get the understanding may be tricky with some people, also it can be tricky with my body as it reminded me it’s not right last night giving me a mad dash to the loo just after food. Secondly, is there something wrong with me not being excited it’s good news? I mean there is a part of me that wants to jump for joy, but a bigger part of me wants to be careful as things have changed before for me, I guess it’s a glimmer of hope, but hope I find is the worst thing as it’s not guaranteed but it’s what makes getting the bad news a whole lot worse. I guess we see how 2023 goes and review where we are at.
