Here we go, another update from this long old journey I’m on (it’s not a journey I’d choose to be on, but I guess it is one).
To start with I’d like to say normally I struggle to read or watch anything to do with cancer, I think because I am living it on a daily basis I then don’t want to have anything more to do with it. However that said in the past few months this update covers I have read “Can I Have My Ball Back?” by Richard Herring and watched “A Pain In The Neck” on channel 4 a documentary by Rhod Gilbert. Both are about cancers (different from mine in terms of bodily locations as you can tell by the titles) but I found both interesting on their own merits about what cancer is like, the mental effects of being told you have it, then having an operation or treatment and how it all affects your life, I would definitely recommend reading/watching these two comedians, it is definitely insightful (& probably comes across a lot more insightful than my ramblings). As I have also previously mentioned in an earlier post I also recommend “the C list” by Rachel Bown as well for a helpful insight into cancer treatments and the process with it. I’m sure there are plenty of things out there to help people, but I’ve managed to only read/watch these three items.
Just a small section before I get into the monthly breakdown, about doing things and trying to be as normal as possible. My wife has found a chain of pubs around us that do heated garden hut dining, so we have utilised these to be able to see more people and be more normal. Also aside from the reduced interaction with lots of people, I find it nicer as you can actually hear the people you are with on the day, rather than in a busy restaurant area struggling to hear someone you are with over the noise around you. We are still getting out for walks to see people, I have particularly been enjoying the cold dry weather, I think that is perfect walking conditions. So in summary I am trying to do more things, I still have limits yes with my energy levels, but compared to say 18 months ago I’m definitely doing more to be as normal as possible.
November
Since my last scan we have gone past the 11th November 2023, which signified it was 2 years since we got given the news that the cancer was back after the operation and that I was ultimately a ticking time bomb. The date definitely sticks in my mind and on the one hand I felt good that I’d made it two years because back in 2021 the average life expectancy for me seemed to be 2 years, with maybe 5 years at best, but also apprehensive about how much longer I may or may not have, it’s odd, no one in the world knows what tomorrow will bring, yet alone what a year will bring, so in a way I’m no different to anyone else on this planet, but I think being told that it’s a best case scenario of 5 years more life, it makes you think how you need to try make the most of it and get out and do things and see places. Plus it’s an odd anniversary to acknowledge; just I don’t buy my cancer a present to celebrate.
On a much much much lighter note, a couple of days later we went to the New Forest for a little trip away for our wedding anniversary, it was lovely to be away for a couple of days, we even managed to play crazy golf (admittedly getting soaked in the rain where the course had additional water hazards), had a couple of walks and also meet up with family who live around that area for meals out in places we found that could facilitate private dining. We started off our trip staying in self accommodation but as a treat for us on the final night we stayed in a B&B called the old mill for a fancier meal rather than cooking in the self accommodation. The venue was very accommodating as they put us in a quiet section of the restaurant where we were away from other people, so we could enjoy being out and about.
December
I had treatment due on the 27th, with my bloods the week before on the 20th. Due to this we had a quiet Christmas just the two of us as I didn’t want to risk getting an illness or anything that would potentially delay my treatment, plus I didn’t think I’d enjoy Christmas that much knowing I had a treatment just a couple of days later. My bloods test threw up a little curve ball however, as after I’d had my bloods taken we were quickly doing some doorstep drops of Christmas gifts on the way home (literally drop on the doorstep and run away). However as my wife was driving I looked down at my T-shirt and saw that there was blood right around where my port is, I audibly said “oh no” (it may have had more colourful language, this is a clean version) but as we were on a roundabout we couldn’t do much. My wife eventually managed to pull over safely into a side street and gave me some tissues to press on my port, I couldn’t really see what was happening and said we should press on with the quick drops. When we got home a few minutes later I checked myself over and it looked a lot worse than it actually was, the port literally showed the little hole of the needle and that was it. So who knows what I did if I caught something when I got back in the car, or whether my port knew for the first time ever after bloods we weren’t going straight home, but it threw a nice little curve ball to keep us on our toes.
The treatment went fine, and the ward was pretty empty as well, but what makes me want to write about this one is another patient. To explain I was almost finished and ready to be disconnected as an older female patient came onto the ward for her treatment, she announced that she had a cold to the nurses, then assured them that it wasn’t covid, the nurses said they needed to get her to wear a mask to which she said that she had a mask on her and she’d put it on. I really felt like shouting “why would you not already have your mask on if you know you are ill”. Just seems crazy to me that you would go onto a ward where you know full well that there will be vulnerable people (of which you are one) having treatments which severely knock immune systems, not wearing a mask when you have a cold.
Now I’ve been thinking about this for a while with illnesses going around, if Covid hadn’t been a thing, would I still be cautious and the answer is yes, I would still be cautious about going out, doing things and seeing people who are ill as it puts me at an unnecessary risk. Has being diagnosed during lockdown due to Covid made me more scared of everything, without a shadow of a doubt, I desperately do not want to catch anything that could possibly put me into hospital (I’ve not been a fan of my overnight stays, no reflection on the NHS, but does anyone enjoy hospital stays?) or worse get me before the cancer does. If Covid had never happened I’d be less scared, I know illnesses such as flu still account for a lot of deaths each year, so obviously I’d want to not get that, but maybe as covid is so new and was so destructive and disruptive it’s a lot more scarier and in your face about how bad it could be. I probably haven’t explained this well and I’ve likely rambled, but if you want to complain, go find that silly old woman who walked onto the ward without a mask, if she hadn’t have done that, I wouldn’t have written all of this :)
January
I turned the magical age of 36, I would definitely say compared to turning 35 that I feel in a better place physically and mentally than I did, although I’m under no illusion that being 36 and going through all of this is fun, but the fact we went out for a lovely brisk walk at Windsor Great Park I am taking as a win, as I don’t think I’d have been fit enough to do that a year ago.
Ahead of my first oncology appointment since October I got to thinking about things, now I don’t know if this is something other people have experienced on prolonged cancer treatment, but I have noticed that I can be forgetful at times. Such as there have been times when I can have a conversation with my wife and then forget what we talked about, other times we can be talking and I can just forget what word I am looking for, which I do admittedly find frustrating and I get annoyed which then makes it harder for me to find the word I was looking for. My wife has also noticed that I have a shorter fuse now and can get angry quickly at different things. I don’t think I am too concerned about the forgetfulness issues for the moment, as I don’t believe it is too frequent in occurring (he writes hoping he hasn’t forgotten how often the forgetfulness occurs) but I am maybe slightly concerned about the shorter fuse as my wife picks up on that, plus considering she gets to deal with me all the time I can see how it comes across that it could be directed at her (it most certainly is not), so that is something I need to work on, but I thought I would mention it here on my blog in case anyone else has found this on prolonged treatment, having written this section I have also just found this online and it’s made me take note I won’t be alone in this https://www.cancerresearchuk.org/about-cancer/coping/mental-health-cancer/during-and-after-cancer-treatment.
On the 25th I had an oncology appointment in which the oncologist advised she would book me a scan in either February or March, she initially said March and then at the end said February or March, I then got an appointment through for February 17th.
In regards to how long I could be on the Nivolumab for, the oncologist said she would need to check the research data and go from there, so ahead of my next appointment with her she would read the research and come back to us. I was glad she was going to check because we have been told different things by different people and ideally I just want to have some idea as to what could happen next. Previously we’ve been told I could have Nivolumab for up to 2 years or until it stops working, but then also I could be on it longer than 2 years. I also wanted to know when the two years started from, was it when I started Nivolumab with another drug or when I then started Nivolumab on it’s own, as you can see, there are many possible outcomes to just one thing.
For my next blood test the oncologist also booked me a couple of extra tests for testosterone to check those are ok as we mentioned that I have noticed I am slightly forgetful at times and my wife has noticed I have a shorter fuse, so they will just check that’s not something the drugs are doing, she also booked me a head scan for my February scan as well, just to make sure all is ok there as well. The oncologist said she will just refer me to the cancer care team again as it could also be me just generally being stressed from cancer treatment.
February
As I approached my scan date in February I have to admit I began to have fears about it, not about the actual scan itself but about what it could show, as the scan was due just a few days before my February treatment, I had this vision in my head that I’d be all set to have treatment and then receive a phone call saying it was a bad scan and that I can’t have the treatment. Just another tiny little thing my mind likes to do to me (as it was, this didn’t happen and it was fine, sorry, should I put spoiler alert here in case as you read this and you like the possible jeopardy?)
I had my scan fine on the 17th and treatment fine on the 21st, so that was all good. Then onto the 29th was the oncology appointment to find out what was all going on. The scan showed that one lymph node near my tummy had a little bit of shrinkage and all other areas were stable with no change from last time. So great news on that front. The head scan showed no issues and my testosterone blood tests came back fine, so there is no medical reason for a shorter fuse and forgetfulness, I would say that is a massive relief that nothing is going wrong in my head (assuming they found my brain of course) so I will look into possible things to try and help me out on that side of things. The oncologist said she’d like to see me in 3 months time and from there she will book another scan to check on the progress of treatment.
In terms of how long I can be on the treatment for, it is 2 years (so will end treatment January 2025 as that’ll be 2 years from starting Nivolumab solely on its own) however this is down to the consultants opinion on how the treatment is going, if the oncologist feels there is a benefit to me remaining on it for longer then I can be on it for longer as the trial data showed that patients were left on it for longer only if it was still beneficial. When I come off Nivolumab, they will do scans and blood tests once every 3 months to see how I am going (in theory the immunotherapy should carry on working after treatment finishes, however how long it will do that for is unknown and changes person to person). Possible treatment options open from that point that are currently open to me would be lonsurf chemo tablets or another chemo thing I can’t remember the name of, not that it’s that important at the moment. Also there would be the potential for trials if there were any suitable ones going at the time.
In terms of my shorter fuse and forgetfulness, myself and my wife did speak to the cancer care team at the hospital on the 28th, I have signed up to their service which roughly once a fortnight run presentations on different subjects about cancer, I have done one already about the psychology of living with cancer and plan to do others such as on sleep etc. So that should be helpful, the care team have also made contact for me back with Thames Hospice about accessing some of their therapies to assist with relaxing and possible therapy. Individually I have been recommended “My Cancer My Choices” which is a charity that also runs different courses (such as mindfulness and yoga) as well as offering massages for cancer patients, so I have reached out to them and am on a waiting list for a massage as maybe that would help me relax a bit. I am also considering their mindfulness course, they run taster sessions to check you would like to do a 6 week course, so I may do that, admittedly I am not sold on the idea of mindfulness, I tried it before and found it a bit odd, but I think anything to help me I should try because if it is good for me then in turn it will be better for my wife if I work on my shorter fuse not being as short.
Having had a little think about the oncology appointment, I’m obviously not making a decision now, but I feel that I am not too struck on the idea of going back onto any form of chemotherapy treatment. Reasoning behind this is I had the initial 6 rounds before my operation back in 2021, but between finishing chemo and the operation the tumour had grown. Then once the cancer was back whilst the initial 6 rounds with Panitumumab then shrunk the new tumours from post operation, the second 6 rounds didn’t do anything and again the tumours grew again pretty quickly and I was in a lot of pain. So currently I am wondering if there would really be any benefit trying chemo again as it really wiped me out and the side effects I had were not fun, would it really be worth going through all of that again for little reward in terms of the chemo attacking the cancer. As I say, I’ll make a decision when I come to it, but these are my current thoughts on the idea of going back onto chemo.
