Following on from the results in November 2024 the couple of weeks after I had the usual mixed feelings about anniversaries, the 11th signalling three years since we were told that my cancer was back and that it was incurable, on the one hand with this I still feel sad, down and that I am on a countdown clock, but on the other I feel happy, relieved and grateful that it was the 3rd anniversary of being told this as it means the immunotherapy is working and that I am still going. Then on the 18th it was our 7th wedding anniversary, which is a nice anniversary to have and to be thankful for, but I do think with both these events being a week apart it does bring up a mix of emotions and thoughts that while being very different, are very much linked together.
Linked to this, is a question I was asked by someone around November time, which was what is the long-term plan for me, for example do I have any target in mind to get back to work full time. My answer to this is I don’t know what the long-term plan is, purely as my oncologist doesn’t know what the long term plan is for me in terms of how long the treatment will continue to keep things at bay & how long I’ll be able to handle the treatment for. But it did get me thinking that for me I think it is easiest for me to focus on the short term and think about where I’m at now rather than try to think about anything too far in the future as I don’t like the unknown, but working from treatment to treatment or at a push scan to scan feels better to me as I know more of where I am at.
On a medical front since my last scan, in December I had a pain in my back but it seemed to be around the area of a mole I’ve had for a long time and I wasn’t sure if it was looking different (obviously I got my wife to take pictures and look at it for me as I’m not an owl and I can’t rotate my head that far round 
). As I just wasn’t sure and I was getting really anxious I put in a doctors form and thankfully got an appointment to be checked out. The doctor had a quick look and said all was fine, I was mightily relieved as I had been getting super anxious about it & it felt like a weight had been lifted when the doctor said they looked fine, I did also feel a little silly for creating a fuss about nothing. The pain was still there but eased a week or so later so I can assume it was just a muscular thing.
At the start of February we had a short little break away to Chichester to see some family, whilst it was good to see family and have a couple of days away we did it the week after treatment and I really felt it for a few days after with the driving and walking, so I have learnt that anymore little breaks away I should wait a few more days to make sure I have recovered a bit more and don’t get as tired.
I had my scan on April 30th to see how things are going with the treatment, I was given the scan appointment at the end of February so had 9 weeks, obviously it’s good to get appointments early so you know what is happening however for me personally I feel it gave me far too long to think about the scan in terms of the iodine based dye that is injected into me during the CT scan as since I’ve had the port put in I discovered I can taste it, the way I avoid tasting it is when it is injected I try to control my breathing and don’t swallow any saliva for a bit, but it does fill me with dread if I get it slightly wrong as the time I did taste it I really felt like I was going to be sick on the spot, so it’s a bonus little bit of scanxiety to go along with the waiting for the results after the scan.
A couple of days before the scan results appointment I did have a new pain which I hadn’t experienced before just to the right of my stomach area, it started hurting before I went to bed and eventually woke me up around midnight and as I was in pain I felt very warm as well. I went downstairs and put an ice pack on the area that was hurting and took my temperature just to check that out as well (was fine at 36.3). After holding the ice on there the pain subsided a bit and I was able to get back to sleep, thankfully the pain seemed to finally go I guess about 12 hours after it first appeared, so will keep an eye on that but a new pain in that area of my body really added to the scanxiety I’ve been feeling this time around.
We got the results for my scan on 15th May and the scan showed that everything is still stable and I am okay to carry on with the Nivolumab treatment. The oncologist plans to see me again in 3 months and look to do another scan in 6 months (so assume around October/November time). With the Nivolumab treatment, I should be eligible for the jab version that was in the news the other week (I’ll put a link at the bottom of this blog entry), however the hospital are currently working out their approval for it and how they’ll administer the jab, the oncologist said it could be done at the centre where I normally go or it may even be done as a home visit, I can’t see how this second option would be viable but we’ll wait and see. If I do go to the jab it would be down to me if I kept my PORT, I think I would keep it for bloods but also just in case things changed with the jab and I had to go back to the IV drip that I normally get.
This time around for my scan I have definitely found myself feeling a lot more anxious, I think the fact that I had a long wait from scan appointment to scan date compared to normal didn’t help me & it gave my brain a long time to think about things (I know it’s a shocking statement to make that my brain thought of things, but it really did).
Oh and here is the link about the jabs
https://www.england.nhs.uk/2025/04/nhs-rolls-out-5-minute-super-jab-for-15-cancers/
