Here it is whether you’ve been waiting for it or not, my latest update. Since my last update I successfully managed to lose all my data on my phone including my notes page about how things have been going since my last post, so I have a bit less to go on as I can’t remember much & have just been using messages I salvaged off WhatsApp to see what I told people. I had a scan in September and got the results in early October which showed that there had been no change and all was stable, so I will continue with treatment and have another scan in 6 months time.
The day before I got the scan results I had my flu and covid booster vaccines, for the first time having these I found myself in the evening shivering and being really cold as I went to bed, I eventually warmed up and got to sleep, however then woke up sweating. I did eventually feel better but hadn’t felt that bad before as usually I only get sore arms.
On the Saturday after the vaccines and scan results at random points I felt that my heart felt a little fluttery but nothing prolonged, the same happened on the Sunday morning. However just after lunch on the Sunday my heart went crazy and felt like it was skipping and jumping, we took my blood pressure and pulse readings which were very high so called 111 and was advised to go to A&E. Whilst my pressure and pulse readings were still high at A&E the jumping had chilled out a bit, I had an ECG done and bloods taken which all came back fine and was sent home again being told to go back if it happens again. Having checked my NHS app I have seen that the hospital has sent the discharge notes to my GP saying they expect that the episode was likely down to anxiety. I won’t go into much detail on this post, but I do agree I have felt anxious a lot over the past few months due to adulting and the cost of living, which in turn has affected my sleep and made my fatigue worse.
Nivolumab Injections
Since I have last updated my blog I have still been having my four weekly nivolumab injections with varying levels of comfort after the injection. The worst one was in June when it felt like maybe my quadriceps muscle may have been caught by the needle. My leg was very stiff a few hours after the injection and was very painful when I bent my leg, so sitting down was incredibly painful and going up and down the stairs was a challenge for a good 36-48 hours, thankfully after then the pain subsided, but I would say that is the worst I have felt with the subcutaneous injection since I started on them back in January this year.
When I saw the oncologist back in August I mentioned how some of my injections have been a bit more miss than hit and that sometimes nurses have differing techniques to do the injection, as the oncologist wasn’t aware of the proper technique she very kindly looked up a video during the appointment that we watched together which showed that the top of my thigh should be pinched for the injection, so going forward at least I have that information should a nurse try a different technique.
PORT Issues and Heat – possibly related
The reason I question the PORT issues I had in the last few months and the heat being related is because it does feel that when we had prolonged days of temperatures around 30 degrees Celsius the area around my port felt uncomfortable. Back at the start of June I called the 24/7 cancer care helpline at the hospital as for around a week my PORT kept feeling like it was catching on my collar bone, whilst I didn’t find it uncomfortable I was finding it annoying and as it wasn’t sorting itself out I thought I should call for advice. The outcome of the call was that I had to go to the hospital to be checked out by the PORT nurses team. I had an ultrasound on the area, followed by an x-ray and finally had the PORT accessed and bloods taken, all was fine and the PORT was functioning as it should. The only thing the nurse could think of was that as the tubing goes over the collar bone in my vein that sometimes it can catch the collar bone and feel like it is pinching, but they said it is best to get it checked. When we then had the prolonged heat later in the summer I had similar issues but once the weather cooled down a bit (I say cooled down, it was still high 20’s) the PORT area felt better again, obviously I’m not a medical genius but it does feel like it is linked.
