I have tried to breakdown this long old entry into sections that I think people may feel most beneficial to read should they read this going through cancer treatment themselves. So we have subcutaneous injection of Nivolumab, scans, sleeping and then general health over the last few months, should you wish to continue reading you may want to go grab a beverage of your choosing & be warned this is a longer entry 
.
Subcutaneous Injection of Nivolumab
For my treatment in January (on the 27th) I was moved to the injection version of Nivolumab, I wasn’t really sure what to expect, all I had been told beforehand was that the injection goes into the thigh and leaves a little ball around the injection site as it slowly distributes around your body in around 24 hours, so I was hoping it wouldn’t be as bad as it sounded. The injection itself took about 5 minutes, so a lot quicker from the IV version, just have a curtain pulled around the cubicle for a bit of privacy as I pulled my trousers down to be injected in my thigh muscle on my left leg (I was told they would alternate legs every treatment), the nurse sat with me slowly pushing the Nivolumab through in the side of my thigh and after 5 minutes that was it I was sent on my merry little way. To be honest the injection didn’t feel too bad & I felt ok, it was only after I got home that as the evening wore on my leg got stiff around the injection site.
The following morning my leg still felt a little stiff but I figured moving around would help it ease off so I went for a walk with my wife, however around halfway into the walk we went up a slight incline and my leg completely stiffened up and it was an awkward hobble back to the car. I did call the nurses to advise them of the issue and they said all they could recommend was to keep trying to walk around & to take some paracetamol. Eventually in the evening the stiffness seemed to ease off again but I would say that the stiffness came and went in my left thigh for around 2 weeks after the injection. Just to be annoying the first day the stiffness stopped was on February 12th when I had an oncology appointment, unfortunately the oncologist didn’t have anything to suggest as it’s a new way for the treatment to be administered but advised to take paracetamol next time earlier to keep on top of it if I feel my leg getting stiff and keep an eye on it. My wife did ask if there would be an option to go back to the IV should I continue to have issues but the oncologist said she would have to ask as the idea of the injection is that the IV will no longer need to be used.
For my second injection treatment on February 24th I had the injection administered in my right thigh but on this occasion the nurse pinched the top of my thigh to inject in that area rather than the side of my thigh as was done in my left leg in January. I still had stiffness in my right leg for a couple of days afterwards and on the Friday after treatment (which was on the Tuesday) my right knee did feel a bit tender and was swollen on the inside of the knee however after treating this with a bit of ice it seemed to feel a lot better. All in all, it was a lot better in my right leg than it had been in my left leg for the first injection, so I’m hoping my body is getting used to it, it’s that or my left leg is just weak and can’t handle it.
And the third injection on March 24th was my left legs second turn, which I was dreading a bit to be honest based on how it went the first time. I asked the nurse to inject in the top of my thigh as that had been better on my right leg and I have to say it was a lot better, the stiffness lasted a couple of days rather than the two weeks as it did after the injection in January. My left knee did still feel a little weak but I think that is because I’ve always had issues with that knee.
I had my fourth injection on April 21st, this was in my right leg and I am delighted to say that on this occasion I did not feel any stiffness at all in my leg, so I feel that is a massive win. I did have my covid spring booster the day after treatment and my shoulder from that caused me more discomfort than the Nivolumab injection, so I have everything crossed that maybe I am a bit more used to it now.
Since starting these injections I have also noticed that I do get some pain around my ribs which I have mentioned to the oncology team and noted on MacMillan and Cancer Research web pages that this can be a side effect, for now I seem to be able to keep it under control with paracetamol but I will keep an eye on this going forward. (side note there is more on this further down)
Fiasco with Scans and results
The reason for this subtitle, so the week after I had seen the GP in February (you can read about all of that fun further down in the general health section) the GP had messaged the oncology team and had received a reply to advise that an urgent CT scan had been booked for me. As I hadn’t heard anything from the hospital I called the colorectal nurses and the radiology teams on the 9th March to find out what exactly was going on as the GP hadn’t been able to elaborate how urgent was urgent. I spoke to a nurse who explained that a request for a CT scan had been made for me for the end of April as discussed with the oncologist in February however the “urgent” bit referred to how quickly the results would get back from radiology to the oncology team. On the 12th March I received a notification advising a CT scan had been booked for me on April 29th and I thought everything was back to normal, where is the scan fiasco I hear you ask? Well, read on to the next paragraph and I shall explain all.
So Friday 13th March, its Friday the 13th, so that is a sign of trouble in itself, I suddenly had a new notification come through advising me that my scan had been cancelled on the 29th April and moved to Wednesday 18th March, no longer in Reading either it would be in Bracknell (much better for travelling to) so I called the Radiology team just to check that it was correct and they confirmed it was. I then had another appointment come through to get the results of the scan on March 26th. I was just so confused with being told one thing, then another and then everything changing again.
On the day of the scan, I had bloods booked to be taken in Bracknell at 9:30 and the scan was due around 12, so as I left from having bloods taken I thought I would check where I’d have to go later for the scan, as I asked the receptionist where I would have to go she said it seemed silly me going home to come back so she’d see if I could be bumped up in the list and the scanning nurses were able to move me forward, so that was a good result. Had the scan as usual and then walked back to the car to drive home as I had driven myself as I was just going for bloods initially (for a scan I’d usually get a lift off my wife) as I got to my car I realised my left coat sleeve felt wet, took my coat off and my left arm was covered in blood from where the cannula had been put in for the iodine contrast used for the scan, so I quickly got some tissues out the car to stop the bleeding and then had to try clean myself up a bit before I drove home, I did also call my wife to explain why I was delayed. I’m sure I must’ve looked like a right yob standing in a car park trying to clean up a blood covered arm.
Roll onto Tuesday 24th March, around 2ish I had a call from the oncologist to advise that my scan results were ok cancer wise, however it showed that my bladder was distended so she wanted to check I was weeing ok and ask if I could have some extra bloods done before Thursday when I was due to see oncology. I said I had treatment due at 3 so she said she’d send an email ahead asking them to take bloods while I was in for treatment. However, for my treatment I was seen after waiting for around 90 minutes, the nurses apologised for the delay but it was due to the nurse I had being told she didn’t have another patient that day, but no one had questioned why they could see me in the waiting room. This delay meant the blood collection van had finished for the day so I had to get another appointment booked to go in the following morning to have the bloods taken for my oncology appointment.
For the oncology appointment we saw the registrar who showed us the CT scan and we were able to see how big my bladder was, and it was huge. The registrar felt my abdomen and did feel an area to the left of my belly button which felt uncomfortable (to me like a tight muscle) and the registrar could feel something there. She did say the bloods taken the day before had come back fine, so they were a bit stumped about the distended bladder so while I was there, they did a bladder ultrasound before and after a wee to check it was working properly. The ultrasound was very cool as it said I had 300ml of fluid in my bladder before a wee and was empty after, I also had to do a urine sample so that could be checked. The registrar spoke to the urology department about the bladder, and they advised that I should have another scan in a couple of weeks to see what it looks like then and go from there.
Subsequently I had a scan date come through for April 9th. Thankfully when I got the results on the 23rd April it showed that my bladder and kidneys were fine, so we assume perhaps that I’d had too much to drink before the first scan, who knows, but I was very relieved that it was fine and I didn’t have another issue to worry about. I did ask on the call with the oncologist if the scan showed any reason for the uncomfortable feeling felt to the left side of my belly button but there was nothing showing on either of my recent scans, so again it’s something to keep an eye on. The oncologist did say because of my operation in 2021 sometimes scar tissue can still cause discomfort years after so it could possibly be something to do with that.
Sleeping
I’m given this its own little subcategory as it covers a couple of different months, I would say since mid-January I haven’t been sleeping the best as I keep feeling myself wake up a lot each night feeling like I have had vivid dreams, most of which I cannot remember what they were about. Some I feel like I remember include my wife having grey coloured skin and oddly being in a place of work I was last at in around 2015, but we’re not here to understand my dreams and wonder what is happening.
In my oncology appointment in February I mentioned this issue I’d been having but as I had been on treatment a long time the oncologist suggested it wouldn’t be down to the treatment and would likely be some other issue. The oncologist did mention possible stress and as I thought about it afterwards I did think it could be stress related, as 2026 signifies it being 5 years ago since I was told I had 2 to 5 years left to live, now I keep telling myself this was based on me being on chemo and not on immunotherapy so it’s not the same, but it doesn’t stop the nagging thought in the back of my mind. Also come May 2026 I will have been on long term sick from my current working position for 5 years and my employment will come to an end, admittedly I have only been doing two mornings of work a week as I get tired relatively quickly, but I’m not looking forward to that aspect of normality going away although it’s heavily supported as if I am feeling too tired I can cut my days short or even log on later than planned if I’ve had a rough night.
Eventually in March I decided to do a doctors form to get help for sleeping, however I don’t feel I was listened to very well on the phone as I said about the employment side of things ending and his reply was he could understand that I’d be nervous going back to work after 5 years absence, alas I had to correct him. I was eventually prescribed Zopliclone with 14 tablets to be taken over two weeks just before bed, however when I got the tablets I saw that they can affect your blood test readings for your liver (I was due my next set of bloods 8 days later) I delayed taking them so I could speak to a GP who advised on the lower dose of Zopiclone (which I was on) it should be fine.
The first couple of night on the tablets were fine and I felt like I slept which is good, however the next couple of nights I kept feeling myself wake up a lot again with vivid dreams and then the next couple of nights after that I was getting a really dry mouth (which I’d got under control as it is a side effect of the Nivolumab treatment) so I stopped taking the Zopliclone off my own back on 16th March and got another GP phone call appointment for the 19th March.
In the phone call on the 19th March I spoke to a different doctor who was surprised I had been put onto Zopiclone first, so they advised they would put me on a prescription of Melatonin and suggested I use the Sleepio app through the NHS to try and help me better. I am still taking the Melatonin at the time of writing this entry and I would say that on the whole it is helping me more frequently, the only times it hasn’t helped me on occasional nights is when I can feel that I am stressed about one thing or another and I can’t get it out of my head. I have found the Sleepio app kind of useful, for seeing how my sleep is actually going and it has had a couple of handy tips I will use going forward.
General Health Over The Last Few Months
Picking up from where I left off after getting the scan results in November and it was a fun and crazy start to December. To start with I went for a short walk on Thursday 27th November (the dates will prove somewhat useful as this story goes on) when I got back from the walk my wife told me that I needed to sit down as I looked awful and pale, after sitting down I felt alright again. Then on Friday 28th as I sat at home doing some work I just felt sick and a bit floopy (I say floopy as it wasn’t dizzy but I didn’t feel right) I went downstairs and had some crisps which helped with the sick feeling but we took my blood pressure and that was raised but I eventually felt a bit better as the day went on. Although the blood pressure didn’t calm down much (side note I can’t remember when my blood pressure was last taken so I have no idea what is normal for me).
As I was due treatment on Tuesday December 2nd I decided to phone the hospital to speak to the nurses on the Monday as my blood pressure was still showing as raised over the weekend and I mentioned what happened on the Friday, I was advised I should really call should I have the episode again as I have it. With the blood pressure I was advised to keep an eye on it and go to the doctors if it was still showing raised readings.
Treatment went ahead as normal on December 2nd, before treatment in the early hours I was woken by a dull ache pain in the top of my chest to the left hand side, however I was very sleepy & eventually got back to sleep and thought nothing of it as I felt fine when I woke up. However around 8pm the dull ache was back & I just didn’t feel comfortable with it & as the feeling didn’t go away I called 111 (as the advice on treatment is to seek medical advice with any chest pain) & from there I was advised to go to A&E.
So off we popped to Reading Hospital where thankfully once I’d gone through a triage bit they allowed my wife & I to sit away from the main waiting room to avoid lots of people as it was rammed. I had the usual stats, some bloods taken, an ECG & an X-ray. All the results showed that the heart and lungs were all good, so they couldn’t explain the dull ache but there wasn’t anything to worry about. We got home at 2:30 on the Wednesday morning, I’m glad I got it checked just in case it was something serious & after my random feeling sick thing & being told I looked awful the previous week maybe it was worth getting checked.
Later in the week I did fill in a doctors form as the dull ache was still there in my left side and my blood pressure was still showing as raised, so I was given a phone call appointment for the Friday December 5th. On the phone call with the Dr he advised A&E did all they should and that all looked good on the results (he accessed them online). But as he could sense my anxiety he booked me a face to face appointment for later that same day as well.
At the face to face appointment the Dr checked my blood pressure which he said is raised but it’s not high enough for them to prescribe any medication and advised to keep an eye on it. He checked my chest and back with a stethoscope whilst I breathed in and out to make sure everything was still working inside as it should with my heart. He thought the likely cause of the pain was heartburn (as the sickness feeling going away the previous Friday after eating some crisps is a sign of that) or possibly an inflamed tendon/muscle between bones in my chest as he said some people get them in cold weather and it is very painful. He did push on my chest where I said it hurts but it didn’t really hurt there and then, however 20 minutes after the appointment I felt the pain from where he pushed. I left the appointment feeling better as at least some explanation of why I didn’t feel good or right. Following this I took paracetamol and that mostly helped the discomfort.
Moving into January I was still having issues with my upper chest area, but it was now solidly focussed around the left shoulder and not in a larger area as it was at the start of December (I know a win right). I got an appointment through the doctors to see a physio & after a bit of manipulation and seeing what my range of movement was like and what caused me pain the physio said I had likely pulled a pectoral muscle (don’t ask me how as I have no idea) and I was given some stretches to do which helped massively.
In February, a few days before the injection I had felt a dull ache come and go just around the base of my ribs on my left side, I mentioned this to the nurse who did my injection and was advised that I should keep an eye on this, as the dull ache continued I thought I would put in a doctors form to get this checked on the Thursday and I got an appointment for the same day in the morning. Now I should point out that I put the doctors form is as I didn’t feel the dull ache was anything serious, but something I just wanted some advice on and guidance, however the GP I saw was reluctant to say too much due to my medical history. The GP gave me a once over my touching and prodding my lower ribs and stomach area, asking me if I’ve felt sick, have diarrhoea and if I get heartburn. I advised that I occasionally feel sick and occasionally have diarrhoea however it is occasional and is linked to treatment, in regards to heartburn I very occasionally suffer from that. The GP said that I should contact my cancer care team to see what they advise for me to get checked out in reference to the dull ache and said in the meantime they would prescribe me Omeprazole.
So I called the nurses and because it was pain in my chest area I was advised that they would like me to get an ECG to just rule out any possible heart issues, as I was still outside the doctors surgery they suggested asking if I could get an appointment there rather than go to A&E, so I popped back into the surgery and was advised they could do the ECG but they would need an email first from the nurses. I called the nurses back and relayed this to them but was advised to go to A&E in case the email took a while to get through and thus be processed. My wife than drove me to the A&E department at Reading Hospital and had to drop me off as there was no parking, thankfully I was taken through to a quieter seating area due to having just had treatment and I wasn’t left out in the main waiting area. I had an ECG and x-ray and all came back fine so I was sent home again.
Now the reason I mentioned my chat with GP about feeling sick etc, well I went on the NHS app and saw that they had written to the Oncology team to advise I often feel sick and often have diarrhoea which is completely and utterly not what I said. Also from not wanting to really do anything with me, the Omeprazole prescribed for the heartburn I very occasionally get, when I looked it up online it advises that it can make Nivolumab not as effective as normal and also says for patients on Nivolumab it can make diarrhoea worse, which seems a bit silly to me. I was just left wishing I hadn’t bothered trying to get checked out really as I felt exhausted.
