I’ve missed two cycles of treatment now and I have to admit I’m surprised at how much difference it’s made.
I have more energy, I’m sleeping less I have fewer other side effects. I’m more “me”
When I told my oncologist this last month he immediately said we should stop treatment, he thought it was the right thing to do.
He said even if the cancer came back there were still lots of treatment options for me and the prognosis was good.
We agreed to hold off on a final decision until before the 3rd cycle of treatment was due. That’s this week.
The thought of stopping treatment still scares me however I appreciate fully that I will feel better for it.
So I suggested a compromise.
I’m going back on treatment this week and they’re organising a new CT scan as I’m over due for one. If the results of that scan are still all clear even after no treatment for 11 weeks. Then I will stop the Nivolumab..
I’ll give myself more chance to be “me” and fully accept the risks.
I will stop just existing and continue living.
In the meantime I hope the NHS change their stupid rules where if you stop Nivolumab for 12 weeks you cannot go back onto it on the NHS. That makes no sense whatsoever.
So if I need more treatment in the future it will be something different. That’s what’s really scary. 😦
I have to make what is probably the hardest decision I’ll ever have to make. One that could cost me my life.
When I had the consultation for my March round of immunotherapy I asked if I could have a face to face consult with my oncologist. I wanted to air my thoughts of just having been treading water for the last year or so and whether I had to just put up with the continual chronic fatigue and occasional minor side effects or whether there was another option.
Most of the time I’ve managed it well but every now and then it got me down and resulted in the post I made at the start of the year. I have to start living again and stop just existing and counting down the days between each round of immunotherapy.
I knew the Nivolumab was working as well as anyone could have hoped for. It (along with 4 cycles of Ipilimumab) had killed off all the visible tumours and was stopping it from coming back (for now). It had already spread from the primary location, my right kidney, to my lungs when it was first discovered.
Stage 4 Kidney cancer prior to immunotherapy had a bleak outlook but things have changed. The problem is my treatment is so “bleeding edge” that there is no data on survival rates or recurrence of tumours. I am the data.
So at the end of March I sat in a small consulting room with Katie at St Lukes Cancer Centre in Guildford having a very honest discussion with my oncologist.
I mentioned the underlying fatigue that has been holding me back as well as other minor side effects such as muscle aches, stomach cramps and diarrhoea.
He reminded me of the crazy NHS rule in the UK where if you stop Nivolumab treatment you cannot start it again. We had to find out if it was a contributor.
I found that a strange statement but he went on to tell us that the Ipilimumab that I had for just 4 cycles right at the start was “disease modifying”. It actually made permanent changes to cancer cells in my body and how my immune system reacted to them. It was quite possible this was causing fatigue, in which case stopping treatment wouldn’t help any way.
We eventually decided that I would take a short treatment break. I can take up to two of these at once and then continue the treatment afterwards. I was going to miss the March treatment and the April treatment. Then after the 8 weeks we should have information to help us make a decision.
Again, I was confused. What decision was there to make? The treatment is keeping me alive and keeping the cancer at bay. Surely if I stop treatment then that cancer will come back?
He dismissed that as something I shouldn’t worry about. If, and it is a a big IF, the cancer came back, it would be detected quickly as I’d be on 3 monthly CT scans. Early detection would mean better prognosis, lots of other medical treatments, removal options were available.
I didn’t say it at the time but I really DID NOT ever want to be told “we found something on your scan” again. That moment in September 2020 when I was sitting alone in A&E at Frimley Park Hospital and a rather sheepish young doctor came in to tell me they’ve found something on my chest x-ray is burned permanently in my brain. It was THE single worst thing I have ever been told.
The feeling of dread, your pulse rushing so fast you can hear it, the cold sweats , the tunnel vision is horrible and something I never want to have to experience again.
So regardless of what happens during the treatment break I will return to it at the end right? RIGHT?
I had my first 4 week follow up with the oncologist today. 4 weeks since I should have had my March treatment and 8 weeks since my last treatment. He asked how things were going.
Well the truth is I have been feeling better. I have a bit more energy every day. I’m having less side effects. This last weekend I was able to do some activity both days, morning and afternoon with a short rest in between. I couldn’t manage that before. I was limited to one thing then wiped out for the rest of the day.
Katie has said she’s seen a difference in me. Less groggy, more “with it”
So I told him the truth.
He immediately said “It seems like we should stop the Nivolumab then”
Wait! What? No. Again pulse racing, cold sweats, trying to concentrate on the phone call and listen to what he was saying.
Good response…..no reason to worry…detected early….
I asked if I had a say in the path forward or if it was just his decision and he confirmed I have a say but he reiterated that it seems that the Nivolumab was holding me back now and that its time to move on. There are still lots of treatment options.
“We found something in your scan” …. I can’t do that again. Can I?
We compromised. We will wait another 4 weeks to my next consult at the end of May where we will discuss again and then make a decision. That will be 12 weeks since my last treatment and the longest I can go and start back on Nivolumab
Red or Blue
Take the red pill and carry on with the Nivolumab, knowing it’s causing some of the fatigue and that I could feel better and get busy living if I stopped it. However no one knows how long it will keep the cancer at bay.
Take the blue pill and stop the nivolumab, get my energy levels up, start enjoying life properly again. Continue with 3 monthly CT Scans. Risk the cancer coming back and having to start new treatments, new side effects, “other” outcomes. Being told “We found something…”
I don’t like risks. With Cancer there are always risks. Its a big decision to make.
This will be my 4th New Year since my diagnosis and for the first time my resolution is not just to make it to 2025. That’s been my cop out resolution every year since 2020.
For 2024 I will have just one resolution and I’ll tell you what it is at the end of this post but first I wanted to give you some background.
Never Google your symptoms
When I was initially diagnosed I did what I expect anyone would do. I started to search on the internet to find out as much as I could about Renal Cell Carcinoma, Kidney Cancer to you and me and the findings were terrifying. It was September 2020 and I convinced myself I wouldn’t see Christmas 2020.
I read stories of patients very rarely making it to 5 years following diagnosis. 80% don’t make it to 5 years I was reading!
I imagined a very bleak outlook.
Then when I actually spoke to oncology nurses, professors and doctors I was given a very different outlook.
Cancer stories on the internet are out of date
Better treatment, better prognosis. Then I started treatment, and responded well and it was working.
But in the back of my head was that initial 5 years dark cloud. I know it makes no sense but it stayed there and has been there ever since.
Every year my goal was to make it to the end of the year. But this lead to me just waiting for the inevitable.
Side effects are an excuse for self pity
I had regular treatment. Every 4 weeks and regular side effects. Constant chronic fatigue, occasional joint aches, diarrhoea. I found doing anything exhausting. So I stopped doing most things. “Listen to your body” I was told. My body was saying go to bed all the time. So I did.
I spent hours in bed every day for the first few months. Then when I was told the treatment was working better than anyone expected I was still tired all the time. The treatment was keeping me alive so this was my life now.
Everyone still kept telling me listen to your body.
A viscous cycle
I stopped living and instead was just existing. So when each new year came around I really felt that it was all I could do to just survive the year.
I was too tired to exercise so I stopped all exercise. I put on weight. Lots of weight. It took me a long time to acknowledge that I was contributing to the tiredness and fatigue because of the weight gain.
This cycle got worse and worse but I never did anything about it. I have cancer so it’s ok to be tired I told myself.
The year I became a hermit
2023 has been my worst year. I’m winning the cancer battle but losing the “living” battle.
Because I worked from home every day and had no reason to leave the house. I declined social events, when I did go out I was so tired it would take a few days to recover. More and more I made decisions to not go out. That 5 year anniversary was getting close so why bother. I went 10 days once this year without leaving the house at all.
I know what I have to do
I hate it. I hate the cyclical lack of energy whenever I try to go for a walk, or exert myself in any way but I have to change my outlook and way of life.
When you have zero fitness levels any more and are carrying more weight than ever it’s extremely hard to motivate yourself and get started. But this week something changed.
During the Christmas break our dog walker has been on holiday so I had to walk the dogs. Something I still try and do but can never do more than a couple of miles.
The first day I found a flat route and walked the dogs and found as usual I had no energy. One foot in front of the other was hard work. But I kept going and just walked really slowly.
The next day I did the same route. Still hard work but not quite as hard. Then a break for a couple of days as the dogs were walked by someone else.
When I walked them again I found it quite a bit easier. The next day I chose a longer route, still flat and found it very manageable.
So it is literally baby steps. It doesn’t have to be far or fast but I need to get moving. I need to get out.
My resolution for 2024…
Is to stop just existing and to start actually living again.
I’m not setting any wild goals other than I will keep improving. My outlook on life, my fitness, my energy levels, even my social life.
I’ve said it publicly now so will look pretty stupid if I get to the end of 2024 and nothing has changed.
The last few posts on this blog don’t make for pretty reading and a few times I’ve been tempted to take some down. But living with cancer isn’t pretty or easy and there are downs as well as ups. I think it’s important to show everything.
The good news is that I feel a bit better. I’ve got some additional anti depressants that seem to be helping, they also help with sleep but make me really tired. My Dr says my body should get used to them within a few weeks.
I’ve also arranged to start some counselling at the Phyllis Tuckwell Hospice and start later this week.
I’m still struggling a bit with life in general and without any warning something will trigger a full meltdown where I just want to feel normal again without any of the tiredness, or aches or breathlessness or upset stomach or any number of minor ailments bought about by treatment.
Probably the biggest decision I’ve made is to take a treatment break at the end of the month. Today, September 6th is one year since I was first diagnosed. And in that year I’ve had 13 treatments and God knows how many blood tests, pills, phone calls, injections, cannulas, scans.
Exhausting is an understatement and I’ve been told it’s ok to take a break from treatment for a maximum of a couple months.
Takes some time, recover and recharge and start again.
Next week I start a two week holiday from work. Sounds a bit odd after all the time I’ve been off work sick but during all of that time I never had a break or went away.
We’re going to Dartmouth in Devon for a few days for some RnR and then will have a staycation for the second week. Try as much as possible to enjoy ourselves and forget about cancer.
I finally admitted to myself after days of procrastination that I cannot ride my motorbike any more. I just don’t have the energy.
I passed my bike test in 2005 and never looked back. I loved riding it and every year until 2019 I had at least one bike trip away with amazing friends.
My current and last bike is only 2 years old and has done less than 3000 miles. I rode it last weekend, loved it but it wiped me out completely. Riding is a physical effort and one I cannot do safely any more.
I’ve had a total of 6 motorbikes in that time and have some great memories and my bike was my drug, my release, my medication.
But it’s just going to sit in the garage and continue to depreciate so I need to sell it and put the money to one side for when it’s needed. And it breaks my heart but I have to admit when I’m beat.
When someone says “how are you?“, and gives you “that look”, I wonder what they want to hear.
Do they actually want to hear…
“I have cancer and the treatment is causing horrific fatigue where I can barely make it up the stairs without stopping to take a breath..
Also when I am awake (which is rarely) I struggle to concentrate on anything at all. There is not a moment where I’m not thinking how long have I got left and how long have I got to put up with this. ..
I struggle to do things I like and am depressed most of the time now. ..
My treatment is allowing me to stay alive longer but I’m not actually living, I’m merely existing…
I more often wonder if I should just stop all treatment and just get it over with…
All this week I’ve had no energy, felt aches and pains all over again and just been feeling low. A struggle to get up in the morning and start work and all I want to do is sleep.
Sounds like normal depression. I’ve never understood why it comes and hits me out of nowhere. But depression doesn’t explain the aches and pains and is more a result than a cause.
Sometimes I feel lucky my treatment is working but others I just wonder why I bother. I’m just existing at the moment and really can’t see anything positive.
Wake up, work, lunch, sleep, dinner, tv then sleep and repeat every day of the week. Weekends we walk the dogs instead of work. I still spend most of it sleeping.
I don’t have energy for anything else and some things in life right now are just draining. Is it too much to ask for a quiet life with no drama. I can’t get away from it sometimes.
People think they have helpful and positive stories about friends or relatives with cancer that lasted beyond expectations. It might be 1, 3, 5 or 10 years but that doesn’t help. It just tells me at best I might see 60. If I’m very lucky.
This gets me down too. Why not just stop fighting and actually get some life back and enjoy whatever time is left. That seems selfish though.
Another 4 weeks has passed and I’ve got another round of treatment to look forwards to next week. I know that’s going to make me feel rough for a few days.
I wonder why I’m still taking treatment that takes away all the energy I have. It may give me more time but at what cost? It’s never going to stop unless it stops working. Then what?!
I’m not brave. I’m a coward. I don’t like feeling pain and I don’t like the energy sapping, empty battery feeling that engulfs me either. Other people have much worse symptoms and side effects and just get in with it. I have it easy comparatively but I’m not sure how much longer I can keep doing it.
For about 2 months now I have been slowly reducing my Oxycodone dosage. I was on 30mg slow release twice a day for pain relief but with my ongoing fatigue I wanted to do anything I could to try and reduce this.
I’ve been increasing general activity with walking, cycling and just keeping myself busy rather than allowing myself to constantly sleep. If I’m physically active I seem to be able to keep going a little longer but as soon as I stop and sit down then its like my body takes it as a sign to rest and wants to shutdown.
The main cause of fatigue is my Nivolumab monthly immunotherapy treatment but a lot is also coming from the opiates. I’ve not had any pain that I believe is associated to my Kidney cancer for a while now so it seemed logical to reduce the Oxycodone dosage and find out if I still needed it.
I hadn’t realised quite how dependent on it I had become. I’m not addicted to it and am not showing any signs of addiction but I have had some unpleasant withdrawal symptoms as I’ve slowly reduced the dosage.
I initially dropped from 30mg to 25mg twice a day for 2 weeks. That went fine so I then dropped from 25 to 20mg twice a day. It’s fair to say that was not so good. I guess because the actual percentage drop was bigger or perhaps my body actually noticed the drop.
I had a raging headache, felt spaced out and disconnected, I felt even more tired and also nauseous. After a couple of days I went back to 25mg to re-think the plan.
After another week I felt brave so I dropped my evening dose to 20mg but kept the morning dose at 25mg. This seemed to be more successful.
I did a bit of research and found a chart that said I should be able to drop 5mg per week from morning then evening doses. So about 12 weeks to come off it completely.
Long story short I’m now at 10mg in the evening and 15mg in the morning. This is about 8 weeks in to my tapering down process.
I knew it would be slow but I didn’t release how crappy it would make me feel. The worst bit is more joint and muscle aches that could be a withdrawal symptom or a side effect of the nivolumab. Also, reducing the opiate intake means another immunotherapy side effect is now unfortunately present, an upset stomach. Luckily I already have meds for this and was warned it was the most likely one to get right at the start of treatment but the large dose of opiates had countered that the opposite way.
I’ve now giving it at least a week in between dosage drops to allow myself to get used to each stage so expect this will take another 5-6 weeks+
I’m hoping to try again to get back to some work in a few weeks and this transition is a key part of that. The fatigue isn’t going anywhere all the time I’m on the Nivolumab but I should be able to reduce the impact and deal with it a little better.
The cancer journey is littered with things sent to challenge you and this is just another one of those things.
That’s what I need to say to myself. Yes, I have cancer but it could be so much worse. I’ve spent months feeling sorry for myself because I’m a bit tired and can’t work but I have to focus on the fact I have it easy.
Really the only side effects I have from my immunotherapy is chronic fatigue and some joint aches. Of all the side effects I could have these are the ones I’d want. There’s no pain, no organ issues, no other illnesses or “itis’s”. I’m not feeling sick I have full mobility. AND it’s working for me.
Reading some online blogs and forums it could be so much worse. I AM very lucky.
Yes, fatigue is hard. Pull your socks up Davis and kick this things arse. Sleep when you need to sleep but stop feeling sorry for yourself.
Treatment number 9 today and it doesn’t get any easier. I spend the day really anxious as I know it’s going to be unpleasant for a day or two afterwards. But it’s working and therefore worth the discomfort.
Today’s treatment was made worse by them not having my appointment for today but instead had it as tomorrow. They fitted me in but I had to wait 90 minutes for the nivolumab to get made up. Then, for some reason my left arm was not accepting the drip very fast and it took another 90 minutes to take the infusion that should only take 60 minutes. I was shattered when I got home.
My most recent scan has showed further reduction in the kidney tumour since January of on average 1cm on each side so it’s now approx 4.3cm on the shortest side and 5cm on the longest. Almost a cube.
The nodules on the lungs are still stable, so no growth or shrinkage.
I’m not as excited this time at the news as I’d rather not have a tumour at all and rather not keep taking the immunotherapy every month. Yes it’s reduced in size significantly since the start but the treatment is taking it out of me and there are days when I wonder if it’s worth it.
I’ve had days where the fatigue is stopping me doing anything at all. I’ll wake up, be awake for an hour or so then sleep for the rest of the day. That’s not a great existence.
I can’t work and I feel guilty doing anything that’s not work. I’m paranoid someone will see me walking the dogs or trying to tidy the garage or riding my motorbike and report me. They won’t obviously see me sleeping for hours on end afterwards though.
So I have a mental as well as a physical battle. And I’ve just been signed off from work again for the foreseeable future.
