Its been almost a year since I stopped treatment. I’m still here.
I’m getting CT scanned every 4 months now, along with blood tests and everything is still clear.
In the back of my mind its still when, not if it comes back but I don’t miss the monthly hospital visits.
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.
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.
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.
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.
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.
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 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.
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.
Over a year since my last blog post. I’m still here and still keeping the cancer at bay. Repeating the same 4 weeks cycle of treatment and 3 monthly scans.
The last year has been good and I plan to be here for a while.
But the main reason for the post is that it’s 3 years on Sept 7th since my cancer diagnosis. I think that’s worth celebrating with a post.
When I was first diagnosed I assumed the worst. Expecting imminent death. I then didn’t know if I’d make the Christmas and then if I’d make a year.
In the back of my mind is 5 years. That seemed to be the best I could expect in terms of life expectancy and I’m hoping to crash through that and be around for many years to come.
Immunotherapy is amazing.
I wouldn’t be writing this blog without her. Sharing my diagnosis and journey, bringing cancer out of the dark into a place to be discussed openly and without shame.
Seeing her deal with bowel cancer with dignity and flare made me realise I didn’t have to suffer in silence. That sharing helps people learn, enables support and removes stigma.
I listened to the You, Me and the Big C podcast every week, I listened to old episodes and realised that what I was going through was normal and others were in the same boat.
I wasn’t existing with cancer, I was able to LIVE with cancer.
I had some thoughts and concerns and she responded to some of my messages with help and guidance. She was a normal person dealing with cancer and showing everyone, warts and all, what it was like.
Some of her last broadcasts were difficult to listen to, that someone had to go through that much to just trying and see another morning was hard to comprehend so when she announced in May she was receiving end of life care I wasn’t surprised, but was still sad.
When it was announced last week she had finally died there was a very public display of sadness from the world but I was quiet and reflective. I was sad, I shed some tears watching the BBC documentary. But I was grateful for her and the podcast she was part of.
I hope the team find the strength to continue the podcast and keep the discussions of cancer going as they help so many people.
“No Evidence of cancer currently”
Straight from my oncologist on Tuesday afternoon. I’ve had a “full and complete response to the immunotherapy”
I’m so grateful for medical science and for the whole medical team that has supported me at various stages.
Friends and family are rightly really pleased for me, and the whole family.
So why don’t I feel as happy?
Probably because while I’m no longer in pain, or in imminent danger of death, my life has been turned upside down. I still have chronic fatigue caused by the immunotherapy and breathlessness caused by asthma.
These two are severely limiting in my day to day life still. And this gets me down when I cannot do something I feel I should be able to.
Eg: Playing which the dogs in the garden and then struggling to walk up the stairs. simple things.
People just think cancer has gone now so why not move on and stop playing “The C Card’, and I understand that, but I’m going to be facing the knock on effects for a long time to come.
My treatment is continuing for the next 12 months every 4 weeks with a CT scan every 12 weeks. So I’ve got to deal with the fatigue for a while.
Don’t get me wrong, I’m managing the fatigue a lot better, I can work almost a full day and hope to get to a full day soon. And it will continue to improve as my fitness levels (very) slowly rise.
For now, I’m extremely grateful to still be here but I still have a mountain to climb.
I’m not in any way religious. But I’ve had news recently that seems to warrant the tag “miraculous”.
Following my surgery in early May I’ve made a good recovery with no issues at all apart from it’s set me back a few months in my fitness journey, so basically back to zero.
There no pain, the wound healed perfectly but I’m very tired at the slightest physical effort. So baby steps to start building that up.
Back to work in a few days.
But the good news initially came about 3 weeks after surgery at my follow up with the renal cancer nurse. I was told that the initial investigation of the kidney that they removed showed no obvious signs of active cancer. Just the necrotic tissue where the cancer was.
She warned me it still needed to be looked at under a microscope but did say that when I was discussed a few days earlier in a MDT meeting the Oncology team stated they’d not had anyone respond to treatment as well as I had.
That was amazing news, although I had lots of questions that stupidly I didn’t think of until after I left the appointment. No cancer seen? Where did the tumour go? Etc.
Then last week I got a call from her with a promised follow up after it had been examined thoroughly.
No sign of active cancer.
I was silent for a moment, then asked about the tumour that was stuck at 4cm for the last 3 scans. That was no tumour, that was the remaining necrotic tissue. The immunotherapy completely removed the cancer from my kidney!
I’ll admin to crying again but this time at the good news.
The next steps are unknown but I’ve since had another round of immunotherapy and am expecting to keep having this every 4 weeks forever.
Words spun around in my head, cancer free, remission, normal life. I’ve yet to speak to my oncologist and this will happen in a few weeks when they have the results of my latest CT scan, taken 3 weeks after surgery.
I hope that shows no tumours anywhere.
So my immediate future looks brighter. Still full of sleep and fatigue but I hope to lose weight and get fitter to aide dealing with the fatigue.
I’ve been increasing walking distances slowly and tomorrow I’m doing some light boxing conditioning with a friend. I can moderate that as needed and hope this will be my go to regime going forwards.
I’ll introduce work, walking further, cycling and motorbike riding in the coming weeks and aim to get close to where I was before diagnosis.
We’ve also finally felt brave enough to book a couple of weeks in the Sun at the end of September. Something I wouldn’t have thought possible a few months ago.
It’s happened twice now so I don’t think it’s a coincidence but any sort of physical exertion is wiping me out currently. Just over 10 days out from surgery now.
I’ve done a couple of walks now and both have ended with me feeling sick and like my insides have been juggled around. It’s odd as I feel absolutely fine before I start
Apart from that, the only other pain I still have is my right arm. It still looks and feels like it’s been through a mangle and I’d like to know exactly what was done to it during my operation to make it hurt so much. I’m still dosing up in pain meds because it hurts. A constant ache right in the centre of my forearm. If I twist or pull it then god help me it hurts!
Generally though I feel much better than I thought I would. I just want to get back to being able to walk without subsequent discomfort.
I’ve been in bed all day today. Following a poor night of sleep where I was aching everywhere and couldn’t find a comfortable position.
There’s a strange pulling sensation in my abdomen and a sharp pinch whenever I move so I’ve tried not to move much.
The pain meds are barely keeping the edge off
But I’m not too worried, I’ve had some major surgery and my body has been through the wringer and this is just another stage of healing.
Hopefully I’ll feel more mobile again tomorrow and get my appetite back. It’s interesting how the road to recovery isn’t flat and has ups and downs.