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.
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.
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 still here. No posts since December means one thing, there’s not been much to say.
Health wise, I’m still waiting for my operation to have my Kidney removed. This has been delayed as they have concerns over the state of my lungs and breathing and how well I’d deal with anaesthetic.
I was given inhalers over Christmas due to breathlessness via telephone consults with my GP and the surgery team wanted me to see a chest specialist to see what’s actually happening.
I saw him at the start of March and confirmed I have asthma and just 60% lung capacity. It’s possible its related to the tumours in my lungs but unlikely. It’s also possible I’ve had Covid without realising it and that’s damaged my lungs.
Either way I have strong steroids by tablet and inhaler until the start of April and then they’ll see if I’m ready for surgery.
The downside of the delay means it’s unlikely I’ll be able to go on my planned Motorbike trip in June, so that will be 3 years without a trip now. Hopefully I can sort something out for later in the year.
I still have the monthly Immunotherapy and am happy that I now spend less time there as they’ve increased the rate of infusion so I get it over 30 minutes now, rather than 1 hour previously. The downside is that this makes me feel very tired and headachy for a few hours now. But I’d still rather that than spend any more time in hospital than needed.
The fatigue is still there and some days are better than others but I can still only manage just over half a day working each day. I’ve added a bit more time each day and I finish work and then sleep for 2-3 hours straight after. I still then sleep 8hrs at night too.
I had a day in the office today for the first time in over 2 years which was strange. It was a nice change and good to see people again. Felt almost normal.
The final issue on the health side is weight, which I have to reverse. I spent over a year not caring what I ate as I didn’t expect to be around but now I’m planning for things 2,3 and 4 years away. The fatigue and tiredness make exercise really hard and walking and cycling are the only things I can manage currently. Having an e-bike helps with the hills 😅
I’m ashamed of where I am now weight wise and know it’s not going to change quickly so I’m giving myself until the end of the year to get back to somewhere reasonable.
In other news we’ve taken advantage of the crazy second hand car prices in the UK (due to long lead times on most new cars). We’ve said goodbye to the Tesla Model 3 Performance.
It was a lovely car for the 2 years we had it and it was great having supercar performance (0-60 in 3.2 seconds!) in an ordinary 4 door family saloon. I used to frequently tease drivers of fancy German and Italian cars. But common sense has now prevailed and we’ve changed to a Tesla Model Y. It’s a lot more practical, just as clever and cheap to run but also much easier to get in and out of as we’re not sitting inches off the floor any more 😂
We were able to change cars and even get some money back because of the high trade in on the Model 3.
It’s not as fast as the Model 3 so my drivers licence should be a bit safer now.
Treatment day again so that’s means I’ve got some time to kill while I wait for the infusion to complete.
If I look back to a year ago, it’s fair to say things were grim, not just for me but for everyone. Covid had us all locked down again and unable to see friends and loved ones. Christmas was going to be different.
As we’re facing a rise in the new Omicron variant right now it’s possible we could still face a Christmas lockdown. If not Christmas then almost certainly New Year. But everyone seems to have been looking forward to the festivities with more vigour this year. Certainly earlier. But also as if we all appreciate what we missed last year.
We’re the same, our tree went up a week or so earlier than normal, before Rhians birthday, which is a first. There’s been no “bah humbug” from anyone. we’re hoping we can still see friends and family over Christmas.
A year ago I’d been on immunotherapy for 3 months but had no clue if it was working. The thought of an early January scan was looming large. Little did we know just how well it WAS working. The first two scans showed massive reduction and the next two showed continued stability.
Obviously, Cancer has loomed large in 2021. But it moved from a place of dying with cancer to living with cancer. Learning to adapt, go with the flow. Accept new limitations on fitness and fatigue. Getting back to work and keeping my brain active and making myself useful again.
I won’t lie, I’ve had highs and lows, some are here in this blog for prosperity. But they’re stabilising. I’m making plans again.
As if cancer wasn’t enough, Katie has had her own health challenges this year that it’s fair to say have tested her to the limit but she’s remained strong, resolute and always positive. She’s now getting the right treatment and is adapting to her own changes. Getting old sucks, in her head she’s still 21 and fighting against ageing all the time. But throughout everything life has thrown at her she’s remained positive and upbeat. Our rock.
Katie has found a new love this year. Over 6ft tall and a bit thick. Not a man, a paddle board. I think that’s been her escape and she’s had some amazing days out on it not just on the local canal, but also on the Thames and in the sea. Both Kira and Rhian had got in on the act so we’re a 3 paddle board family now. It’s not for me though.
Katie’s spent a lot of 2021 huddled over a sewing machine making face masks likes there’s no tomorrow. She’s made no money from this, instead asking everyone to make a donation to Phyllis Tuckwell hospice.
This has helped raise the total to over £3500 so far for the hospice. Not too late if you still want to donate. 😁👌
Rhian is working hard and seems to enjoy media and comms work still. It’s interesting to see her skills in keeping the world informed about the activities of her health trust on social media. Her highlight for me this year was photobombing an official Royal Family Twitter photo when they had royal visitors. She’s looking forward to being able to travel again and still has an Australian itch to scratch.
🏥Today, The Earl and Countess of Wessex visited Frimley Park Hospital @FrimleyHealth in Surrey to recognise #InternationalNursesDay. 🧑⚕️Their Royal Highnesses spoke to nurses who've been recognised by their peers for their exceptional work during the pandemic. pic.twitter.com/tWCRt0SxKk
Kira is now well into year 3 of nurse training as has definitely hit her stride. Her current placement in a local Emergency Department is showing her she has got what it takes, she seems to be thoroughly enjoying it. We’re so proud of her making this career choice. She also has new man in her life and seems contented.
In other areas, 2021 has been a great year for friends. I’ve seen so many baby announcements but I’m particularly pleased our great friends never gave up and we’re finally gifted the daughter they deserved in October.
Lots of people are now dog owners so that’s been great to watch. We added two more kittens to the family. In a fit of stupor I agreed and before I knew it two male Russian Blue Tabby cross kittens joined us. They made themselves right at home. Scratching, chewing, weeing anywhere they can. It’s lucky they’re cute.
We no longer send Christmas cards, instead making a donation to Phyllis Tuckwell. We’ve done this for many years now. We use mediums such as email, socials, this blog to send seasons greetings to friends and family. This year, a blog post seems as good as any.
We’re hoping for a great Christmas and a less stressful 2022. I’m hoping a beach holiday is on the cards as well as a motorbike trip. It’d also be great if we had no more medical conditions to surprise us.
so I think I speak for all of the Davis family when I say Merry Christmas and a prosperous 2022 to you all.
Last week was treatment week again, number 15 now. Prior to that on the Tuesday I actually had a face to face oncology appointment. First time since my diagnosis. This is because they had the results of my latest 3 monthly CT scan.
I admit to being very nervous going there as I was really hoping for more tumour reduction. The news at the last scan that it was just “stable” was what triggered my downward mental spiral in August. Having had some good reduction I saw it as the start of the end. However I think I’ve come a long way since then and know that anything that is not growth is good news.
I was told that again it is stable with no growth and I was happy with this. I was also told that I was going to be discussed this week at the next MDT (multi disciplinary team) meeting with a view to removing my right kidney, known as a radical nephrectomy. They explained that as I had responded so well that it could be a good option.
It would remove a big bunch of cancer cells. They made it clear that I would never be “cancer free” but removing it takes away a likely hotspot. Apparently we can function perfectly fine with one kidney.
I knew this was a possibility after a year of stability but being told I was a step closer made me both nervous and pleased.
I watched a really interesting Q&A session with one of the leading kidney surgeons in the country, who coincidentally would also be the man operating on me.
Go and watch it.
It’s all done with robots, very clever!
I then got a call yesterday that if I’m happy to proceed then they want to do the operation. No brainer, of course. If you’d asked me what I wanted, this was it but having it confirmed makes it a lot more scary.
Most likely it will be in early 2022.
Until then I’m on a diet, still trying to be more active and working towards returning to work full time in the New Year ( I’m still only working half days)
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.
I can believe my month is up and my next treatment is here again next week.
The last few weeks have been really hard both physically and mentally and this has been obvious with some of my recent posts. Mostly this is down to everything aching and me generally feeling tired again. Continuous Aches and pains are really tiring and not great for my mental health.
I got a bit down at the end of last week when I found my fitness had taken another hit and I struggled to walk a mile. Another walk on Sunday in the snow nearly finished me. It was only a couple of miles. It was a little easier on Monday., the sunshine helped.
One thing I noticed is the the cold air burns my lungs. Apparently while the tumours may have shrunk/disappeared they will have left scar tissue and this will cause some of the aches and pains I still feel in my chest.
This week has been a bit odd with some positives. I’ve been sleeping really well for the first time in ages although I do think this is due to me taking a 10ml dose of liquid oxycodone about an hour before bed. Whether this makes me sleepy or just stops the aches in my legs and back from keeping me awake I don’t know. But I’ll take it. That’s the only time I take it.
I’ve had confirmation that the fluid in my lungs is not at a level that needs to be treated and will probably be absorbed naturally. I still have to think to breathe deeply. It’s not a natural action yet.
I was also given the ok to get my Covid vaccination and had the first part of the Astra Zeneca vaccine this morning. This was after my GP finally added me to the Clinically Extremely Vulnerable list earlier in the week.
Generally I feel a bit of a spare part at the moment. I’m not doing much, tired all the time and feel like I’m just getting in the way. I want to spend the next couple of week really trying to build up my activity levels. Not just going out for walks and exercise but using my brain, thinking about things and trying to get back to normal. Or at least the new normal.
