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.
It’s been a shitty month or so. I’ve been signed off for work again due to the fatigue and have generally found everything just really hard recently. I’ve had to force myself to get out of bed on some days and try and keep some level of activity. Mood has been pretty low with a lot of soul searching.
I’ve had a couple of sessions with an occupational therapist to help manage the fatigue and work with it. This involves, planning, pacing, resting, breaking things down into small chunks. I’m slowly getting to grips with some of what she showed me but its hard when all you ever want to do is curl up and sleep.
I’m also slowly starting to reduce my dosage of oxycodone from 30mg twice a day to 25mg. The hope is that I don’t have pain any more and reducing the dosage will help with the fatigue as it’s a known side effect.
Annoyingly I’ve not yet seen any benefits from this and have uncovered a small amount of chest aching since the reduction. Also, strangely some withdrawal symptoms I think, with regular headaches and feeling a little ‘displaced’ sometimes. Or discombobulated (great word!).
But I guess the good news is that I’m still here. Although I often ask if this state is worth it. But I then kick myself for being so negative. I had a bit of a wake up call at the weekend when I looked in the mirror and a scruffy old man looked back. I’d stopped taking care of myself and it shows.
I try and look on the positive side but its hard with no energy. I guess this post is more for my benefit than anything else. A kick up the arse if you like.
One of the things that has always lifted my mood is riding my motorbike. It’s a drug free anti-depressant. I last rode my motorbike, affectionately known as “The Beast” ten months ago!. Covid and illness have meant it’s just been languishing in the garage with me occasionally checking it still starts.
There was a time at the start of my illness when is was expecting the worst that I was considering selling it as I really thought I’d never be able to ride it again. This really upset me, maybe more than my diagnosis itself.
Over recent months I’ve been desperate to ride it but knew I didn’t have the concentration, strength or the energy needed. I’ve been slowly working on increasing stamina with walking.
But yesterday morning I woke, the sun was shining and it was a little chilly. I was desperate to go for a ride. But I had an internal dialogue that said I couldn’t be riding my motorbike if I’m not well enough to work. But I knew riding my bike would help lift my mood, my spirits. But what if I can’t manage it? What if I drop it? I was scared. For about half an hour I was teetering on throwing in the towel and giving up any idea of ever riding my bike again.
In the end I just went for it. Slowly I wheeled the beast out of the garage, it started on the first press of the button. The sound made me smile. Carefully I backed down the drive and rode off down the road, wobbling slightly, the bike feeling very alien, VERY heavy.
I was struggling to get round bends, my balance was off, I’d forgotten how to counter-steer, I missed gear changes and fumbled throttle control. I nearly turned round and went home but I carried on.
It felt like I was sitting on the back of an elephant on a tightrope for a while but slowly it started to come back to me, the balance, the control, the wind in my face, the sounds, the smells.
Once the initial nervousness disappeared I realised the weight of the bike disappeared once I was moving.
I was out for a couple of hours and loved it. The hardest part was getting it back onto its centre stand in the garage where strength and balance is needed. After, I ached everywhere, knees, back, hips, shoulders. But I needed that.
It wiped me out though, completely. The concentration needed to ride a bike is taxing at the best of times but yesterday within minutes of getting off the bike I was struggling to stay awake. I was also feeling guilty about riding when off sick from work. But I have to keep working on getting my strength back, my stamina, by any means necessary. They will all help me get the better of the fatigue.
Katie asked me a question last night. “why can’t you work?” a simple question. but it made me think why can’t I work if I can ride a bike? why can’t I work if I can go for a walk with the dogs in the sun?
But the answer is that I can’t concentrate, or focus. I can’t stay awake for very long, my mind wanders, I make mistakes. It’s taken me hours to write this blog post and remove all the typos and mistakes. My brain is mush at the moment. Work needs 8+ hours a day of commitment, skill, finesse at a keyboard. It needs clarity of mind, the ability to plan ahead, juggle multiple tasks, troubleshoot problems. Right now I can manage a short amount of an activity but that then wipes out the rest of the day. I’m no good to anyone right now.
I need to keep building the levels of activity, any activity, while reducing the recovery times. This seems to be taking forever but it is slowly improving.
In other news, treatment number 9 is next week and I also hope to find out the results of the latest CT scan I had taken a couple of weeks ago. I don’t want to build my hopes too much but the last scan in January showed massive reduction in tumour size. I can only hope that improvement has continued.
As we have all found in these strange old times, life goes on.
Steve and I have gone to bootcamp together for years, and now, for the first time really, due to lock down and general apathy on my part, I find myself at bootcamp without him. We have a lot of mutual friends, and I spend a good amount of time answering “how is Steve?”
Quick answer? “He’s doing OK, thank you”
Honest answer? He’s alive, and the last scan showed that the tumours have signicantly reduced in size, but right now he’s actually as poorly as he was when he was first diagnosed. The treatment appears to be making him as fatigued as the cancer did, and he still gets terribly short of breath with even the slightest exertion.
He’s tried going back to work, but has struggled and after a 4 week phased return, he managed less than 2 weeks full time before being signed off again.
I’m struggling with a lack of….. Direction? Clarity? I know it’s not an exact science, that nobody can tell us what the future is going to hold, but apart from the time we spent with the consultant when we first discussed treatment options, all we have had is a 2 minute phone call each month to say that his blood test results are OK and he’s good to go for that treatment cycle.
I feel like I need more than that. I feel like I need someone to help me understand if this is as good as he’s going to be, or whether this will improve. I feel like I can’t plan anything – and nobody is volunteering that sort of information to us.
Steve feels like he knows enough, and I respect that, but our heads work very differently to each other lol!
Maybe I just need someone to tell me that they can’t tell me what I’m desperate to know?
In the meantime we carry on carrying on – grabbing moments when we can, planning our days to optimise the times he is feeling better.
And Wednesday I finally get to have my haircut. And I’m sure suddenly all will seem well in the world once more!
I’ve felt good for a few months now. Tired but getting on with life with few side effects. I’ve been working and generally been positive about the future and feeling “normal” again.
This started to take a downward turn about 10 days ago with the fatigue slowly becoming more evident. Like someone slowly turning Fatigue Volume up in a daily basis.
Today I’ve barely been out of bed. I had my blood test done this morning for treatment number 8 on Thursday but then spent most of the day sleeping.
I’ve been worried about this all over the weekend with times when I had no energy and just moving was a monumental effort.
The hospice nurse suggested speaking to my Oncology team and they believe this is just normal side effects and that it does come and go without rhyme or reason. They’ll get the results of my blood tests tomorrow.
I also spoke to my GP who already had the results of my bloods taken this morning and was able to confirm they were all normal so nothing else is going on.
He suggested I may have been a little hasty in my return to work and suggested a slower approach would have been better. I thought I had taken it slow but he mentioned taking months to get back to full time, not weeks.
He’s signed me off work for another week and told me to listen to my body. So that’s what I’ll do. I feel guilty just being so useless, so tired and a drain on everyone around me. I hate letting people down and that’s what I’m doing at work.
But I can’t fight it. I have to let my body recover and deal with the aggressive treatment I’m having. Trying to do too much too quickly is, as I’ve discovered, a recipe for disaster.
I’ve posed my concerns on an online forum of people on immunotherapy and my symptoms are typical. Joint aches are normal. They come and go and if they get too bad I can be put on steroids (more drugs). The oxycodone is also very potent and can cause issues on its own. The fatigue can go from non existent to full on bed-ridden overnight with no warning.
I guess I’m slightly relieved it’s nothing new and others are in the same boat with the same symptoms but I’m also a little despondent that I thought I’d got away with bad side effects and finding out they can come back at any time and be worse or better without warning is tough to take.
I’ve been back at work for almost a month now and have to say it’s been good to get my brain working again. What I didn’t expect was that it would be so hard on me and my body both mentally and physically.
I’m so lucky to have understanding employers and supporters but am very conscious of seeming to be unreliable and am paranoid that one day they’ll say enough is enough. And I’d understand. They need staff they can rely on.
I was hoping to be back full time after 2 weeks of working half days but after 3 weeks I was still struggling with fatigue where I’d shut my laptop at 2pm and then feel like I’ve walked 10 miles. I was so exhausted but not just tired. Sleep didn’t fix it and often I couldn’t sleep as I had aches and pains.
I just had no energy.
On top of this is the seemingly random ways that side effects strike. I can be feeling ok for days then suddenly get stuck down with stomach cramps and nausea (today and yesterday) or aches in my legs or back (last week) or headaches or constipation or any number of seemingly minor ailments that come from nowhere, last from a few hours to a few days and then go.
Each time it happens is a stark reminder to me I’m still very sick. On the outside I do my best to be normal and do forget from time to time.
I just hope the side effects are positive and mean the treatment is still actively kicking cancer to the kerb.
There are still some improvements. I can walk and hold a conversation a lot easier. I can walk a little further now than I could a month ago.
I just wish I could get rid of the fatigue. It’s like I’m held down by a weight and held back. Everything is a battle to just do stuff. It’s got me down the last few days and reached a peak today where I just had to curl up and sleep from about 12pm to 8pm.
I was also feeling really low following the news that racing driver and occasional Top Gear presenter, Sabine Schmitz died overnight from breast cancer, aged 51. She was diagnosed in 2017.
Sabine Schmitz 14 May 1969 – 16 March 2021
She got 4 years from diagnosis. It made me ask “what will I get?!”.
I know I shouldn’t think like that and I honestly try not to but it’s natural to wonder, to be concerned. To be scared.
A while since my last post and that’s been a good thing as I’ve been trying to get back to some normality.
I get reminded by my body when I do too much too quickly so and as I’ve had a couple of false starts I’m taking a return to work very slowly.
I’m now almost two weeks in, admittedly just working mornings for now as that’s all I can manage before exhaustion sets in. But I’m enjoying it and it’s good to use my brain again.
General fitness is still poor and chest can still get tight when I over do things so walks are slowly getting longer again and pace increasing.
Along with the return to work is the fact this is the longest I’ve gone with no symptoms shining through. 11 days. Until today.
I see this as a sign the immunotherapy is having another burst of activity. I’ve felt a bit strange the last 24 hours, a bit light headed, almost tipsy and “twitchy” with a headache. Then I had the joys of waking up with bad constipation. I downed tools at 2pm today and slept for 4hrs straight.
This isn’t a subject people like to share but for cancer patients it’s front and centre. The high dose of painkillers causes it. The flip side is that the immunotherapy can cause bouts of diarrhoea. Lose/Lose
So while unpleasant, I’m constantly treading a fine line of staying in the middle of both. Mostly I win. I have medication for both ailments to swing the balance the other way.
Related to the fitness, I’m a gadget freak so am trying something to see if I can get my lung capacity back to somewhere approaching normal.
I had an Airofit Pro arrive this week and will be doing daily “breath training”. I’ll report back in a few weeks on how successful it is.
I didn’t pay the full price as it was on offer but you can find out more here: Airofit Pro (full disclosure I paid for this myself)
Every now and then I get a stark reminder to take it easy. I may feel ok but as soon as I start wandering around the house doing little tasks I find myself out of breath
A couple of times yesterday I was doubled over just catching my breath as I got caught out trying to do normal activities and forgot to pace myself.
I hope this does improved but for now I just need to remember to pace myself and allow myself to recover. My walks are slower again but thats ok. After what my lungs have been through it’s no surprise they’re a little tired.
The temptation is to just stop and feel sorry for myself but that doesn’t help. Pick myself up and carry on, just a bit slower.
It’s not the normal we knew and loved, but it’s a new normal.
With the pandemic, everyone on the planet is adjusting to a new normal, so we’re no different there – just one of us has come out of this significantly less healthy than he was this time last year.
When we got the fantastic news from the scan I naively thought we’d hit upon some kind of magic cure, that Steve was now “better”, that with the lung tumours “undetectable” he would have that pesky kidney out, and we’d move on with our life, just the way it was.
But he’s not “better” – the reality is he’s actually not much better than he was at his worse – he’s not in as much acute pain, but he is still aching all over a lot of the the time, and chronically fatigued most of the time.
We’re hoping this will get better, that this is his body adjusting to the ongoing treatment. That he’ll get back to the 4 mile walks he was managing just at Christmas time, but at the moment he’s pushing it to have a little “constitutional” around the block most days.
This time last year we were at Lulworth Cove, having a few days away together with the dogs. The girls joined us for a couple of nights and we spent a brilliant day walking from where we stayed to Durdle Door, spending a couple of hours in the sheltered sunshine on the beach, then heading back over to Lulworth, getting caught in an incredible hail storm as we crested the hill, that continued all the way down the steps to Lulworth. We ended up in the pub, dripping wet and freezing cold with 2 whimpering, shivering dogs. Steve bravely walked them back up the hill to where we were staying and wrapped them up warm, then headed back to the pub for lunch with us.
Those are the days that memories are made of, and I’m sure we’ll find a way to make plenty more 🙂
Treatment number 6 tomorrow. I’ve done this 5 times already so am very experienced and know what’s going to happen.
So why am I scared stupid about my treatment tomorrow?
I know what if feels like, the side effects I’ll likely get and how long they’ll last.
I know about the cold sweats, headaches, leg aches, back ache, chest pain and fatigue that can last anywhere from a few hours to a few weeks.
I know about the uncomfortable feeling of the medication first circulating my body, the little bit of nausea and sweating after about 10 minutes that lasts just a few minutes.
I know I’ve been lucky not to have any of the major side effects that can accompany such a toxic and aggressive treatment.
So why am I terrified about treatment #6?
Could it be the fear it’s worked it’s magic and that’s it? I’m not going to continue responding? I’ve had my good news and now it has to be bad? That’s how life works isn’t it?
The truth is I don’t know. What I do know is that I’ve felt crappy all day, really tired and lethargic. My I think this is mental rather than physical.
Having treatment tomorrow is a reminder I’m still seriously ill despite feeling ok for a few days.
I guess I still have some adjusting to do to get used to this new normal.
I need to get used to 1-2 weeks of feeling crappy, 2 weeks feeling ok. To get used to a constant tight chest and aches in my lungs when breathing deeply. To get used to getting tired really easily.
I’ve been told these symptoms may get better over time but that’s long term.
Short term, this is it.
But you know what? I’m ok with that and despite this sounding a little like a pity grab, it isn’t.
I no longer have to fight to breathe, or have stabbing pains in my chest, or struggle to get out of bed every day. I no longer get kidney pains in my back or have no appetite (well maybe I could do with that coming back every now and then)
I also no longer have a constant dry hacking cough that annoys me and everyone around me causing me to double up and nearly pass out from time to time.
So yes I’m scared about tomorrow and that’s normal. That’s ok. This whole journey is scary. Life. Is scary.
