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.
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.
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)
I’ve done pretty much nothing but sleep this weekend. Since my treatment on Thursday I’ve been completely wiped out with aches all over my body and a complete lack of energy
I’ve had to have breakthrough pain relief every day so far and Saturday I had 2 extra doses. This is just to deal with everything aching as I can’t take ibuprofen. When your whole body aches constantly it’s just completely draining.
It’s strange as I’ve been getting used to the treatment and each of the first 4 was slightly less problematic that the previous one however I’ve had a six week break and just had the single treatment and now it has completely floored me.
I can only hope that like previous doses, my body gets used to it and this becomes more tolerable as time goes on.
We’re hoping that this coming week gives us the good news we’re desperately looking for following my CT a scan that I’ll have on Wednesday. I want to hear the worlds “your tumours haven’t grown”.
It’s been a strange week since my last blog post. We’ve put up our tree and lights and I’m starting to feel a bit more Christmassy. A few Christmas films have been consumed, along with some mince pies and my first beer in 4 months.
But this week has been dominated by two things. Bloody COVID again. The south east of England is seeing another major spike and apparently a new strain. The U.K. government isn’t handling things well introducing last minute changes, confusing tiers and generally buggering up Christmas for millions.
Selfishly for me, I’m concerned how this impacts my CT scan and ongoing cancer treatment as lots of hospital treatments and operations are now being cancelled. Katie is expecting that work for her will creep in over the few days she had off as all their emergency procedures are coming back into play with daily emergency meetings being called every day, including weekends. I have to call the CT department this week to see what’s happening with my appointment.
The Covid restrictions don’t really impact our Christmas plans much but I know a lot of people who are not going to be celebrating with their loved ones due to this pandemic. I really feel for them.
The other focus this week has been wellness/fitness for me. It’s been… odd. One day I’ll feel absolutely fine, as if I had no illness at all then I have a few days with no energy, even simple walks become exhausting again. Then be ok again for a day.
I’ve had joint and muscle aches and really struggled with sleep. Since coming off the morphine and switching to oxycodone my sleep has been terrible. I’m tired but just cannot sleep due to aches in my hips, knees, back, elbows. Pretty much anywhere.
I’ve now had at least 4 nights where I’ve seen 5am before falling asleep. This then screws up the following day. I plan on speaking to the Macmillan nursing team tomorrow to see if these are normal side effects of the switch and if anything can be done.
What I crave more than anything is consistency. The changing symptoms are hard to deal with when you’re used to feeling a bit better.
That’s how I feel so far this week. I wake up most mornings with a croaky or non existent voice. Ready for a good nights sleep even though I’ve just woken up. But also creeping in this week is worry. I wake up then start to worry about the treatment. Is it working?
I’m hyper vigilant over niggles, pains or anything different in my body so assume anything unusual means the treatment can’t be working. I’ve been getting small amounts of chest pain first thing so that must mean it’s not working. It couldn’t be anything else!
I had my bloods taken yesterday as usual for treatment week and this was the first jab that really hurt and gave me a small haematoma on the back of my hand. A sure sign the treatment isn’t working! Despite the fact it had gone after a few hours I’m looking any anything and seeing it as a sign.
The truth is that it is still going to be six weeks before we find out whether immunotherapy has been successful and I think this worry could get out of control if I don’t check it and acknowledge it now. the last thing I want is to have this as all I think about, especially over Christmas and New Year.
It’s a viscous circle. I can’t do much because of the fatigue and the mind has time to rest and wander. This is when the worry peeps over the wall. I need to keep busy to keep my mind busy and stop it wandering. I still haven’t found that balance yet.
I made a decision earlier in the week to try and offer some help at work. I know they’re struggling with workload and me being off isn’t helping but they’ve never made me feel guilty. In fact the opposite, “forget about work, concentrate on yourself” has always been the message. The last week or so has had me feeling a bit like a spare part, not doing anything other than get in the way.
So yesterday was the day. I was reminded again I’m still off sick so they’re not expecting a lot from me but were happy I wanted to try and keep busy.
I managed about an hour of work in the morning. My concentration was all over the place and the task I completed should have only taken 20 minutes. But it was a start. A break for lunch and a brief rest and I managed another hour in the afternoon. Again significantly slower than normal and at the end of it I could already feel myself flagging. When I say work, I mean sit at a computer, tapping keys, managing cloud computing resources. Hardly manual labour!
I was using my brain for the first time in months and it was tiring. I never knew how tiring it would be and it took me by surprise. However I marked it as a success.
Until this morning.
I woke up as usual at about 7.15am with Katie but immediately fell back to sleep until almost 11am. I was still tired, more tired than I’d been for weeks. A deep sapping of energy when moving and getting out of bed was an effort. I stayed in bed, watched a bit of TV until about 3pm then fell asleep again! This time until 7pm! I didn’t move at all in those 4 hours!
I had a call over lunch with an occupational therapist from Phyllis Tuckwell to specifically talk about managing fatigue and one thing she said resonated with me. True fatigue is not cured by sleep. It has to be managed and controlled. Something I clearly have a lot to still learn about. Luckily she emailed me a lot of information to help.
I was falling asleep again at 9.30pm and I’m struggling to keep my eyes open as I write this.
Now I’m not sure if this excessive tiredness today is down to using my brain for a few hours yesterday or not. I can’t believe it is but I’ve never been one to believe in coincidences either. It’s worrying though.
