Big Steve Big C

Tag: work

  • Long time, no posts

    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.

  • Nine down…

    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.

  • Wiped out.

    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.

  • Ups and Downs #2

    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.

  • Ups and Downs

    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)

  • 1 week down

    What a shitty week. I hope the rest of 2021 gets better.

    I’ve had a week of work where I’ve basically achieved nothing as I just cannot focus and concentrate properly. I feel really guilty as I was hoping, rather naively it seems, to be able to get back into the swing of things quickly.

    I’ve seen 2-4am at least four times in the last 7 days as my mind is so busy worrying about treatment and what’s happening (or not happening) that it’s screwing with my sleep.

    And to round off the week I’ve had full on flu like symptoms and aches all over following my treatment yesterday. The first single Nivolumab treatment knocked me for six today.

    I had a temperature, I had to reach for the breakthrough pain relief for the first time since switching to Oxycodone to try and deal with everything aching. I slept from 3pm to 10pm (and am now wide awake)

    I had started the ball rolling to try and get a CT scan done privately then out of the blue I got a call today from Frimley Park hospital radiology (NHS) wanting to know if I was ok for a CT scan next Wednesday. Er.. yes!

    So while I’m desperate to know if my treatment is working I now have even more “scanxiety” knowing that I will find out next week.

    So I’m really hoping that “things can only get better” now.

  • First meltdown of 2021

    It all got too much for me this evening and the pressures of not knowing, trying to work, worrying about treatment, future plans all boiled over resulting with me in a “small” heap.

    I’ve not had anything particularly difficult to do at work in the last 2 days but I’ve struggled to achieve anything yet, my mind is all over the place and I cannot focus so even the simplest of tasks are taking a long time. The biggest worry is if my treatment is working and this is taking over my whole being currently. I have to know, I need to know. Try as I might to focus on anything else and without fail my mind will come back to this one subject.

    I’ve had a headache all day (first in months!) and this sapped my energy. I’ve had a call with registrar for Professor Pandha this afternoon who confirmed we’re carrying on as planned into the “maintenance” stage of treatment on Thursday. Again I cannot just accept it’s working. What if it’s not! Why is my life saving not available to book on the NHS? I hate Covid.

    She asked how I was feeling. Physically I’m “ok”, I have aches in my chest still during deep breaths and my back and legs are really achy but nothing major, so physically I’m much better than I was in September. But mentally?! thats a different story. Mentally I think I need a tight fitting jacket and a nice quiet room with padded walls.

    I’m proceeding with a request to get my CT scan done privately on Bupa. They’ve confirmed it will be covered but there’s all sorts of reasons this isn’t a great idea. Not least being that in an ideal world my subsequent scans would come from the same machine to ensure consistent results. I don’t care. £100 Bupa excess? are you joking? I’d pay ten times that if I could get a scan and ease this worry.

    Assuming I get the go ahead to get a private scan it’s still not likely to happen for a week or so so this lingering worry isn’t going anywhere soon. It is physically draining.

    People try to sympathise and “understand” what I must be feeling and I get that but there’s no way they can really understand how I feel. My life is at risk and I don’t know if my treatment is working.

    Think about that. You had a target that by the end of 2020 you’ll know if everything you’ve done, all the pain and aches and time and treatment are working or not. But for no fault of yours or anyone else’s (well apart from the “covidiots” not wearing masks or ignoring the rules) you cannot find out. Not only that but no one knows when you will be able to find out. This isn’t a case of a new car being delayed, a holiday being postponed. This is life and death.

    Maybe I’m being overly dramatic but its how I feel.

    The headache put me in a dark room this evening, I’ve not been hungry due to excessive worry and I think just the lack of energy, tiredness, aching, feeling particularly down got too much and I needed to let it all out. I hate crying but I’ve done so much the last few months it seems normal to me now. I don’t like people seeing my cry as I feel so vulnerable (I don’t seem to have a problem writing about it though!)

    I’m tired of the stress and would do anything to just be normal old Steve again. Anything!

  • Back at it

    4th January 2021. It’s nearly 4 months since I discovered I have kidney cancer. 4 months where the world has just been a blur, a rollercoaster of emotions and feelings and pain and tears and plans and hope and medication and appointments and phone calls.

    We’re now into a new year and I need to accept this is the new norm now. My cancer cannot be cured but right now it is something I can live with, with just a few reminders that it’s there.

    I started back at work today, albeit in a much reduced capacity for now, hopefully I will be able to get back up to full speed in the not to distant future but I won’t lie, the last few days before starting back have had my anxiety at full alert. Terrified of what’s changed, can I still work and do my job, what if I can’t?, can I stay awake? am I still useful?

    On top of this, I still haven’t had a CT scan so still do not know if the immunotherapy is working. We’re continuing treatment as if it is, with a blood test today and a consult tomorrow but without knowing if it’s working what can the consult possibly tell me. If it’s not working then we’re wasting time by not switching to a new treatment. I will have the first of the single, monthly immunotherapy treatments on Thursday afternoon.

    I just want to know if it’s working or not. My life literally depends on it.

    Anxiety is my biggest issue right now, it’s affecting my sleep, my appetite, my concentration. Work, treatment, health, all add up. I’m having to dig deep into my coping techniques and sometimes they work, other times they don’t.

    If people stopped being so stupid and selfish then we wouldn’t be having this rise in Covid numbers again and I could at least lose one of the reasons for anxiety. I see pictures on social media of friends, intelligent friends, completely ignoring social distancing. I want to scream at them “you might be killing me!” .. but what would be the point.

  • 2021, I have high hopes for you

    I didn’t think I was going to enjoy New Years Eve 2020, but surrounded by my most important people, I had a lovely evening. We played some silly games, I had a couple of small beers and we watched the fireworks and drone show from London on TV.

    I did find myself strangely emotional watching the drone show and fireworks, they caught the moment and caught me off guard when reviewing 2020 and looking forward to 2021 and I found myself crying quietly amongst the noise and flashing lights from the TV. The first tears I’ve shed since before Christmas Day which is surprising.

    I know it’s been a tough year for a lot of people, with Covid making all the headlines and affecting everyone. Some falling ill, some losing their livelihoods, some struggling with mental health while others just doing their best to get by. I’ve seen some stories of friends overcoming all sorts of obstacles that life has thrown at them as well as facing challenges just as difficult as me.

    My Cancer diagnosis in September has obviously been my personal focus for the last 4 months and there have been days I’ve been very ill and days where you couldn’t tell I was ill. However through it all I have been surrounded by amazing love and support from Katie, Kira and Rhian as well as family and close friends. I’ve also been supported by Phyllis Tuckwell Hospice, the staff at St Lukes and Frimley Park. Just as importantly my employer and my Boss has been incredibly supportive with no pressure on me to do anything other the look after number one.

    Next week I plan to start back at work in some form although I’m not kidding myself that it will be a few weeks before I can get near to “normal”, if that even exists any more.

    I also have the first of my “single” immunotherapy treatments. Blood test on Monday, consult with my oncologist on Tuesday and hopefully (it’s not been confirmed yet), treatment on Thursday.

    I’ve tried really hard over Christmas to remain positive and upbeat, take time to chill when I need it but not to get wrapped up in self pity. I think I’ve succeeded as we’ve had a nice time. It’s hard when we can’t get out and socialise and the 4 walls start closing in but we’ve all been patient with each other and made the most of what we have. A few times I’ve felt close to tears but then take a step back and look at everything I have to be thankful for.

    I’m still here, I feel ok, I have amazing support, a beautiful family, I’m financially secure. I can’t really ask for more than that.

    I have lots to look forward to in 2021 and lets face it it’s going to be hard to not be better than 2020. I want to get back to work to keep my mind busy, I want to find out that the treatment has been stopping the cancer from growing, I want to ride my motorbike, I want to see friends start their families, I want to drive my Tesla, I want to see the back of Covid and the return to normal daily life.

    Most of all I want to be able to be fit and healthy enough to enjoy the coming year.

    I have one resolution for 2021. I want to be here to make resolutions for 2022.

  • Trying to be useful again…

    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.