Big Steve Big C

Tag: fitness

  • Goodbye 2023 hello 2024

    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    Cancer stories on the internet are out of date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.

  • It’s official

    “No Evidence of cancer currently”

    Straight from my oncologist on Tuesday afternoon. I’ve had a “full and complete response to the immunotherapy”

    I’m so grateful for medical science and for the whole medical team that has supported me at various stages.

    Friends and family are rightly really pleased for me, and the whole family.

    So why don’t I feel as happy?

    Probably because while I’m no longer in pain, or in imminent danger of death, my life has been turned upside down. I still have chronic fatigue caused by the immunotherapy and breathlessness caused by asthma.

    These two are severely limiting in my day to day life still. And this gets me down when I cannot do something I feel I should be able to.

    Eg: Playing which the dogs in the garden and then struggling to walk up the stairs. simple things.

    People just think cancer has gone now so why not move on and stop playing “The C Card’, and I understand that, but I’m going to be facing the knock on effects for a long time to come.

    My treatment is continuing for the next 12 months every 4 weeks with a CT scan every 12 weeks. So I’ve got to deal with the fatigue for a while.

    Don’t get me wrong, I’m managing the fatigue a lot better, I can work almost a full day and hope to get to a full day soon. And it will continue to improve as my fitness levels (very) slowly rise.

    For now, I’m extremely grateful to still be here but I still have a mountain to climb.

  • A wake up call

    Gotta lose weight. A lot of weight.

    I’ve had the best part of a year doing little activity and suffering chronic fatigue but have eaten as normal.

    I knew I was putting on weight but didn’t care, “Might as well enjoy myself” was my thoughts if I’m not going to be around for long.

    However with recent acceptance comes acknowledging that I cannot continue waiting without exercising. So I stepped on the scales for the first time in 2021…and wish I hadn’t.

    So..

    I’m still in no state to return to bootcamp multiple times a week but walking cycling and gently increasing movement is key.

    If anyone wants to join / help / motivate me you’re more that welcome. A bonus is that losing some weight can only help with the fatigue and tiredness too, win win.

  • 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

    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)

  • Taking my time

    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.

  • Whoosh, another month has gone by.

    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.

  • It’s good, but it’s not over

    I’ve been reminded a few times now that while the CT results are great and show massive improvements. I still have Kidney cancer. Albeit much smaller 😁

    I’m writing this more for my own benefit than anything and just to keep me grounded but I still have aches in my chest when I breath deeply, I’m still very tired all the time and I still ache pretty much everywhere. I still take a high dose of pain medication every day just to get by and occasionally even more to deal with small amounts of breakthrough pain.

    None of this suddenly stops just because I’ve had a great response to the immunotherapy. It will still take time to recover and improve. This is evident by the fact I’ve not really had the energy to get out for any walks in the last couple of weeks so when I went for a short walk on Tuesday I was suprised how hard it was.

    I went for a slightly longer walk today and if I’m honest it nearly finished me. 1.5 miles, that was all, and all flat too but my energy levels, fitness levels and lung capacity have reduced drastically.

    It will be a long and slow road to try and get back to pre-cancer diagnosis levels of fitness, if thats even possible. My mind is willing but the body is sadly lagging.

    Before I get there there’s the small matter of whether I can get a Covid vaccine as not much is known how it reacts with immunotherapy. I’m in the “clinically vulnerable” group so should be eligible.

    Also the not too insignificant matter of a potential kidney removal. Yikes!

    But to finish on a positive note, the news I got in September when I was first diagnosed was devastating and never did we think the tumours could shrink so much in such a short space of time. Could they even disappear completely? For good? Is that a wish too far?

    I was told at the start that my cancer was incurable and would be something I live with for the rest of my life. I hope that the coming months shows me what that might look like.

  • ‘Tis the season…

    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.

  • Forgetting how to breathe

    For the last week or so I’ve been noticing some aching when breathing in. When I focus on it it seems to be an ache at the fullest part of the in breath.

    It feels like my lungs have shrunk and are protesting at being asked to fully expand. It’s more like a muscle ache than a sharp pain. It’s also worse first thing in the morning.

    When I relax and focus I can see I’m not taking full breaths. Almost like subconsciously my body knows it might hurt if I do, so stops. I guess like any part of the body if you don’t use the full range of motion regularly then when you try to extend that motion your body will ache.

    So I’m really focusing on breathing exercises and 3 or 4 times a day making sure to take some really deep breaths for a few minutes. It seems there are gadgets to help with this now. I’ve asked my physio if these are worth investing in as they seem quite expensive.

    I’m obviously hoping it’s just conditioning and exercise and not a sign of progressing illness in my lungs and will continue with that assumption until I know otherwise.

    More fresh air and walking is on the cards and I’ve had a great response from friends wanting to accompany me. Who knows I may even get out on my bike before too long.