Big Steve Big C

Author: steve

  • A good few days

    Since the weekend I’ve had a good couple of days. We had a nice walk around Frensham pond in the sunshine on Tuesday, just me and Kira. I noticed that the drop in temperature has affected my breathing a little. Made it a bit harder but nothing too bad.

    Appreciate the simple things now

    Today I had a very wet walk with the dogs. If I’m honest I prefer it like that as it’s quieter.

    I’ve been sleeping well, no vivid dreams for a few days either. Depsite me not getting my new meds until today. I’m hoping this improves even more. I hadn’t realised that a lot of people have the same issue with morphine buildup in the body.

    I also need to keep my breath exercises up as my chest is very tight when I breath deeply. Not a sharp pain but just a muscle ache. I’ve been unconsciously not breathing deeply again so when I do I just feels tight. I hope the by forcing some regular deep breaths that it start to feel normal again.

    My thinking is that lungs are muscles and like all muscles if you don’t use their full range then they weaken.

  • Time for a change

    I finally did it and spoke to one of the nurses at Phyllis Tuckwell.

    After a day of the worst vivid dreams so far and a bit of dizziness when trying to sleep (think room spinning when drunk) coupled with some nausea and some creeping breakthrough pain for the first time in a few months I finally had to admit something has to change.

    Luckily she phoned me first and forced my hand but agreed that it’s likely my kidney isn’t excreting the morphine (whatever that means) properly.

    I’m going to be swapped to something that’s twice as potent as morphine, but I’ll have the same equivalent dose. It’s also supposed to have less chemicals and be tolerated by the body better than morphine. I think she said it was Oxycodone.

    I also questioned why I’m starting to get some breakthrough pain now, even though it’s minor. I was told it’s likely just “things progressing”. Not sure what that means but it’s worrying.

    I’ve also written to one of the nurses who works with Professor Pandha to query why removing my kidney was dismissed right at the start. I never really understood but just went with what I was told.

    I’ve heard of a couple of people with the same presentation as me, on the same immunotherapy now but they had kidneys removed right at the start and are having great results. Obviously I don’t know my results yet but it sparked a curiosity in me why it wasn’t an option. I’m someone who needs details and facts.

  • Ever have one of those days?

    I fully expected the day after my 4th round of treatment to be spent dealing with a bit of flu, hot flushes and tiredness but hadn’t expected to also have to cope with feeling particularly fed up generally down. Full on grumps, feeling sorry for myself. Whatever you want to call it.

    As usual I had no energy and I wanted to get out for a walk but just couldn’t be bothered. Everyone was carrying on as normal and I just wanted to curl up and hide.

    Luckily our dogs Meg and Winston are good at picking up moods and can often lift mine just by being there. This worked on Friday morning for a bit.

    It didn’t last long though. It probably wasn’t helped by a row the previous evening between some other family members that really upset me. I’m well known for being grumpy quite often and I know I can be but every now and then it happens and I just don’t know why.

    People know not to ask “why are you being grumpy?” As that never helps.

    This low mood carried on to today, Saturday and everything was getting to me. In the end I forced myself to go out for a walk. But that didn’t help either. I just wanted a quiet walk and everywhere I went was rammed with people. I drove to a few spots then gave up and went home. Sometimes I just want to be alone.

    The dogs still tried to cheer me up.

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    In the end I just wanted to be on my own so went to bed at about 7.30. I still don’t know what the main problem is but I know I’m not happy about whatever it is. I hope a good nights sleep might help.

    I’ll put it down to hormones being messed around by the treatment.

  • An anti climax

    I’ve now had 4 rounds of immunotherapy and if I’m honest I feel a little flat now.

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    Firstly the time has gone so quickly that it’s hard to believe it’s almost 3 months since we first discovered I had renal cell carcinoma (Kidney cancer) that had spread to my lungs.

    Since the discovery there’s has always been something next to prepare for. Now, there’s nothing for 6 weeks as I take a break from treatment.

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    At some point in the next 6 weeks I’ll have another round of scans to see what’s been happing to the cancer. I’m pretty sure I won’t find out the results until my next consult with Professor Pandha at the start of January.

    I need to make the most of these 6 weeks and focus on my health and fitness, keep working on managing the fatigue and change the balance from it managing me.

    I need to try and enjoy Christmas and New Year even though Covid is going to make it very different for everyone

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    One thing I do know is that it’s going to be a long six weeks.

  • But what if…?

    I should be used to this by now but this morning I woke full of dread. Scared about today’s 4th round of treatment and worried what will happen if it’s not working for me.

    I know it makes no sense but common sense has never been around when anxiety strikes. I’ve had to try quite a few coping techniques that I’ve not used for a while. Today I used the “what if” technique.

    This is where you take the subject of your anxiety and worry and assume it’s true and ask yourself what will happen if you’re right. That will take you down a path to a conclusion. Then you ask what if again. And you keep challenging yourself at every conclusion.

    The aim is that eventually you get to a point and say “what if” and the answer is “nothing bad“

    Winston Churchill called his depression his “black dog” as a way of giving it a physical manifestation and allowing him to control it rather than allowing it to control him. But even he had days where it got too much so that he couldn’t even get out of bed.

    I have to remind myself that I’m not the only one dealing with anxiety and depression and that when you throw cancer into the mix it’s ok to have down days.

  • The kindness of others

    I honestly don’t know what to say. This morning my JustGiving page for Phyllis Tuckwell hospice just ticked over £1000.

    I setup a just giving link at the start of my cancer journey to see if I can turn a negative into a positive. I set a hopeful target of £500 and shared it on Facebook and the front page of this blog.

    Slowly but surely this number crept up to and then overtook my target. I’m so grateful to everyone that has made a donation to such an amazing charity. One that I am benefiting from already.

    I must also say a massive thanks to my amazing Wife Katie (who also posts here as tatgibbon). She has been making no end of festive Covid face masks and posting these out to anyone that asks. All she’s asked for in return is a donation to our JustGiving page.

    Also a huge thankyou to Robbie Wheatland and everyone at Bootcamp UK Farnborough for a very generous donation earlier this week.

    The page is still open so please, if you can, feel free to still make a donation. The link is https://www.justgiving.com/fundraising/sd-phyllistuckwell

  • Gearing up for round 4… and worrying

    “A bit weird.”

    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.

  • Sunday night blues

    Steve said something last night that really made me think. I was sat on the sofa, all ready for my Sunday night “I’m a celebrity…..” fix, marking the end of an all-to-short weekend with my customary “ugh, I don’t want to go to work tomorrow” throw-away comment.

    “You’re lucky you’re well enough to go to work”

    And it made me think. Yes, I really am lucky enough that I am well enough to go to work. I don’t even know what not being well enough to go to work long-term feels like.

    Like most of us, work is what I do for most of the week. I don’t want to say it defines me, but for 5 days a week I’m “Katie from HR”, and I love being that woman. Apart from 2 short periods for maternity leaves, I have always worked.

    Steve enjoys what he does, he’s found his niche and I gather he’s very good at what he does (I’ve no idea specifically what he does, but it involves computers and technical stuff!). He enjoys talking to people who understand what he does about what he does.

    And, for the moment at least, he has misplaced that part of his identity. That reason to get up and go every morning has got up and gone. 3 months ago he’d have jumped at the chance of jacking in work for a while, and he’d have spent his days happily driving his Tesla, fixing gadgets onto his motorbike, walking the dogs, watching youtube videos of people having motorbike adventures and dreaming of his own, but being off work unwell doesn’t afford you those opportunities. He isn’t well enough to do all the things you imagine doing if you have an extended period of time off work.

    We’re hopeful the treatment is doing it’s thing, and that the scans in January will show the tumours are somewhat battered by all the amazing effort his body is putting in, and that he will soon be feeling well enough to pick up work again.

    In the meantime, I must try and remember how lucky I am to be well enough to get to go and do work I enjoy, and not to moan about how short the weekends are.

  • Dreaming and Confusion

    Over recent weeks I’ve been having quite vivid dreams. The sort you remember clearly even once you’ve woken up. Some of these have been very distressing and a few times Katie has woken me up as I’ve been making strange noises.

    A few times recently I’ve woken up really confused. Not knowing where I am, what time it is. I’ve also been dizzy and generally discombobulated on these occasions.

    Over the weekend, I woke up suddenly from one of these dreams, it was light so must have been about 7am. With the dream still vivid in my mind I went to stand up to go to the bathroom and immediately lost my balance and sat back down on the bed. I think more from shock than anything else this upset me and I felt foolish as I started to cry a little bit. I was so confused.

    I’ve been trying to find out what could be causing this and there’s many culprits but the most likely I think is the morphine. Odd that’s its happening now after being on it for so many weeks. I’ll speak to medical teams this week for advice.

  • 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.