Big Steve Big C

Tag: update

  • 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)

  • Well that was unexpected.

    This is the picture of a very happy man! One who has just been given some amazing news.

    My treatment is working. Not only that but it’s working better than anyone could have hoped.

    A good outcome was the tumours staying as they were and no longer growing, but this is great news.

    The tumours in my lungs are no longer visible on a CT scan. Meaning they’ve either gone or are now smaller than the resolution of a CT scan.

    The tumour in my right kidney has shrunk! From 11cm to 5cm. More than half!! I’m so relieved.

    We carry on with monthly treatments now and when covid has come back under control and operations are being carried out again they will consider removing my kidney.

  • Merry Christmas

    I have the best present of all.

    I’m still here, still fighting and planning to annoy everyone for many more Christmases to come.

    Thankyou everyone for you kind words and support so far. It means a lot.

  • Looking for positives

    2020 has sucked. Big time. But if you look between the crappy headlines there is positive news to be found.

    For 3 years the first digit of my weight in pounds was a three. Even at 6’8” tall that’s too heavy.

    I lost quite a bit of weight at the start of this cancer journey and the medical staff started to worry but it did stabilise after a few weeks.

    Since the middle of October the first digit has been a 2 and I’ve maintained my weight to within 1lb for the last 3 weeks.

    Clothes fit better and people have noticed. I’ll take that as a positive. 2020 is not all doom and gloom.

    Other positives:

    I have an amazing support Team

    Plus two soppy dogs who are always there when you need them (and when you don’t)

    The elf on the shelf finally met its match

    And all the important food arrived in the shopping delivery yesterday.

    I saw Santa while looking for Jupiter in the sky

    Merry Christmas Everyone. I’ll speak to you on the other side.

  • 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.

  • An anti climax

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

    image

    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.

    image

    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

    image

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

  • Still here, still waiting, still sleeping

    Not much happening at the moment so I’ve not had much to write about. This “radio silence” leads people to worry about me. I don’t want people worrying unnecessarily so here’s an update.

    Since my 3rd immunotherapy treatment I’ve still got off very lightly. Fatigue has got worse, getting occasional hot flushes and some minor aches in my elbows, wrists and knees. All manageable.

    I think my body is getting used to the 120mg of morphine a day as I’m getting an occasional twinge of pain in my chest. Nothing major but I’m hyper alert to any changes in my body currently. It could also be down to me not taking paracetamol regularly any more. Maybe I should rectify that 😏

    I’m getting so much sleep at the moment that you wouldn’t have though it possible to still be tired but I am. I think its because the quality of sleep is very poor still. Keep waking, turning. I’m having some very vivid dreams too. Almost nightmarish occasionally but not quite but I’ve woken a few times quite upset what I’d been dreaming about.

    I’m trying a weighted blanket to see if that helps. I’ve heard good things. I’ve found already that you get what you pay for as the first one from Amazon that arrived yesterday is going back. Not much good when it deposits a fine grit over everything 😳 New one, slightly more expensive on order.

    I’m still getting out and about, either to Drs, pharmacist, for a walk. I was able to take the dogs on a flat 2 mile walk a few days ago. Easy. Then another walk over the weekend had a small hill. Not so easy. Puffing like a steam train when I got up to the Wellington Statue in Aldershot

    I’ve been humbled by some of the feedback on my blog, from all over the world too! Lots of people relating to my story and lots of people complementing my writing style. I’m just being honest. I’m not comfortable talking to strangers or even friends sometimes but I can write and find it much easier to express myself in the written word.

    Thank you to everyone reading and commenting. Your support means a lot to all of us in #teamdavis

  • Bringing the blog up to date

    All of my posts so far have been backdated to the actual dates of events but now we’re pretty much up to date. The feedback on my blog has been overwhelmingly positive so thank you.

    I had my 2nd immunotherapy treatment on Thu Oct 15. There was a long wait of over an hour between the first drug going in and the second one. Apparently this is due to the pharmacy only making them up on the day and just being very busy. This is quite normal apparently I was just lucky that it was quicker on the first treatment.

    The only noticeable side effect from the 2nd treatment was some hot flashes a few times a day for an hour or so. No way of controlling it other than open windows, fans and wearing shorts all the time to try and stay cool. These lasted just over a week before fading out.

    The fatigue and constant tiredness is there still and I’ve had days where I’ll have a sleep, be awake 20 minutes then need another sleep. I keep being told this is your body fixing itself. I hope so!

    I’m getting into a routing of taking drugs and pain meds every day and have had no ill effects from the morphine dose I’m on (60mg twice a day).

    I’ve also had a few phone consults with a physiotherapist from Phyllis Tuckwell too. She’s trying to help me get my breathing and lung use back to normal. I’ve had a couple of months of not breathing deeply and fully using my lungs and have to be reminded to keep breathing to full capacity.

    She also wants me building walking stamina up. I’ve spent a lot of time recently just lying still and moving as little as possible to avoid pain so I’ve got to start gentle walking again and get moving before I get long term muscle and joint issues.

    This last week I started with 0.6 miles, then 1.2, 1.6 and yesterday 2 miles. I feel I may have gone too far too fast as my knees have gone all stiff over the weekend. I hope its the walking as joint pain is also a potential side effect of the immunotherapy.

    I have my 3rd immunotherapy treatment next week which means I have to have a blood test on Monday, a consult on Tuesday and then the treatment on Thursday.

    As a family we’re holding up well. Occasionally the emotions spill over but that’s ok as we support each other and have lots of friends and family looking out for us. We have so many offers of help but realistically there’s not much people can do.

    I still ask that people don’t feel sorry for me. Don’t give me that sad look when you talk to me. Be normal. We can talk about it, it doesn’t have to be the elephant in the room and its much more comfortable to just be at ease talking about cancer. Yes its shitty bad luck but we can laugh and joke about it too.

    I’ll finish this post with an example. A few weeks back right when my cough was causing me grief I was having a particularly noisy coughing fit on the sofa in front of the family and Rhian says, completely straight faced,

    “will you die quietly!”.

    I laugh out loud and so does she. 😂 You have to find light in the darkness.