Big Steve Big C

Tag: future

  • 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.

  • 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.

  • We can talk about “it”, don’t be scared

    This is a tricky post to write. I don’t want to offend anyone as I know people care so much and I have so many friends and relatives worried about me that I want to just be honest.

    I have cancer. It’s ok to talk to me about cancer. We can mention the word cancer. It’s not a taboo subject or “she/it/he who must not be mentioned” like Lord Vol…..

    It’s ok to laugh and joke about it. I’ve had time to accept it but I know that it’s a difficult subject to talk about but please don’t avoid it. It doesn’t have to be awkward.

    It’s not going anywhere and not talking about it doesn’t magically make it disappear. Ask me questions if you’re curious.

    I have nothing to hide, talking about my cancer helps me and it will help you too.

    Most importantly do not feel sorry for me. “I’m so sorry” is something I’ve heard so many times and I know it comes from a place of caring but you don’t need to be sorry. You didn’t give me cancer.

    I don’t need pity either. I can see it in the eyes of some people when they talk to me and again it’s from a place of caring but I’m ok.

    Yes it’s shitty to have cancer but it is what it is and while I wish I didn’t have it I have to get on with it.

    For everyone that has come along with me on this journey so far and that has contacted me, thankyou. I’m amazed at the feedback from my blog, the number of followers is staggering to me but as I’ve mentioned before, writing helps me first and foremost. Anything else is a bonus.

  • 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.

  • 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.

  • A strange few days

    We’ve all been feeling good (within reason) for a few weeks now, almost normal you could say. On Friday we met one of the nurses from Phyllis Tuckwell who wanted to explain what they would be able to do not just for me but for all of us. As the conversation moved quite openly and freely we suddenly hit some subjects we weren’t prepared for. No fault of anyone just the natural flow of conversation.

    Wham! The realisation that my cancer isn’t going anywhere came back and knocked me and Katie for six. While we hope that the need for caring, hospital bed, regular nurses etc is years and years away. It’s there, in the future somewhere.

    It was during these last few days that friends started planning next years motorbike trip and I made a blog post while on quite a downer.

    But! We have great friends and support network and they’re doing their best to pick us up out of this brief slump.

    I’ve booked my hotel for my bike trip next June! And am honestly looking forward to it. We’re going to book some time away for Katies (50th – ssssh!) birthday in March.

    While we’re not going to stick our head in the sand regarding the cancer we can only deal with the here and now. Right here and now we’re doing well.

  • What the future holds

    When I first got my cancer diagnosis I did what apparently most people do when they get the same news, I went to a very dark place and assumed I was going to die in a matter of days or at most weeks. I had 2 weeks of assuming the worst before I spoke to a consultant with the treatment plans who mentioned years.

    Stupidly, I even started worrying that I wouldn’t get to see the full series of Long Way Up, the latest motorbike adventure by Ewan MacGregor and Charley Boorman. Their first two series from 2004 and 2007 are what got me into motorbikes and annual trips into France and Germany with friends. Apple TV+ was releasing one episode a week.

    Knowing “years” was initially comforting but as the weeks have gone by some of the darkness has crept back. What does years mean? Will I see 60? The statistics say no. Do I actually want to know, should I just live everyday as if its my last. I usually trying and push it aside with some positive thoughts about the here and now.

    Now, friends that I usually travel with each year for an annual motorbike trip are planning the 2021 trip. The 2020 trip was cancelled due to Covid and everyone is hopeful that vaccines and controls will mean a 2021 trip is possible. That’s not stopping them from making sure their bookings are refundable though.

    Now what do I do? I have no idea if I will even be here, yet alone be able to ride a motorbike or go on a road trip. This makes me really sad and angry at firstly the cancer and then covid. I’ve been going day to day feeling ok recently. Almost normal apart from the tiredness but then this slaps me hard as a wake up call. I still have cancer and my future is uncertain.