Big Steve Big C

Tag: treatment

  • 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.

  • 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.

  • Finally!

    I had my CT scan yesterday. I was hoping for some instant relief but knowing that the hospitals are so busy due to Covid and that it could still be another couple of weeks before I get my results has dampened the relief somewhat.

    However for the first time in over a week I woke up today and didn’t feel the need to just yank the duvet back over my head. In fact I actually got on with some work. Arguably more than I achieved all of last week in just a couple of hours this morning.

    Somewhat ironic when I was signed off work for another month from Monday.

    I really hope I’m coming out of this “fug” that has enveloped me for the last few weeks and has been very obvious to anyone outside looking when viewing my blog posts. The mood has gone down and kept going.

    I had another visit from one of the Phyllis Tuckwell nurses yesterday and completed another wellness questionnaire and there were no surprises that it shows I’m pretty down at the moment.

    I’m going to contact the counselling team at the hospital next week to see if talking to a stranger will make my problems disappear.

    I’ve now made it to 6pm without a nap today and while I’m very tired and will have an early night I see that as a small victory as that’s not happened for a few weeks either.

    And as I was awake this afternoon I had one of these. First time in about 20 years.

  • How was your weekend?

    I’ve done pretty much nothing but sleep this weekend. Since my treatment on Thursday I’ve been completely wiped out with aches all over my body and a complete lack of energy

    I’ve had to have breakthrough pain relief every day so far and Saturday I had 2 extra doses. This is just to deal with everything aching as I can’t take ibuprofen. When your whole body aches constantly it’s just completely draining.

    It’s strange as I’ve been getting used to the treatment and each of the first 4 was slightly less problematic that the previous one however I’ve had a six week break and just had the single treatment and now it has completely floored me.

    I can only hope that like previous doses, my body gets used to it and this becomes more tolerable as time goes on.

    We’re hoping that this coming week gives us the good news we’re desperately looking for following my CT a scan that I’ll have on Wednesday. I want to hear the worlds “your tumours haven’t grown”.

    Fingers crossed.

  • 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!

  • Damn coronavirus

    For the first time this year, Covid has really screwed with my plans. Unfortunately in a way that could affect my illness.

    I was expecting to have an appointment for a new CT scan any day now so we can see if the treatment has been working. Unfortunately, due to covid, no CT scan appointments are currently being booked. There’s no indication how long this will go on for.

    This means that when I have my consult at the start of January 2021 we will have no indication of whether the immunotherapy has worked or not.

    I’ve been told that they’re going to assume it has been working in the absence of any other information and also because my symptoms have not got worse over the last few months.

    This offers little comfort as we could be missing the fact it’s not working and moving onto new treatment sooner rather than later. I want to be confident but that niggling voice at the back of my mind is saying “what if it’s not working?”

  • 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.

  • 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.