Big Steve Big C

Category: Uncategorized

  • 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.

  • Another a&e visit

    I contacted the oncology team today about the chest pain and they wanted me to go to a&e to get checked out. “Better safe than sorry”

    So at 10:15 I went voluntarily into A&E. I was seen very quickly and the waiting room was empty when I arrived. Hooked to an ECG within 10 minutes and the staff took my “vulnerable” state very seriously.

    Within 20 minutes I was in the minor area and in a cubicle having another ECG with the promise of one more to come.

    I mentioned how quiet it seemed and the staff gave a nervous laugh. A&e minors is quiet but the rest of the hospital was very different. All departments and wards were at capacity.

    The doctor I saw was worried about a possible lung clot so organised blood tests and a chest x ray and she was going to see if she could get the results of my CT scan from last week. This was about 11:30.

    All tests were completed by 12pm but I got the impression I was in for a long wait for results. By this time the pain had actually gone, completely. I was lying on a slightly elevated bed and something about the position had helped.

    The doctor kept checking in and apologising about delays but couldn’t give me any ideas on time. Unfortunately with no pain to focus on my mind started wondering and worrying. What were they going to find, how long would I be here, is this another overnight stay.

    I was also acutely aware of helicopter noises at least 2 or 3 times from outside and got very nervous about being in hospital. You hear of people catching covid in hospitals more and more these days and for the first time ever I felt scared and vulnerable.

    I told the doctor at about 1.30pm that the pain had gone and I wanted to go home but she still wanted to rule out a clot. She was waiting for the CT results and if they were inconclusive she wanted to do another chest specific CT scan. This was just more delays in my mind but I understood.

    The next hour was a mental battle with my anxiety levels rocketing. I wanted to get out of the hospital and go home. For my mental well being the hospital was no longer a place I wanted to be.

    I first mentioned discharging myself at about 2.30pm and my doctor was nowhere to me seen. I was so anxious, and alone. I had no pain, I was blocking a room and I could hear it had got a lot busier outside with staff struggling to find space for new patients. I felt like I should not be there anymore.

    To her credit the doctor completely understood my predicament but did strongly reiterate that a missed blot clot could be fatal. If I was still in pain there would be no question, I’d stay as long as needed but with no pain, chest x ray and blood tests clear I just wanted to go home.

    At 3.20pm she came to me with a handwritten “discharge” note for me to sign stating I was aware of the consequences by choosing to leave. She made me promise to come back at the slightest sign of symptoms again. I was almost in tears signing that form at the relief to go home.

    It feels silly now thinking about how worked up I got in such a short space of time but when you’re just waiting with nothing to do the mind is a powerful weapon.

    Since I got home I discovered I can bring the pain/ache back by lying flat on my back or on my left slightly. Turn to the right and it goes away completely. I now think I’ve pulled a muscle in my chest by over doing things over the weekend and lifting something awkwardly.

    I’m confident my pain today is not serious as I’ve had a chest X-ray and blood tests that haven’t shown anything and getting checked out was the right thing to do but in hindsight I’d think twice before going back into a&e in a pandemic where hospitals are swamped.

    I’d think more carefully about everything that’s happened over previous days rather than just “I have a new pain, panic.”

  • Hyper alert to changes.

    I’ve been very aware of a slow increase in aches in my chest over the last couple of weeks and I’ve done the best I can to not assume the worst but it’s very hard not to.

    The last couple days I’ve had an ache on my sides when I lie on either side. Nothing sharp or severe, just something that wasn’t there before. Today I have a slight sharper pain, like a soft pinch at the front lower part of my chest when breathing in deeply.

    It’s uncomfortable enough that I’ve had to have a dose of liquid oxycodone for breakthrough pain.

    I’m trying to tell myself it’s just my lungs not being used to being fully inflated but I know deep down it’s probably something I should get checked out.

    But I’m scared to.

    What if it’s the start of the next stage of my illness? But equally what if it’s something simple than can be easily treated? I don’t like hospitals and my last two a&e visits ended with being admitted and that’s the last thing I want.

    I will, apprehensively reach out to the oncology team tomorrow but part of me just wants to ignore it in the hope it will go away. That’s Men for you I guess.

    Surprisingly I do get periods where I forget I have cancer then I get annoying reminders like this. This is living with cancer, I’m still new to it but doing my best.

  • 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.

  • 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!