Big Steve Big C

Tag: feelings

  • The end of an era

    I finally admitted to myself after days of procrastination that I cannot ride my motorbike any more. I just don’t have the energy.

    I passed my bike test in 2005 and never looked back. I loved riding it and every year until 2019 I had at least one bike trip away with amazing friends.

    My current and last bike is only 2 years old and has done less than 3000 miles. I rode it last weekend, loved it but it wiped me out completely. Riding is a physical effort and one I cannot do safely any more.

    I’ve had a total of 6 motorbikes in that time and have some great memories and my bike was my drug, my release, my medication.

    But it’s just going to sit in the garage and continue to depreciate so I need to sell it and put the money to one side for when it’s needed. And it breaks my heart but I have to admit when I’m beat.

  • How are you?

    When someone says “how are you?“, and gives you “that look”, I wonder what they want to hear.

    Do they actually want to hear…

    “I have cancer and the treatment is causing horrific fatigue where I can barely make it up the stairs without stopping to take a breath..

    Also when I am awake (which is rarely) I struggle to concentrate on anything at all. There is not a moment where I’m not thinking how long have I got left and how long have I got to put up with this. ..

    I struggle to do things I like and am depressed most of the time now. ..

    My treatment is allowing me to stay alive longer but I’m not actually living, I’m merely existing…

    I more often wonder if I should just stop all treatment and just get it over with…

    Quite frankly I’ve had enough…

    But thanks for asking!”

    Or is “I’m doing ok thank you” good enough.

  • Why bother?

    All this week I’ve had no energy, felt aches and pains all over again and just been feeling low. A struggle to get up in the morning and start work and all I want to do is sleep.

    Sounds like normal depression. I’ve never understood why it comes and hits me out of nowhere. But depression doesn’t explain the aches and pains and is more a result than a cause.

    Sometimes I feel lucky my treatment is working but others I just wonder why I bother. I’m just existing at the moment and really can’t see anything positive.

    Wake up, work, lunch, sleep, dinner, tv then sleep and repeat every day of the week. Weekends we walk the dogs instead of work. I still spend most of it sleeping.

    I don’t have energy for anything else and some things in life right now are just draining. Is it too much to ask for a quiet life with no drama. I can’t get away from it sometimes.

    People think they have helpful and positive stories about friends or relatives with cancer that lasted beyond expectations. It might be 1, 3, 5 or 10 years but that doesn’t help. It just tells me at best I might see 60. If I’m very lucky.

    This gets me down too. Why not just stop fighting and actually get some life back and enjoy whatever time is left. That seems selfish though.

    Another 4 weeks has passed and I’ve got another round of treatment to look forwards to next week. I know that’s going to make me feel rough for a few days.

    I wonder why I’m still taking treatment that takes away all the energy I have. It may give me more time but at what cost? It’s never going to stop unless it stops working. Then what?!

    I’m not brave. I’m a coward. I don’t like feeling pain and I don’t like the energy sapping, empty battery feeling that engulfs me either. Other people have much worse symptoms and side effects and just get in with it. I have it easy comparatively but I’m not sure how much longer I can keep doing it.

  • “It’s good news”.. so why am I disappointed?

    It’s treatment week.. again. Number 12 this time. 12 in total and 8 on just Nivolumab. As always the anxiety is rising despite the fact that the last treatment gave me virtually no problems at all. Which was a first.

    It’s also been time for another CT scan, last one was in April and I have them every 3 months now. Last week I had the latest one.

    I got my usual, pre-treatment telephone consult yesterday afternoon and they had the results already.

    “It’s good news!” I was told.

    Fluid on lungs virtually disappeared
    Nodes in lungs stable – no growth (still almost disappeared)
    Tumour in Kidney – stable – no growth. Still at 4.3cm

    “How do you feel?”

    “Disappointed” I said.


    Photo courtesy of Matthew Henry

    I knew this was likely to happen. The first two CT scans showed good reduction in tumour size from its original 12cm but thats when immunotherapy is most effective, at the start. After that its job is to stop the cancer getting worse. So in that respect it’s working.

    But I wanted more. I want the damn tumour gone. Knowing it’s there means a constant axe hanging over me. The fact it’s made no difference is really disappointing. I’ve always been told my cancer is incurable so I shouldn’t really be surprised but it’s still hard to accept.

    Well as long as I’m still here and able to type this then I should be happy right?

    In other news I’m in my 4th week back at work after a very long break in April. The fatigue still makes a full day impossible at the moment but I’ve getting a lot done in the time I am working so I’m pleased I’m able to still contribute to the workload.

  • Taking my time

    Every now and then I get a stark reminder to take it easy. I may feel ok but as soon as I start wandering around the house doing little tasks I find myself out of breath

    A couple of times yesterday I was doubled over just catching my breath as I got caught out trying to do normal activities and forgot to pace myself.

    I hope this does improved but for now I just need to remember to pace myself and allow myself to recover. My walks are slower again but thats ok. After what my lungs have been through it’s no surprise they’re a little tired.

    The temptation is to just stop and feel sorry for myself but that doesn’t help. Pick myself up and carry on, just a bit slower.

  • I should be used to it by now.

    Treatment number 6 tomorrow. I’ve done this 5 times already so am very experienced and know what’s going to happen.

    So why am I scared stupid about my treatment tomorrow?

    I know what if feels like, the side effects I’ll likely get and how long they’ll last.

    I know about the cold sweats, headaches, leg aches, back ache, chest pain and fatigue that can last anywhere from a few hours to a few weeks.

    I know about the uncomfortable feeling of the medication first circulating my body, the little bit of nausea and sweating after about 10 minutes that lasts just a few minutes.

    I know I’ve been lucky not to have any of the major side effects that can accompany such a toxic and aggressive treatment.

    So why am I terrified about treatment #6?

    Could it be the fear it’s worked it’s magic and that’s it? I’m not going to continue responding? I’ve had my good news and now it has to be bad? That’s how life works isn’t it?

    The truth is I don’t know. What I do know is that I’ve felt crappy all day, really tired and lethargic. My I think this is mental rather than physical.

    Having treatment tomorrow is a reminder I’m still seriously ill despite feeling ok for a few days.

    I guess I still have some adjusting to do to get used to this new normal.

    I need to get used to 1-2 weeks of feeling crappy, 2 weeks feeling ok. To get used to a constant tight chest and aches in my lungs when breathing deeply. To get used to getting tired really easily.

    I’ve been told these symptoms may get better over time but that’s long term.

    Short term, this is it.

    But you know what? I’m ok with that and despite this sounding a little like a pity grab, it isn’t.

    I no longer have to fight to breathe, or have stabbing pains in my chest, or struggle to get out of bed every day. I no longer get kidney pains in my back or have no appetite (well maybe I could do with that coming back every now and then)

    I also no longer have a constant dry hacking cough that annoys me and everyone around me causing me to double up and nearly pass out from time to time.

    So yes I’m scared about tomorrow and that’s normal. That’s ok. This whole journey is scary. Life. Is scary.

  • 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.

  • 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.

  • 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.