Big Steve Big C

Tag: emotions

  • Decision Made

    I’ve missed two cycles of treatment now and I have to admit I’m surprised at how much difference it’s made.

    I have more energy, I’m sleeping less I have fewer other side effects. I’m more “me”

    When I told my oncologist this last month he immediately said we should stop treatment, he thought it was the right thing to do.

    He said even if the cancer came back there were still lots of treatment options for me and the prognosis was good.

    We agreed to hold off on a final decision until before the 3rd cycle of treatment was due. That’s this week.

    The thought of stopping treatment still scares me however I appreciate fully that I will feel better for it.

    So I suggested a compromise.

    I’m going back on treatment this week and they’re organising a new CT scan as I’m over due for one. If the results of that scan are still all clear even after no treatment for 11 weeks. Then I will stop the Nivolumab..

    I’ll give myself more chance to be “me” and fully accept the risks.

    I will stop just existing and continue living.

    In the meantime I hope the NHS change their stupid rules where if you stop Nivolumab for 12 weeks you cannot go back onto it on the NHS. That makes no sense whatsoever.

    So if I need more treatment in the future it will be something different. That’s what’s really scary. 😦

  • Dame Deborah James

    I wouldn’t be writing this blog without her. Sharing my diagnosis and journey, bringing cancer out of the dark into a place to be discussed openly and without shame.

    Seeing her deal with bowel cancer with dignity and flare made me realise I didn’t have to suffer in silence. That sharing helps people learn, enables support and removes stigma.

    I listened to the You, Me and the Big C podcast every week, I listened to old episodes and realised that what I was going through was normal and others were in the same boat.

    I wasn’t existing with cancer, I was able to LIVE with cancer.

    I had some thoughts and concerns and she responded to some of my messages with help and guidance. She was a normal person dealing with cancer and showing everyone, warts and all, what it was like.

    Some of her last broadcasts were difficult to listen to, that someone had to go through that much to just trying and see another morning was hard to comprehend so when she announced in May she was receiving end of life care I wasn’t surprised, but was still sad.

    When it was announced last week she had finally died there was a very public display of sadness from the world but I was quiet and reflective. I was sad, I shed some tears watching the BBC documentary. But I was grateful for her and the podcast she was part of.

    I hope the team find the strength to continue the podcast and keep the discussions of cancer going as they help so many people.

  • It’s official

    “No Evidence of cancer currently”

    Straight from my oncologist on Tuesday afternoon. I’ve had a “full and complete response to the immunotherapy”

    I’m so grateful for medical science and for the whole medical team that has supported me at various stages.

    Friends and family are rightly really pleased for me, and the whole family.

    So why don’t I feel as happy?

    Probably because while I’m no longer in pain, or in imminent danger of death, my life has been turned upside down. I still have chronic fatigue caused by the immunotherapy and breathlessness caused by asthma.

    These two are severely limiting in my day to day life still. And this gets me down when I cannot do something I feel I should be able to.

    Eg: Playing which the dogs in the garden and then struggling to walk up the stairs. simple things.

    People just think cancer has gone now so why not move on and stop playing “The C Card’, and I understand that, but I’m going to be facing the knock on effects for a long time to come.

    My treatment is continuing for the next 12 months every 4 weeks with a CT scan every 12 weeks. So I’ve got to deal with the fatigue for a while.

    Don’t get me wrong, I’m managing the fatigue a lot better, I can work almost a full day and hope to get to a full day soon. And it will continue to improve as my fitness levels (very) slowly rise.

    For now, I’m extremely grateful to still be here but I still have a mountain to climb.

  • A miracle?

    I’m not in any way religious. But I’ve had news recently that seems to warrant the tag “miraculous”.

    Following my surgery in early May I’ve made a good recovery with no issues at all apart from it’s set me back a few months in my fitness journey, so basically back to zero.

    There no pain, the wound healed perfectly but I’m very tired at the slightest physical effort. So baby steps to start building that up.

    Back to work in a few days.

    But the good news initially came about 3 weeks after surgery at my follow up with the renal cancer nurse. I was told that the initial investigation of the kidney that they removed showed no obvious signs of active cancer. Just the necrotic tissue where the cancer was.

    She warned me it still needed to be looked at under a microscope but did say that when I was discussed a few days earlier in a MDT meeting the Oncology team stated they’d not had anyone respond to treatment as well as I had.

    That was amazing news, although I had lots of questions that stupidly I didn’t think of until after I left the appointment. No cancer seen? Where did the tumour go? Etc.

    Then last week I got a call from her with a promised follow up after it had been examined thoroughly.

    No sign of active cancer.

    I was silent for a moment, then asked about the tumour that was stuck at 4cm for the last 3 scans. That was no tumour, that was the remaining necrotic tissue. The immunotherapy completely removed the cancer from my kidney!

    I’ll admin to crying again but this time at the good news.

    The next steps are unknown but I’ve since had another round of immunotherapy and am expecting to keep having this every 4 weeks forever.

    Words spun around in my head, cancer free, remission, normal life. I’ve yet to speak to my oncologist and this will happen in a few weeks when they have the results of my latest CT scan, taken 3 weeks after surgery.

    I hope that shows no tumours anywhere.

    So my immediate future looks brighter. Still full of sleep and fatigue but I hope to lose weight and get fitter to aide dealing with the fatigue.

    I’ve been increasing walking distances slowly and tomorrow I’m doing some light boxing conditioning with a friend. I can moderate that as needed and hope this will be my go to regime going forwards.

    I’ll introduce work, walking further, cycling and motorbike riding in the coming weeks and aim to get close to where I was before diagnosis.

    We’ve also finally felt brave enough to book a couple of weeks in the Sun at the end of September. Something I wouldn’t have thought possible a few months ago.

  • T-1 day – this is really happening

    My overnight bag is packed, I’ve read and re-read the short stay surgery guide. Had my “last supper”.

    Nil by mouth from midnight but that’s not going to be an issue as I’ve felt sick all day.

    Alarm set for 6am. Katie’s going to drive me there and drop me off. No visitors allowed on the day surgery ward so I’ll be by myself again. Much like most my medical appointments and hospital visits since my cancer diagnosis.

    I’m not expecting to get much sleep tonight but shouldn’t be a problem as I’ll probably be waiting around tomorrow for a while. An uncomfortable and short NHS bed awaits.

  • T-3 days, and I’m terrified

    7am on Friday is when I need to arrive at hospital for my kidney removal (Radical Nephrectomy). I have a covid test at 4.10 this afternoon and from then on I have to completely isolate.

    There’ll be another test first thing Friday and only of that’s also clear will the operation go ahead.

    I had to abandon a scheduled lunch out at the last minute yesterday as it occurred to me that it probably wasn’t sensible to go and sit in a crowded cafe for over an hour. I’m paranoid something will happen to stop the operation.

    I’m also worried to the point of constant nausea about the operation itself. I should be blasé as I’ve had lots of operations, including two keyhole surgeries. So I know roughly what to expect.

    I’m also being seen by the best Renal Surgeon in the South of England, who’s done literally 1000’s of these.

    So I shouldn’t be scared…but I am. I’ve convinced myself something will happen “on the table”. I have so many risk factors counting against me that I believed something is likely to go wrong. Maybe I’ve watched too many episodes of ER or Greys Anatomy.

    It probably didn’t help that I actually watched an operation the same as mine on YouTube a few days ago. Morbidly fascinating, I wanted to stop, but couldn’t.

    I’ve taken these next few days off work, as there’s no way I could concentrate on anything important. A few hours on the motorbike today helped but I’m now clock watching until I have to leave for my test later.

  • Warts and all

    The last few posts on this blog don’t make for pretty reading and a few times I’ve been tempted to take some down. But living with cancer isn’t pretty or easy and there are downs as well as ups. I think it’s important to show everything.

    The good news is that I feel a bit better. I’ve got some additional anti depressants that seem to be helping, they also help with sleep but make me really tired. My Dr says my body should get used to them within a few weeks.

    I’ve also arranged to start some counselling at the Phyllis Tuckwell Hospice and start later this week.

    I’m still struggling a bit with life in general and without any warning something will trigger a full meltdown where I just want to feel normal again without any of the tiredness, or aches or breathlessness or upset stomach or any number of minor ailments bought about by treatment.

    Probably the biggest decision I’ve made is to take a treatment break at the end of the month. Today, September 6th is one year since I was first diagnosed. And in that year I’ve had 13 treatments and God knows how many blood tests, pills, phone calls, injections, cannulas, scans.

    Exhausting is an understatement and I’ve been told it’s ok to take a break from treatment for a maximum of a couple months.

    Takes some time, recover and recharge and start again.

    Next week I start a two week holiday from work. Sounds a bit odd after all the time I’ve been off work sick but during all of that time I never had a break or went away.

    We’re going to Dartmouth in Devon for a few days for some RnR and then will have a staycation for the second week. Try as much as possible to enjoy ourselves and forget about cancer.

  • 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.