Where has my determination gone?

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It is exactly 2 years since my diagnosis of incurable renal cancer, with multiple mets, very much stage 4.

At the time, I didn't have any symptoms, only a very small non-painful lump on my scalp, and a small painless lump in my left breast. The cancer didn't appear to be causing any problems at all....and still doesn't! 

Outwardly, I appear well. Up until December 23, for 95% of the time, I continued to lead a pretty much normal life. Since December, things have slowly changed.

My cancer has been stable since immunotherapy treatment. Treatment stopped in July last year, after a second rare side effect happened.

My 3 monthly CT scans since then have been unremarkable, with the cancer still stable.....until the latest scan, done at the end of April.

Yes, the cancer is still stable, BUT the scan shows I have now developed diverticular disease. It explains the recent abdominal pains, occasional constipation, diarrhoea, vomiting. These have happened since I was put on a very high dose of a gastro-resistant drug. 

Why am I in 'The Room'? Because I'm feeling very upset and cross about my cancer 'journey'. All of the medical problems I have experienced in 2 years have been caused by the medications I've been given. The cancer itself hasn't caused any issues. I am really regretting agreeing to the cancer treatment. I think now that it would have been better to let the disease take its natural course. I may not have lasted as long, but I would have avoided developing other permanent health conditions, which have been hard to come to terms with, and affect my day-to-day life.

I am suddenly finding it really hard to be resilient, and determined, and to push on with living my life. This latest medical 'blip' has knocked the wind out of my sails. I have tried so hard over the past 2 years to push through any treatment setbacks, and still try to be fully involved in living. Now I think I've had enough.

I cannot feel motivated to complete unfinished tasks, such as the major garden project, house repairs etc. I feel an urgency to do them, so that the house can go on the market after I die. The money from the sale is going to charities. I just feel it is hopeless to even try to get things finished.

But when I read other peoples' stories, about what they have to cope with, their medical issues, mobility issues, I feel really guilty for complaining about mine.

I need to pick myself up and give myself a good shake! But I can't find the motivation to do that.

I am just getting cross with myself for 'giving in'. 

I know I can allow myself to have 'off days'....and find some hope again. It is just so bl***dy hard!

Rant over. 

Candysmum

  • Hi  

    I'm sorry to read of how you've been feeling. It is hard and I think impossible to stay motivated all the time. I have some idea of how you feel as I sometimes feel the same. It's a bit 'what is the point to it all?'  It is with me anyway. 

    https://www.nhs.uk/conditions/

    If you click on the link and enter diverticular disease. This will bring up some information for you. I know it's not much consolation but most people will get this condition as it is a consequence of ageing. However I understand the difficulty for you in balancing other symptoms and medication. Keep going and keep strong, this too shall pass.

    A x

  • Hi Sistermoon

    Thanks for these! Yes, I've already read the information, and most other reliable sources.

    What has upset me is that in my case, the diverticular disease is almost certainly NOT a result of ageing. It is a consequence of being over-medicated on a medication that can cause constipation....which it certainly did.

    I will be discussing this with my GP tomorrow.

    But, regardless of WHY this has happened, I have to look forward, not back, and learn how to self-manage the condition, alongside the adrenal insufficiency and steroid dependency. Happy days!

    I'm hoping to get an appointment to speak with a dietician, as I am vegetarian, and can't cut out most of my protein foods that I currently eat. There is so much conflicting information about suitable diets for me. Each NHS Trust seems to have different ideas about diet and diverticulisis. 

    Thanks for your response!

    Kate

  • Hi Kate. My diverticular disease revealed itself rather spectacularly when I was given anti-sickness meds alongside chemo that blocked me up and led to a hospital stay with diverticulitis and IV antibiotics. I have avoided anti sickness medication like the plague since, and when I got constipated from using codeine after surgery, treated it with Movicol and Senna. I haven’t had any further flare ups - the original flare up was August 22. 

    So I hope you will be able to manage it and stay incident free. I am not vegetarian but would have thought a high roughage diet can only be beneficial. 

    in an odd way I am grateful for my episode. It led to a CT scan which unexpectedly found a cancer deposit in the liver (until then they thought I had early stage BC as it wasn’t in my lymph nodes). Without that I would have been dispatched after the chemo and known nothing about it until my liver became symptomatic. 

  • Yes be kind to yourself we certainly deserve it. Try and enjoy little things. I have two weeks on oral chemo then two weeks off. I feel stronger those weeks. So I bake and invite my friends / my garden buddies- over for coffee and cake.keeps me busy and cheers us up Wink 

  • Hi Lindasue, that is exactly what I mean,  do what you can when you can, its the normal every day life things that make this struggle worth it, family, friends  and try to keep being ourselves.  Have a good day xx

    Moi

  • Hi Coddfish

    Thanks for your response!

    Yes, my dilemma about diet is that a lot of the protein foods I rely on seem to be ruled out....eg nuts, pulses, seeds, cheese....which only leaves me with Quorn, or tofu. I do cook with these, but think I'll get bored if I eat them often. My diet always has been high in fibre, as I eat a lot of vegetables and fruit, and always wholemeal bread.

    I have lost too much weight recently, not just extra fat, but muscle mass too, so I do want to try and build myself up again!

    My GP is referring me to a dietician, so I should get the advice I need soon.

    You have done incredibly well Coddfish to come through smiling after your experiences!

    Hugs

    Kate

  • All I can say is I eat a lot of nuts, pulses and cheese and haven’t had any further issues with diverticulitis despite the infamous CT scan confirming diverticular disease. The trick is to avoid constipation. I panic if I go longer than a day! 

  • Same here. I won't go into details!  But it has been a problem for me in recent weeks. I've found Laxido works....eventually!

  • Thanks Kate. I’m doing well at the moment. Had a busy June so turning it down a notch or two for July.

    Let’s live well!

    Tom