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

  • Good morning, this feeling is natural and will hopefully pass in a few days. Mine did, I've been off the site for a few weeks, very down, had enuff.  Like you the cancer it self stable, but the immunotherapy side effects coursing problems, given me diabetes which is driving me mad and sick off people asking if I'm alright, the dirty looks and snappy replies to the front. Ray getting a new health problem, my sister being very ill after an injection. So I've thrown myself into looking after them and it's brightened me up quit a bit. Hair does, manicures and pedicures new shoes and clothes have helped as well, so it's back on the tread mill called life again. Candysmum just have a bit of me time, be kind to yourself it does help. XX

    Moi

  • Thanks Moi!

    It just gets too much at times......but I can normally cope with it, like you do. Being dependent on steroids to keep me alive is quite scary at times. The levels go 'off' if I get a bout of vomiting or the runs, and I quickly deteriorate, as I get low on cortisol. This causes collapse, plummeting blood pressure, fainting....quite difficult!

    Similar situation to yours with the diabetes. Now I'll have to learn how to self-manage the diverticular disease as well, which throws my steroid levels out.

    I think I'll feel more accepting of it once I've seen my GP, and possibly a referral to a gastro specialist, to get advice on managing this. I just didn't expect it to be a feature in my cancer story really....

    It's early days, and I know I can get through it.

    Thanks for the suggestions regarding some me time and self-pampering! I'll give it a try. My hair could definitely do with a trim!

    I hope Ray and your sister are recovering and on the mend.

    Hugs

    Kate

  • Hi Kate I haven't had the pleasure of steroids yet, hope I never do. Diverticulitis is diet controlled I think, my sister has had that for quit some years. It's a horrible disease. Ray's is kidney disease again diet controlled and needs to loose wait. My sister is alot better now but says she's never having another injection ever again. I also think we shouldn't have to wait for GP appointment as things change so quickly for us and a few days waiting just sends our anxiety sky high. Do you look well,  I look a picture of health and feel like rubbish at times, are you the same. I had 2 small slices of white bread yesterday as I really fancied it, so this morning I look about 6 months pregnant. Certain things I eat just blow my tummy up, only since being on this journey. But Kate were still here. XX

    Moi

  • Yes, we're still here! It's what I usually say when I go to the GP...."I'm surviving".

    I've looked 'well' because my face has gone red. I have very pale skin, so the red cheeks really stand out. Everyone assumes it's a sign of good health, but in my case, I think I've been like this because of the cancer. I don't drink, so I can't use that as an excuse!

    I've lost about 10 kilos in weight since the diagnosis, not intentionally. I'm looking quite thin now, and have lost muscle mass too. Trying to put weight back on! I wasn't overweight to start with. I've been taking the waistbands in on my trousers, as they fall down! New clothes needed.

    I haven't had bloating, which I know is very uncomfortable, and I can't pinpoint any 'trigger' foods so far. It's all very recent.

    What a palaver we have to cope with!

    Thanks for your messages....much appreciated.

    Have a good weekend

    Kate

  • Oh I feel for you. I think many of us can say the same thing - my cancer has never given me a moment’s bother. But I have been in hospital with diverticulitis. I have a myriad of ongoing consequences from immunotherapy and steroids that are seriously affecting my quality of life and won’t ever go away. But we are still here, and who knows whether we would be if we hadn’t had the treatment? Who knows whether the cancer consequences would by now be much worse than the treatment consequence? It’s perfectly reasonable to feel down about this from time to time, or even most of the time. Despite being grateful to be in remission, I am seriously upset about what this has done to me; on my worst days I fantasise about the cancer returning and saving me from all the other misery. It is bloody hard. Hang in in there. 

  • Thanks Coddfish. I know you have had a tough time of it too, with the adverse events from the immunotherapy. It always amazes me how resilient us human beings are!

    I'm feeling better now for having a good grumble!

    Best wishes

    Kate

  • Agree it’s damn hard.    I’ve just been rocking day to day and coping with all the tough stuff.   Physically I’m coping, mentally not so much.   It dawned on my last night just as I dropped off to sleep just how unhappy I am.  Serious chemo blues I think.  2 cycles done and a third to go before being rescanned.    I can hardly walk the length of myself I’m so tired.  

  • Hi Candysmum,

    Bit the same with me. My cancer triggered something called Functional Neurological Disorder (non-epileptic seizures) so I ended seeing a neurologist (for its diagnosis) and a psychologist to help manage the condition. The FND is literally in my head with no organic cause. Because it manifests as seizures I am no longer allowed to drive. That shrinks your world big time and it took me a while to adjust but now I make the public transport planning part of my days out. The PLUS is I can have a pint or two with my lunch! What helps me is to look for the silver linings in this journey, even when it throws you a massive curve ball!

    My time on this forum has shown me how resilient many of its members are. You're not 'giving in', you're taking a breather. Take that breath and I'm pretty sure you'll find the hope again.

    All the best.

    Maninbath

  • Thanks Maninbath, what a lovely post!

    Soon I will post in the chat section a story of the highlight of my cancer treatment, an unexpected wildlife sighting. I'm busy today, but will do it this evening.

    Yes, there are always silver linings if you look for them! Finding some lovely supportive friends on this forum is one of them!

    Yes, I'm taking a breather, and I'm feeling better. I need to hitch up my trousers now and get on with living!

    Bless you, hope you're feeling OK too.

    Kate

  • Hello Ochno

    Apart from the fatigue, I hope it's going OK with the chemo, and you're not getting other more 'difficult' side effects to cope with too.

    Just take it easy and rest as much as you can. I hope the scan result shows that the chemo is working!

    Stay strong

    Kate