Time to come out and say hello

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Ok it's time to say hello, I was too shy before but you sound like a friendly lot. I'm Sarah.

found a huge breast lump which had been hiding in my right boob in October 2021. I thought 'that's a cancer, and it's spread'. My 2 week referral took a month while I wet myself with worry. Two weeks later I had a diagnosis of a cancer, thought to be contained. Lymph nodes came out clear. I was told the 'good news' while sitting in front of the breast care nurse with the massive ascites that had come up, excruciatingly, overnight (size 12 belly becomes 5 month pregnancy between 9pm one day and 2am the next). I'd gone to A and E (of course) in screaming agony and terror. After waiting for an ambulance (19hrs) and waiting to be treated (12 hrs) I had a CT. Due to COVID, I was alone when at 2am the doctor woke me up and told me that my liver was full of some sort of cancer. I thought, well then I am f*cked. Pardon my language but it's the only term fit for it. This was Christmas 2021. 

Long story short, by Feb 2022 I was pronounced end of life by my GP. I was just worn down by it all and had deranged insides. But by the skin of my teeth I survived a brutal chemo regime long enough to frighten the cancer just a little and I started targeted therapy in July 2022, having turned 50 in June.

I never ever thought I'd still be alive now. Hooray, say the innocent. But they miss the point. My partner and I had a few weeks of great relief and joy in the summer, but the drudgery and the unremittingness of it have been hard to bear this winter. All is grey. I am having to accept I am in it for the long haul now, be that the couple of years I'm given by my oncologist or longer if I am lucky. I am now able to feel really very upset and bereft about it all. I am very upset about not having old age to look forward to. I do love life but I just do not feel vital. In health I would be rudely fit right now and achieving much. I do not feel well like that. I feel like I am about to pop a gasket. Or grey. Or I have the sh*ts. Or I feel tired to death. Or I feel lardy on account of all the comfort eating I'm doing. Or I am asleep for enormous lengths of time. Or can't sleep.

Which is what brings me here, I'm looking for my tribe, I feel very alone. I don't quite belong in the land of the living like my friends and family do. However much they may suffer because of my illness, they have life in its fullness. So I need friends in the twilight zone.

  • Hi Sara 49 and welcome to our group of great people you are not alone now you have joined us we will be here for you whenever you need us we will be here for you huge hugs xxx

    Flippen
  • but you sound like a friendly lot

    I thought the same of you when I saw your posts!  Pleased to meet you although I'd much rather it was at a social gathering or in a cafe or similar.  Cancer really is sh1t.  I wouldn't focus too much on the prognosis because it is a best estimate.  I had a chat about targets with my oncologist last month and he said he advised people "averages".  

    What targeted therapy are you on?  I'm on immunotherapy and only a tad older than you at 53.  Where are you based?  I'm Edinburgh/Dunfermline.  

  • Hi Sara49 I've read your post and shed a few tears for you, I remember those feelings well, diagnosis 6 to 24 month's (a death sentence).

    I've just passed my shelf life and getting along ok I'm stable mable, over the last 2 years I have come to realise that doctors do a lot of guessing.

    I'm sure you will be the same it's a pity we have to go through all the crap bits first.

    So welcome to the group, we will make you feel like living again, it's a big family always someone here for you. Big hugs Ulls 

  • Aw thanks Flippen popgate for your lovely message 

  • Hello Sarah. Welcome to our tribe of misfits!

    You may meet someone in the outside world who seems to understand what you are going through, here, everyone of us does.

    Ulls is right, the doctors only guess a prognosis, loads of us here have done years and years past our shelf life.

    Plenty of advances, trials, new drugs around to assist.

    You have to comfort eat in the winter, so what, its a pleasure and you need some of that.

    Xx

  • I like Stable Mabel. It's a great phrase. I have also been stable since May which is amazing (though 3 month scan soonRolling eyes). Lovely to meet you Ulls. I already know you are right of course. And thanks for the tears they are appreciated Slight smile

  • Ah thanks Achancer! It's great to meet you all.

  • All the hormones we men take definitely gives us a feminine side, so if we start to blubber is normal for us.

  • Yes you are right Mmum about not taking the prognosis too seriously but we all wonder at times don't we? My oncologist said it can lengthen and shorten too depending on how I do and I'm fairly satisfied with that as an answer. I'm in the North West of England where rain is eternal. I'm taking Abemaciclib which I'm learning is not for the faint hearted but it's better than being dead. I was feeling exhausted by it but the doc gave me a week off it which has helped restore a little of my vim and vigour. Nice to meet another youngster though we'd all rather not be in the club at all, wouldn't we. So I'm sorry that you are here at all and here young. 

  • Hi Sara we are almost neighbors, this old crock lives in the North East.