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.

  • Although I have an injection  every few weeks, I am on a wait and see also. 

    Tvman xx 

    Love life and family.
  • Really brilliant to hear all these stories of people staying here. Definitely gives me hope.

  • Hi Sarah, 

    Welcome to your tribe. I, like Ulls have shed a few tears reading your post. You have managed to put into words exactly how I feel. I asked my husband to read it and told him that those words there are the reason that I have zero interest in going abroad on holiday. I would be grey whilst there and grey when I came back. All the holidaymakers in bright clothes sipping cocktails, being glamorous would just make me seethe and want to crawl in a hole.

    Anyway, enough about that. I am 53 and in the north east. I've read your profile and your experiences sound terrible to go through. Your little dog looks cute, think I saw him on the pet thread. I hope you feel less alone by joining us, I think we all have some idea of how you feel, alive but different.

    A x

  • Hi sister moon I live in the North East as well tyne and Wear which county do you live in 

  • Aw sistermoon, I am blown away by your message. I am honoured that you felt I expressed what you feel. You are so so right about feeling out of joint next to people who have bright futures...or even just futures...I don't mean I don't have a future, I have this year to look forward to, the next months to live. But it's different, isn't it, than thinking we will one day be 'somewhere ages and ages hence'. I just want to poke 'normal' people in the eye sometimes.

    I am loving my new found community here :-) and thank you so much for making me feel touched. That's a big deal.

    Xx Sarah 

  • Hi Ulls,

    On the edges of county Durham, near the sea now. I am from and used to live south of the wear.

    Forgive the crypticness, not sure how much I can tell you without getting flagged,

    A x


    Smile

  • I'm from north of the wear, still live in Sunderland, being careful is why I asked which county, mackam lass

  • Hi Sarah, thanks for your reply. I feel like it's being alive but less so. I don't begrudge healthy people their lives without their own mortality staring at them, I just can't understand why they think I'm the same person I was. But then, till this happened to me, I maybe wouldn't have realised it either.

    I'm pleased you've found people that understand. It's good to get these feelings out sometimes.

    A xxx

  • Yes. No, I don't suppose I begrudge healthy people their outlook...but I long for them to get mine,and I guess you are right, none of us really can until we're unlucky enough to be in the short outlook club ourselves and even then, we're all so different, us humans. Mmm, alive but less so is sad but I do know what you mean..

  • Hi Sarha 49, wide awake 2am and reading through the threads. 2018 bowel cancer,  had surgery,  got all cancer no chemo needed. 2019 the b_gger came back in lungs, abdominal cavity  groin , and left shoulder.. inoperable, bur treatable.  12 to 18 months.Im am coming on 3 years still here but not the same person I was. I try to make the most of each day, I hear healthy people moaning and think oh shut up, sometimes I say it lol . So I just keep on keeping on, making the most of my time. Hope you sleep well xx

    Moi