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 Moi, I know how you feel, I am a completely different person from before C. It certainly puts things in perspective. I have to bite my tongue sometimes when I hear some people complaining. Do you know, I think some people would complain about having nothing to complain about! Lol! What do you think? I think we, especially in this Group, find out what is essential in life and what doesn't really matter.

    Due to nerve pain, I am usually awake into the wee small hours. A night owl. So feel free to post no matter the time, there is usually someone about to keep you company!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi. ,  I've been awake for a couple of hours and catching up with some posts in between dozing off occasionally. It's the usual complaint, pain but I'm not going to dwell on that.

    I read somewhere that you're in Australia? I don't know if you're aware of this or not, but our  is in Australia too. Maybe you have already chatted here, maybe you live in the same road? Equally you might be 1800km apart. 

    I've written km there, I think that's the distance of choice in Australia. Strange that, the way you deal with km instead of miles when you have a history of so much Britishness or is that a false assumption too?

    I'm in Northern Ireland since birth, gone through the Troubles and been in close proximity to massive bomb explosions as well as having near neighbours shot dead. Here our speed and distance are measured in miles per hour and miles respectively, yet when we journey across the border into the Republic of Ireland (down South in local parlance), and with its relatively short history of Britishness, only 100 miles away we delve into a world of kilometres. 

    Confused of County Down, alias Tvman xx

    Love life and family.
  • Hi Sarah 49

    I have read your story so far and what a journey you've been on. Please know you are not alone. You will always find support and a kind word from the people in this forum. Like you I was very active before diagnosis and worked full time so I know that lost feeling, unlike you I don't know my prognosis I did once ask but was advised to focus on my treatment as they could only give me an estimate at best. So that's what I've done. I focus on treatment and enjoy living and life. I make each day happy and not just myself but happy for others around me. I would suggest you are vital and play an important part in many people's lives it's just difficult for you to see this at the moment given what you are going through, but keep up the fight you are not defined by the cancer you define who you are and from what I've just read you are a brilliant person who cares and offers much. 

    I don't have any blinding answers for you but I'm happy to be a friend to chat if you need it.

    Have a great afternoon and I love the dog photo.

    Donna

  • Hi sara, 

    your post said everything that i have been thinking and feeling. I am 52, they haven't said how long i have. It is stage 4 renal cancer..... treatable but not curable.

    i so agree with what everyone has said, we are not the people that we were, i try to enjoy life but its difficult

  • Aw more and more I am just so grateful for all your replies everyone and honoured at what you share. I am sorry about your diagnosis Jackie1970. Seeing ourselves as treatable is a good thing. But yes it's far from easy, any of it.

  • Hi all had a busy day but hair  dyed, nails done of to Llandudno tomorrow for the weekend to charge my battery's had quit a few appointments this week. So I have started the weekend with a couple of wines, need sea air,  fish and chips and a few wines to get this girl back on track xx

    Moi

  • Hi Moi, The sea air definitely does your heart and mind good. I just love the seaside, the sounds, the smells etc for me it doesn't matter what time of year it is I JUST LOVE IT!! Enjoy your weekend away!!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Good morning  Annette,  your so right I also love the seaside, just watching the sea is so relaxing, clears my mind. Hope you managed to get some sleep,and have a good weekend xx

    Love Moi

  • Keep an eye out for the seagulls, bloody nusances, have a good day 

  • Hi Moi, who doesn't love the sea, watching the waves crash onto rocks and the shore is mesmerising. As Ulls says, watch out for the seagulls! 

    Tell me if I've got this right, it's 10 o'clock in the office and you've had a couple of wines already? Not sure if you'll see much of the weekend lol. Have a lovely weekend Moi, I'm so envious!

    Tvman xx 

    Love life and family.