Time to come out and say hello

  • 72 replies
  • 57 subscribers
  • 3214 views

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.

  • Hello Sarah and welcome!

    I'm glad you plucked up the courage to come and say hello. I get completely all you've said in your post and I've gone through, and still do at times, cope with feelings of feeling alone. Hopefully, being on here {with your tribe} will help. I've been a member on the incurables for just over two years I think and was on the head and neck forum first, so I've been hanging around since 2014. I was told that the rate of survival for me was between 2-5 years. Since then though, my cancer has progressed.

    My new sell by date is looming according to my oncologist but I don't believe it.  He has since admitted that they really don't know and it is a guesstimate. So, I'm going with that!

    Big hugs to you Sarah Relaxed

  • Hi Little-fi, thanks for your welcome :-)

  • A very warm welcome to the group Sarah 49. I too am glad you have felt brave enough to join us. I always say what a great group of people are here, and reading all of your welcomes today has confirmed that for me. Not a group we want to join, but such a lovely group of people, it warms my heart to see how supportive everyone is. 

    I hope you won’t feel so lonely now you are here x 

    Chelle 

    Try to be a rainbow,in somebody else's cloud
    Maya Angelou

    Community Champion badge
  • Hi Sarah 49 Im so glad you found your way here with the rest of this lovely group of incurable people, we can listen to each othere, talk together, laugh and cry together. We all understand what we're going through. Take care and keep posting xx

    Moi

  • Welcome Sarah. Not a group anyone wants to join, but some lovely people. Hoping spring brings some more light into your life in both senses. 

  • Thanks to all of you for your welcomes and kind words. Reading more of your other posts I feel in awe of you all too ,there are some pretty special humans on here I think. It's lovely to know you 'get it:. 

  • Hi Sarah49 (or should I say Sarah50!)

    I'm so sorry I'm late to welcome you to thee Group. I did not get a notification of your post (it happens a lot).

    By now, having read your replies, I take it you realise what a supportive group this is!

    I understand what you have been through, like all of us here. After being told I had 5-7 months to live (this is the quick version!) I was given a Trial Drug which I was on and off (due to side effects) for over 3 years. I finished taking the drug on a "wait and see" basis in 2016 and we are still waiting!!!! I do hope this helps you stay positive and just take one day at a time! I look forward to getting to know you better!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • That's a great story Annette. Wait and see is a good way to think of it. Nice to meet you too.

  • Hi Sarah My oncologist has said the next course of action IF needed, would be Immunotherapy because it was being trialed just after I started on my trial (Dabrafenib) and now both have been licensed! I had 3 monthly scans for 4 years, then 6monthly scans, now they are talking about the possibility of annual scans. I still get checked at other clinics but at least the months aren't filled with appointments as they were at the start of this journey!

    Love Annette x

    Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!
  • Hi namesake, cancer is a b*gger, but prognoses all have margins of error. In late 2020 I was told I might have a year with good response to treatment, now I'm off treatment with no active cancer, so I'm trying to make the best of it. Best wishes to you, this is a good place to share the highs and the troughs.

    Sarah