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