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.
Hi Sarah, such a traumatic diagnosis process for you and I can imagine the pain and distress you were in not only in finding out but in the treatment you had. I know many others will have said to you here that prognosis is very much like guess work but no matter that it is a weight that hangs over you. I have certainly found great comfort here in the board with like minded people who are all in this silly limping ship but who retain some hope and joy in life. It is hard with this disease not to be consumed with it, be it appointments, treatments or just thoughts of it. One thing i do often think, and stay with me, is are we the lucky ones. Maybe we have been freed up from the clearly strange position that others, as we were, are in and in never thinking about our end point. For me it has allowed me to consider what is important, what I want to do and who I want to spend time with. Not a “bucket list” but an appreciation that life is short and I won’t waste it in foolish pursuits. Others will tell you, I have a lot of cake, coffee and catch ups with friends who have made it into this part of my life.
Anyway sorry for the ramble. I am up early, partly due to steroids I think, and have way too much energy for this time in the morning. I hope you are resting well and you will be well supported here and out there I hope.
M
Morning Morton68. I love your message and thank you. You are right, a sharpening of the awareness of what is important and what's not is one of the benefits of life in the twilight zone. I am currently On an anxious wait because I'm due a CT next week and I have been feeling off lately, in a nutshell my liver function is going off and I don't yet know why. As my liver going off last winter nearly killed me and got worse very fast I am hyper nervous. I am more monitored this time which is good. I haven't had a downturn since finishing chemo so it feels new and scary.
Hello Sarah. You've found your tribe. I'm back on here after a bit of a break. Everybody is here for you. Of course, there are different levels of sh*t that we deal with, but quite often you will find a lot of light coming into that twilight place. We're all here with our torches. Hugs from Rainie x
Whatever cancer throws your way, we’re right there with you.
We’re here to provide physical, financial and emotional support.
© Macmillan Cancer Support 2025 © Macmillan Cancer Support, registered charity in England and Wales (261017), Scotland (SC039907) and the Isle of Man (604). Also operating in Northern Ireland. A company limited by guarantee, registered in England and Wales company number 2400969. Isle of Man company number 4694F. Registered office: 3rd Floor, Bronze Building, The Forge, 105 Sumner Street, London, SE1 9HZ. VAT no: 668265007