Me and my Merkel Cells

Hello
Let me introduce myself and my story. I am a 60 year old lady living in Europe as a long term ex-pat with a long time partner and no kids.

Until this year I had worked continuously since I was 21, the last 10 being as a manager of various teams, being responsible for my writing specialisation, and for the performance and development of my staff. 

Then I was made redundant. Not what I planned, but to be fair the company I worked for has a very good exit plan, and settlement package. So until April my biggest concern was deciding what I wanted to do next, whilst planning to de-stress and work on my big passion - playing the guitar. Hence my user name.

Then the cancer journey started. The small pea sized hard lump just above my elbow, which had sat there for many months largely forgotten, and confidently diagonsed by myself as a small lipoma, stated to get bigger. I look myself to the doctor who also thought it was a lipoma and sent me off to the local hospital to have it removed. They took a look and decided they didn't know what it was .. so we progressed over a period of several weeks from echo investigation to full on MRI. Truthfully, the worst I expected was a cyst. I was blissfully naive. But they decided it was a cancer and referred me to the best cancer hosital in the country which lucky for me is relatively nearby. I got the diagnosis within two weeks - Merkel cell carcinoma - unusual and with no consistant prognosis. By this stage the lump was about 4 cm in diameter and sticking up 1 cm. It was never painful however. And it was always just out of sight. So I could be blissfully in denial how serious this was.

Today I  am sitting at home recovering from reconstructive surgery. My upper left arm quite literally looks like it was bitten by a shark. The removal left a 7 by 9 cm crater. They took it as deep as they dared without leaving me crippled. I will need 30 radiotherapy sessions, and constant monitoring. It didn't spread into my lymphs, but they did find a tumor cell in the sentinal node they removed. They decided that was best resolved by monioring to spare me potentially non-beneficial removal of all nodes in my left armpit. Which is good from the point of view I will keep most mobility in my arm, but means I am going to be in dread of another tumor. Denial is over - the evidence quite literally staring me in the face.

So, like all people on this forum, I am shell shocked by this life changing situation and trying to put on a brave face. What I find difficult is that I can't really show the depth of my fear, anger and despair to those closest to me. Everyone says how upbeat I seem after my surgeries. But I confess to you, as strangers, with apologies, that sometimes I think I would rather have been taken suddenly in a car wreck than endure this disease - which seems so capricious as to threaten my ability to play and give me even more stress straight after stopping work. Early days I guess but really - who would have imagined I would end up in such a pathetic state from such small beginnings in such a short time. I have drawn strength from people I met at the hospital who seem to be coping with their cancer so stoically. But I'm not totally there yet.

Thanks for listening.

  • Hi GuitarPlayer

    Welcome to the forum, that no one aspires to be coming a member of. First just writing down your feelings is a really good start. There are lots of emotions that you will at first bottle up, you describe them well. Fear, anger, despair and you keep them in to spare others feelings. Well don't!, talk about your situation, it is good therapy for you and helps get you to the next step of dealing with your cancer. You've already got through a lot with the surgery to your arm and the next stage radiotherapy is to help ensure it doesnt come back, this is a recurring fear of everyone with cancer, but the fear can be beaten and recedes with time into the background, only occasionally rearing its ugly head. The car wreck thing is a common thought and or suicide but the reality of either is worse than having cancer, at least with cancer you have a chance. There is a good life to be had even with cancer, just do one day at a time and enjoy the bits you can and endure those you cant. I now take the greatest joy from the little every day events in life, and life seems far more intense. There's lots to look forward to and you've got a guitar that needs mastering. Kim

     

  • Thanks for your lovely reply,Kim

    You are right of course and my logical brain tells me that It's better to plan on living a full life than not. And thanks or reminding me that something I took for granted I will have to work at getting back, and yes that challange and commitment will keep me going. In fact all those music projects that I hought I could get around to - and probably never would have - are definatey going to the top of the to do list. It's that old animal brain I have to look out for - the keening noise that came out of me when I got upset surprised me ... pure animal ..and not something I am proud of.

     

  • Sorry to bring back an old post, this is such a rare cancer it is hard to get information on. My mum has been diagnosed and is due to have the initial site removed but they don't know the extent of it. Just looking for general information, prognosis, stories