Wednesday 20 February 2013

Support - when its needed, on your terms!

When I started Womb Cancer Support UK back in April 2011, I did so because I didn't want other women going through womb cancer to feel as alone and scared as I had been 16 months previously when I was diagnosed.
I was diagnosed on 23rd Dec 2009 and had my hysterectomy on 25th Jan 2010. I got my pathology results 3 weeks later and was then told that there were cancer cells still present and I would need chemotherapy and radiotherapy.

Thats when it hit me. Originally my Consultant had said he was 99.9% sure they could remove all the cancer through the hysterectomy - it was only when the pathology results came back and showed that there were cancer cells present in the stomach wash they did, did I realise that 99.9% wasn't good enough!

Cancer aside, the hysterectomy was the best thing I ever did. It put an end to over 30 years of extremely heavy, irregular and painful periods - sometimes lasting several weeks at a time.
So the thought of never having to worry about that again was great.
But being told that I was going to be pumped full of toxic chemicals, and have my hair fall out; and then have to go through 5 weeks of being irradiated every day scared the life out of me!!!

I didn't know anyone who had cancer; there was no history of it in my family. I had no one to talk to about it.
I live on an island off the west coast of Scotland and when I got my diagnosis, I was the only one on the island with womb cancer. I joined the local cancer support group but it was full of women with breast cancer and at 46, I was the youngest there by a good 15 years.

I felt scared, isolated and alone.

I was lucky enough to get (and still have) regular visits from a wonderful Macmillan nurse who has helped my immensely throughout the past 3 years.

When my treatment eventually ended in July 2010, a week before my 47th birthday, I felt cast adrift. My security blanket of regular visits to hospital and all the tests had gone.

Again, I felt alone. I expected my health to improve slightly after the end of the treatment. I had suffered with severe diarrhoea for the whole 5 weeks of radiotherapy aswell as cystitis but this lasted for several weeks after and indeed I now have long term bowel problems as a result of the treatment.

Ever since I got my diagnosis I spent ages scouring the internet looking for information about womb cancer. Anything - treatment options, side effects, causes; symptoms.
I looked for support groups - there weren't any specifically for womb cancer patients. I used the forums on the Macmillan website and joined a US based support group on Facebook but it still felt like there was something lacking.

And thats where WCSUK came in. After a chat with a fellow womb cancer patient that I had met through FB I decided to start my own womb cancer support group!

The rest, as they say, is history!!

https://www.facebook.com/WombCancerSupportUK

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