Saturday 22 June 2013

My Story - by JS

This is another in our series of occasional blog posts by ladies from the Womb Cancer Support UK Facebook page who have come forward to tell their story of womb cancer.

Officially my journey began in September 2012 when I visited my GP because of very minimal post-menopausal spotting but with pelvic discomfort. I was 64 at the time and the previous year had embarked on a fitness programme with a personal trainer and a weight loss of one and a half stone by following weight watchers. There I was, more aerobically fit than I had ever been.

However I must have been stupid because for 18 months I had ignored occasional tiny streaks of blood that didn't stain my underwear and only occurred after a bowel movement though via vagina. Following what I thought was a minor back injury at the gym, I felt as if I was sitting on a nerve and following a more copious, though not large blood loss, I made that appointment. What's the point of being aerobically fit if you ignore warning symptoms!

My GP thought it would be nothing as I wasn't typical but had to fast track to me. After a hysterescopy done without pain relief I had to wait three weeks after which I was told "you have womb cancer" and with my first grandchild due at Christmas, my world fell apart.

I was referred to a second specialist who informed me I had a sarcoma which is very aggressive and he might not be able to operate. After a CT and MRI showing no spread I had keyhole surgery on 7 November by a very good and experienced surgeon. I had lymph nodes removed in my pelvic area. My fitness plan did pay off as I was a textbook case and went home the following day.

 I had my results in 10 days and was told it was not a sarcoma but an adenocarcinoma and it was staged at 1b but as a grade 3. I was told I could have brachytherapy but didn't have to. I just wish they would say you have to! Anyway though more terrified of this than the hysterectomy, I had this on 8 January 2013 and it wasn't anything like as bad as I imagined. My main problem with lying still for 24 hours was my back ached terribly and I don't like anything stronger than paracetamol.

I was well cared for but I wish they would get a grip on my white coat syndrome blood pressure problem, as it only takes a Valium and BP is back to normal but this was more of a worry to me than the operation and treatment as we had to go through the same procedures of them having a wobbly over my BP. If only your records followed you round and if it said that if my BP is up to give me Valium!

I have had one check post brachytherapy (I have had no apparent side effects) and then they lost me in the system but I have phoned my support nurse and I go for a gynaecology checkup on 6 July.

To say I am anxious is an understatement though I am well but have put on some of that weight I purposely lost. If I want cake now I tend to have it! I am exercising a lot so that is my excuse.

I have to say the support nurses are excellent and I just email any questions if I have them. But what a journey. I think one of the main problems is waiting for test results. If only they would fast track them. I do try to put it out of my mind but the anxiety is there underneath somewhere.

The good news is I got a little grandson on Christmas Eve and was so grateful to be able to enjoy him.

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