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I'm Carole, living in London, happily married and mum to two amazing boys.I was diagnosed with Stage 3 Rectal Cancer in April 2010. Surgery took place in November 2010 and I now have a permanent colostomy...Spinal mets were then diagnosed in October 2011...In January 2012 I was told of further spread to the hip area (multiple lesions)..My life expectancy is now 6-9 months. Walk alongside me on the last part of my experience with this..

Monday, 3 May 2010

Tests so far

So following on from the previous post, my initial consultation with the Surgeon on the 14th during which a biopsy was taken.
The next tests were then as follows:

14th Biopsy and blood tests

19th April - CT Scan & 'sample'

21st April - Colonoscopy

22nd April - US Endoanal Scan

28th April - MRI first followed by 2nd appointment with Surgeon.

Been a busy two weeks really which seemed to be dominated by one test or another. Also emotions all over the place, once minute feeling quite down in the dumps then the next reminding myself that they didn't even know for sure if it WAS cancer or not. It really is a roller-coaster of emotions.

In between tests I was attempting to carry on as normally as possible - y'know usual stuff, shopping, cooking, sorting things out etc.
Went for a lovely lunch with my friend Jacqui on Friday, 23rd April and actually said to her 'I feel so well today that I actually think they may be wrong - maybe it's just a painful lump'....She didn't really look convinced but went along with my chain of thought anyway. And then Saturday and Sunday I was in agony and it was certainly pay back time for my positive thoughts the day before :-)

Anyway, back to Wednesday, 28th April, (D.Day, as we named it).......
MRI went fine but the full results will not be available until at least the beginning of the next week (w/beginning 3rd May).
Met with the Surgeon later in the afternoon and I was strangely calm and in total control. I discussed with Jacqui earlier that I was expecting a positive result on the biopsy and fully expect them to be talking about chemo/radiotherapy and all I now needed to know was that it was NOT Stage 4 and in what order things would now be happening.

Surgeon was lovely, very kind and gentle in his approach and mannerisms and I found that extremely calming & reassuring. The nurse also sat in with me for this meeting, hence I knew I was on the right track of expecting a positive result.

As fully expected the biopsy was a positive result for cancer and as I expected this will involve surgery, chemo and radio treatments...so far all going according to my expectations and I WAS still calm and in control.
THEN he explained exactly what the surgery would involve and at that point I was no longer in control !!!

Due to the location of the tumour the surgery will involve total removal of the whole rectum and anus and I will have a permanent colostomy bag. I fell apart and my promise to remain calm went out of the window. I still don't know what Stage the cancer is until they have the full MRI results but he asked me to take away with me his belief that we can stop this, and he feels it will not kill me once I've had the surgery, chemo/radiotherapy.

He then asked me if I wanted to be booked in for surgery on 6th May - I refused outright and said I need time to think and absorb all the information. I also want the full results from the MRI because until we know the Stage and what exactly is happening with lymph nodes etc, I don't want to commit to surgery yet.

Went outside with the lovely nurse, sat in the room with her and simply cried. She assured me that she felt I was right to refuse surgery for the following week as I need time to come to terms with this. She also asked if meeting someone who has had the procedure carried out would be helpful - I agreed that it would.

She reminded me (whilst I was saying 'I'm NOT doing this, it's NOT what I expected and it's NOT what I want) that no-one can force me to have the surgery, it has to be my decision and mine alone.
I asked what would happen if I refused and she assured me that they would still provide the best possible care to me but they wouldn't be able to stop the cancer spreading throughout my body without the surgery. She also said that if I did refuse they would still ensure I had the best possible palliative care available. Sobering thought!

What a day! Tons more tears then pulled myself together and went back to Jacqui's for a much needed coffee. Came home about 8.15pm, just as Mum and Dad were leaving and put on my brave face (although not feeling too brave right now) and said I'd been delayed because after my MRI I'd gone to a different hospital with Jac to have her foot x-rayed.
Feel really bad about not filling them in just yet, but I'll explain why in next post.

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