Wednesday, 27 May 2009

Had a fantastic weekend with my BRCA Umbrella sisters. Was worried I couldn't see them Saturaday night as had no transport to get to where they were staying at Berkeswell near Coventry but Lisa e mailed me to say she would pick me up which she did with Leigh-ann which was wonderful cos I got to spend an evening with them, Flo, Susanne and Carol. Got on so well with them and felt I was accepted as one of their family.

The whole weekend was planned for the race for life and Leigh-ann and Flo and the girls had done a wonderful job organising it all. We met at Birmingham International railway station exept for Michelle who drove to the NEC with her boyfreind and met us there.
It was a gorgeous day, the sun shone down and it was reckoned it was up to 25C. Even though I put factor 15 on I got sunburned on my arms even though I had factor 15 on them! Gray stayed on the perimiters and took photos and got a very red face and arms! We got quite emotional looking at other peoples back patches and it hit me that nearlu all the people there over 4,000 of us either had a relative or friend affected by the disease.

After the event we all exept for Michelle went to the Boat Inn by taxi for a pub lunch and a couple of pints which I found very enjoyable.
We got taxis (9 of us) back to Birmingham International Station where the girls got a train back to Berkeswell to the Lodge and we said our farewells. Iwa sad to see them go and very much look forward to seeing them again. They are all lovely people and it's a shame we won't see them 'till next year. It was a very memorable weekend.

At the station who should we meet but Lewis with Erika's daughter's mother in law who was also Swiss like Erika. Lewis looked his normal scruffy self with stains from his previous meal down his t-shirt! They had been to Cornwall. Erika came to meet him and Rita and we had a few words with them before catching the 900 back home.

Today I had my 6 monthly check up with Dr. Spooner's senior reg. He was a lovely man but they had not had the letter from the genetics clinic. I went in explaining I was BRCA + with a copy of my lab report and he looked a bit stunnes. I went in armed with a load of questions and he examined me and told me I would not be having surveillence according to the NICE guide lines with MRI'S or mammograms annually because of lack of funding!!!!!! I feel very angry and frustated about this. I amm being treated no differently than a normal person who has had breast cancer but I am at a much higher risk being BRCA +. The senior reg didn't seem happy about it either and he got me to book for another appointment in 3 months.

I chatted to Rian later on the BRCA Umbrella site and she couldn't believe it. Had a lot of support from her. She suggested I phone the breast care nurse tomorrow. I am thinking I could also contact Estelle.

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