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.

Sunday, 24 May 2009

Had an awesome weekend with my BRCA sisters from the BRCA Umbrella sit. Spent a smashing evening with them last night and we did the Race for Life at the NEC today.Went fo a pub lunch with them afterwards at The Boat Inn at Catherine de Barnes. The weather was glorious, the sun shone and it was dry and warm. Gray got sunburned!
It was great to meet my BRCA sisters and they made me feel like one of the family. I found the walk quite emotional looking at other people's back patches it made me think about my Mum and the fact that that nearly all those girls had either a relative or friend who had been affected by cancer. A few people noticed our T-shirts and asked us questions and we had many people mote our umbrella hats. It will be interesting to see how many people join the BRCA Umbrella site from there. We all found the walk tiring by the end and we went for a pub lunch at The Boat Inn at Catherine De Barnes . It was an extremely enjoyable weekend which I will never forget.

I look forward to the next time hoping I will be fit enough for it!

Thursday, 21 May 2009

The Offending gene!

Had a great weekend. Went down to London to watch Tigers play in the Guinness Premiership final against London Irish at Twickenham. Tigers are the Champions 10-9.
The match didn't start until 1730 and the last train back from Euston was at 2130 so we'd booked into the Premier Inn at Euston for the night.

Our favorite pub in Twickers was absolutely packed out even more than usual and Gray couldn't get near the bar. There were at least 80000 spectators at the ground.

Working 3 days this week Monday, today and Friday. Had a difficult journey into work this morning as the fire alarm was going off at Snow Hill station so it had been evacuated and I had to get the bus. Found the usual bus stop I use under such circumstances had disappeared! The journey shattered me and I arrived at work late with little energy and even less at the end of the day.

Am only doing 2 days next week. It's Bank Holiday on Monday again so I'm working Tuesday instead. On Wednesday I am booked in with Dr. Spooner the oncologist at City Hospital for my 6 monthly check.

Started the marathon job of filling out the form for the Embrace study yesterday but not completed yet. Am going to have to phone the genetic counsillor to find out about the blood test and how to go about it.

Am doing 4 days at work the week after next but don't know if I'll have enough energy I just hope I will.

Rob sponsered me for The Race For Life last night which I was chuffed about. Many thanks Rob. Tariq also sponsered me today. Thanks Tariq.

Still haven't had my T-shirts arrive yet for the race I hope they haven't got lost in the post.

Thursday, 14 May 2009

Went for my appointment with the Consultant Clinical Geneticist yesterday at 10.30. Had a long chat with her for about 1/1/2 hrS. She explained because I've already had breast cancer I am no longer 80% chance but 2% a year above the general population so 12%. She put my mind a little more calmer. She says she will write to DRr. Spooner the oncologist and Miss Hoar the surgeon to tell them about my BRCA status and arrange my yearly mammograms to take place at the breast unit at City hospital. She said I need not rush into prophylactic surgery, sugesting I might want to think about it next time I see Miss Hoar. She also said Miss Hoar may bring my appointment earlier because of BRCA 2.

Had our Sky box fitted today so we can watch the Heineken cup final in Edinburgh on the 23rd. Unable to go due to The Race For Life. Been promised over £200 now. Doing really well.

Looking forward to seeing Mo and Pete for a Chinese meal tonight. Usually see them on Fridays but it's my brother Greg's birthday tomorrow.

Tuesday, 12 May 2009

At work yesterday, told Helen and Owain about the BRCA thing. Big hug from Helen and a lot of sympatthy from both especially Owain. Got upset again and beginning to feel angry about it as it is getting embarrasing when you have patients to see. Have had to book tomorrow off as seeing the Consultant clinical geneticist so felt I had to tell the bosses.

My brain is in an absolute whirl. One side telling me to have surgery and the other saying no and the side saying no is winning!! I will probably loose my mind over this the way I'm going!

It was Helen's first day back at work after her honeymoon as Mrs. Sahota! They both very much enjoyed themselves for a week in Edinburgh. Well Helen is half jock!!

Gray took me for a balti to try to cheer me up.

Had a text on my mobile from the NHS to remind me about my appointment!

Can't wait to receive my BRCA Umbrella t-shirts. Also waiting for my great grandmother Lydia's death certificate. But of course being Tuesday we had no post delivered at all.

Sunday, 10 May 2009

The progress of the building of the new stand at Welford Road.

Very succesful day yesterday. Tigers beat Bath in the semi final of the Guinness Premiership so we are off to Twickers. The match was played at the Walkers stadium as the rebuilding of the Next stand at Walford Road is still in progress.

However the day was marred by me having a bad day with my brain in conflict over the BRCA gene again. One side is telling me to have preventative surgery and the other is horrified at the thought and the horrified side is winning. How can I put my body through major surgery when I'm only just beginning to feel physically like my old self after cancer treatment. My body is saying "GIVE ME A BREAK!"

Managed to finally persuade Gray for us to have Sky fitted so we can watch the Heineken cup final in Edinburgh on the 24th. We ordered it by phone and it is being fitted on Thursday. I score their customer services extremely high. Spoke to a nice Irish man called Ryan.

Thursday, 7 May 2009

Finally managed to do it. Here's the bride and groom having a conoodle on the dance floor! Ahhhhhh!

Had a bad day on Tuesday. Had had a nightmare about c coming back with secondarys. Very scary. Very frightened and depressed. Thank heaven for the brca umbrella web site where people understand and give fantastic support.

Wednesday was a better day as I wa at work. I told Gemma H. but got no sympathy. She didn't seem to understand and thought I should feel lucky to be alive and get on with my life! Perhaps I'm better keeping quiet!

Our Race for Life preparations are coming on niceley and our t-shirts are on the way thanks to Leigh-Ann.

Managed to burn my waist on the iron this afternoon. Ouch... Put some frozen carrots on it!!

My first Friday back at work for 7 months tomorrow. Fridays are always the busiest of the week and tomorrow is no exeption but at least it should be easier having a nurse and 20 minute patients.

Desperately trying to find my Dad's side of the family and after much searching the web I found a possible cousins address and telephone number so I am going to try writing a letter to him. Fingers crossed!

Anyway, I'm going to try putting more photos of Helen and Bills wedding.

Forget it I can't get it to work!

Saturday, 2 May 2009

Had a smashing evening last night celebrating Helen and Bill's wedding. Saw some old friends and had a thoroughly good time which did me the world of good.

Before we left for the wedding I phoned the genetics department as I hadn't heard from them. I had a chat with my consillor (must find out how to spell that!) and she made an appointment for Wednesday 13th.
Didn't mention it at the wedding as didn't want to spoil it for Helen. Mentioned it to Emma and Claire before we went in and Claire was a bit miffed because she'd booked an appointment for Dave to see me on that day and I haven't met him yet. I had confided in them eralier in the week.

Beginning to feel anger now, why me? Is ther no one else in the family about from myself and possibly Mum and Auntie Peggy? It's funny I haven't found anyone else and I've been doing the family history for about 5 years now. I will have to keep looking.

Will have to tell them at work on Tuesday or Wednesday as Monday is bank holiday.

Arranged to see my brother for a meal this afternoon and we told him as now it is official. I had been worried about telling him what his reaction was. I first asked him if he wanted to know and of course he did. He was very sad but kept his decorum in the pub. Said he was very worried about me and when he is invited for the test he will take it up. Also that I must tell Pat.