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Me and Mr BRCA1

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Archive for the ‘My Diary’ Category

Monday 3rd March – A New Challenge

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Today I signed up to take part in the Great East Swim (1 mile) I have been meaning to do this for the past few years. In fact, the first year I decided I wanted to do it I found out my PBM was scheduled around the same time.

I dont feel like I am doing this for me. I want to do this for my little girl. There is a 50/50 chance that she has inherited the gene. I want her to know that even if she does have the mutated gene and has to face the same decisions, surgery etc as me, you can still reach and achieve your goals.

I am raising money for the National Hereditary Breast Cancer helpline. They are a fantastic charity offering 24/7 support and advice. They receive no government funding and completely rely on donations. Personally – they have helped me through the difficult times on my BRCA1 journey. The founder, Wendy Watson, has only been a phone call or email away and I can’t thank her enough for it. Not only that, I have made some fantastic friends through them which have also given help and support – I love you girls!

Thursday 20th February – Feeling Amazing

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Well my tattoos are healing really well and I think that they look amazing!

With me having the surgery, I knew that I wanted to have my nipples removed. This way I could make sure that I had done all I possibly could to reduce my risk of getting breast cancer. To me, if I had left my nipples, and further down the line cancer would have started there, I would be devastated.

Since having my tattoos done I feel complete. The past week I have felt my mojo slowly returning and have been out and about doing things that I have put off for ages, getting back to the old me really.

I knew something had been missing from ‘me’ for a while, but could never quite pinpoint what it was. Now I know it was my nipples and that my new ones have given me magical powers! haha :o)

Thursday 13th February – Tattoos

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Today I got my nipple tattoos and have to say I am already really pleased with them. The ink goes on pretty dark but have been told that they will go a lot lighter than they are now (from quite a dark brown to a light pink colour)

I had a cream to put on before I went to help with any pain there would be. Initially there was no pain but as time went on, it felt like being stung by a stinging nettle – so not bad at all. They were covered over with a dressing and was told that this could come off as early as the next morning. Lets see how they turn out!

Tuesday 19th November – What may be…

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I watch my baby girl sleeping and I hope more than anything that I haven’t passed the faulty BRCA1 gene onto her.

We were given the option of having PGD (preimplantation genetic diagnosis) and did consider going down that route.

Unfortunately we found out that only 1 cycle would be funded this way. We have always wanted more than one child and wouldnt be able to afford the treatment ourselves for further children. We didnt think it would be fair that the first child would be risk free and further children we had naturally had a 50/50 chance of inheriting the gene. I mean… how do you explain that to your children after the first one? and how would the first child feel knowing that they were ‘different’ from the rest?

That is why we decided to take the natural route.

If she does inherit the gene, who knows what treatment will be there in the future. Even if there has been no development in this field, then I hope that by being positive and showing her that life does go on after finding out you have the faulty BRCA1 gene, and that you can still go out and achieve your dreams, even if you chose the surgery route.

Saturday 30th March – 3 years later…

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It was three years ago today that I was told that I had the BRCA1 mutation….. and what a journey it has been!

In that time I decided and have had a prophylactic bilatteral mastectomy with immediate reconstruction (although the process isnt fully complete!), met up with family members that had lost contact, met some of the most amazing women through the National Hereditary Breast Cancer Helpline and most importantly realised who I can and cannot count on.

One of the things that has made me most happy over this time helping others. Be it by talking about my experience to help others with their decisions, trying to help raise funds for the National Hereditary Breast Cancer Helpline by making and selling jewellery for a short time, or with helping my mum make drain bags for the Norwich and Norfolk Hospital. It would be nice to get back to doing these things as I haven’t done any of them for a while.

Monday 18th March – The news is…

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Well my husband and I are excited to announce that we are expecting our first child! Due at the beginning of October.

We have been trying for less than a year to fall pregnant so are over the moon.

Originally we thought that we would be going down the route of the PGD (preimplantation genetic diagnosis) process. However, after looking into the process, the sucess of actually being funded, and the fact that you are only funded for 1 cycle (so if we wanted further children we would need to have pay for this ourselves, which at the last look was about £9,000) decided to go through the process naturally.

Some may argue that this is a big decision and why would we go ahead with a pregnancy knowing that our child would have a 50/50 change of inheriting the gene. But the thought of having one child that would be free from risk and then not being able to afford further children so would have that risk – how would you decsribe something like that to your children?!

As well as this, when I was born, the BRCA1 gene hadn’t even been discovered, who knows what the next 20 years may hold – when already there is talk of taking medication which will reduce the risk so no surgery is needed. Even if no further advance on treatment is made, I believe that as long as you are a positve role model for your children there is nothing that you cant get through together.

Wednesday 23rd January – Exciting News

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Exciting news – watch this space!

Wednesday 2nd January – Yay, no more padding

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Nipple padding was removed! Yay! Actually feel more normal now and no more baggy jumpers! Next check up is in 3 months time!

Wednesday 19th December – First View Of Nipples!

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Well, they were rather large!
Looking at my nipples the seemed to be rather large/ tall, however I have been reliably informed that they should ‘shrink’ over time. The padding needs to stay in place, which includes a gauze, half inch thick foam square with a hole in the middle for the nipple (so it doesnt rub on clothes) and tape to hold it in place. This makes my boobs look very odd in shape so have resorted to waering very large baggy jumpers!

Saturday 15th December – Back Home

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Well I have been home now for a couple of days. I had to stay in hospital a lot longer that I thought as my drains were still draining quite a bit of fluid. I need to go back on Wednesday for my check up, so will get to see my nipples for the first time as they still have a lot of padding on them at the moment.

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