Waiting...

Ellie’s at nursery, and I’ve just had a moment to put my work down and write about all that’s happened over the past few months BRCA1 journey wise. 

I recovered from the September gene clinic which really was a shock to the system. Meeting all the specialities at once was good calendar wise but overwhelming! So overwhelming. There were tears afterwards, and sadness, but it did pass. 

Two months after I travelled to East Grinstead to meet Martin Jones, an amazing reconstructive surgeon specialising in using other body tissue to recreate the breasts. This was really helpful and he was an absolute gentleman, putting me at ease as soon as I stepped into the room. It helped that I only spent a few minutes de-robed, and most of the consultation happened with clothes on! Martin explained he could use thigh fat to reconstruct the breasts (up to about a C cup size). He showed me lots of photos of his previous work and I was amazed by how neat and natural some of it looked. However, just as I was about to submit my body as a living work of art to East Grinstead hospital, he pointed out that the hair travels with the tissue………and I didn’t fancy hairy boobs (especially pubic hair!)…….so as impressed as I was, I made my mind up to go back to Tracey at Royal Surrey and go with implants. 

After this, I had a very frustrating wait for various specialities before being able to go back to Tracey. A prolonged case of telephone tennis finally landed me an appointment with Helen, one of the breast care nurses. I was curious about the implants, the surgery and the recovery and after 90 minutes of her time I felt we left no stone unturned! 

My final challenge before the surgeon appointment was to book in with the consultant psychologist, another necessary step in the pathway before committing to surgery. I’d been waiting for an appointment since September, and then, just out of the blue in February I managed to get an appointment 2 days later. 

Katherine was fantastic; one of those people who is positive, yet realistic, who reassures you, builds you up and gives you plenty of space to talk. I honestly did not think it was possible to spend 90 minutes talking about my relationship with my boobs (peppered with a lot of stray chatter as we both seemed to like to talk!) - however it was. And although at the time I didn’t feel it necessary, the meeting has helped me affirm my feelings and has really boosted my morale along such a tough journey. I think it would be hard to meet Katherine and NOT leave feeling better - whatever you happened to be going through. And I did not feel run down in the first place! 

So, for now, I’m back to waiting. Waiting for an appointment for Tracey; which will hopefully lead to a more concrete idea of surgery dates. I’m trying to be patient. I’m ok at it ;)

Slowly moving through this journey, I’ve become to realise the waits have been both bad and good. Bad - in that I’m really bored of basing my life around the prospect of surgery. Of not being able to book holidays and trips away for the family. Of not knowing whether those concert tickets we’ve bought are useable. Bad in that I recruited an assistant for the business mainly so that she could cover for me while I was out of action post-reconstructive surgery. And the longer things drag on, the higher the chance that she may not be there for me when I need her. 

But good, good in that the more time I have to absorb the information, the more convinced I am that surgery is the right pathway. The more I come across people who’ve walked the same path, who can encourage and inspire. 

Finding out ...

8 days since I found out I have a BRCA1 mutation…..

In most ways, nothing has changed. It’s been a lovely week. Sunshine, beach walks, swimming, laughter with the family. Sports day! 

And in other ways, it’s been weird, slightly disturbing, odd. Rather confused.

I found out in January there was a BRCA1 gene abnormality in my family (: http://en.wikipedia.org/wiki/BRCA_mutation). My dad was tested October time but he hadn’t mentioned it then - life was pretty stressful as was.

When dad gave me the letter from the genetics team in January, I was feeling pretty shocked. His words of caution early last year of “another one of your cousins has breast cancer, you should ask for screening” didn’t really phase me. Around 1 in 7 women get cancer at some point in life, so two cousins didn’t seem really indicative to my risk.  But, there it was in writing, a letter inviting me to genetic testing. A letter explaining that there was a recognised mutation to the BRCA1 gene in his family - which, unfortunately he had and therefore I had a 50% chance of having too. A few google searches told me that if I did share the same mutation my risk of breast and ovarian cancer were much higher than I thought. Individuals with a BRCA1 mutation are predicted to have a 5 times higher risk of breast cancer, and a risk of ovarian cancer 10-30 times normal.

Testing isn’t compulsory. I could have taken that letter and thrown it in the bin. No one would have chased me. 

But I chose to find out. Because in my mind, when you’re facing cancer, knowledge is power. Although it’s uncomfortable finding out that your risks are massively increased, you also open the door to a range of preventative options, or more regular screening. 

It took around 4 months to receive an appointment letter from the genetics team, and I then had an appointment scheduled for the end of May, just before my birthday. A 5 month wait in total - pretty mad. I had a couple of health scares during that time that thankfully amounted to nothing but I became uber aware of my body! 

The counselling appointment went smoothly. My genetic counsellor, Anna spent time running through my understanding of the testing, the possible outcomes etc. There was very little covered that I hadn’t had a chance to mull over and research in the 4 months prior! I had blood taken straight after, had a little emotional wobble, and then carried on life as usual again. 

Three weeks later, the phone call. Anna called at 1730 on a Monday evening. As soon as she called, I knew. Thankfully real life CRAP situations don’t call for the kind of X Factor 30 second pause situations. So there it was - I got the wrong side of the coin. I have a BRCA1 mutation. 

I let my husband and some close friends know immediately. I am so tremendously grateful for the support they gave and give. I have been showered with cake, flowers and kind words! 

I honestly don’t know what the next few years at least hold. I’m considering all options seriously right now. Emotionally, I’m mostly feeling extremely grateful - grateful to a cousin I’ve never met for pursuing the family genetics, grateful that I live in a country with a free health service and grateful preventative surgery is possible. Grateful for friends and for family. But sometimes, fear and sadness creeps in - fear that I’ve passed it on to our children, of possible surgery, of cancer, of ill health, of not being able to feed my youngest daughter to term. 

So, this is the beginning of this journey. I’m still me of course, but with added complexity. Sigh.