Feeling SHIT and finding the good...

The past few months I’ve really come to peace with this risk reducing journey but today? Well, I feel shit! Yesterday I finally got my referral letter through to see the surgeon - hopefully for the last time before surgery - and, I guess, it just made that reality come a step closer.

That in just a couple of months the boobs I developed will have gone.

No more milk. No more warm boobs. No more sensation.

No more nipples.

Gone! 

I’ve learnt that it’s ok to have brief pity parties. I think you could say I’m currently entitled to a fair few right now. 

But I’ve also learnt that prolonging it isn’t great either! 

So, now, on paper I am going to DECLARE OUT LOUD why this journey is a good thing. I am going to take control of my perception of what’s going on and I am going to tell you why it is a positive milestone in life. Not something to be scared of, or change me for the worse, not something to cry about (well, not too much anyway)

3 reasons I feel grateful for this journey: 

Firstly, and most importantly, I have been given the opportunity to significantly reduce my risks of developing breast and ovarian cancer. The Royal Marsden BRCA1 and 2 patient guide states the average risk of a woman developing breast cancer in their lifetime is 12.5%; however, women with a BRCA1 variation have a 60-90% lifetime risk. Having a BRCA1 gene variation also increases the chance of that breast cancer developing earlier in life, and also having repeat breast cancers rather than one single incident. 

Knowledge is power; as I have been tested and was found to have a BRCA1 mutation, I have chosen to reduce my risk by having a preventative double mastectomy. By doing this, my lifetime risk of breast cancer falls to 5%, which is a lesser risk than the general population. 

And so, I am grateful for this journey; of discovering my inherited risks and being able to reduce them

Secondly, discovering my BRCA1 mutation enables my children to do the same. 

And so, I am grateful for this journey; I have empowered myself. Hopefully the same information will empower my children to make life saving choices for themselves also.

Thirdly, it has encouraged me to take control of other areas of my health. Although the mastectomy is one of the biggest steps I can take in reducing my risk of breast cancer, lifestyle factors also play a part in cancer development. When I learnt of the BRCA1 mutation, I began to take control of my diet. Previous to the past year, I would describe myself as an emotional eater. I had a massive sugar addiction; I used it to regulate my mood, some days I would plan my day around where I could go to get a sweet treat.

I took a gradual approach to changing my diet. I love variety in what I eat so I discovered healthy recipes that still packed a full flavour. I gradually eased off snacking by replacing the plentiful sugar snacks with almonds. 

The next step is to do more exercise…..yeah, I’m still working on this one….I think I need to write down some goals! 

And so, I am grateful for this journey; for kick-starting a new attitude towards my health and lifestyle

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.