What a year

As the end of another year approaches, I’ve been in reflective mood. It’s almost three years since my breast cancer diagnosis which means that, unbeknownst to me, at this moment in 2015 I had a tumour growing in my left breast.

I’m a very different person now, both physically and emotionally. As I write I feel stronger, calmer and more optimistic. I have many ups and downs, but the downs are less frequent and not so deep.

2018 has been such a positive year for me. I’ve done many things that previously I would have thought were beyond my capabilities. I’ve said yes to opportunities when previously the answer would have been no…and please don’t ask me again and bolt the door behind you!

What has been the catalyst behind all of this? Cancer and my decision to live flat. I’ve experienced more personal growth this year than in any other. Truly turning a negative into multiple positives.

Topless model

Yes, I am a topless model!! The year and all of my fun started in February when I asked Sue Lacey to take some photos of my newly flat chest. She took some amazing photos  and I’ve used them for the rest of this year. They’ve appeared on this and guest blogs, in Good Housekeeping, on the BBC News website, in Huffington Post, in a Bulgarian glossy magazine, and all over my social media channels. If you google my name and look at the images you’ll see my smiling face and outstretched arms appear on multiple websites.

I also did a photo shoot with Sophie Mayanne for her brilliant Behind the Scars project, joining hundreds of other scarred people (including Liam) in her collection of images. One of my photos was shown as part of a pop up installation at the Victoria & Albert Museum… quite surreal. Sadly I couldn’t be there as I was in hospital having my hip replaced!

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Photo: Sophie Mayanne for Behind the Scars

Writing

I never thought that I’d become a writer. But that is what I have become. As well as writing this blog, I’ve written pieces for Breast Cancer Care and other charities, and guest posts for other cancer blogs. I really enjoy writing and find it to be very therapeutic and beneficial for my mental health.

I have big plans for my writing in 2019…so watch this space for news of my literary project!!

Advocacy

Of course it’s been wonderful for me to see myself in all of these places, but for me, what’s been even more wonderful is the way that I’ve been able to use my images. I’ve become a blogger and patient advocate. Again, not roles that I ever envisaged myself doing. Advocacy and raising awareness are now a major part of my life. Advocating for everyone to be given all of the treatment choices when faced with mastectomy – to include staying flat alongside reconstructive surgery. And showing that it’s a positive choice to live as a woman without breasts, whilst starting to break the taboos around the visibility of a flat female chest.

This is why you see me banging on about all things flat on Facebook, Twitter and Instagram. I promise you, I’m not setting out to bore you!

Campaigning & policy work

Running in parallel with my advocacy is the campaigning and policy work that I’ve done with Breast Cancer Now.

I was thrilled to have been part of the 55000 Reasons campaign that the charity ran in to try to secure extra funding for breast cancer in the government’s NHS Long Term Plan. The campaign started with a photo shoot and culminated in a meeting  with the Secretary for Heath and Social Care, Matt Hancock.  We were able to hand him the campaign book and he listened attentively to our breast cancer stories. I’m hopeful that some of the requests that Breast Cancer Now put forward will be included in the Long Term Plan.

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Photoshoot for 55000 Reasons campaign
A week earlier I’d been invited to the House of Commons to listen to a debate on breast cancer. This was a great opportunity to see the workings of Parliament close up, with the added bonus of being able to have tea and cakes on the members terrace overlooking the River Thames.

I was one of the patient representatives on the policy advisory group which looked at addressing barriers to physical activity amongst breast cancer survivors. I hope that the outcome of this will be announced next year.

I was also part of the core group that was tasked with developing one of the charity’s key programmes. Although I was invited to talk about my perspective as a patient – something that I am very familiar with – I found the meetings challenging. I’m definitely not familiar or comfortable with giving my opinions in front of colleagues whom I hadn’t previously met.

This part of my year ended on a high when I was one of Breast Cancer Now’s patient representatives at the Britain Against Cancer conference at Westminster, organised by the All-Party Parliamentary Group on Cancer. It was good to hear some of plans that government and opposition have for trying to address the scourge that is cancer. Patient experience and views were high on the agenda. One of my high points was meeting other patients, especially those who I’ve met this year virtually on social media.

Broadcasting

Well, this was fun! I’ve written about how I came to be in the BBC Radio 5 Live studio with Nihal Arthanayake, guest editing an hour of live radio about choices after mastectomy and my choice to live flat. Again, I pushed myself to do this as it was a fantastic opportunity to get my message out to a much bigger audience. I was so nervous on the train to Manchester but it was such a thrill and a positive experience.

The most wonderful part of it all for me was that Peter, a male breast cancer survivor, contacted the show to share his story. His wife had died from the disease and he’d felt isolated and alone. Happily, he’s now met other men who have gone through what he has and has begun to share his own story. An unexpected and brilliant outcome from the show.

I love listening to podcasts, so I was really happy to be invited to be a guest on Very Loose Women. I was interviewed by Leo Schick and Soila Apparicio as we drank tea in the Cafe in the Park and walked around Rickmansworth Aquadrome. How wonderful for me to talk to such intelligent and motivated young women about my experiences…a new audience to hear the debate on patient choice.

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Leo, Soila & me

Volunteering 

I can’t write about this year without including the volunteer work that I do with Breast Cancer Care. I felt so supported by the charity when I was diagnosed that I wanted to give back. I volunteer at the Moving Forward courses at my local cancer centre, Mount Vernon Hospital – where I had my chemotherapy and Herceptin injections.

The women who attend are at the end of their active treatment and my role is to try to show them that they can move on with their lives after breast cancer. I love being with the women during the four week course as they often move from anxiety and fear to understanding that life can go on, albeit differently to how it was before.

I’ve recently started supporting patients as a Someone Like Me volunteer. Breast Cancer Care matches me with a woman whose diagnosis and life experience closely matches mine and we have phone support sessions. I find this challenging but amazingly rewarding.

Another charity that I’ve started volunteering with this year is Flat Friends UK.  What a fabulous charity this is! It gives support to women facing a mastectomy and not wanting to have reconstructive surgery, and also campaigns to ensure that healthcare professionals advise patients of all their treatment options – including staying flat. Being involved with a this community of flat women is inspirational to me.

Other stuff!!

A major highlight for me this year happened in July when I acquired a new hip! I can honestly say that the surgery has transformed my life. The acute sciatic pain that I was suffering in my right leg vanished along with the arthritic pain in my right leg. I’m now exercising again. Brisk dog walks, Nordic walking and personal training sessions, followed by tennis and netball in 2019…I hope. I’ve written more about the op here.

Although Liam and I didn’t have a big holiday this year we still had alot of fun. We spent two nights in Kent visiting Dungeness, Camber Sands, Rye and Sisinghurst Castle and Gardens, which was my favourite. Our short staycation ended with a Michelin star meal at West House, Biddenden. Two other summer outings were to Chelsea Flower Show – at last – and to the tennis at Queens.

Mental health

I want to be honest in this blog so need to mention my fragile mental health. The main reason that I haven’t gone away this year is my anxiety. I’ve found it quite impossible to book a holiday as I just didn’t feel able to leave my home. We had a long weekend in Spain booked with friends early in the year and I had to cancel – my anxiety was much too great. So I decided to take the pressure off myself and stay at home this year. Thankfully I have an ever supportive husband who understands my inner struggles.

I’m having counselling to try and address the underlying causes of my anxiety, and am making progress.

I’ve heard people talk about cancer as a gift. I don’t see it like that. Breast cancer has given me many great opportunities and opened the door to loads of wonderful experiences. There’s no doubt that I’m a changed woman, both physically and mentally. But guess what… I’d so prefer it if I hadn’t had cancer and still had both of my breasts. So I mourn my breasts and my old life, and embrace my new normal and all that that brings with it.

Footnote: Breast Cancer Care and Breast Cancer Now are to merge on 1st April 2019. I’m very happy about this – it makes so much sense and will make mine and a lot of the other supporters’ lives easier.

 

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