Autism and a mastectomy in a pandemic

October 3, 2023
12:13 pm

My name is Birgit. I was diagnosed with multifocal invasive ductal carcinoma in my left breast in March 2021 for which I had a mastectomy and I have been taking tamoxifen since late April 2021.

I would like to mention right at the beginning of my blog that each of our stories is unique. We all go with different baggage into this cancer journey because we all have had different experiences and circumstances prior to breast cancer. So, no story will be the same however we all have something in common, for various reasons we live with one or no breasts either temporary or permanently.

My diagnosis happened at the start of the second year of the pandemic during another lockdown when Covid vaccines only just started to be rolled out to the wider population. Obviously, I had no idea what the usual breast care service would look like, but I think everywhere services were cut back to focus primarily on freeing patients from cancer. Additional services like reconstruction or mastectomy for symmetry were saved for later after the pandemic was over. Looking back that is only fair and was necessary to allow a continued swift service and treatment in a very busy and overstretched NHS. Sometimes it feels like that patients who were diagnosed and treated during the pandemic received less support and information by the healthcare service. Luckily, I had a lot of support from friends before and after my surgery. I live on my own with two tom cats and thanks to my friends and colleagues I did not feel too isolated even that my surgery happened during lockdown. I used my sick leave to connect with nature during walks in local nature reserves, meeting up with friends for walks and started gentle yoga exercises soon after the surgery. I am grateful that I was diagnosed and treated very promptly and in fact there were only 8 weeks between me finding a lump (which turned out to be two invasive tumours) and my left mastectomy. I am also very grateful that I have a very smooth and even scar thanks to the skills of my surgeon. I only needed that one surgery to remove the tumour and luckily, I don’t have a dog ear either, so there is no need for any corrective surgery.

I was introduced to the Flat Friends by one friend from my kayak club who had a double mastectomy several years ago. I joined the Facebook group in autumn 2021. Everybody is very supportive, and I have learnt a few more things regarding clothing, scars, tattoos, prostheses and exercise. I hope I have been supportive to others as well.

Initially I did not get on with the breast prosthesis at all, in fact I threw my first soft breast form at my cats and was hoping they use it as a toy. I had little clue what to do with it if I am honest. It would have been helpful if somebody had explained to me that I may have to buy new bras with pockets. I eventually heard of Nicola Jane and bought some new bras and now I have a collection of reasonably fitting bras (more bras than I ever had before and most of them look pretty). I did not know my bra size prior to my mastectomy and my prosthesis fitting was over the phone in August 2021 due to the pandemic. One can imagine how that went. (Video calls via zoom were an option). When the prosthesis arrived, I noticed that it was far too big. The breast care unit provide me with a smaller one. Earlier this year I had a face-to-face fitting which went well and made me feel more confident. In total I have 8 prostheses. I made a joke that one needs to free up a whole drawer for storage which is not far off the truth. Due to the size issue, I have 3 soft prostheses, 3 silicon prostheses, 1 knitted knocker and 1 boost prosthesis. Last year I used the boost prosthesis more frequently, this year I changed back to the silicon prosthesis after my fitting. I like the fact that I have options. In some bras some of the breast forms fit more easily than others. Because I started to exercise more after the mastectomy, my body is leaner, and my remaining breast is smaller. After the mastectomy I was introduced to sea swimming by one of my friends and I absolutely love swimming in the sea. Initially I had no suitable prosthesis to wear then I thought why bother. Gradually I got used to swimming without prosthesis and I don’t feel self-conscious anymore. I wear sporty swimming costumes with lots of patterns. People told me that they would not have noticed my lobsided chest and they accept and respect me for the person I am. That made me realise that a lot is going on in my mind, but it doesn’t matter to others. Recently during a mini-heatwave I came out in an itchy skin rash on my left chest wall from wearing the prosthesis and sweating underneath, so I decided the following day to go flat to work. Obviously, I had to point it out to a few people, but they again said that they would not have noticed and that it is up to me what to wear as long as I feel comfortable. During a recent yoga weekend, I did not wear a prosthesis on the last day of the course. I did not mention it to anybody and eventually I forgot that I was a bit lopsided. Now I know I can do whatever I fancy, 8 different prostheses to choose from or going half-flat. The choice is mine.

For me the breast cancer diagnosis was another life changing event and things from the past shaped how I responded to this one. In 2016 after a burnout, I was diagnosed with autism spectrum condition in my early forties. Obviously, the autism has always been there and will be there. This is part of who I am and at times it gives me certain strengths but sometimes it makes me feel a bit like an outsider and I can be my worst enemy or behave inappropriately. It is seen as a disability but additionally it also should be celebrated including other neurodiversity conditions since we can add so much to society with our strengths such as attention to detail, focus, strong interests, knowledge, remembering facts – to name a few.

Sadly, autism often comes along with mental health conditions probably due to the feeling of not fitting in. I have had a few of those including anxiety, depression, insomnia from too much worrying, eating disorders and burnout. Apparently gender issues are also common in people with autism and maybe I have some aspects of that. I never felt that comfortable with being a woman although I wear dresses and skirts. In fact, I probably feel now more feminine since having lots of well-fitting, good-looking bras, I bought some wonder woman socks, I have an ultra-pink yoga mat and I am part of the Flat Friends community.

I have not proactively considered dating since my mastectomy. Most of my adult life I have been single and living on my own. I started counselling recently and I am practicing more yoga and started a yoga teacher training course. There are a lot of things going on in my life and maybe it would be good for me to find some more balance and peace in myself first before embarking on the next big adventure. I hope one day I find a partner who accepts me as I am but maybe I need to focus first on my own self-acceptance.

The breast cancer diagnosis and mastectomy have certainly made me aware of many things in my life which I have potentially neglected previously. I learnt to be more grateful for all the people, pets and things I have got in my life. I know that I am not alone and that there are people out there for support and that we need to support each other. The Flat Friends community is certainly one part of my support network.