Two Years On

I’ve come to the conclusion that I’m not going to enjoy February & March like I used to.  Here I mark two years on from diagnosis & reflect on celebrating International Women’s Day as a disabled woman.

Alt text: A white lady with brown-blond long hair, dressed in a black puffa jacket with a fake fur hood, sitting in a wheelchair outside in the garden.  She has a pair of black-rimmed glasses perched on the top of her head. She is holding a mug of tea & she is smiling.

I’ve been absent from blog-writing in the month of March.  It’s fair to say that I’m probably not going to enjoy both February & March for the rest of my days.  Thursday 10^th March marked two years since I was diagnosed with ER+ Stage 1 breast cancer.  If that wasn’t mind-bending enough, February is the month of my annual mammogram (I received the all-clear, thank God) & I have my annual review of my lungs by Brompton Hospital (they’re working very well & don’t appear affected by the partial radiotherapy treatment or two bouts of COVID-19).  Mega #Scanxiety.  In March I had my telephone review with my Oncologist & I also met my new consultant who supports me to manage my existing impairment.  That’s quite a lot of nervousness to manage & new information to process.

Don’t get me wrong, things could be a lot, lot worse, but now the cancer treatment is taking a heavy toll on my already-weakened joints & bones.  Of course, I’m not going to give up the hormone therapies, but it’s not the treatment that one would choose to give to somebody with damaged bones, & who was already on the cusp of osteoporosis before cancer appeared.  I’d be lying if I said that I wasn’t daunted by what my mobility levels will be like in 10 years’ time when all this treatment finishes.  And true to form, I’ve internalised most of it & just pretended that it isn’t happening.  When I have tried to describe what I’m going through, members of support groups & my medic teams are all equally non-plussed about how to help me in the long-term because they haven’t come across many disabled people in my situation. 

The main issue at the moment is that my right leg, ankle & foot isn’t working properly & I’m in excruciating pain.  This is a disaster.  I rely on my right leg to transfer, to drive & to balance.  ‘Plantar fasciitis’ (google it, kids!) has been suggested.  A sharp increase in neuropathic pain is coupled with an increase in the nerve pain relief & a reduction in anti-depressants (yes, my mental health took a dip at Christmas).  Other regular pain relief doesn’t touch the sides.  I’ve been on morphine patches in the past for chronic pain caused by my disability & I don’t want to resort to patches again as I feel that they changed my personality for the worse.  These days I swim much more & do what yoga that I can – & this does bring some relief.

This is tough.  If I find any answers or even words of wisdom, you’ll find them written in my future blogs!  The only thing for sure, is that I need to continue my quest in finding disabled people who then receive a cancer diagnosis.  I mean, how the f*** are you coping?!

Within this tumultuous month is always International Women’s Day (Tuesday 8^th March).  Along with many other women across the globe, I celebrated it, just like I celebrate International Disabled People’s Day (3^rd December).  These days of celebration & reflection carry extra meaning now I’m a disabled woman living with a breast cancer diagnosis.

Of course, my gender, sexuality & sensuousness continue to be unrecognised because I’m disabled.

Here are two golden nuggets that demonstrate the general population’s ignorance:

I’ve gone into detail about this in a previous blog, but whilst discussing surgeries, one consultant (not one that I ever met or was involved in my care) suggested over the telephone that I just have a mastectomy instead of a straightforward lumpectomy (standard for my diagnosis / prognosis) because it would be “easier for me to cope with.”  I found this very demeaning because this medic didn’t recognise that I’m as vain as the next person, nor did they respect my needs or desires; they didn’t consider that I might be in any sort of relationship, or the emotional impact of potentially looking more disabled than I already am.  And it’s always the ultimate “does (he or they) she take sugar?” moment when someone makes a decision for you that doesn’t involve you in the process. 

In my twenties, I had a GP that was reluctant to refer me to a gynaecologist to discuss different contraception options because I was “obviously sexually inactive.”  This GP was so very, very wrong in their assumptions.  I persevered & once I did get referred to a consultant, they helped me to resolve many gynaecological issues that I had been suffering with in silence.  More importantly, they never made me feel less of the woman that I was.

Society is fond of putting people into little boxes & labelling them.  But like the sections in record shops that attempt to categorise music by genres, it’s complicated.  I’ve spoken to a lot of disabled women who also have other ‘protected characteristics’ & we all agree it’s a case of “which box do I tick today?”  But all of tick several boxes, me included.  Alongside ‘disabled’ & ‘woman’, I tick the boxes of ‘punk’, ‘goth’, ‘from a single family’, ‘working class’, ‘Essex’, but often it feels that I can’t be in several boxes at once.

Around about 2017 / 2018, the industry in which I work very kindly started to recognise me as an achieving woman in the sector.  I was thrilled about this & very appreciative of the award & accolades that I was given.  I’d been speaking on disability issues for years & this is the strongest part of me; I take such enormous pride in identifying myself as a Disabled Person.  Yet I’d never been asked to speak on women’s issues nor received any awards for a being a woman.  Then I found myself in a bizarre situation at one event where I was nominated for one such Woman’s Award, but the ceremony was being held in an inaccessible venue, so I couldn’t get in to receive it.  It’s like overnight, my disability & my access requirements had been forgotten.  That’s why I feel that I can’t be in several boxes at once.

The impact of society not recognising that I’m both disabled & a woman comes full circle.  If it’s felt that disabled woman aren’t going to be affected by common women’s health issues, then those services will never be offered to, or be accessible for, disabled women.  And if medics don’t treat disabled women for a number of common women’s issues, then they won’t have the knowledge of how to design an effective treatment plan for women who have a number of complex & underlying impairments.

And that, folks, is where I currently find myself.

Alt text: A white woman, dressed in black & wearing black-rimmed glasses, sitting in a wheelchair, is outside a hospital entrance.  There are several people walking in the background.  Above the entrance hang several, large heart-shaped garlands, made out of dried flowers in rainbow colours that symbolise the NHS (UK’s National Health Service).