Alt text: A self-portrait in brightly coloured acrylics, in a cartoon-style. My face is pink, and I’ve got ruby-red lips, forming into a pout. I have white hair. I’m wearing sunglasses with yellow, star-shaped frames, & a blue and green woolly hat with the word ‘Super’ in red across it. I’m wearing a purple, pink & blue cape. I’m sitting in a black wheelchair but only the top half of my frame is depicted because I’m holding a large, opened blue umbrella that hides my lower frame. Upon the umbrella in red capitals is the slogan “Yes I am satisfied with how I turned out.” I’m painted against a yellow, white & green background, with a black handrail and blue garden lights.
Self-Esteem:
My self-esteem has really been affected by my cancer diagnosis. I’ve found it particularly difficult to manage my emotions & #Lockdown hasn’t helped at all because I haven’t been able to talk it all out face-to-face with friends. I’m also paranoid that my sole topic of conversation is cancer because it’s dominating my thoughts & there’s not much else currently going on in my life.
The first time that I felt any low self-esteem associated with cancer was during an early discussion with an oncologist (who isn’t my present oncologist). It was a bit of a fraught time – it was the start of the pandemic; my operation had just been cancelled & we were discussing what medication would be appropriate whilst I was waiting for surgery. I found the discussion hard because it was over the telephone. It quickly became evident that the consultant knew very little about my disability or the medications that I was already taking.
Out of nowhere she dropped this bomb into the conversation: as it was going to be too hard to give me radiotherapy, I should expect to have a mastectomy, & that would be a whole lot easier for me in the long run. I was shell-shocked. At that time, all any of us knew was that I had one tiny lump and I’d been told that a lumpectomy would be appropriate. I was also advised that all further treatment would be planned out after the operation, but it would probably be radiotherapy.
Over the years I’ve found that people are often fond of making assumptions and decisions about what’ll be best for me in the long run, without having a conversation with me first. I’ve learnt that you sooner you put people straight, the better. Trying to keep my anger in check, but failing miserably, my tirade went something along these lines:
“I might be disabled, but I’m disabled enough thanks…
Just because I’m disabled, doesn’t mean that I don’t take pride in my appearance & I’m as vain as hell…
I’ve got large breasts; going around with one missing will just look ridiculous & make me look really ugly…
I won’t be able to balance properly in my wheelchair, I already struggle to keep upright…
There is no way I’m going to let you do this for just one tiny lump…
I’m not going to be lopsided, it’s too obvious…”
The conversation with oncologist ended shortly after.
I was so mad; I love my boobs – I mean who doesn’t, right? They’ve been my best asset since I was 11.
I was dead set on having a reconstruction. I subsequently found out this was going to be difficult for me; the operation would be complex & the methods open to me were limited. Bringing me in & out of repeated surgeries isn’t great for me (dodgy lungs). As the consultant anaesthetist said a few weeks later, “Ideally, I wouldn’t put you under a GA (general anaesthetic) at all, but we have to do it because we have to save your life. I’m confident of finding a way to make you safe whilst you’re under the GA & after surgery.”
The ideal and safest way for me to have had a reconstruction was to have it at the same time as the surgery, but this would have added more time to the operation. For every hour that I’m under a GA, it shortens my lifespan by a year. The team were fighting to keep to the standard operation time for this surgery of an hour and a half (which they subsequently did). Due to COVID-19 restrictions, Charing Cross had designated reconstructions to be ‘elective surgeries’, so they weren’t being offered at the same time as surgery, in fact, it was looking like a 1 – 2 year wait for one.
Feeling pretty humiliated by now, I started researching how to get that part of the treatment done privately. However, when I told the NHS team what I was planning, they said that I wouldn’t have to go private. It was easier working with the consultant anaesthetist because she was a lot more patient & empathetic. She took the time to properly explain why the procedures were complex; Surgery time would be lengthened to 3 hours if we added a reconstruction; difficulties with implants might last into the years, possibly involving repeated surgeries. But most importantly she understood where I was coming from. We were both relatively young & she said that like all young women, including herself, the thought of losing a breast is traumatic, especially if you’re not expecting to. She said whether I was disabled or not, it was irrelevant to her because she was going to explore all the available options that she had. That confidence & reassurance was so important for me to hear.
We agreed that considering my issues with balance and what I’d said about not wanting to look lop-sided, the team would perform a double mastectomy. Two teams of surgeons would work on each side of my body to keep the operation to an hour & a half (normally one breast is done at each time, thus doubling the time of the surgery).
It wasn’t the greatest outcome & I knew it would drastically change my appearance. But it was a matter of saving my life as well as keeping my dignity. I began to think about having an elaborate tattoo on my new flat chest & perhaps embark upon a crazy art installation where I was photographed with different things in place of my boobs. I have some peer mentors from Breast Cancer Care Now. I contacted them because I wanted to find out about their lived experience of these surgeries & changes to their body, but as positive as they were, the prospect of being flat-chested made me feel so low. When I asked my boyfriend what he thought about it, he said he’d rather have me alive above anything else, which halted me in my tracks – of course, what was I thinking, I’m hanging onto my boob which could actually kill me! But despite the life-threatening situation, this feeling of not wanting to lose my boob wouldn’t go away.
When I was in my early 20’s, I had a disastrous operation on my foot. The wound got infected & the infection spread quickly. The surgeon suggested an amputation on the grounds that my foot was causing me a lot of trouble and the best thing to do was to just get rid of it. But I refused. Ok, my foot didn’t work properly & it did cause me a lot of issues, but I loved my foot with its miniature toes, even if no one else could see its beauty. And besides, that foot is mine. In the end, I kept my foot & it eventually it healed well. Once I had the chance to explain to my cancer team that I’d had the same strong reaction to possibly losing a boob as I did to when I was facing a foot amputation, they better understood me.
During this time, I was still working, & I had to make an announcement that our 20th anniversary party was cancelled due to the pandemic. My colleague chose a lovely photo of me to illustrate the piece. It was summer, I was on the viewing platform at a festival, I looked so happy, I didn’t have a care in the word. I burst into tears when I saw the photo go online. I believed that I was never going to look like that again, in fact, I was going to look bloody awful.
I stopped looking at photos for a while.
Literally two days before the operation, there was a breakthrough. The lead oncologist returned from leave & insisted that partial radiotherapy could be successful for me – Breast Cancer treatment is increasing its use of partial radiotherapy & the success rate is high. Importantly, if we went down this route, then I could have a lumpectomy. I agreed & we reverted to our original plan of lumpectomy followed by radiotherapy & drug therapy. There was no more talk of double mastectomy. My boobs had a ‘stay of execution.’
Then “Alien Boob” came long. After the operation, my boob swelled to double the size! Believe me, it had a life of its own & I really wasn’t sure where it was going to end at one point. It had physical impacts; I struggled to sleep on my front because it was painful, my breathing was restricted & my boob became so heavy that I couldn’t push myself in my wheelchair. It was a nightmare!
I had the opportunity to see a couple of friends in the garden between surgery & radiotherapy which was lovely. Photographs were taken & well, you could definitely see “Alien Boob!”
I had another period of not looking at photographs.
The medical term for “Alien Boob” is seroma, which is a build-up of fluid after surgery. I had my boob drained twice which was painless & such a relief to have done.
Other physical aspects of my appearance were changing. I lost a lot of weight in a short space of time after surgery & changed my diet to include more fresh ingredients, fruit but the weight came back on after Christmas & Easter. It’s a nightmare to lose weight when you’re restricted in exercise. I was warned that my hair might start thinning & my skin would wrinkle & appear sallow. I’ve cut down how much I wash & brush my hair but it still falls out. My elaborate rings appear dull against my sallow skin. I know I’m 50, I’m not going to reverse the aging process & wouldn’t want to. Then again, I don’t want to speed up the aging process either, but I’m beginning to worry about just how old I’m going to look in a few years’ time!
I would have rather aged serenely and gradually, but I’m quickly turning into an old bag!
I don’t even know what I can actually physically do anymore. Because I haven’t been able to get out & do physical activity, I’m still unable to judge how affected my right arm is by the surgery. Consequently, this leaves me anxious about what my new level of physical ability might be. It’s not really helpful for me to start being anxious about what I can achieve in the future, so I distract myself with listening to the radio & making art.
I realise that all this self-image ‘stuff’ is largely in my head & the perpetual downward spiral is only driven by me. Now I’m trying to clamber out of it & forge my way back into the world.
However, I’d argue that my low self-esteem isn’t just being driven by me. I think some of it can directly be attributed to where we’re currently at with society’s perception of disabled people. 2/3 of disabled people have died in the pandemic & this is happening in plain sight with no one doing anything about it. I’ve been told that I’m “clinically extremely vulnerable” & the only solution to keeping me safe is for me to stay at home (which is crap advice as I caught COVID-19 twice even whilst shielding for over a year – I mean what was the point of that?!) I know all too well the DNR (Do Not Resuscitate) orders & who wouldn’t be first in the queue for a ventilator. All of this makes me question how valuable my life really is to others.
My low self-esteem comes from my poor mental health too. The treatment is forcing the Menopause on me at an accelerated pace & this is mentally as well as physically hard. I have pretty much all the menopause symptoms, lucky me, so I feel I can’t escape the impending doom.
#Lockdown & the fear of catching COVID-19 again has definitely hampered my recovery because I can’t just get on with the rest of my life & get back to any kind of normality. An important part of any recovery is reconnecting with people that you love, in person, as well as having routines.
I’m struggling to find my place in the world. Because I haven’t spoken in lengthy sentences for so long, & I’ve only used my profile and voice in limited ways over the past year, it takes some getting used to. I’ve noticed that I have nagging doubts about whether I can be coherent, that just loads of words & emotions will come tumbling out in a jumbled-up mess & I’ll only pause for breath when I feel I’ve finished absolutely everything that I’ve got to say.
Sometimes I’m just really, really quiet. It’s because I believe that my only topic of conversation is cancer & I’m going on too much about it, & that it’s over now & everyone’s bored of listening to me talk about it, including me. I’ve stayed in for so long, that I’ve literally run out of other things to talk about – “So what have you been up to – er literally nothing!”
I also get tired really easily & extreme fatigue comes on very quickly. I have fallen asleep mid-sentence on the sofa a few times. That doesn’t make me feel great. I really don’t want my loved ones to see me like this.
I’ve had physical & mental setbacks in my life before. I became a wheelchair user at 25 but I embraced it & adjusted to life relatively quickly. I’ve always had varying degrees of anxiety & taken rest & sought treatment when required. In terms of incidents directly affecting my self-esteem, well I guess the big ones are the times when I’ve been dumped! Like most people, I’ve always felt really bad & convinced myself that I’ll never find anyone to love me, but I’ve got over it in time.
But nothing has impacted on my self-esteem like cancer has.
Who the bloody hell am I? I never thought I’d be asking this at 50. It’s such a strange & upsetting place to be.
Along the road to fighting to get back to myself, once again, art has saved the day.
A couple of weeks ago, 64 Million Artists set us an art challenge to boost our self-esteem. We had to create a piece completing the phrase “Yes I Am…” Suddenly it came to me – I can’t stay in this spiral of feeling bad about myself, I don’t want to be like this, I’m beating myself up for no reason & I’m being too harsh on myself. Then the phrase “Yes I am satisfied with how I turned out” came into my head, together with selfie photo of when I dressed up as a disabled superhero. A few days later I turned the photo & the phrase into the painting that you see at the top of the blog. It was my first try at painting with acrylics.
It made me laugh a lot whilst I was painting it. Of course, there’s no way I can let myself go into this downward spiral. If I’m not happy with myself, then where does it end? I’m well aware of the people that look at me & think “ah, shame” or “yep, she’s spent time at the back of the class with raffia,” so what the hell am I doing adding to all those negative voices by being self-critical?
This painting has very little to do with me having a huge ego, but it does have everything to do with self-preservation.
Self-preservation, the only way to get yourself through life. Stay safe, kids!
The Musings of Spu 