Alt Text: I’m a white woman with blond hair tied up in bunches, & blue eyes, but with no make-up, sitting in the back garden as it’s turning dusk. I’m wearing a black sleeveless dress & I’m sitting underneath a large blue umbrella. I’m smiling whilst taking a selfie head-shot. I’ve positioned the camera so that a book appears on the white garden table behind me. In the background are plants, a wooden greenhouse, other white garden furniture, & garden lights lit up & strung up against the brick walls.
Cancer bends your mind.
It’s mind-bending having cancer. I spend a lot of time pushing away intrusive and negative thoughts. And this is doubly difficult because I already fret about aspects of my existing disability worsening through age. Now I’m winding myself up about how the next set of treatments (letrozole & zoladex) will erode my bones even faster & what it could do to other major organs & my fragile circulatory system. To me, living with a cancer diagnosis is as much a mental health struggle as a physical one.
Often, unwanted thoughts appear when I least expect it. For instance, whilst I was waiting for my operation date last summer, I was sunning myself in the back garden, listening intently to my playlist & trying to avoid getting splashed by my neighbours’ boys who were having a massive water fight next door. Just a regular afternoon in #Lockdown. Then this thought popped into my head “what if it’s my last summer?” And then it was followed by an onslaught of negative thoughts, “what if I never hear the birds tweeting, or the boys screaming with laughter or if I never catch up with my upstairs neighbour as she’s hanging out of her kitchen window. What if I won’t be able to see my buds develop into flowers, or my veg go from the plot to the table?”
Then came the horrible realisation that this was a reality for my mum because she died in July 1987. The wave of terror that went through me left me unable to breathe.
It’s hard to convey what exactly happened next – my brain suddenly just flipped out on me. Basically, it abruptly ‘shut down’ these dark thoughts & there I was back in the moment once again. Just me, sunbathing, listening to the kids, etc.
My brain reacted in a similar way to how my body reacted when I was waiting for my operation & I was on drug therapy to prevent any spread. My body appeared to ‘shut down’ & I became really tired, & then the medication took over as it coursed through my veins & bones. I guess my brain also ‘shut down’ in order to support me to cope with having to fight against the cancer taking over. It seemed to be concentrated on keeping my focus to remaining positive. Multiple people & multiple articles tell you that remaining positive helps & believe me it does help. On the whole, I’m an optimistic person but when your bones are grinding & you have a big hole in your right boob, even the most positive person is tested!
I guess also that my mind felt that it had already been bent enough for that afternoon!
Negative thoughts have a knack of appearing during times when I need to be the most resilient & practical; all my CBT (Cognitive Behaviour Therapy) techniques fly out of the window & my brain turns to mush.
I might have had the best day ever, but suddenly this thought pops up; “what if this isn’t the last that I’ve seen of cancer?” I think I’d feel more confident if my oncologist hadn’t expressed that I wasn’t getting quite enough treatment just using tamoxifen & changed me over to zoladex injections & letrozole to try & stave off any local or recurrent breast cancer. And you’ll know from previous blogs the sheer terror that I feel every time anyone refers to my lymph nodes because of what happened to my mum.
“What if it comes back more aggressively next time?” This is another recurrent theme. I read blogs & talk with other people who live with a cancer diagnosis & they’re far healthier than me & by that I mean no impairments or previous health issues. Now some are nearing the end of their lives. I’m baffled by how I’ve got through everything so far. I can’t get my head around it.
I’m going through a lot with this new treatment. I need to spend more time at the hospital. This means that I come into contact with more patients & their various stages of cancer which frightens the shit out of me because it reminds me of my own mortality & what could happen (sorry if that comes across as insensitive & uncaring, it isn’t meant to, I’m just giving an honest reaction & it triggers such a lot of bad memories for me because of past experiences that I’ve seen close family members endure).
I’m confronted two times per month with my needle phobia & the sight of blood. I need blood tests before each treatment & then two days later, the zoladex injection into my stomach. Because I have a circulatory disease, my veins are deep-set so it’s always a struggle getting blood from me, involving several attempts. If it’s done in the crease of my arm, then it rarely hurts, but I just end up winding myself up & I conjure up all sorts of things that could happen days before I’m due to have treatment. It didn’t help last time that I had a particularly cruel nurse who was very insensitive about my phobia but after I gave feedback to the hospital trust, it’s being dealt with at a senior level (being fair on the Hospital Trust, to be treated badly by one of the staff is a very rare experience). Despite all the support being offered in the continuation of my treatment, I’m still reluctant to return to the Chemotherapy Unit because of the many “what if’s?”
I’m constantly knackered & confused by the new injections & drug medication because it’s accelerating the menopause – oestrogen is being reduced in my body because my cancer feeds off it. I’m currently in the headspace where can’t see a time when that tiredness & confusion will change for the better – I know it will, but it took me 9 months to get used to the side effects of tamoxifen. I know I have to be in it for the long haul, but I feel so frustrated by it. I need rest in between working, writing, creating my artwork &, well, simply day-to-day activities. Resting gives me time on my hands. And then the thoughts creep in because I haven’t got the energy to keep myself occupied.
In fairness, I’ve always been of an anxious disposition. I’m on a constant state of ‘high-alert.’ I’ve always over-analysed my experiences. I always over-plan. I rarely leave anything to chance.
In many ways, me getting cancer isn’t a good scenario because:
- It makes me uber anxious.
- The cancer really isn’t something I can control (or actually anyone can control!)
Unwanted thoughts really piss me off; I mean, they really ruin my day. They annoy me. I hate anything that gets in my way & stops me in my tracks. If we go back to the moment in the garden, I just wanted to have a lovely, relaxing afternoon, not to end up so terrified that I couldn’t breathe. It’s such a waste of energy trying to push these bad thoughts away.
I believe #Lockdown has made everything to do with cancer harder to deal with. Because I’m in the process of reintroducing myself into the world which I find quite daunting, naturally, I worry about re-starting. Also, there’s the added anxiety over what my new level of physicality might be as I’ve not had the chance to test my right arm’s power (arms can be affected according to the degree of breast cancer surgery & the impact on the body, it varies from person to person).
As with all these things, the anticipation of what might happen is much worse than what actually does happen & I know that venturing back into the world will help me a great deal. About a month ago, I went back to the office for a couple of hours to collect some equipment, but I also grabbed the opportunity to catch up with two colleagues, one of whom is new to the team. I had convinced myself that I’d cry through being overwhelmed by the occasion & I was a little daunted too because I was travelling without someone supporting me. But I did it & it was ok because the cab driver was lovely. Once I’d negotiated with the builders to remove some scaffolding poles that might block our office entrance (so nice to have a familiar interaction as an everyday disabled person, lol!), & played around with the door entry system until I had to buzz my colleague to let me in, it seemed like old times! I was overjoyed to see my two colleagues & we immediately started chatting. Not a tear in sight from me, just lots & lots of laughter.
Next week, I’m planning to go to my first birthday party in a friend’s garden. I’m going to be seeing a lot of mates that I haven’t seen for the longest time! I’ve had my two COVID-19 vaccines & now my 2-week wait period is over. I should have 95% immunity. I’m hoping that a bit of chatting ‘shit’, singing & dancing will banish those negative thoughts, even if it is just for one afternoon.
Finally, I’m going to return to the photo that I’ve included with this blog. I took this ‘selfie’ at dusk in the summer #Lockdown. It was the perfect evening & it was still hot outside. I could hear distant laughter drifting over from the gardens around me. I had been talking with my upstairs neighbour who had adopted her customary position of leaning out of her kitchen window. My notebooks & current reading material were scattered on the table in front of me. I was living in the moment & I was at peace. My mind was settled.
I look forward to many more of these moments in time.