Suzanne was diagnosed with breast cancer last year at the age of 49. She explains how her pre-existing impairment and the pandemic affected her treatment.
I blamed myself for missing the lump
My cancer was picked up on a mammogram early last year. Due to my family history of breast cancer, I’d been having annual breast screening for several years. At the time, I had symptoms which I felt were different to my existing disability, but I put it down to the menopause.
I had a biopsy, and the radiographer said that she had seen something in my lymph node. She also guided my hand to the small lump in my right breast. I was shocked. I blamed myself for missing the lump – I’d stopped regularly checking myself.
It was then that I recognised the signs of breast cancer and, what with my mum and my sister having gone through it, I thought, ‘OK, now it’s my turn’.
My disability complicated things
Once I had the diagnosis of stage 1, ER positive breast cancer, it was a bit of a relief to know that it was treatable, but I still cried my eyes out and felt very daunted about the road ahead. I’m disabled from birth, so having surgery isn’t great for my compromised lungs, and the pandemic had just started.
My breast cancer team were amazing and very positive of a good outcome for me. However, I knew that there would be complications along the way because of my impairment and I had to prepare myself and the team for that.
Unfortunately, due to the Covid-19 pandemic, my operation was postponed from March to July. When I received the call about the postponement, I reacted with anger. I felt that I was going to be left to die and because of my disability, I wasn’t worth saving. There were a lot of messages being bandied about at the time about disabled people receiving DNR orders and that doctors may have to make decisions about who would benefit from a ventilator.
The pandemic caused delays
The breast cancer nurse explained that they weren’t cancelling the surgery because of my impairment, but there were two serious issues that had to be taken into consideration.
The first was that my lung consultant had advised it was highly likely I would need a ventilator after the operation and there was a severe shortage at the time. The second was that, if I were to catch Covid-19, I’d be unlikely to survive it, so bringing me into hospital would be risky during the critical periods of the pandemic.
As it turned out, I didn’t need a ventilator after surgery. In fact, I went home the next evening, much to everyone’s surprise – including my own. Also, despite shielding for over a year, I caught Covid-19 twice and wasn’t hospitalised, although it was a frightening and physically painful experience both times. I must have more than nine lives!
I was proactive with my treatment
In the end, postponing surgery worked to my advantage because it meant that I had more time to plan my treatment with my amazing team. With the power of technology, I connected my consultants from three different hospitals so that they could input into the treatment from a holistic point of view.
I also researched the various treatments and, while waiting for surgery, I chose to go on tamoxifen. There was some discussion about a mastectomy, but I refused. Just because I’m disabled, doesn’t mean that I’m not as vain as hell!
In surgery, two small lumps and a small cancer in one lymph node were found and removed successfully, and I had clear margins. Unfortunately, I had a large bleed and I had to have my breast drained twice. I was in a lot of pain, and it was hard to push myself in my wheelchair with the weight of my swollen breast and recent surgery in my armpit.
There were changes to my treatment
What terrified me the most was waiting to find out if the cancer had spread. I had a bone scan and a CT scan: two procedures that are uncomfortable for me because I’m a wheelchair user and I can’t lie on my back for long. Luckily, they were clear.
I then had five days of radiotherapy. This was physically demanding for me because the team had to work out a way of getting me safely onto a high table and not slipping off. In the end, they secured me into the equipment with a kind of suction bag that was moulded to my shape.
After the second wave of Covid-19, the oncologist persuaded me to change treatments. Because more cancer was found during my surgery, my lymph node was sent off for testing. It was estimated that chemotherapy would only improve my chances of cancer not returning by 6%, so I was advised against having it.
However, my oncologist was still concerned about me not having quite enough treatment to prevent a recurrence, so I changed to letrozole and monthly Zoladex injections in my stomach (which isn’t easy with my needle phobia).
Cancer is still affecting me
Nine months later, I was able to have a phased return to work. It feels good to be busy.
I started creating art and writing again, profiling my experiences of being disabled and living with a cancer diagnosis on my monthly blog.
I do daily arm exercises and weekly yoga, and I’m currently waiting for a referral from my GP so I can get a personal trainer and return to the gym. I eat much more fresh fruit and veg than I used to before and less processed foods.
Living with a cancer diagnosis is as much a mental process as it is a physical one. My mental health has been impacted, and I think my recovery has been slower because I’ve not been able to return to life as quickly as I could have done because of Covid-19 restrictions. I’ve been isolated from my friends and family which is incredibly hard.
I want to help others like me
Breast Cancer Now has been amazing. The volunteers have really helped me to understand more about everything because of their lived experiences, and Maggie's Expressive Art course is also so much fun!
However, there is an experience that’s missing in the public domain and that’s why I wanted to blog; I had real difficulty finding other people with lived experience of being disabled and having cancer.
To this day, I only know one other wheelchair user with breast cancer, and she had a different type to mine, so our experiences were slightly different. I hope to reach out to others in a similar position as me because I’ve experienced fear and isolation due to my set of circumstances. I’m convinced that I’m not unique.
Going through breast cancer can be a lonely experience, which is why we have volunteers who are here to talk. Check out our Someone Like Me service for more information.