One Sunday night about 18 months ago there was a knock at my door, I opened it to be greeted by a smartly dressed young man. He proffered his badge and informed me he was working to collect donations for a cancer charity. He gave me a statistic that one in three people will be affected by cancer during their lifetime and went on to ask if I would like to donate money regularly to fund research into cancer and its treatments. I responded that I would give money regularly to cancer charities when neurological disability such as cerebral palsy got the same level of publicity and financial backing.
I have to confess, it had been a bad day. I was coming to the end of my battle with Social Services to obtain support to enhance my quality of life, give me a purpose and help me achieve some life goals. Whatever I did, I felt like I was falling through the cracks. I felt very vulnerable with only family members and a bit of private support I was able to fund with my Disability Living Allowance. It exasperated me that people grasped the need to provide good support services and treatment for cancer but seemed to be blind to my situation.
However, three months ago now my political stance regarding cancer charities came back to haunt me in the very worst possible way. My mum, who had been ill for some months, was finally diagnosed with a rare form of cancer. You see the adverts on TV of people falling backwards having been hit by the tsunami of their diagnosis, that’s exactly what it was like. Cancer has always been in the background, like the mist and fog which comes with the onset of winter. The women in my family carry the predisposition to develop breast cancer, lumps, bumps and breast changes all of which were openly discussed. I was almost blasé, when my mum told me that a breast biopsy had revealed a high risk of malignancy and she had decided to undergo a mastectomy.
I have to say mum sailed through the whole thing; applying the same logic and fortitude to her recovery as in the past she had to my physiotherapy, that good old ‘no pain no gain’ ethos. Within a month she was back to helping me with physical tasks and even lifting my wheelchair in and out of the boot of the car, not medically recommended. I have to confess to breathing a sigh of relief as the risk, in my eyes, was gone and the panic was over.
Two things are interesting about the current situation: one, the cancer was a type that was entirely unexpected and two, the diagnosis has led to some odd conversations with my mum. For example, immediately after announcing that she had cancer she told me not to worry as my dad would be able to epilate my legs. This was the first of my personal care issues that she reassured me that dad was going to learn to support me with. I find it fascinating that of all the things she could worry about, leg hair was a priority.
I have now found myself judging mum’s health and wellbeing by whether or not she comments on my posture. Historically she has been like a human spirit level when it comes to how I sit and stand, whether my clothes are on straight and if my trousers need pulling up. When she has been really poorly, this level of awareness disappeared and I thought I would find it restful, but found that I do not. I have resolved never to internally whinge about this ever again.
Similarly, now dad has taken over many of the household chores he has begun to apply his engineering training and logic to various scenarios. He has a complex spreadsheet to help him organise the weekly food shopping, column headings are: item; need it; got it. Despite this he managed to forget the milk recently as they fell off the end of his sheet. Interestingly, mum has noticed that the food bill has inexplicably gone up.
Mum has developed more of an understanding of the necessity for television, the lack of which created a 2 day stand off when she was allocated the 1 bed in hospital where the TV did not work. She had been in there for 7 weeks and felt isolated from the outside world. It proved to me that the little things really do matter.
Once someone close to you has this diagnosis, you feel that it is everywhere. Dad and I went to the canteen at the hospital and the lady at the till asked if she could interest us in a cancer awareness badge, I told dad that I thought we were aware enough of cancer without the need for a physical reminder.
Dad’s car previously used to be an engineer’s mobile office and now routinely carries 2 wheelchairs. It has begun to resemble a patient transport ambulance. Dad is now becoming as conversant with the lingo of hospital as mum and me and has to work out what to do when both mum and I have a hospital simultaneously, which has happened more than once.
Dads are much less tolerant of NHS idiosyncrasies, he will ask the question, “Why is that desk so high?” and “Why are all the bins in this hospital foot operated when half the people in here lack the use of their lower limbs?” Compare this with mum’s perspective that yes, in an ideal world there would be a low counter but we have more pressing issues so, we have to pick our battles wisely.
The transition of moving from mum’s care to my dad’s is taking some adjustment for me. Dad and I are not so polished as my mum but, like many British institutions, we get there in the end.