Well it’s been a week or so of two half’s. We had a wonderful weekend with friends in Fife again.We enjoyed good food and even better company. The discussions ranged from climate change to life’s transitions like future weddings, fun toddlers and hospice support. All of life’s shades and colours helping really honest conversation. The new date is already booked time to come together in early spring. Ever the optimists. When we arrived home we discussed how valuable the weekend had been for us both. It’s so valuable to be able to go to the sad and difficult places but also to have fun and laughter.
Then the following evening brought a change to my condition. I noticed a pain in my right side and linked breathlessness. The following day they explored this further and eventually got my earlier scan result. The pain was explained by the cancer having spread in my liver and diaphragm, hence the pain. The new chemo was not working enough and so a new plan means going back on olaparib which worked well before and hopefully will again. I hope to start it soon and increase the monitoring and treatment of anaemia the main problem it caused me last time. All fingers are crossed and we all got the kind of shock that is very recognisable to those of us who live with stage four cancers. My tendency to prefer a little denial is tested when a different reality is enforced! A reminder that we’re not talking years ( a year has already passed I realise) and right now that’s all we know.
As many of you know ( and readers of my book) I worked
to set up the charity breakthrough breast cancer in Scotland as the first director. It is now one of those wisely merged to become breast cancer now, who contributed to the research that developed targeted treatments for women with BRCA gene and triple negative cancer. That was emerging when I was working with the charity around ten years ago. These drugs were the new hope and not just for breast cancer but notably ovarian cancer too.
And here I am,benefitting from the work we had all supported in our many roles. It feels so powerful to be honest and I remain grateful to everyone from the scientists, researchers, fundraisers and influencers all of who ensured it got beyond the lab to help us day to day to live our lives, make memories and enjoy another Christmas with families. When the seeming small things become the big things.
This weekend offers a time to come together with wider family too and to me it’s precious. But Andrew has developed an acutely painful back. It’s not serious but painful and we’re on the struggle bus until it settles. It’s a perfect illustration of the life of the carer who feels they can’t be ill and that they are letting their loved one down when the one they care for feels guilty for the trap their situation creates. I’ve become his advocate and thankfully I can still do that and now he has the right treatment and can draw on more resources. Too often carers just get empty words of sympathy, never helpful, and not much else.
So often the hugely important role of carers both formal and informal is neglected. My carers from the agency are all from overseas, the immigrants so reviled by the politicians. The terms and conditions are poor, meaning that the many hours spent on a bus to go between clients is unpaid. This is both an urban and rural issue. The few paid hours really affects income but not the tiredness of constantly being with or between clients. Deregulation of the care system has led to this, so the new national care service needs to address this issue as well. It has to be a service with compassion at its heart for all and person-centred for clients and carers alike or it will never be sustainable. If only our politicians would address the real issues instead of gaslighting the public with blame the immigrant. My immigrant carers are special and precious. They enrich our lives and I learn from them, they make my life possible. I want to live in a culture that welcomes them, not blame them.
And it’s coming up to Christmas so buy my book ?on line in Amazon.UK and through eBay and tell me about your thoughts. Thanks!
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