I have lung cancer. In both lungs. And it’s spread to my liver. I’m terminally ill. When I asked about my prognosis, because I need to know, the consultant said about 12 weeks without treatment but maybe one to two years with it. That means Chemo and Immuno therapy at the same time. So obviously I opted for that.
They make me feel incredibly tired. So dead tired that I just fall asleep in my chair which is not like me and very frustrating. I’m used to doing things and the number one thing I do is look after Bill. That has aways been my priority. Bill is my wonderful husband who has Parkinsons and I’ve looked after him as his carer, as well as wife, for the last 15 years.
What happens when a carer with terminal cancer needs care herself? We’re finding out.
For a start, it’s so hard to manage. The other day I went to the hospital for my chemo but they needed to run tests first so it took longer than usual. Sometimes Bill comes with me to hospital but it’s the wrong place for him to be. Long waits, uncomfortable, risk of infection. In the end, we decided it was better for him to be at home. On his own, yes, but he can do things for himself on a good day. He’s amazing really. He’s brilliant at tech, has built himself all sorts of labour-saving devices and, anyway, he has Cookie, our little schnauzer, to keep an eye on him.
But this day wasn’t a good day. He has real trouble with his mobility. He gets locked into a position and can’t move. Sometimes it will take him an hour to get from the car in our drive to the front door. About 3-4 yards. It was one of those days. He couldn’t move to get his breakfast or lunch. Someone knocked on the door but he couldn’t get there to open it. When he went to the loo he couldn’t get out again for an hour. I was so upset when I got home and he told me what he’d endured.
It makes me desperately worried for him but I have to have the treatment so I can be around as long as possible for him. That’s why the list of my treatment appointments has become a sort of sacred object - the (unwanted) focal point of our lives - which is also why I’m donating it with a wry smile to the Stepping Out Museum. It governs everything we do but at the same time it gives me the chance of spending the longest possible time with Bill.
It’s the reason I spent my 77th birthday at hospital having six or seven bags of toxins or flushes or immuno drugs or glucose or anti-sickness fluids dripped into my system. It wasn’t exactly a party but I tried to imagine them as little soldiers going in to fight the battle which makes me feel better. And when I got home something amazing had happened. Bill’s physio, Sharon, had left me a tray of goodies as a birthday present. The perfect gift: including a cheese sandwich, 2 scones, grapes, strawberries, tomatoes and packet of crisps. Lovely surprises like that are an antidote to the grimness.
Even social services, once you have a terminal diagnosis, seem able to offer more help, for which we are truly grateful. We’ve been told we now qualify for a stairlift and ramp so Bill can get around the house more easily. Crossroads Care is giving Bill a care visits so he has company when I’m in hospital. Macmillan may be able to sort a grab rail I need in the bedroom. I think with a terminal diagnosis, organisations get their finger out. They want Bill to be independent as long as possible.
Bill and I have decided to make the best of every day. We have faith that keeps us going. I’m fed up with labouring to breathe. But I’ve got lung cancer and that’s the way it is. If you ask me how I feel, I’ll tell you.
Sad. But we don’t dwell there.