By the end of March, the country was firmly in its grip, and on the 26th we were told by a consultant pharmacologist: “I have advised that David is in the high-risk category and if he gets Covid it is most likely to be fatal. We, therefore, advise that he stops treatment, and David and his wife agree with this proposal.”
This wasn’t entirely true: we hadn’t agreed; rather we had no option. We were told a scan would be planned for six weeks from then. But how anything would be safer in just six weeks’ time was unclear. We were told at that point we were yet to reach the peak of coronavirus.
So there we were, left to cope on our own. We were offered no support or guidance in dealing with a very sick man. Had things turned out differently, Twiston’s last cycle of treatment would have started on May 28 and finished in the middle of June. But my husband never made it that far.
The district nurses informed us that if he wasn’t having treatment, they couldn’t carry on cleaning the PICC line and it therefore must be removed. This posed another dilemma. We’d been scared away from going to hospital, having been warned it would kill him. We’d been left to deal with everything ourselves. But we couldn’t deal with this. So, in early April, we togged ourselves up in special suits, donned masks, goggles, gloves and overshoes and, with some trepidation, went into the day treatment unit to have the PICC line removed.
After that we were left with nothing, having to cope as best we could. Not only was Twiston’s treatment stopped, but he’d also been left without any proper pain relief.
We understood the gravity of the situation the NHS was dealing with, but we felt we’d been utterly abandoned. I wrote to my GP and made my feelings quite clear: “We feel we’ve been dumped by the NHS and left to cope with this disease on our own. It’s a pity we can’t both just die and leave you without the responsibility for both of us.”
Perhaps it sounds melodramatic, but I was feeling desperate by then.
The doctor prescribed some codeine for the pain and we soldiered on for another few weeks. But Twiston could no longer get in and out of the bath, even with my help. When I rang our local occupational therapy team, they said they weren’t doing assessments at the moment (again due to Covid-19). In the end, a neighbour lent us a plastic garden chair that could fit in our shower. It was far from ideal, but worse was unfortunately to come.
As Twiston grew weaker and weaker, my daughter and I were supporting him, dressing him, even brushing his teeth. His swallowing had started to deteriorate and getting down tablets was hard. He had also become more confused.
Some difficult conversations took place. I tried not to let him see how upset I was feeling, but one night I just couldn’t help it. He had said: “When all this is over, we’ll have a holiday.” I replied, “I’m sorry, there won’t be a holiday. This is cancer. It has its own way and at the moment we’re just trying to manage it for you and support you and we’re not doing a very good job.”
He protested: “You are, you’re wonderful.”
I just looked at him and, blinking back tears, said: “I don’t want to lose you.”
“I don’t want to lose you either,” he said. “But there’s always hope.”
It was all I could do to agree. But I knew in my heart the situation we were in was hopeless. I constantly had the feeling we were swimming against the tide. I was watching an intelligent, lively man collapse before my eyes and there was nothing anyone could or would do to help.
The impact was horrendous.
Shortly after this heartbreaking conversation, he fell and banged his head while trying to get out of bed. He decided after this that he’d like to go into a hospice, where the wonderful staff were amazed at how long we had coped with no support and minimal pain relief.
We could only visit him one at a time, but he wasn’t there for long in any case. Four days later he died.