The two charities who have provided practical support to me are Roy Castle Lung Cancer Fòundation and MacMillan.
The Roy Castle people have been brilliant at providing drug information that just isn’t online. A direct line to Astra Zeneca on my behalf. Answering questions that were beyond Oncobabe either due to knowledge or time. They’re also a research body that may, at some stage, magic up a cure. That remains a long shot for me but it’s all I’ve got so I support them.
MacMillan are, perhaps, more practical. Rather than seeking out the cure they hold your hand through the process of diagnosis, treatment and recovery for some, dying for others. For me they triggered the paperwork that generated my Personal Independence Payments. In turn that gave me access to the motobility scheme meaning I have a reliable car to get around in. Their other work seems to be very focused on financial support. Working with energy companies, banks and the like to cushion the financial blow of cancer.
If I’d quit work on health grounds and not had a permanent health insurance policy I’d be struggling financially right now.
Which brings me to a story I spotted in the news this morning. Living longer, as I hope to, with advanced cancer brings new challenges to cancer sufferers. It’s obviously an article that’s close to home. I’m only half way to their definition of “living longer”.
I see the term “scanziety” for the first time. It takes ages from scan to scan results. Over three weeks for me last time. Not much quicker when the private sector had me. I’m not sure I get overly stressed during that time now, but others do on my behalf. And waiting isn’t fun. And you do wonder if a bit of overtime from radiologists can clear a backlog and get faster results to consultants and patients forever once that backlog is cleared!
The reference to multiple hospital appointments in the article rings true. Halifax this week, Huddersfield next week. GP for pain relief. Podiatrist to sort out my feet. It’s not quite running around like a blue arsed fly, as I can’t really run, but it’s actually quite draining.
I live with guilt. Rationally this is nuts. I’m guilty of nothing. But I feel guilty for putting my family through this. I feel guilty for being part of Rachel’s life when this all started. I’m not racked with guilt in an extreme way. It’s not something that will lead me to bizarre decisions. But it’s there. And will never leave.
The article goes on to talk about Personal Independence Payments coming to an end. I’m supposedly entitled to this money until December 2019. And the car too. But a four month delay between benefit ending and being renewed? That is a truly awful system. I might not last that long, but the idea of fighting bureaucracy and losing access to a car for months when I’m at my most vulnerable is not appealing.
I often find it tough to fight my corner. I’ll go with the flow a lot of the time. Not always a bad thing as “the flow” is often well intentioned, but it’s not always personal or efficient. Weakened by this illness I find standing up for myself tough. I don’t think that will go away if I survive longer. I hope to join the 17,000 longer lasting advanced cancer sufferers next year. I hope the system is skewed more in my favour by then.
Here’s a link to the story on the BBC web site.