I can’t believe my last post on here was written in August 2014. Blimey! I was in hospital, I was having trouble with my “miracle bowel” and getting used to life with a stoma and a colostomy. Did the tea lady ever give me that extra biscuit? We’ve got some catching up to do!
So , why have I left it so long? Various reasons really. I’ve had to get used to a new “normal”. Also everywhere you looked last year there seemed to be people telling their stories about their cancer in ways that humbled me. Stephen Sutton for instance. A 19 year old bloke who raised over £3.2 million for Teenage Cancer Trust before we lost him in May. I think we’d have got on. I particularly liked his reaction to him being “trolled” for not dying when he posted what he thought would be his last message then got discharged from hospital. “Sorry to disappoint you!”, he fired back. “So you know, I still have my cancer and it’s still incurable, if that makes you feel less “duped”. x.” It’s the cheeky kiss that does it.
The person who really resonated though, same gender, little bit older than me, cancer in the same general embarrassing area, same gravy making skills was Lynda Bellingham. A family member called me on the morning of 19th October and I couldn’t speak for crying. Her experience seemed far too close for comfort to me. Recently decided to stop treatment? Yep. Dogged determination to celebrate Christmas 2015? Yep but because I can’t help being superstitious and believing in “bad fairies” who listen if you get too cocky I was pretty quiet about it. She published her book and appeared on TV, drawn, grey haired, thin but sparkly-eyed and then … she was gone. It terrified me. Luckily, I have fantastic back up; my Palliative Nurse and I were able to discuss how my situation was different to hers and I was able to see her final Oxo advert through slightly tear blurred eyes but for HER not for me.
Let me tell you about my back up then. It’s all change here. I continue to be “Ripley in -Aliens- 2-like” by having my own team of highly trained marines although my lot are slightly less sweary than hers. The one I call and things just happen so I particularly wanted to tell you about is my Palliative Care nurse from the local hospice. I haven’t asked permission to name her, nor do I think its appropriate, so let’s call her … I know, let’s stick with the Aliens film theme and call her Bishop. Bishop has been through this with other people loads of times, is probably going through it with quite a few right now and yet when she’s in my living room or on the end of the phone, she has that capacity to make me feel there’s only me. She’s seen me through the worst this disease has thrown at me so far and will continue to do so with calm gentleness. She left me with a couple of forms to complete and didn’t mind that, like starting the blog again, its taken me months to do. I’ll share them if I may. There are two. Preferred Priorities for Care which has questions as simple as “Where would you like to be cared for in the future?” and the, to my mind bordering on the metaphysical, “What are your preferences and priorities for your future care?” Try pretending to be in my position, or perhaps you’re reading this because you already are, and working out what that actually means. The other, with the lovely clouds on the cover, is called Planning for your future care. (Advance Care Planning). I found this more difficult. You have to face stuff that you don’t really want to. What treatments would I refuse for instance? If I tick the box “I do not want to be artificially fed or hydrated” will I at some point look plaintively at a bottle of water while a health professional shrugs and jerks a thumb at my signed form? Well, no, of course not but it seems to me that the form is trying very hard to cover all the bases in a very surreal situation.
I’ve got loads more to tell you, dear Reader, but I think I’ll end for now and then the plan is to do a weekly blog. Yes I know I’ve said that before. You’ll just have to trust me.