11. Countdown to Cycle 2

Just 2 days to go until I’m back in hospital to start Cycle 2, and I’m beginning to feel like an old-timer :-). At least I know what to take in with me now as having your own things around you really helps. It sounds a bit like the game I used to play with my sons, I went on a Picnic and I Took….So this is, I Went into Hospital and I Took: a duvet in a bright pink cover (they really don’t have blankets, more like thick sheets which don’t keep you warm), my own (pink) towels (theirs are horrible and scratchy), my own mug – pink, obviously (no more negotiations about tiny green cup or tiny white mug for me!), apples (they aren’t big on fruit in there), tea bags (herbal tea also isn’t on the menu), black and pink cat slippers (a present from Stephen and they make everyone chuckle which is lovely), and obvious things like the iPod, Kindle, proper books and laptop. I’d really love to take the cafetiere too but apart from the fact I’m probably not allowed near a kettle for health and safety reasons, there is a real danger I’d end up competing with Dot and that would be a really Bad Thing. In short I need a train of Sherpas following me into the ward, but it has to be done.

And clothes. I like to get up and dressed every day as I don’t feel I represent myself very well when clad in fluffy pyjamas (usually pink) and you never know when you might have to have a serious conversation with the consultant. Honestly though, things like that do matter. It is really hard to fully participate in a ward round with a whole bunch of medical people around your bed and retain any sense of posture when they are in day clothes and you aren’t. Especially as I want to talk to them about drug trials. Although the staff get you to sign consent forms and tell you all about the treatment you will be having and encourage you to ask questions, they don’t REALLY want you to ask big questions like, do I really have to take this? Or anything that veers away from the straight and narrow. The understanding is very much that they have the answers and you go in there to be treated and not ask serious questions.  I don’t deny for a moment that they most probably do have the answers and I am reliant on them to get well. However, I do need to be asking some questions. It seems there are two new drugs being trialled in the US and Germany which are proving to be effective, and with a lot less toxicity. At the moment they are only being used on people who have relapsed after a complete cycle of chemo and for whom it won’t work a second time. I can understand those patients being a priority, but I would also like to see whether I can get my name put forward if there are trials on new cases. I mentioned a few blogs back that Mantle Cell Lymphoma is on the increase, which from my point of view is good news as more research is being directed at understanding and treating it, and it seems that for the first time there may actually be a cure on the horizon.

Hospital does really weird things to your thought processes and I can see how easy it would be to become institutionalised. As someone said to me, you go in there and are not expected to do anything in return. In fact there isn’t anything you can do as it is all set up to look after you and to not expect anything back, even if you are completely able-bodied a lot of the time, like in the cancer ward. That could be quite an attractive short-term proposition if it wasn’t for the food. I jest of course. You could theoretically spend the whole day looking at the wall and nobody would do much to stop you, and that is incredibly bad for the spirit, especially as the hospital got massive discount on that horrible eau de nils green colour. We are allowed to drag our drips around even as far as the shop, so I might do that just for a change of scenery and for a laugh at some point, although I do take a lot of things in to help keep boredom at bay. Something I am really enjoying is Zentangle. Have you heard of it? Stephen had a review copy of a Zentangle book come into the office and I was immediately hooked. I really am not in the slightest bit artistic. Even my stick men don’t look like stick men and pre-school children can turn out far better paintings than I. This has always frustrated me as the yearning was there but the talent clearly wasn’t. Look it up – it is meditation and art in partnership. It is in fact the kind of doodles we all did at school except with a posh name and a whole lot of marketing and money behind it – but one little book and you are away. I’ll put one of mine up when I can take a decent picture. But I have to say you can get lost in it for hours, which is a very useful thing for hospital stays, and it really does free your mind. You build it up one tiny section at a time with the end result being something really quite impressive. Then you look at it and think ‘Wow, I really can draw!’. Of course I still can’t draw, but it looks nice and it is very good for the soul.

I did of course miss something off the list – hats. Readers of the last blog will realise I now have a splendid selection of headwear to choose from, which is just as well as my head really does get cold now. I didn’t realise how much my hair was keeping me warm! I’ve had a few days now of decreasing coverage – once we shaved it all off it was easier to manage, but even the tiny little bits are falling out now and soon I will be as bald and shiny as an archetypal little alien. Not a teeny hair in sight. So I will need hats in hospital. Judy came to see us on Saturday and as well as bringing a ton of pomegranates and dragon fruit (more of that in a moment) she also took photos of me and Stephen in a couple of the hats for your delectation and delight. Stephen was game enough to wear a fetching black and pink number. I know it is important for partners to be supportive but I think he excelled himself on this occasion!

         

Dragon fruit, known also as Pitaya, is apparently packed with antioxidants and Vitamin C and the tiny seeds are rich in Omega 3. It tastes a bit like kiwi fruit but it is a lot more exciting to look at. The outside is brilliantly red and exotic, while the inside resembles weird grey fleckled polystyrene. Would certainly get the conversation going around the dining room table! Many thanks to Morrisons and Judy for supplying us with it. I could also have taken some pictures of the kitchen after we juiced some of the pomegranates. It honestly looked like the Chainsaw Massacre. Those little bits of pomegranate fruit really don’t want to come out, and to turn them into juice is truly a labour of love. Michele suggested in a comment on an earlier blog that I embrace the myth of Persephone and her trip to the Underworld as a meditative approach to the process. I think I might need that to stay calm!

So tomorrow I visit the lovely people on Ward 10 for more bloodletting and a pre-admission check then its all systems go on Thursday. I would imagine I’ll be back with a blog around Saturday when the tedium of being attached to a drip is really beginning to wear a bit thin. I’ll be sending your regards to Dot :-)

Good night

Margaret xx