Wednesday, 21 April 2010

a strange way of booking...

Well yesterday I was told, on ringing the Marsden, that they absolutely could not tell me any of my appointment times for the coming treatment until I go there on Friday for the first one (they were kind enough to give me a time for that one). The woman I spoke to explained that if they do it like this for everyone it works out fairer in the long run. That old first-come-first-serve treatment that some people delude themselves is fair rears its ugly head once again (although why this wouldn't mean my appointments were sorted out weeks ago I'm not sure). How, I asked politely, can it be that if you treat people the same you end up treating everyone fairly? Take someone who might have no schooltimes to work round, no work commitments (as I currently don't for example), and has a partner with a car who equally has no commitments. Couldn't that person actually be more flexible than someone on, say, hospital transport, or with work commitments that are urgent, or with childrens' schooltimes, or an elderly relative to look after who might have appointments of their own to be taken to, or who don't have a car or anyone to take them? (Or in my case who would simply like to repay the kindness of those of you who have agreed to give me a lift on some days by letting you know so that you don't have to blank out entire mornings in your diaries). Shouldn't the people with the least flexibility be given their appointments first?

The woman I spoke to didn't think so and point-blank refused to give me any times at all. It can't be the same woman I've just this minute spoken to (you didn't think I wouldn't phone back the next day with the same polite enquiry did you??!) who has just very kindly given them to me for Monday Tuesday and Wednesday without any fuss at all.

What a strange way of carrying on...

Sunday, 18 April 2010

and on to round 3

Had a lovely recuperative little break up in Constable country, although my body rebelled a bit against too much normality towards the end, but we did manage a 6-mile walk on one day. All had me feeling totally refreshed but unfortunately these effects remain somewhat transitory at the mo and I am now feeling pretty wiped out again after short bursts of energy. The main bugbears are this dreadful fingers-trapped-in-car-door thing which seems to have reached its zenith after this last chemo and continues to hamper my efforts in many annoying little ways (very painful to put any pressure on them - and on the toes too) and the sudden collapse in energy levels (and corresponding dip in spirits which leaves me a bit depressed sometimes). My eyebrows seem to be dropping out with a vengeance now so very little left - if you come across me and I look totally disinterested in everything you're saying, I'm not, I promise. I will try and compensate with some manic mouth-twitching or head-shaking. My tastebuds are not yet fully back to normal yet although they're getting there. There is some hair on my head but it's not the "baby hair" I was told would come first and then fall out ahead of the real hair - more like stuff that's been singed by getting too near to volcanic ash. Still, I'm sure it knows what it's doing.

Poor Mike is getting no letup it would seem. On the last couple of days away we discovered that one of his step-daughters Isla (29) has been diagnosed with lymphoma. All the precise details are not clear yet but she is undergoing the usual battery of tests to find out type, degree, spread etc. Really horrible for Mike, Oli (who has his A-levels coming up) and most of all Mike's ex-wife of course. Seems to be bloody everywhere at the moment.

The radiotherapy scan on the 12th was fine (apart from the fact it was my first ever visit to Sutton and the road I needed was closed without a single diversion sign to tell me where to go. Such fun! Road signs telling you the actual name of the road seem to be a thing of the past too - why is that?). Anyway they marked me up with where they want to fire at me so I now have 4 tiny tattoos on my torso. Radio starts this Friday 23rd - thanks to Jackie for getting people together to shuttle me back and forth, it really is so appreciated. I have driven around a little bit this week enjoying people's hospitality (thanks to Gill and Rog who may not have got away to China for five weeks and to Vivienne, Mary, Bernadette and gorgeous little James - it was lovely to see you all) and I think it has worsened the finger-end situation somewhat. So I probably wouldn't have been that keen on driving myself there and back. I have heard a variety of reports on the effects of the radiotherapy ranging across the whole tiredness spectrum from total wipeout to am I bovvered, so who knows where on that spectrum I shall fall. The most obvious other effect is burning to the area irradiated so presumably I shall become a little less capable over the five weeks and a while beyond. More cooking for the kids to do and salads the rest of the week I reckon!

And talking of the kids, Lucy has asked to put her own contribution on here so may I present my firstborn, Lucy Harris!:

Thanks Mum!! I asked to contribute to this blog because I thought it would be good to type about my views and thoughts, aswell as my mum. I have found the whole situation very strange and sometimes quite hard to deal with. But I really appreciate the help from everyone, espesially Mike, as it has really helped Mum, Gabriel and me, and I would like to say thank you for everything everyone has done. Due to all the help, I am not worried or upset about anything going on, and if I was then I would feel able to talk about it to Mum, Mike or Dad (or even Gabriel). We are able to talk about everything going on so openly to eachother, and I think that really helps. Mum told us recently that before she told us she had Cancer, she was planning not to tell us until we had settled down in our Dad's new house, but I am glad she didn't, because I think I would have known she was keeping something from us (and going to the hospital a lot!). I am also happy that, on this blog, she is able to joke about everything. I will be reading parts of this blog (if my mum allows me!) because I think I will find it very interesting to know how she feels about everything that is going on. I will also (again, if my mum allows me!) be writing more on this blog. Thanks again for all your help! :-)
Lucy x

Back to you, Mum!

That's all for now folks - there's sunshine to make the most of!