When I said I was praying to the god of chemo to get us out by Christmas I really didn't mean for him to start cancelling whole doses of chemo altogether - still struggling to come to terms with the fact that we have one drug less in our armoury as a result of Rose's wonky heart and still hoping Kathy will come up with an alternative wonder drug on Friday. Likely? Probably not. In the meantime we have skipped ahead to the second half of the cycle and two weeks of methotrexate the first of which Rose had over the weekend - she coped really well this time and we stayed on top of the sickness and the headache. We're getting really good at chemo just as we come to our last cycle. Eight months in and we know the exact combination of anti sickness drugs that will work for Rose, when to give them and how long for - if only the chemo came with a personalised instruction manual you could save so much hassle and so much time throwing up! Not that changing sheets three times a night isn't fun but the novelty does wear off after a while.
We whiled away the weekend with lots of lovely visits from lovely people bringing wine and cake (can cope so much better with stress while ramming cream cakes in my mouth) MORE presents for Rose and lots of distraction for both of us. We had a top girls night in on Saturday with Strictly and X Factor (what is going on there? I am going to have to start voting to counter the crazy British public who are voting off people who can sing and keeping DANIEL??!!). Strongly feel that as long as John Sergeant, Brucie and Cheryl Cole are out there on a Saturday night nothing too bad can happen in the world. Reality TV has been a significant theme of this year - from Nancy to Strictly and X Factor we have watched and laughed and felt a part of the nation's normal Saturday nights and it has been a great marker of time. Weeks ticked off, cycles begun and finished, series watched, Nancies found, dancers dancing... The ever-optimistic physios have set Rose a goal of walking without crutches by the final of Strictly - seemed almost possible when they set it in September but we're not so confident now!
Simon and I have been banned from Marsden physio sessons - yay! - which are now master-minded by the dynamic duo Michelle (physio) and Sam (child psychologist). Tempted to ask them if they will move in with us for six months post chemo...or even better if Rose could move in with one of them. We are meant to be at Stanmore now but have crashed through that admission as a result of the ever-present line infection and the accompanying ever-present bag of anti biotics dripping into her. The anti biotics are bizarrely reassuring - for the first time I'm not constantly watching for a temperature spike. 24/7 anti biotics means she is already being treated for anything she could possibly pick up - we had our first ever Hickman line bleed out over the weekend when the connector to the chemo came loose and with no pressure in the line she started to bleed back down her line. Minor drama but blood cultures taken immediately in case while the line was open something had got in. Who cares? She's already on the heaviest duty anti biotics she could have - at Kings they call vancomycin iv domestos!
So another week begun at the Marsden - she has cleared her methotrexate and is now just there till the next one. In hospital terms her week looks good - apart from physio, a couple of routine scans and tests and a crazy amount of anti biotics she should stay reasonably well till the next chemo goes up on Friday. There are parties and puppet shows lined up as well as more visitors - little does she know I have been to her school today and picked up a great big folder of WORK which looks like it will keep her pretty busy. Rose has fallen so far behind with her schoolwork and I long for the day when this is important again - for us to fall back into our roles again of schoolgirl and mother not patient and carer. Going back to her school was a big thing for me - the last time I was there was 20th March when I picked her up at 3.30 just like every other day not knowing that less than 24 hours later we would stand in a side room at Kings being told she had primary bone cancer. I'm glad I've done it and can look forward now to the next time I go when hopefully I will have Rose with me and she will be visiting her class, her friends, the new playground and her old life.
