So it's official - chemo is over! And - big drum roll - the line is out! Fresh from the operating theatre Rose is sitting up in bed tonight sucking on an ice lolly and watching Friends with no tube embedded in her chest for the first time in eight months. Have taken lots of before and after photos (because that's how sad this makes you) for anyone still wondering or caring what that was all about... Because of all the anti biotics still to come she has had to have two peripheral canulas put in each arm which are sore and uncomfortable and are going to make using her crutches interesting but she keeps looking happily at her naked little chest and I think she is really pleased to see the back of the cause of all these problems and infections. So are we! By the time we finally got to theatre this afternoon we were seriously considering just holding her down and pulling it out ourselves (how hard could it be?) but in the end we decided best to wait for the surgeon - fought urge to ask to keep it as a souvenir - and an hour later it was out.
Just in the nick of time really as her infection has been niggling its way through the 24/7 coverage of vancomycin with intermittent temperatures over the weekend and last night she spiked all the way up to 40 degrees. More anti biotics added in today as a result and hoping that after 48 hours more she will cool down, see off the infection and we can go HOME!! Trying not to give home too much top billing as haven't found the right moment to drop into conversation that we are going back to Stanmore on Monday morning for one week, two weeks, three weeks...who knows? With the line out we can throw her in their hydro pool and try to make some progress before we all lose momentum and lie down in a heap begging for a stay out of hospital card.
More chemo in any way shape or form was given the final veto by Maria from UCH backing up what Kathy had already decided and making me feel guilty for jumping at the chance of a second opinion - really disappointed if I'm honest which sounds bizarre but totally accept their decision and am moving on. How very rational of me. I'm really really trying...
So it's the last few days here - one whole hospital will be knocked out of our regime. Kings will still be our fall-back for infections - Rose will be immune suppressed for a year and any temperatures will have to be investigated immediately in hospital and as for Stanmore I have a feeling we'll be very regular visitors as in and out patients! But it's an end any minute to the Marsden, to line infections, to chemo, to neutropenia, to transfusions, to days and days of sickness and illness -I can't really take it in yet but in theory two more nights here and we're out!
What will I miss? The call bell mainly I expect - the blanket coverage of nursing and medical staff to walk us through every daily drama is going to be very hard to do without as we've not been home very much (I don't know if I've mentioned that) to do it by ourselves! Other parents have told us it's like taking a newborn baby home -what happens when she's hot and sick and complains of pain and the only night nurse I can find is us?! Definitely the infinite patience of Michelle, Rose's physio, who takes all the attitude and bad mood in her stride - and is really patient with Rose too... The play team and teachers who make the lives of an endlessly changing cast of children interesting and stimulating and fun when they are well and bring toys and magazines to their beds when they are not, Shirley the ward cook who takes such pride in tempting 15 children with zero appetite to eat three times a day ('Rose, I like my job and if you don't start eating I might lose it...'), the nurses etc. Probably mainly we will miss the support of other families walking our walk - or a variation of our walk - who understand the worry and isolation without words as well as literally understanding what we are talking about most of the time! How will we cope back in a world where every conversation doesn't begin and end with blood results, investigations, transfusions and chemo? We need a crash course in small talk and interesting things that have happened this year...
Anyway am in danger of getting nostalgic about a hospital I hope Rose never has to come back to for anything other than routine check-ups so I will stop. The Marsden, the 11th floor at UCH, they have both been windows on a world we never knew existed but we know it now very well and we will never, can never, go back to the way we lived our lives before - whatever the outcome for Rose. Every monthly check up will we hope take us a step further away from all this, a step nearer cure for Rose - and all the children we have come to know and care about this year - and a small step closer to the life we lived before.
