It is freezing here! Absolutely no sign of central heating yet which for a hospital is most unusual as they are generally run at furnace like temperatures and we are slowly turning hypothermic...Rose is in a room with a door to the outside which I can get my whole hand underneath! I can only imagine the head of maintenance is a man very like the one I am married to who looks scandalised at the suggestion of the heating going on - anyway it's not been the worst of the week and only springs to mind as I am literally blowing on my fingers to type. I am armed and ready for the night - five blankets on my bed and two on top of Rose's duvet. I did suggest hopefully that I could slip into her deluxe hospital bed next to her but she's not having any of that!
So - we're still here then. Came in for five days two weeks ago and still no chemo, still febrile, still growing a bug in the lab from her hickman line despite three of the big gun anti-biotics. 'Surprising and disappointing' was the medical line on the situation this morning. The mastery of understatement - surprised and disappointed when I find the children have finished the quality street not words that spring to mind in this situation but there you go. So, third hickman line infection in twelve weeks and the line will have to come out in theatre on Tuesday if she doesn't get a negative blood culture over the weekend. More worry for Rose about another procedure, about another line having to go in, about an infection that could travel to her leg etc etc all discussed freely and blithely in front of her until she bursts into tears - sometimes I long to press the mute button on these doctors.
They also ramped up the stress levels this week by threatening daily to remove us to Kings as since she wasn't well enough for chemo she was effectively bed-blocking - we've both found that really stressful as it would be hard to think of a patient in a more woeful state than Rose and yet it comes down not to a duty of care from the Marsden to keep her stable and secure until fit for chemo but just to free up her bed space. Really depressing - Simon stood firm and confronted his way through the first couple of days and I have tried to lay low for the last couple hoping that now we are hitting the weekend the pressure on beds will lessen and that every day will take Rose nearer being well enough to have her chemo. But it definitely destabilises us all not knowing from one day to the next where Rose will be - the danger we know here is that if you do leave it's then harder to get back in as the pressure on beds is high. It's a one stop chemo shop here, conveyor belt cancer treatment and if you're not up for it you just have to move on down the line!
So we have crashed through our next admission to Stanmore due for Monday morning - and only remembered today to tell them - so hoping they will book her back in for whenever we get out of here as all physio and rehab goes by the board when she is feeling ill. Walking, straightening, exercising are all tough when you feel dreadful and any suggestion to do them met with stiff resistance! She has pretty much curled up and watched wall to wall tv this week while attached almost continually to infusions of anti biotics which we hope are doing their thing. We have had some morale-boosting visits this week which keep Simon and I from going totally insane and gives Rose much needed relief from being with just us!
Julia is doing her run on Sunday in Greenwich and I had half hoped until the middle of the week that we might make it over there to at least soak up some atmosphere and keep in text with the runners but sadly not. We will be thinking of them all (Rose was wondering if it would be on the tv!) and the masses of money they have raised for Bone Cancer Research Trust and sending them all our luck and love - still not too late to sponsor them! www.justgiving.com/run-for-rose
Sorry had to end on a fundraising note!!
