This year I've been determined to get into the Christmas spirit. Last year, we were beyond skint (Scottish for no money!) Living off one wage since Isla's diagnosis, the extra money involved in travelling back and forth to hospital, paying for a mortgage on a house we were no longer living in and we were trying to decorate ready to sell.
Christmas the year before was spent in the high dependency ward of the children's hospital watching Isla recover from surgery to remove her primary tumour. The year before that, I was the knackered mum of three children, one just seven weeks old.
Isla is old enough this year to know what's happening and we can afford presents too. With last weeks scans being cancelled and rescheduled for next week, I have had a mini panic about getting the house cleaned and everything else organised for Christmas before hospital.
I think what has really been happening is a need to organise things within my control! I have been stressing far too much about the state of the house, where things should go and getting annoyed with whoever crosses my path (or makes a mess) while doing so. In truth I have been replaced by a nagging woman and I don't recognise her, really dislike her, which in turn is stressing me out more. Mind you having a highly strung teenage daughter doesn't help.
Last week we were supposed to be in hospital most of the week for routine scans so by now I might have an idea about the results. The MRI and MIBG was cancelled, as there was no anaesthetist available for the MRI and the hospital wanted the scans done at the same time to compare images as they're so complicated as her liver imaging is unusual.
We did go to the hospital on Friday to visit the liver professor and have an ultrasound. The liver professor had the report from an ultrasound 3 months previous and blood test results taken the day before. Isla's bloods continue to be normal, a positive sign. The prof also seemed pleased with Isla's general health and development. He did talk to us about future plans, which I must admit to taking as cup half empty. Maybe I'm just accepting that Isla's health in the future might not be as good as I'd like to think it will be. The thought of her being sick again scares me so much.
The prof wants to review Isla in a years time, if Isla's spleen is still the same size and her liver enlarged then she will have a needle liver biopsy and endoscopy to assess damage and see if that means the damage is permanent and what implications that may have for her future. She still has portal hypertension and varisces almost a year after treatment, this began after her first course of chemotherapy in May 2009, two and a half years ago. She lives with these absolutely normally just now, but if they stay, could mean more complications in the future.
I think I always focus my worries on 'what if the cancer came back and what that would mean' and ignore other possible health conditions. The fact that Isla is mostly fit and well and acting like any other 3 year old helps me stay positive, but helps me ignore the fear of bad health worries. I need to stay positive though and deal with whatever happens when/if it happens.
While in the hospital I popped into the charity office to make a donation for their Christmas family fund, which supports the families who have to spend Christmas in hospital as we did in 2009, I did this instead of giving Christmas cards this year.
The last month has seen Isla have a flu type illness followed by a cold. Friday night after the hospital Isla spiked a temperature which worried me that she was getting flu again, thankfully she didn't get a high temperature again over the weekend but I have been concerned that she was getting worse so after a phone call to the GP, she agreed to give Isla the once over. Thankfully Isla's chest was clear and she wowed the GP with her skills as a patient for a 3 year old! And of course since the GP visit Isla has appeared better although her appetite is still really poor. Hopefully tomorrow will see her improve even more and eat better.
Back to Christmas - tomorrow, we fly to London as Wednesday we have been invited to SSAFA annual Christmas Carol Concert at the Guards Chapel, Wellington Barracks. Ross will be giving a little speech, with the opportunity to publicly thank SSAFA for the support we received during Isla's illness. We will be taking the opportunity to see the Christmas lights in London, visit Hamleys toy store and the London Aquarium as well, this will definately put me in the Christmas spirit :)
Of course the anxiety about the scans is still with me, so officially given up on the diet until the New Year. Another 3lbs up - hey ho!
