I know it's been a while since I last posted on this blog and time has escaped me once again.
The summer holidays are all but over. Our minds are turning to jumpers, school uniforms and nights closing with the fire whispering in the corner. I love this time of year. Mentally i start planning Halloween and Guy Fawkes night. Both are an exclude for a party with close friends and family. My mind is turning to it even earlier than usual with the stem cell ttransplant looming. It looks like I may miss both of these dates as well as the possibility of being in hospital for Christmas. This is really hard for me as it has always been a big celebration.
Unfortunately the transplant was delayed due to a change in the funding criteria....another bureaucratic nightmare, it seems if you have a rare condition funding for extreme treatment is difficult to get......dont get me started on this as I have loudly backed the ALS challenges for that precise reason. The transplant team are confident the funding will beforthcoming as I am their first for my condition.
So here I am bags packed ready to go but in the meantime my kitchen looks like it out of a Nanny McPhee scene.....I have s!ow cookers bubbling, cake mixers whisking, soupmakers chopping whilst reading cake decoration books. Don't get me wrong, I am a terrible cook and even worse at icing cakes. I find any kitchen activity difficult and tiring hence all my super duper machines. It doesn't stop me reminiscing about the steamed up kitchens of my childhood. One whiff of cottage pie and I am back there hanging off my Mum's or Nan's shoulder asking how much longer for the umpteenth time. I'm sure some of you have a similar memory. Droplets of water running down the window pane , this is before double glazing, and the kitchen being the warmest room with a hub of conversation and activity, again before central heating.
I seem to be dipping into many memories from my childhood at the moment. Only yesterday I was telling Jake about how I used to liein bed listening to the re order player booming out Blondie downstairs or how Sunday evenings were a bath with the "top 40" followed by steaming hot crumpets with butter running down your fingers watching the "Holiday" programme......family times that seem to be missing from today's world.
Health wise I am deteriorating but still fighting. My attacks are still every 3-5 days but have strengthened in intensity. I don't have much energy so sleep a lot whilst trying to maintain normality for Jake and Boo. They have had a brilliant summer at the beach, skate park, with friends, camping, parties and to top it they are off to Gran Canaria with my parents next week. It is been delightful to see them having a normal summer.
Jake was 15 last week and is 5ft 10 so is grown up. This means we tend to laugh more and boy does he make me laugh.....both he and boo are natural born comics. They share the same sense of humour as me and Mark.
I'm still not a!lowed to work but luckily I have my Mum, Philly and Caz who keep me entertained. I have missed some important events this Summer I apologize to Lisa and Lucy for missing your weddings. Yesterday I made it to the beautiful Amelia's christening. Unfortunately my friends in green were needed. A big high 5 to Philly for keeping calm and administering my emergency drugs...you're a star...
So what next.......I have several appointments in the next fortnight. Some scary, some routine..all essential. I will continue to keep sane and try to remain up beat and I am going to buy 3 huge celebration cakes....one for the Hove paramedic base, one for RSCH resus and A&E majors team and one for my family and friends....why you ask?????? well sometime this week we will celebrate my 200th visit to the A&E. I say visit but really mean a rush bathed in blue flashing lights with lots of laughter cutting through the worry...
I say celebrate because to reach 200 means I am still here.....without the kindness, patience and most of all humour of all of those involved I don't think I would have coped....I consider myself to be extreme!y lucky.
On that note I'm signing off
Until next time
Sxxx/x
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