Well it's been sometime since I posted and I am really sorry but things have taken a rather speedy turn in the past weeks.
Firstly I must apologise up front or the numerous typos that will no doubtoururn up in this post. I am using a tablet from my hospital bed, swapping my glasses every 2 minutes as my eyes continually relax and retract due to my current medications....I am probably posting this on someone else's blog entirely.
I have pondered on what to base this post on but to be honest so much has happened recently that I think it could well be an eclectic group of thoughts put together and thrown around in Tom Cruise's cocktail shaker, for those who are older enough to remember.
So here I am on the renal ward at my local hospital watching the nurses and doctors whizz past as if gliding on petrol powered roller skates. We all know about the cuts to our wonderful NHS but it is not until you see the repercussions on a regular basis that you see how devasting it is...And understand why these fabulous role models who have dedicated their working lives to help others are leaving the profession. Take it from me, as someone who has lived in countries without the likes of the NHS, we are so incredibly lucky. I have never understood those who feel the need to say bad things about the establishment....try paying £40 just for a Drs appt and that was back in the 80's.
Anyway back to what's been going on....well firstly as previously said I am in hospital having my 6th stay on the ward for plasma exchange therapy. Due to bed shortages I am quite late coming in and unfortunately the impacts were quite severe with my health being effected. Typically, as per usual, the weather has decided to change. It has more Mediterranean feel to it. I am not lying when I say that every time I come in the weather is absolutely glorious. This time is made worse due to the fact the person next to me is too poorly to have her curtains drawn back so I am imagining the blue skies, the Brighton wheel you can see from the window and the wonderful pink sunsets that appear to blend from pink to purple to blue then grip to the very last fragments of daylight before giving into dark skies glittered by stars, fishing boats and promenade lamps.
I suppose I will need to get used to using my imagination over the next few months being the fact that in will be locked into an isolation room for several weeks waving at people through a glass divide. In think Mark is hoping it is sound proof too. I am a little nervous about it all. The treatment not only carries significantly risks but is a back breaking procedure that is and quote "is really quite pants"....the whole aesthetic part of it doesn't really bother me as I am reconciled with that part and actually find it exciting that I can take it as a chance to try out new things....actually thinking of doing an Annie Lennox if my hair grows back....trying new fashions etc....when you get to the stage I am at your thought process is " why then hell not?". The thing that I am really concerned about is internet shopping....holy cow!!!! It's like go into overdrive when I am on the wards...it is so bad that a new A&E Dr asked me what I was doing 4 hours into an attack the other night....you should have seen his face when I said shopping... I was on eBay lol....he said how strong i was and walked off laughing....this is the sort of thing that gets me through...highs and lows again. I think Mark will have to block everything when I go into for the transplant. I do consider myself to be incredibly fortunate that i have such a good support system there, the other night the A&E Consultant drew up in a wheelchair to shoot the breeze with me and my dad for half an hour.
Thank goodness we have things like skype so I can continue to bore my nearest and dearest. Boo has already set up the tablets and PCs at home. When did the Barbie's get replaced with phones, tablets and blooming loom bands???????
I haven't been in to work for a while. Unusually for me I took the news about the stem cell transplant quite badly and for the first time in four years hit a brick wall, literally. I just couldn't move forward. It's not that you stay constant, it's a very up and down. To the outside world you appear OK but inside your emotions are like an very tiny boat on a huge sea bobbing up and down clinging to the side hoping to make it to calmer waters.....well that is my life at the moment. Only today a fellow patient moved on leaving her children behind. Hearing them cry for their mummy (they were in their twenties and still called her this made it even more heartbreaking) brings home the enormity of what's around the corner. Because of this I have learnt to be honest, take time out and focus on what brings a smile. Last week I was driving Boo home when I told her to put her hand out of the window and the catch the breeze whilst we sang along to Taylor Swifts "22". When Jake walks into the kitchen I grab him for a cuddle, he hates it being a teenager but I love it. And that's what I mean....taking time to feel good. Continue to nag Mark or he would think there is something seriously wrong. He knows he is my rock and I couldn't even have started this journey without him.
So what happens over the next few weeks......well I'm now back at work, not today obviously, but feel well enough to partake in a few hours. Only with numerous coffee breaks thrown in of course. Apart from the usual trips to my second home I am trying to book in and arrange days and evenings with those who are important to me. I'm not saying that I am going to drift of this mortal coil but know it is an time to make sure that everyone I love knows it. Today has reiterated how important that is.
It will be a time of constant appointments, tests and the preparation phase before removal and harvesting and no Caz I do not need a tin of veg to take!!!! Then, as they say, the leap of faith. I tried to explain to Mark, it's like standing on the ledge of a building and once you've stepped off you can't go back. You must know you'll never going to fall upwards. Well its like that, once he bone marrow is gone there is only one direction you are going......a bit like giving birth lol....
On another note entirely my dad and I have been having some stonking eye spy competitions in resus....had him going for hours on the letters ahgd...antibacterial hand gel dispenser.....brilliant, even had the rest of the patients joining in....I like to think we are the entertainment. Boo recently did an collage of selfies with the nurses...
Both the children are coping in their own way...Jake looks at it like an opportunity, for instance tonight is the beginning of the World Cup so his mates are round the house, obviously Mum won't be there to police them all but Dad is there to join in.
Right for the serious stuff....I've had a lot of people ask me about the transplant and it is confusing. I'm having an autologous stem cell bone marrow transplant. I am only the second ever person to be given this treatment for my condition so percentages are shown do not reflect my situation but wikipedia have a really good page on it
http://en.m.wikipedia.org/wiki/Hematopoietic_stem_cell_transplantation
Give it a read, it is sort of makes sense.
So my friends into the battle we go again. I know I have many standing next to me both in flesh and the shadows......we will conquer what ever is thrown at us and as in the movie Braveheart raise our arms strongly in to the sky as one, throwing our stunning stilettoes to land delicately where they fall screaming at the top our voices "VENI, VIDI, VICI" (I came, I saw, I conquered)
Until next time my fellow fighters
Xxxxxxx
