The NHS apologises for the cancellation of your operation this is due to a man who doesn’t like his nose – By Victoria Bartlett
This isn’t the blog I intended to write, that one was going to be on the resources available to people who suffer with Gastroparesis. But after my last blog on the fact that my Gastroparesis operation had been cancelled, I was finally contacted by the Queen Elizabeth Hospital Birmingham, who promised me a meeting with DrI and MrD to discuss taking things forward. Two weeks on and I still don’t even have a date for a meeting let alone the Gastric Pacemaker operation date. I appreciate there has been a bank holiday week but I have been told it will be four – six weeks before I can even have an appointment to see them.
Compare this to the Royal Free Hospital in London, where I could get an appointment with Dr Epstein a specialist in Gastric Pacemakers and probably have the operation within two weeks. This process has already stolen a year of my life, I had the funding for the procedure approved a year ago. So why do I have to go to London for an an operation I could have done in Birmingham? Why do I even have to wait six week for a meeting to even just discuss the procedure. Why wont someone just help me? I can’t eat, my NG tube doesn’t go far enough for me to ingest anything. I am basically living off tea, Lucozade and the odd sweet I can suck. I have given up taking laxatives because they don’t work. So now I have to literally dig waste out myself armed with a finger and a rubber glove (TMI sorry but this is my reality). I don’t go anywhere because the Morphine and other strong pain killers I am on make me doped me up. I can’t drive I am virtually housebound and I see no joy in life.
So I think you now-get the message I am not a happy, I am fed up of fighting for things that don’t happen, being let down by the NHS over and over again. And then to add a cherry to the proverbial cake, I read about a narcissistic, vain, shallow boy, who CONNED the NHS into giving him a nose job. We share the same NHS funding group Birmingham Cross Centre CCG. He pretended to cry at and lied at his appointment which he admitted to a red paper whom he sold his story to. He is new threatening to sue other newspapers who have called him the most vainest man in Britain. In my years of PR experience once you sell your story you’re fair game – well he wanted to be famous and he is now. And now there is a very stupid young woman who thinks she deserves a tummy tuck because she lost weight – just stop eating the wrong things!!!
I now realise that this is where I am going wrong. Forget about asking for a pacemaker to help with the nausea or a tube to help with feeding. All I have to do is pretend to cry say I find my Bowel and Colon deeply distressing, I cant stand to look at them and it is causing me incredible mental stress and I can’t live with them. Or perhaps I should let nature takes its course and gently let go while I wait for NHS bureaucracy to strangle me
Finally I have spoken a lot about Gastroparesis, but what does it mean to actually have it? I should like to share with you a poem I have written and dedicated for a wonderful small charity called GIFT (Gastroparesis & Intestinal Failure Trust)
The Song of Gastroparesis
“Well, well, but you look so well”,
Come try my life and live my hell.
Crave, crave, no hurt I crave,
I’m so fed up of seeming brave.
Day, day, I’m dazed each day,
Please help this ill to go away.
Meds, meds, they feed me meds,
They blur my day and mess my head.
Sharp, sharp, the pain is sharp,
It kills my light and brings the dark.
Sleep, sleep, there is no sleep,
I’m wide-awake and agony deep.
More, more I can take no more
How much else can I endure?
Pray, pray, for peace I pray,
To feel I’m normal – just one day.
How, how can you tell me how?
We need a cure – and we need it now.