Nurse Specialist My Arse

12 03 2013

Well, a bit of a start to the week for us two!!! Alistair took a bit of a turn for the worst on Sunday morning suffering acute abdominal pain, cause of which is unknown, but as I was mentioning to someone yesterday, when you have a curve ball diagnosis any little twinge plays a little bit of havoc with your mind if you let it. I have nursed him through with all sorts of things all of which at the very least will do no harm and hopefully will at least bring a little relief.

The pain had eased a little by yesterday morning which is good as we had our first appointment with our Homeopathic consultant in London which we have been waiting for since October. And what a refreshingly wonderful NHS experience it was at the London Hospital of Integrative Medicine,not like being at an NHS place at all really. Calm, friendly, green plants everywhere and an excellent consultation with our Homeopathic Doctor who encouraged us, listened really carefully, took a full history, respected our beliefs and prescribed some Mistletoe (purported to have good results) and also some Conium Maculatum (that which killed Socrates no less, good for urinary problems and tumours, although it does also sound like a Harry Potter spell)! The whole experience was very positive and left us feeling totally taken care of.

Ah, the juxtaposition with todays sad and woefully sorry state of affairs at the UCHL! After a 10 week wait for todays urgent referral to see the Urology Consultant, we end up with the fucking monkey not the organ grinder! Please, don’t get me wrong I have no problem seeing a nurse specialist rather than a consultant if , they are proficient at basic nursing skills, have a kind and compassionate bedside manner and actually listen to you before passing judgement. His opening statement was “why are you here” (a full set of notes laid out in front of him), “I have cancer as you know” was Alistair’s reply and then ” I have an acute abdominal pain since sunday, can’t pee, haven’t had a shit since sunday and obviously need to find out whats going on and what to do”. At that point the guy ignored the acute pain part, didn’t even palpate his abdomen ¬†and launched into how he had read Alistair’s notes and therefor knew what a challenge he was going to be and spent 20 minutes justifying his own belief in Radiation, Chemotherapy and Hormone therapy.

The good news, he is suggesting a partial resection of the prosate (fine by Alistair) that will help him to be able to pee again and its OK because he will only have to wait 6 MONTHS for an appointment!!!!!!! Oh and a month waiting list for an ultrasound, bone scan and a flexible cystoscopy to see whats blocking the urethra.

And now the ‘piece de resistance’, “What can you do or prescribe for the acute pain that my husband has been in since sunday’ I asked……”`What Pain” was his reply and then… go to your GP!!!! Do you know, I actually packed an overnight bag for Alistair in case they decided it might be best to keep him in for a few days seeing as he was in so much pain, silly me, I must have been watching too much Call the Midwife!

Suffice to say we felt pretty low on our journey home.

So where does that leave us, still very focused on our alternative care for Alistair’s needs, I am on a mission to get hold of the cannabis oil (feel free to private message me if you can help), we have our homeopath and we have our own GP who actually has become somewhat of an ally for Alistair. I think the message that we need people to hear is that we are all entitled to our own views and opinions and we are still also entitled to be treated civilly and fairly when we are in the NHS system. It has to be OK for people to say no to stuff, it has to be OK for us to deal with this in a way that honours our own beliefs. Its a tough journey sometimes but if I have learnt anything at all today it is that it is so important to really listen to what people are saying, I mean really listen and really hear. It makes such a difference when you are truly heard.

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