Friday, 6 September 2013

No way forward

I didn't want to get out of bed yesterday morning, my body hurt and my swollen tummy ached due to the size of it and sleeping on my side must have put strain on the muscles.  The difference with swelling and fat on the stomach is that fluid is inside the body, protecting the organs inside the rib cage and pelvic area whereas fat from over eating layers on the exterior of the body.  Although still heavy it doesn't put strain on muscles etc as it isn't forcing muscles, bones and organs out wards.

You know those mirrors you would stand in front of at a circus or fair, well I have brought that back with me, my top is thin, muscle waste etc due to the tablets to lose the fluid then this great round middle bit.  I feel embarrassed to go out and show myself. Plus what can I wear, size 14 will fit the waist but nowhere else!
I have noticed that hubby uses a lot of emotional strength when I am ill, the moment I start to feel human he needs to go and rest.  He usually sleeps for a few good hours to charge his batteries and maybe escape from this dreadful cancer.

We talked about end of life a couple of days ago.   He knows how I feel and will try and look after me at home until the end or for as long as possible.  Our local hospice, St Teresa's, only has a couple of rooms and I really don't want to be in one, nor do I wish to spend any time in hospital.  We talked about the funeral and he wants me to organise it but he doesn't want a long drawn out affair as he doesn't want to sit through it.  I said this is my farewell but I do understand his point.  I will have a C of E service in the church and a Spiritualist send off in the crematorium.  As for my ashes, I have no idea.  We still have Jagars and Tykes ashes in the Black and White room on the dresser.  This isn't an easy subject to talk about but we have done it.  I am frightened, I can't deny it.  Many doctors will not touch a patient who presents themselves with ascities when they have already been diagnosed with cancer, I already had problems with getting doctors and that was before this.

So last night I went along to see Dr Vish to see if they are draining my stomach today.  What a nightmare, I thought private was easy but hey I seriously wish we lived in the USA right now.  Dr Dean will not drain this morning, he feels that I need a permanent drain as the fluid returned so fast.  No one is seeing the reason here, I flew!  Flying, as per info on website, can increase fluid because of the drop of O2.  Even if he wants a drain in next week I need the pressure removing, even if it is just 2 litres!
Dr Vish said at the end of the day A&E have to treat me, therefore why did I come home early?  I said because I knew Dr Dean only worked Friday's.  If I went to A&E on a Saturday nothing would be done till at least Monday then they would do as before and go blindly in!  He told me private doesn't work like I thought, you can't just ring up and expect things to be done.  Years ago you could just phone the specialist and he would do everything possible to see you and help.  Seems now they want all the high fees but want to be treated as on the NHS and see you only via long drawn out appointment making.
Nothing was said about the bile or what I can do to help my other stomach problems.  Dr Vish did tell me I wasn't a case he would normally deal with but he had felt sorry for me.  He then went on to mention palliative care and having an MDT behind me.  Why can't anyone stop and listen, I keep telling them all I haven't got one - yes I know I need one but no one wants me!
When I was handed over from Dr Edwards in 09 from Sheffield to Darlington the chest physician didn't want to know me.  We went to see him at Darlington Memorial 6 weeks after surgery, I was still quite poorly.  We had sat in a waiting room for 45 minutes with everyone coughing (it was Feb) and in the end hubby said to the nurse I'm taking my wife home if he doesn't see us shortly.  The doc hadn't even started his appointments.  Anyway he saw me, asked my journey then asked what I expected him to do?  I'm not a doctor so how would I know!  Needless to say he never sent any more appointments out.  My GP then thought I could retry Dr A at Bishop but that didn't work out either, he wasn't comfortable with my case and wished me luck.  My private oncologist (from 07) told me he was no longer doing private patients and I needed to find an NHS one, that was  early 2011, when the cancer had returned. 
I had to find an oncologist and here is where I am now.  My new oncologist (Dr P)  promised in Feb 13 he would re challenge after the chemo in Nov 12 because it had worked.  When I went to see him last time in July with my big stomach he said palliative only.  Quality over quantity.  Well let me tell you my friends this is not quality. 
Dr Vish told me that a good palliative doctor would be able to sort out all my stomach issues and pain issues.  I wish I could believe that.  I always thought you had a specialist who looked at the whole picture then decided who needed to do what, obviously I am wrong here too. 
Now all my appointments etc that have been staged to see specialists will all need to be changed again, this is the 3rd time.  My scan is due on Tuesday but that will need to change as it seems I will be in James Cook, not that I have any details or even confirmation.  My appointment with Prof Dean I cannot change again and I really want to see Dr Peter S.
My other concerns are what if they offer chemo but only to be done locally at my own hospital, who will administer it?
I am tired of fighting bureaucracy as well as a terminal cancer.  If my stomach was ok, and by that I mean the fluid and the bile, I would be having the time of my life.  Ok I have a few more pains but they aren't big (unless the brain can't handle them at the moment) and morphine can sort.
Until they or a member of their family are struck down with something that is so uncomfortable or life threatening they don't realise what we go through.  I bet if their wife suddenly had a large stomach full of fluid that made sleeping hard because of the weight, eating difficult because they can't swallow, energy of a slug and feeling generally unwell, they would be knocking down doors regardless of the appointment system or what is allowable. 
When my lung kept filling up back in 03/04 I had a walk in appointment with the radiologist at Stockton. All I needed to do was ring up and I would be seen, that was private, so what's changed? 
So it's 8.40 and I can truly say I doubt anyone will be draining some fluid this morning.  I know I can go to A&E but why put myself through them punching needles in blindly and not withdrawing anything.  Also I would probably have a 2 hour wait in A&E before being seen then sitting on a ward for hours before they do anything.  If I get worse then I may have to do this, maybe I will arrive as they are sending out my outpatients appointment from my visit on July 23.
On a good theme, if you can find any, three sets of good news from fellow bloggers.  Amanda's husband is doing well, Steve has just had another good scan result, Mavis is doing well on her chemo.  I truly wish I was in that category but I am so pleased for them.  Life needs an uplift and that is the best news anyone can have.
My phone hasn't rang so I will presume I will be suffering for the rest of the weekend.  I hope your day isn't as dark and cloudy as the sky outside my office window.

1 comment:

Amanda said...

Jan am so sorry to hear of your troubles not just with meso but with the healthcare service. Before we managed to move to London specialists It was all very hit and miss. We got one leaflet and a suggest you get your affairs in order and that was about it.

I can't beliieve it is so disjointed where you are. Ithe major thing that made the difference for us was getting to deal with not just a specialist doctor but also specialist nurses, who ahve been excellent.

I know there is a north south economic divide but hopefully not a healthcare one. Can you speak to mesothelioma uk and get their support and suggestions?