Monday, 23 September 2013

Please give me relief

The sun was out from 12 to 4 yesterday and hubby sat me out in the garden.  I couldn't get comfortable whether I reclined or sat up.  I knew lying down was not going to be ok because the weight of my insides is too heavy now.  My insides ache from all the tablets I am taking, I guess my lining of my gut has been irritated with them as well as the meso.  I can feel a hardness just left of my belly button and under a mole that I have had for years.  Each time the stomach has swelled this has felt solid, like a piece of shrapnel lodged deep inside.
I managed a little bit of Sunday Lunch and sat like a Sumo wrestler on the sofa all night watching tv until it was bed time.  Several times I had to keep seeking dry areas of the bedding as my body soaked the bed in sweat, the pillows soaking and offering no comfort for my head.  The pain from the stomach waking me every hour or so.  I took extra morphine in the hope of relief but it didn't work just made my stomach tract ache from more drugs. 
My fear is that I wouldn't last long, tomorrow I need to go to Leicester but what if Dr Dean can't insert a drain during the next couple of days, I can't cope.  I could walk into A&E but which hospital and would they fit a permanent good drain if it was A&E or just anything that they could get hold of.  What if I can't make tomorrow?  The way I feel this morning I doubt I could sit in the car to get to work let alone 2 plus hours down the motorway and back
Whatever is happening is happening fast, I have heard people say meso can change overnight and to be fair I have witnessed it change in others but not this fast?  I cut the diclofenac back yesterday to just one tablet, thinking these were causing the sweats but nothing changed. 
In 2004 I was put on steroids to try and stop the fluid accumulating in my lung, the only thing they did for me was put me in bed for a week with a migraine from hell.  I remember Gary had to change the bed 3 times a day to keep up with the sweat I was pumping out.  Am I going to relive the events of 2004, although these came to an end in the August when I was opened up and the cancer removed.  I can't see anyone going into my stomach and removing the tumours that have somehow managed to slip through the diaphragm and get there.  Or risking opening the right lung to take out a couple.  But it doesn't seem the lungs are what are causing me pain its this bloody stomach.  How didn't I realise it was happening, how could I miss such an important change in my body until it was too late.
The sun is shining outside, it feels like an early summer's day but even that hasn't raised a smile to my face.  I have taken another 40 mg of morphine, my insides feel like I have taken strickening poison which is burning a hole through the soft membrane of my lining.  I hope the morphine will kick in shortly and then maybe I can get some sleep in the chair. 
When we are ill we want to be seen and sorted straight away yet the hospitals around us are in capable of treating patients this way.  I know if I went to A & E we would sit for a couple of hours, even if I told them I had had a drain before they would probably procrastinate on doing something, by the time a hole was punched through my stomach wall and a drain inserted, or even better, if it was done under ultra sound, it would be too late for me to get out and travel to Leicester.  But on top of that I would have sat in pain for hours again waiting for something to happen.  This isn't just me, it happens to lots of people.  We are in pain, we need treating - yet urgency is out of the window.  That's what scares me about hospitals, there is no urgency in treating the cause of the pain.
They say we should think of quality over quantity when thinking about treatment and yes the treatment makes us ill but don't they realise how bad the mesothelioma can make us?  Do they think the cancer just slows our breathing down?  We suffer with pain, crushing pains, hideous growths that come out of drain sites.  Hideous growths that hang from our organs.  Suffering isn't quality, so give treatment at least we have a chance of going down fighting and possibly, just possibly buying time that is full of quality. 
I can feel the morphine starting to take effect on the aching stomach, my back on the other hand isn't getting any relief.  I guess the fluid is pulling me apart in some places and squashing me in others.  My ribs are tender to the touch, my skin taunt where it is pulling, where the drains have been inserted hurts, each hole giving off its own pulsating pain.  I should moisturise the skin to stop it splitting but am frightened the fluid is absorbed and makes me even bigger!
Who are we supposed to turn to at times like this?  I have an oncologist who knows I have this problem but has he or his nurse checked up on me - no.  I was supposed to see someone after my last admission at Darlington - to date no appointment.  I am relying on my private insurance to get Dr Dean to see me.  Even that ward let me down as no district nurse ever rang, nor did the Macmillan nurse who was supposedly being made contact with on my behalf.
Gary and I are alone, I can't expect my GP to keep dropping everything, although I am his responsibility, cancer isn't his speciality.  We are waiting for a phone call to see if Dr Dean has received a referral to insert a drain, I have to pray he can do it this week.  What if its only tomorrow he can do it, then I will have to cancel Prof Fennell again.  How will that make me look in his books, this will be the third change, but I need to see him to get treatment to stop this happening.
I am rambling now, my thoughts are everywhere because fear is overtaking me.  I know that I will feel better in an hour when the pains subside into a background reminder that I am ill rather than the full on state I am in.  Another 20 morphine to help bring this about. 
Will keep you informed if I get anywhere today, otherwise I am going to try and sit and sleep.  Even having strange sensations running down my legs, never had these before - probably the fluid cutting off nerves.
No one should have to go through this.

1 comment:

amanda said...

am so sorry to hear of what you are going through, it is scary how the system just can't cope in these sort of situations. You are so right in that you end up being passed around.
As you say A & E isn't equipped to cope in this sort of situation. ideally it should be a combination of a good GP who can make sure you are in the right part of the system and make the system work for you, plus of course a good a macmillan nurse etc.

I don't know if you have a local group but we have found our local asbestos support group to be excellent. Our's is in hampshire and run mainly bu two sisters whose father died from meso. they seem to know their way round the local NHS system and can make sure you get plugged in to the right bits - it certainly doesn't work seamlessly