Thursday, 25 July 2013

My bloated mesothelioma belly

I am writing this in the IPad, I should have done this earlier today on the computer but I just couldn't sit at the computer this am.  I came home late yesterday evening after spending two days back in hospital.  I had hoped to come home much slimmer but my body never does what is expected (maybe this is why I am still here) plans made didn't go to plan.

I arrived at the ward on Tuesday to have my fluid drained as per arranged by my lung nurse Tuesday morning.  I arrived at Ramac and told I was now on Ward 14, after going through the whole paperwork again and refusing a cannula again I and hubby waited for the procedure to begin.  A very pleasant doctor came and told me it would be commencing shortly and could take 4 hours to drain but I would be going home.  The trolley arrived along with 4 doctors, 3 were there to learn how it is done.  The first needle was to freeze the skin, the second needle to freeze the first inch or so of the abdomen then a third needle would go further again.  Maybe because I use such a high dose of morphine the local didn't take much effect.  They had to keep numbing and lifting the dose.  Finally the drain was inserted and fluid started gushing out, I was over the moon.  No one came back to check the drain but 2 hours later it was only dripping but the drain was causing excruciating pain, it felt like my body was trying to suck it through my insides.

After another hour I couldn't take it anymore, nothing had come out so I found a nurse, a different doc came and pulled the drain out.  The moment she moved it out the wound gushed fluid, in hindsight we should have left the pressure off and let it come!  I was told that they would need to do an ultra scan next to mark the pool of fluid so I needed to stay in.  My side was extremely sore and wanted nothing more than to come home but sense told me to stay.  After a restless night I was told the scan would be done on the afternoon but it was brought forward to 11.

The radiologist put me on a bed, found the largest pool on my right side and marked it, she ,told me I was not allowed to move and that I would have to paddle slide to my hospital bed.  Back up on the ward my bed was a different angle, they rolled me to get the slide under and of course my position changed.  The doc turned up with his scalpel and needles and off he went again.  The needles hurt as the numbing took hold, and each needle got longer and longer.  The pain was terrific but they couldn't get the needle in to where it needed to go, after 30 minutes the pain was just too much.  They withdrew and told me they were going for a more qualified doctor.  An hour later the junior registrar for gastro arrived.  I told him I was going on hols in 4 weeks and could we try nearer the time.  He told me now was the best time as I was at early stages and I was already suffering with squashed organs due to my frame.  Leave it and things would get worse.  I resigned myself to another twenty minutes of pain for them to insert the drain, the needle was around 8 inches and hit fluid, he syringed some off then in went the drain, it stopped running within 5 minutes, in fact the fluid never made the bag, just filled the line.

I moved around, massaged my stomach to push the fluid down but nothing.  3 hours later the pain was at the point where it was unbearable and once again felt like it was being pulled into my organs.
I took some morphine, still no doc to check on the drain.  Finally I asked if they could remove it.  A different doctor did that, after he removed it he told me sometimes sediment gets stuck in the tube and could be flushed, this, in my hindsight was what probably happened on the first try.  I was annoyed at hearing this as there was sediment in the two lots of fluid that had come out.

I came away not actually knowing what is going to happen, my stomach has gone down 2 inches but this morning I was ill.  My chest was extremely heavy, the bile was burning my chest and I could taste it in my mouth.  My ribs again felt that they were being forced out wards.  I finally got up and came down stairs, a mouthful of coffee and I felt sick.  In order to take the water tablets I had to eat so managed 1\2 a slice of toast.  I found a message from Lou in Oz wanting to Skype, neither of us are good at modern techno but we finally managed to connect.  It was lovely talking to a fellow warrior and such a dynamic lady.  After our chat I laid down for a while, my stomach was sore from sitting as was my back.

The day has been on and off with pain, I am tired but am frightened of lying down and feeling that pain again crush my chest.

Writing on the iPad isn't ideal for me but I thought I should write the last couple of days before chemo brain forgets.

I never knew this could happen, it has affected me mentally as well as physically.  I don't know now I will put myself back through this again but at the same time I don't think I can learn to live with the additional pain this brings.

I have hardly visited the toilet today, I am slightly worried I now have another problem.  One good thing today, hubby made a lovely dinner and I actually managed to eat more than one fork full of food.  I ate 3 small potatoes, a spoonful of peas, a small piece of meat and some broccoli.  That's more than I have managed for a week.

This I will post now but will fix the problems etc tomorrow.

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