Thursday, 25 February 2010

Sat 6th Feb 2010 MOAS +4

Mum and Tracey came to see me around 09:00. I'd had a really bad night and had hardly slept at all. The hallucinations had come back with a vengeance. In the early hours I remember seeing Mr Cecil sat just the other side of my curtains. He was sat watching me intently. When I looked again he was still there, this time in tears and with his head in his hands, everything was so quiet. A short time later Mum and Tracey arrived. He led them away from my bed to the central desk area. I couldn't hear what he was telling them but I did hear Tracey burst into tears. I could also hear the alarm beeping at the central desk indicating there was a problem at my bed.Nobody came. A little while later my Dad arrived which had meant he must have come up from Bristol. He joined Tracey and mum down at the desks. I could hear him shouting "come on son, be strong you can do do it" all the time I felt things were slowing down and I could hear the alarm on the machine sounding. I was convinced it was the end. I tried to control my breathing, wriggled my hands and feet occasionally but still the alarms were sounding.
A little later the family were all brought to my bed and sat behind me out of sight (as I was lead on my side) and were waiting for the inevitable to happen. I said my goodbyes
"tell my girls I love them"
"I'm sorry, I tried my hardest"
" I love you all"
"Tracey, meet me on the beach"
I even raised my hand. At this point I must have been actually shouting these things as I think I disturbed the lady in the cubicle next door. I'm not sure if it was real or not but I'm sure I heard her say "why is he saying these things?"
The next thing I was aware of was my nurse by my side looking at my machines and monitors. She asked me what the matter was and told me all was ok.
Hang on a minute. Was this really happening or was she just trying to make me comfortable in my final moments?
This was a hallucination, a cruel trick of the mind, I was fine. But it shook me to the core and I couldn't sleep again. It still haunts me now, it was so real, so very,very real.
When Tracey and mum arrived I told them about the hallucination, they could tell I was shaken and tried to convince me that it was all just a dream. I still wasn't entirely sure. I drifted off to sleep and had a good few hours where I was so physically tired. Whilst I was asleep I was again given more paracetamol very slowly.
I awoke at 14:00hrs and was convinced there were mice in the ceiling. My machine would make a "click,click,click" noise every so often and I was sure this was mice in the roof running over the air ducts. I also had mosquito's flying around me!
Mr Cecil then came around on his daily visit and again told us I was doing well. Today would be my last Chemo session and from tomorrow they could start to remove some of the tubes.
My test results came back from the day before and showed that I was all clear. Good news.
Tracey and Mum came back to see me around 18:00hrs and I was relaxed and in and out of sleep. I'd had yet another bed bath and was clean.
We were also told that I'd be moving to the ward that night. Tracey phoned mum who had gone back to the flat. She came back up only for us then to be told that I wouldn't be moving that night after all.
I was worried about sleeping because of the dreams and hallucinations and Mum and Tracey stayed with me until 23:30hrs to try and keep me calm.

Friday 5th Feb 2019 MOAS +3

I again had a fairly comfortable night. but because I had no windows in the room I had lost all sense of night and day and could not tell what the time was. There was a clock directly in front of me the hands seemed to move really slowly and time stood still. Was it day or night? who knows!
When Tracey and mum arrived I was sat up in bed and they thought I looked a little better. I had been given a bed bath and had my teeth cleaned. I was still very tired though.
Whilst they were there the doctors visited along with Sue. They checked out my wound and the abdominal area and were pleased with progress. The ICU doctor also checked me out and said that it wouldn't be long before I'd be moved to the HDU (High Dependency Unit).
That day the family visited, Jess & Chloe, Joyce,Stephen and Dad. Dad couldn't come in as he had a slight cold and didn't want to pass it on. The girls did not come in either as we felt the time was not right and that it would only scare them seeing daddy in the way he was.
Initially just Stephen and Joyce came in, I was very tired as the physio had again been in and sat me in the chair. As soon as Stephen saw me his face said it all, he was physically shocked by what he was seeing and it was written all over his face. I was too tired to talk and they only stayed 5mins or so before leaving me to sleep.
They came back at 14:00hrs and I was better so they spent a bit longer with me. I had a reaction to the intravenous paracetamol that was being administered throughout the day. It seemed if the drip was turned on too fast I would have some kind of reaction so it could only be administered very slowly. It was strange as they had never come across that before. Again this always made me sleepy.
I did look better that afternoon and as well as moistening my lips with damp swabs I was also given ice cubes to suck. I had an unquenchable thirst.
Again that afternoon the Chemo was drained and the fresh lot administered.
Mum and Tracey came back to see me around 18:00hrs. I was again very tired after having the paracetamol but more settled as it had been given very slowly.
Again the hallucinations were there. I closed my eyes and could see pink fluffy rabbits whizzing around on a roundabout, their ear flapping in the wind!
Again I was hot but in all fairly relaxed. The drain on my left side was leaking a little but the nurse said that this was ok and would not get infected.
I also was convinced that Chris P from the Psuedomyxoma Forum was on the ward getting treatment. I told Tracey to go and check it out as I was convinced he was there. Again this was just all side effects from the drugs. Hallucinations, I was loosing touch with reality.

4th Feb 2010 MOAS +2

I had a good night and was fairly settled. Mum and Tracey came to see me at 09:00. They couldn't come in straight away as I was with the physio. Despite all the pipes and tubes hanging out of me they were determined to get me out of bed and in a chair nearby. What a palaver untangling everything just for a few minutes in the chair. Whilst all this was going on one of the doctors paid Tracey and Mum a visit and again said how well I was progressing. They soon came back in and spoke with the physio. I used the spirometer but only managed to reach 1000ml when pre-op I'd sent it off the scale at over 5000ml, what a difference in lung capacity. All the exertion took its toll and I was pretty wiped out.
Around 10:00am the hallucinations started. To begin with they were manageable, if only I knew how bad they would get. I started seeing things on the wall behind mum and Tracey. Writing on the wall, a bark effect and cracks in the wall. My vision was also bad and images were flicking in front of me. I was getting hot and agitated.
The doctors came to see me and explained that it was due to the build up of pain killers and chemicals in my system so they decided to turn off the Ketamine. By the time evening had come I had calmed a little but was still hot.
They also swapped my oxygen mask with a tube placed up my nose as this was deemed more comfortable. I still had all the drains in but little were draining from them.
At 15:30 I had another dose of inter peritoneal chemotherapy. Basically they drained off the last lot through my stomach drains and then filled me with a fresh lot which will stay in me for the next 23hrs.
Mr Moran came around in the evening and again confirmed that all was going very well.
Tests were also done on my spittle and urine for infection.

Tuesday, 23 February 2010

3rd Feb 2010 MOAS +1

Tracey and Mum arrived in ICU to see me at around 09:30 I was semi awake and aware that they were there. I apparently had a good night and they were pleased with progress so far. They saw Mr Cecil again who confirmed that I had the full Sugarbaker and that some of my rectum and bowel had been removed. He was very pleased with the way the operation had gone and was confident that all the tumor had been removed.
Tracey and Mum then came back just before lunch and found that they were starting to bring me around and were going to remove the ventilator.At that point though I became rather agitated and was trying to communicate something. As I couldn't speak because of the breathing tube the nurse gave me a pen and paper and I wrote the word "Cold" down the best I could. The problem was I was still very sedated and could hardly see what I was writing let alone concentrate on what I was doing. Finally after about the 4th attempt they realised what I was saying and placed another blanket on me.
They came back after lunch and the breathing tube had been removed. Bloods were being taken every two hours and I had a PCA to administer my own morphine when required. I also had my first post operative chemotherapy. The chemo liquid is pumped into the abdomen where it stays for 23hrs and then is drained over the period of an hour and then the whole cycle repeated over the next four days.
I tried the spirometer breathing exercise machine given to me by the physio the day before and couldn't get it to work ( I was blowing rather than sucking!).
I was finding one of my chest drains very uncomfortable so they pulled it out slightly.
I also has special boots on each foot that would inflate with air and simulate walking to keep my circulation in my legs on the move and help protect against blood clots.
My temperature was high all day but they didn't seem too worried by it. I was in and out of sleep all day but the doctor was happy and said I was making good progress and a bit ahead of the game.

Saturday, 20 February 2010

The Mother Of All Surgeries (MOAS)

Tuesday 2nd Feb.....

So it was time, the big day was here. I was awoken at 05:45 and had a quick cool shower ( I had been advised not to make it too hot as this could make me bleed on the operating table!). I got dressed into my gown and was given some tablets to make me relax. I sat in the chair and tried to keep my eyes open. Tracey suggested that I get into bed but I wanted to stay in the chair. Finally the theatre staff came and collected me. I said my goodbyes to Tracey and Mum and then must have been overwhelmed by the drugs as I don't really remember too much.
I do remember going into pre op where the anesthetist said hello and it seemed a number of people started work quickly. I vaguely remember her telling me she was putting in a cannula and that she was giving me some drugs and the that was it. Lights out, good night Irene!

Tracey and mum sat in my room for a bit and composed themselves as they were both upset. My bags were collected by the nursing staff and locked away. Tracey and mum went back to the flat. The first call from the surgical team came in at around 13:30hrs and advised that the extent of the disease was pretty bad and that they had removed my spleen,gall bladder and had re sectioned some of my bowl which would mean a temporary stoma.They also suggested that they were confident that they could get all the tumor.

The second call came in at 17:30hrs.It was Mr. Cecil. He said that all the tumor had been removed and that I was getting the chemo and was doing OK. Once the chemo was done they would then start to stitch me back up and he expected me to be in ICU about 22:00hrs.

The third call came in at 21:30 to say that I was in ICU and that I was doing fine and that they should be able to come see me . Tracey and mum were finally allowed in at 23:30hrs to see me. I was on a ventilator and had lots of tubes and pipes attached to machines-
6 x stomach drains
2 x chest drains
1 x catheter
1 x nasal gastric tube
1 x ventilator
1 x central line (in neck)
1 x epidural
cannula's in wrists.

Tracey and mum stayed for approx 1/2 hr and then left as I was still sedated.

I spent a total of 12hrs on the operating table.

During the operation they performed-
A midline laparotomy excising the umbilicus.
They found desiese on the surface of the liver,some desiese on the antrum of the stomach,on the spleen, both right and left diaphragms, a lot of desiese in the pelvis involving the rectum,some desease on the ceacum and terminal ileum and desease on both paracolic gutters. The good news was that there was no desease on the small bowel.
The right paracolic gutter was stripped.
A right hemicolectomy.
Stripped the left diaphragm and mobilised up the spleen.
A greater omenectomy taking the gastroepiploic vessels off the stomach.
Removed the spleen and omentum.
Stripped the right diaphragm.
A lesser omenectomy.
Stripped the porta-hepatis and did a cholecystectomy transfixing the cystic ducts and cystic artery.
A diathermy liver capsulectomy with high power diathermy.
Stripped the left paracolic gutter.
A pelvic peritonectomy.
An anterior resection as the rectum could not be sepearted from the desease.
Having remouved all the macroscopic desease I was then given 1 hour of heated intra operative Mitomycin C at 41 degC.
An end to side anastomosis of the colon on to the rectum.
A hand sewn 2 layer anastomosis with interrupted 3/0 PDS of ileum on to ceacum.
A right iliac fossa loop ileostomy.

Thursday, 18 February 2010

One day to go.....

Monday 1st February.

Today was a busy day. I was started on more Ducolax first thing and then the consultants started to arrive. I was visited by Susan the specialist nurse, the anethatist, two of the surgical team,the physio therapist who gave me a lung capacity test and was surprised when I litrally blew it of the scale! It was the fist time he'd seen it! How different things would be after the operation.
My obs were taken regularly and every time my blood pressure was up. I think it was starting to concern the nurses, it was mentioned to the consultant but I explained that I suffered from "white coat hypertention" and that seemed to satisfy them.

The day ticked by quite quickly and I was surprisingly relaxed. In the afternoon I was given a third dose of the Ducolax and this finally started to work.
That evening we were given the tour of the Intensive Care Unit (ICU). that was scary, seeing all the machines. But every bed was attended by one nurse and again the atmosphere seemed fairly relaxed.

Then that was it ,everything done. Tomorrow was the big day. The nurses would get me up early to allow me to have a shower and clean my teeth etc... I would be taken down to surgery between 07:00 and 07:15. Tracey and mum would be there to see me off.
I would also be given some medication to sedate me a bit and settle me down.

From this point onwards Tracey and Mum would keep a diary that I will transcribe as I was clearly unnable to do it myself.

MOAS -1 day.

Basingstoke-THe Big Day arrives

Sunday 31st January.

Finally the day we had dreaded arrived. We were all packed and ready to go. Mum and Dad arrived at 09:00 to pick us up. We wanted to get on the road early and ensure we had plenty of time to get to the hospital. It also meant we got our goodbyes to the family out of the way quickly and did not have time to dwell on it.
I held my girls tight in my arms and we all cried, was this the last time I would hold them?
I tore myslef away and we got into the car. We were soon on our way.

We arrived at the hospital early which gave us a chance to get Mum and Tracey settled in the accomodation. There was some initial confusion which meant we ended up in a right dive of a place but that was soon sorted and we ended up in a fully furnished flat that was more than adiquate.
I then headed up to the ward for 12 noon as per my letter. I was shown to ward to C2 and assigned to room no.1. I was surprised to find that it was a single room with en-suite bathroom. More than comfortable. The nurse advised that the doctors would not be around till 14:00hrs and we were free to do what we wanted till then. We headed back to the flat and I gave Tracey some last minute coaching on the netbook!
Back to the room at 14:00 and we sat and waited for our first visitors. I was soon handed my first cup of magic potion to clear out my system.I was dreading this part and was now not allowed to eat and could only drink clear fluid. Surprisingly the first cup of Ducolax didnt take effect.
Later that afternoon Mr. Cecil arrived to go through the consent form. I didnt look at the small print, just signed it.
After that we had a quiet afternoon and evening. I was given clear soup and jelly for my tea, more than I expected.
That evening Mum and Tracey left and I made myself comfortable and watched a DVD. This ward was great!
Tommorow would be a busy day......

MOAS -2 days