Thursday, 24 December 2009

Christmas Eve 2009

Its Christmas Eve 2009. I'm currently sat in work waiting to go home. The family have all gathered at home and are waiting for me. The girls have stayed at Mum's the last few days and been to the Theatre Royal in Bath to see Sleeping beauty.
Its been snowing and the country pretty much brought to a standstill. Things are starting to melt now and the frecast is for a warmer day tommorow.

We are all prepared and looking forward to the time off. This year we are determined to have a good Christmas and make the most of our time with the family. We are not going to let things spoil the festive period and wont now worry about the op until the new year.

Merry Christmas everyone!

MOAS -38 days

Saturday, 19 December 2009

"The letter" arrives.....

19th December 2009

"The letter" arrived today. I am to be admitted on the 31st January 2010 at midday in Basingstoke. The MOAS will be performed on the 2nd February.

We knew it was coming but it didn't make it any easier and Tracey and I were both upset by it. It has to happen, I cant not do it, its the only way forward. Its just such a huge thing and no-one really knows what the outcome will be.

Merry Christmas eh?

The countdown begins.....

MOAS - 44 days and counting....

Saturday, 12 December 2009

Firming things up.

Wednesday 2nd Dec '09.
We drove to Basingstoke to meet with the team looking after me again. This time Mum & Dad came too as I wanted them to hear everything that had to be said. The appointment was later in the day so we got the girls off to school and had a fairly quiet morning.
The drive to Basingstoke was good and the traffic was kind.Tracey was nervous, even though we knew what was going to be said it was still difficult for her to hear. I felt OK, prepared for what I was going to hear but was tired from the recent sleepless nights.
We met with Sue and Tom again and looked at the latest CT scan. There was no real significant change to the images. The mucus pretty much surrounded my liver, appeared in pockets on my stomach and around the lining of the abdomen. There was also a possibility of some in my pelvis around my back passage but it was not clear and only when I was opened up would the true extent be uncovered. My bloods had shown that the tumor markers were elevated and this really confirmed that it was PMP that we were dealing with.
Tom told me that they planned to do the MOAS (mother of all surgeries as its known to PMPers) in late January or early February 2010. The fact that I was still symptom free was a good thing and meant there was no need to rush me in. We were to try and have a good Christmas and New Year and then concentrate on the operation after.
He told me that my prospects on paper were good. I have age on my side and have always kept myself fit and eaten well. However most people will suffer some kind of complication after the operation, some of which can be life threatening. The mortality rate for the operation was around 1%.
The one thing that he did add was that he was hopeful that they might be able to save my Gall bladder as there did not appear to be too much desiese in that area.But again until I was opened up the true extent would not be known.
So we left the meeting with no more nasty surprises which was a good thing. The meeting was pretty up beat and Tom seemed fairly confident that the desiese could be removed.
As had become routine I had the usual stop at the blood clinic to have further blood tests done. Six lots of blood were taken.

We made our way home, it was dark and raining. Tracey sat next to me in the back of the car quietly sobbing. I held her hand.

We came home and eat dinner. Chloe arrived in late full of herself after her Christmas carol concert at the Colston Hall and this cheered us up no end. Apparently her freinds mum had taken a home movie of the whole thing and would do us a copy so we could watch it back.

I had taken the following two days off as holidays to do some Christmas shopping and it was a good job I had. The following day I was a mess. I handnt slept again and was feeling low. We did manage some shopping but I managed to leave a bag behind in the shop and was generally a zombie.
We had made an appointment with my GP for that evening to discuss things. I wanted to get vaccinated with both the Flu and Swine Flu jabs so I didnt get caught out with either after the op as I would need all the help I could get with the recovery.
At the appointment I ran through what had been happening. It was the first time I had spoken to my GP about it and it was probably well overdue. The stress combined with the lack of sleep in recent days meant that I was very fragile and I had a few tears. He agreed to give me something to help me sleep on the days that I was struggling. I think these will be important in the week immediatly before the operation.

I went home, had an early night and slept well. The next morning I was a compleatly different person. Back to my old self. Tracey and I went into Bristol and finished off the Christmas shopping. I felt good again.

The following week my good mood was improved more when my plaster was removed from my arm. I hadnt realised how much it was getting me down and it felt like a real weight was lifted when it came off.
The following day I went for my first run in 8 weeks. It felt great, I took it easy. Just a nice flat 4 miler to get started. It is now imperative that I stay injury free and get as fit as possible for the MOAS.

So this brings me up to date as of now (16th December '09) all entries now will be as things happen and real time.
So now we are waiting for the date for the MOAS. Once we get the letter the countdown begins. We are planning a great family Christmas. I have been told that I cant go caving for between 6-8 weeks until my wrist heals properly so instead of the usual christmas caving trip to OFD or Agen Allwedd we are planning to go walking instead. I cant wait.......

Friday, 4 December 2009

The Hammer Falls again......

So once again we were waiting......
This time for the date for the CT scan. We decided that we wanted to do this at Basingstoke so that images wouldnt get lost being transferred from Bristol. Also the scanner at Basingstoke was apparently better and the analysis of the results would be better.
It was still late summer so I decided to take a two week holiday with the family and try to get back to as normal as possible. We took the kids to Wookey Hole,Stourhead,The American Museum,The Bristol Harbour Festival and The International Balloon Fiesta. We also stayed with my aunt in wales for a few days and did a couple of days out there. It was a great time and for a while we did almost forget what was going on...well nearly.
The date for the scan came through, it was the 15th October '09 at 10:15. This time as it was only a scan Tracey and I drove up on our own. A few days before I had fallen and managed to break the scaphiod bone in my right wrist! The Fracture clinic at Frenchay wanted to plaster me up but decided the drive to Basingstoke was more important so I was given a support for a few days and was then plastered up! As had become the norm the visit also meant that blood tests were going to be done so a trip to the bloods clinic was first. only two tubes this time checking the tumor markers.
Then it was back to the CT scanner. I changed into the hospital gown and had a cannula fitted so the liquid could be administered when I was in the scanner. I found myself stood looking at my reflection in a window, hospital gown on, plaster on one arm where the bloods had been taken,cannula in the other and my wrist in a support waiting to be plastered. What a sorry sight!
I had drunk the special liquid over the last hour that helps produce the scanner pictures and was now dying for a pee! The nurse showed me into the room and led me down on the bed. Pictures of birds adourned the ceiling. I was passed through the scanner and then again the cannula conected. Lying still I heard the familier instructions...." breathe in....breathe out....breathe in....and hold......"
The scan was soon over and I was dressed.We had been turned around in double quick time and had a quick bite to eat and were then soon on our way back down the M4.
The following day I went to Frenchay on my way home and my wrist was plastered.

We waited about two weeks or so for the results and then I got the call whilst I was in work.
The results were not great. Any hope that the liquid might have been absorbed were dashed. There had been a slight increase and one of the tumor markers was up.
Its what I expected and had built myself up mentally for but I couldnt help clinging into the slim chance that the body could have re-absorbed the liquid. I was down again, this meant the operation was definately on.The hammer had struck yet again.
I was the only manager in the office that day, ideally I could have done with the day off as it was hard to concentrate on what I was doing and my mind was elsewhere. however I needed to be there to keep things running and in hindsight it probably wasnt a bad thing. We didnt sleep well for a few days, it started to become a pattern. A few days before an appointment and then afterwards neither Tracey or I would sleep well. You became tired and that only made things worse and more depressing. Then after a day or two things would start to return to normal and you would catch up on sleep and feel better again.
So that was that, the op was definately going to be on. We now awaited another appointment with Tom Cecil and Sue Alves to go through the results in more detail and find out when the operation was likely to be done.

During these few weeks Tracey started to do what we said we wouldnt and trwled the internet for information. We had been warned against it as alot of grim reading was out there, but we also found some gems. We are also pretty level headed. There is some real bad stories about life expectancies and re-occurances of the desiese but also some encouraging stuff. Every person is different, each case is different, some of the data on the internet is now old and out of date.
During this time we read some great blogs from other survivors and also our best find was the Pseudomyxoma Forum at the Christie hospital in Manchester. The welcome we had here was great! A real family atmosphere of people who have been treated, are undergoing or are awaiting treatment at both the Christie and Basingstoke.

In the weeks that followed we also started making preparations at work for the time I was out of the business. Katy my assistant was leaving mid Jan on maternaty leave and I had a feeling that would pretty much co-incide with my departure. So job adverts went up for two roles in my department, one for maternaty cover for Katy and the other a 6 month fixed term contract to cover me whilst I was away from the business. I would interview for both roles.

Finally the letter came through with a date for the next meeting. On Wednesday 2nd December we would meet both Tom Cecil and Sue Alves again to go through things and agree a date for the operation. Again my parents would come with both Tracey and I to hear what had to be said themselves.

As the time drew closer Tracey became more depressed. We knew what was going to be said it was just simply hearing it. My youngest daughter Chloe had a school concert down at the Colston Hall the same evening singing christmas carols. A once in a lifetime opportunity and we were going to miss it as we had a late appointment in Basingstoke and would not be back in time. Yet another thing that this Cancer had taken from me.
As the day drew neared again sleep became an issue. Id been pretty busy at work trying to get my board report done on time, interviewing for both Katy and my jobs and again starting rate negotiations with our carriers. I could really have done with a good nights sleep but just simply couldnt drop off and to top it all now had a mild cold haning around. I was struggling...