Under the knife again......

On Wednesday the 7th March we headed back to Basingstoke to meet Mr Cecil and his team to follow up on the results of the CT scan done at the end of January.

The scan had shown that a re-occurance had been found on the small bowel at the back of the abdomen and that was about all I knew. At the time of the phone call with Sue Alves she suggested that I may go onto a watch and wait type approach or possibly some chemo treatment.

We arrived at Basingstoke Hospital with time to spare and went and sat in the bay window of the Arc conference centre restaurant in the sun and relaxed with a coffee and cookie. It was very busy with members of staff eating their lunch and chatting away. I kept an eye out for friendly faces but saw no one that I knew. I could tell Tracey was nervous and obviously worried about the meeting.

We wandered down to the outpatients department and sat quietly waiting our turn. A chap went in before me with what I presume was his wife and another couple for support. He looked gaunt and unwell. The meeting over ran by about half an hour. I wasn’t going to complain about being late, clearly they needed the extra time and I wasn’t going to begrudge them that as I could guess the type of discussion that was taking place. They eventually emerged from the meeting room; the look in their eyes said it all.

Soon our names were called and we met Vicky Stone, another of the specialist nurses in the ‘Pseudo department. We went in and sat down, Mr Cecil had a Spanish doctor with him who was obviously working alongside him and he was introduced.

We cut straight to the chase and Mr Cecil advised that they had found an area the size of a marble on my small bowel where it meets the stomach. My tumour markers however were normal. He went on to say that in retrospect when they looked back at the 1st annual CT scan that there was probably something there then but it was too small to pick up.

The team had held a meeting apparently and looked closely at the CT images and discussed me at some length. They had decided that the best course of action in my case was to do another operation and to remove this area of concern which they were pretty confident was a re-occurance of Pseudomyxoma Peritonei. Apparently, the operation would take around six hours. I would need a midline laparotomy again as they needed to get easy access. It would also take some time to “un-pick” me as there would be lots of adhesions and scar tissue from the last operation that would need to be worked through before getting to the main area of concern. I got the impression that the next step of removing the tumour and re-plumbing me was fairly straight forward. They had also decided that they wanted to repeat the HIPEC (heated intra peritoneal chemotherapy) treatment and would wash out my entire abdomen with the chemo bath for an hour at the end of surgery much like they did in my MOAS the first time around. I was pleased about this as I felt it was a very beneficial area of the treatment. They also suggested that because there was less “re-plumbing” being done this time around the requirement for a temporary stoma to let the bowel recover would be far less. Equally the need for the chest drains would be less although neither was guaranteed. I would need a stint in the intensive care unit again before going back to C2 for recovery.

We had some discussion about when would be best and finally agreed on a follow up CT scan and blood tests in June and then do the op in July or August. This gave us some time to book in a holiday and enjoy some of the summer and also for me to work on my fitness.
The meeting was over pretty quickly and we thanked Tom for his time. We spent some further time talking with Vicky about the plans for the operation, the charity work we had been doing and even this blog before leaving for home!

The mood on the way home was quiet. Whilst we felt all we had heard was positive and were thankful that there was something that could be done it did mean yet another major operation.
A clear pattern to our reaction to news like this appears each time we get it. You instinctively get the knee jerk of upset, sadness or anger on day one. Don’t really sleep so well that night and day two you feel tired and down. By day three (and hopefully after a better night’s sleep) things appear a little better and brighter and by day four your back to the daily doo and have locked away all the negativity in the mind compartment labelled “PMP”. Occasionally when you are tired or having a quiet moment the PMP compartment door slips open and those thoughts spill out to the forefront of your mind. At this point Tracey and I have agreed we must always talk about it and if one of us is feeling down then we seek solace in a hug and get off our chest whatever it is that’s bothering us.

I plan to approach the operation in the same way as the MOAS. Get as fit as possible between now and the operation by continuing to run as much as possible. This will ensure that my cardio vascular system is in the best condition it can be. I recently dug out the spirograph I was given the last time around and am just slightly short of being able to max it out at the moment so it suggests I still have some work to do to get to the same level of fitness I was at before in terms of lung capacity. I also want to dust off the weight training kit and try to build some muscle. This will give something for the body to feed off post op if I am to be fed TPN via a central line again and supply the calories needed to help the body with the healing process.
It was an approach that seemed to work well last time and will hopefully work again this time.

Tracey and Mum again plan to travel to Basingstoke and stay whilst I am in hospital. Joyce will again come and look after the girls. This time things should be a little easier as it will be the summer holidays. We are so lucky that we have the support group around us that can help at the drop of a hat. Without them things would be so much harder.