Back aboard the runaway train-MOAS II T-46 days and counting...

We received the letter from Basingstoke yesterday morning. My surgery date has been booked for the 14th August and I'm to be admitted two days before on the 12th for the various tests and preparation prior to the op.
 I rang and spoke to Sue Alves (specialist pseudomyxoma nurse) and we had a chat about the results of the last blood tests and the CT scan done on the 19th June. The good news is that the tumour markers remain normal. The CT scan also showed "marginal growth" from the one done in January and no signs of disease anywhere else. All this is very good news as there are no nasty surprises at this point and it only remains to see what the surgeons find when they actually open me up again. In some ways I think its good to have a 2 year MOT to see whats going on inside since the MOAS.
 We talked a little again about the operation itself and Sue basically echoed the comments from our last meeting.  The operation itself will be around six hours or so with the first couple of hours likely to be dealing with the adhesions and scar tissue from the last operations. Then the excision of the PMP and subsequent re plumbing .I will also have another dose of HIPEC during the op which takes around 90mins which may also be followed up with repeat doses over the following days.
 Its hoped that I wont have to have chest drains this time around as there is no need to operate on the upper abdomen. The chance of having a stoma is also less although cant be ruled out and I will be marked up by the stoma nurse prior to surgery (a big black circle on my tummy with a marker pen-x marks the spot!).
 In terms of recovery I am being told to expect to take the same amount of time as the MOAS both in hospital and at home. The first time around I spent around a week in ICU and then out onto C2 ward for a total stay of 13 days. Lets hope its as quick this time around. I was off work for around 4 months.

 The family have all coped well with the news. It was a foregone conclusion really and is no surprise.We were already mentally preparing ourselves for it and as there are no nasty surprises in the results we have received are now focussing on getting it done. We have done it once so we can do it again is the attitude. Hopefully this will be the last time.....

 So once again we climb aboard the PMP runaway train and the countdown begins........

Tribute to Graham Davies

It is with sadness that I learnt today that Graham Davies a fellow PMP sufferer lost his battle with the disease.

 Graham was one of the first people to welcome me to the Christies forum when I made my first introductory post not long after I was diagnosed. He was an active member of the forum and always one of the first people to respond to posts from the newly diagnosed seeking help and support which Graham offered by sharing his story.

Graham also offered support via his website. It was one of the first PMP sites that I found after my diagnosis. I made contact with Graham and we mailed each other regularly.

Graham also came to visit me after I had my MOAS in February 2010 as he also had an appointment at Basingstoke. Sadly I was still in ICU and was not allowed visitors so I missed my chance to meet him face to face.

 Graham was a real inspiration and regularly posted photo’s and updates of his holidays and trips abroad with his family and friends which I know he loved.

 Graham suffered with a rare form of PMP involving the Urachus (a tube in the stomach that connects the bladder with the umbilicus and is only used pre birth). In May this year Graham learnt that surgery was no longer an option.

Our thoughts and prayers are with his family now at such a difficult time.

Rest in peace my friend.....

Graham's Story can be found at http://www.camsoftpartners.co.uk/pmpsurvivor.htm

Back to earth with a bump.....

On Monday we were back at Basingstoke for my second CT scan this year. Basically to get another look at the area of reoccurrence that was found on my CT in January (a growth the size of a marble on the small bowel) to see if it’s grown and if so by how much? This will then indicate how aggressive it is. I guess the images will also show if there are any other areas of re-occurrence that have appeared since the last scan.

 I also had bloods taken to test the kidney function (eGFR) prior to the scan and the usual pseudo follow up bloods to measure tumour markers. Last time these were clear and hopefully will remain so this time around. A bit of advice here for all newbie’s to the world of Basingstoke Hospital; always allow extra time for the bloods clinic. It’s always a very busy department and even with a “fast track” appointment we were sat there for nearly two hours (partially due to a screw up in the fast track system). Thankfully the CT scanner was less busy and slightly ahead of schedule.

 In the last few months we have been busy getting on with our lives. Keeping house, working, running the kids here and there and family days out. It’s good that we lead such a busy lifestyle as it helps us to compartmentalise things and put away the Pseudomyxoma stuff in the box at the deep dark recess of our minds. It ‘kinda works for a while. Problem is, as we have found with this beast is it always finds away to resurface at some point or another. And I guess it’s healthy that it does. To lock away such strong emotions usually ends up with them manifesting themselves in other area’s. It’s just too big a thing to lock away and ignore...

 And of course the recent visit to Basingstoke brought us back to earth with a bump and the realisation that we are now on a direct crash course to MOAS mk II has done just that. Tracey in particular has found it hard and the realisation that we potentially only have weeks left before we have to do battle again has finally hit home. But, if history repeats itself then in a couple of day’s time she will be feeling better and ready to face the world again.

 I too go through the daily mental challenge that I guess any cancer sufferer does. Some mornings the alarm goes off and you think “I really can’t be bothered today” (come to that I suspect most people think that first thing on a morning!). Then the suppression of the negative thoughts kicks back in and again you stuff them back into the little black box at the back of the mind. It’s a constant mental struggle that we (and those close to us) go through daily. Wrestling constantly to suppress the overwhelming feelings of anger, frustration, grief and self pity and beat them back with positivity, smiles and determination. Luckily most days the positive “angel” wins, some days when you are tired or have a hard day at the office the “PMP devil” gains the upper hand.

 So now we take a deep breath and await the call and at the same time start to make plans, preparations and gather our armies of positivity and build ourselves up ready for the next onslaught.....

                                          Gustav Dore- The Battle of Angels -Paradise Lost