Tuesday, 26 November 2013
So its been a while since my last post.... the sands of time just seem to be slipping through my hands at the moment...
The year is drawing to a close and the days are now short. I go to work in the dark, look out of the office window at the sun skimming the horizon over frost filled fields before it dips away out of reach. Then it’s back into the queue’s of traffic, brake lights as far as the eye can see crawling at a snail’s pace in the most congested city in the UK (according to a recent report by Tom Tom). Frustration grows as the sands keep slipping through my fingers sat in the queue watching the clock pronounce that another twenty minutes have slipped by and I'm only twenty yards closer to home...
The Christmas rush has started. Presents have to be bought, the Christmas festivities planned, food shopping done. At work it’s our busiest time of the year, orders have to be fulfilled and everyone wants their orders delivered yesterday.
Everything seems to be moving at 110 miles an hour until it becomes a blur and before you know it the day has gone, the week has passed and it’s Sunday evening. Time to do it all over again.
It’s easy to get caught up in the daily do. We all just accept this hum drum brake speed existence as the norm. But as a cancer survivor who has stared into the void the one thing you hold dear are those few moments snatched with those you hold dear, those tender moments that get easily missed and taken for granted. Helping the kids with their homework, a walk in the park, a cuddle on the sofa in front of the ‘tele.
I know a number of people who are currently staring into the void. Uncertain of what lies ahead in the darkness. Just months ago living the brake speed existence without a care charging around at 110 miles an hour until a consultant in a outpatients clinic somewhere slammed the brakes on and brought them and their families to a dead stop.
So I guess my message is this; yes we all lead busy lives and race round at 110 miles an hour, even more so as the festive season approaches. But please take time to stop, if just for a moment and savour those golden moments because once the sand has slipped through your fingers you simply can’t get it back.
Monday, 23 September 2013
Great News! My CT scan results have come back clear. There are no new signs of disease and the tumour markers were normal.
As you can no doubt imagine we are all very relieved and pleased by the results and it’s a huge weight off of our minds. You try not to let things worry you but in the week or so between the scan and getting the results it constantly plays on your mind.
So we have a whole year to make plans for now!
Tuesday, 3 September 2013
So once again it’s that time of year when I get fed through the PMP wheel of fortune! Or in other words annual CT scan time....
I haven’t felt too worried about the CT scan itself. In fact I was in Sainsburys yesterday morning buying doughnuts for the staff on C2 just before heading to Basingstoke and bumped into a family member of ours who remarked just how upbeat and happy I seemed prior to having to be zapped by the scanner. The scan doesn't phase me. It has to be done, it’s not an ordeal and to be frank wasting energy and all the negativity that worry brings just simply isn't worth it. Worry when you know you have something to worry about.
This time as the scan was scheduled during the final days of the school holidays we made it a family trip and the girls joined Tracey and I on our trip to Basingstoke. The two hour drive from Bristol went well and it’s now a well trodden path for us. We have seen the Hampshire countryside in all types of weather and yesterday the sun shone brightly on the corn fields as the farmers toiled in their combine harvesters reaping the rewards of the harvest.
We first headed up to C2 ward to say a quick hello to the team and deliver the freshly baked doughnuts! We had a quick chat with Vicki, Linda and Jade all of whom remarked on how well I was looking. Time was pressing and I was due to the bloods clinic at 12:30 for my fast track appointment to have the Pseudomyxoma blood tests prior to the CT scan. So we said our farewells’ and headed for the bloods clinic.
Once completed we then headed to the CT scanner and checked in. We found a comfy seat in the waiting area and I started on the flavoured drink that has to be sipped over the hour before the scan itself.
When the time came I was ushered into the scanning area and got changed into the hospital gown. From there it was to a small cubicle where I sat in a chair whilst the nurse inserted the cannula into my left arm. So that was bloods from the right, cannula in the left! Doing well! Shortly after I was called through to the scanner and shuffled along in my hospital gown and hopped onto the bed of the scanner. The nurse connected up the cannula and I was reminded that the iodine dye that is pumped into you gives you a hot flush and makes you feel like you have wet yourself! Then she left the room for the scan to begin.
It was at this point that I did for a fleeting few minutes contemplate the seriousness of that particular moment in time. I feel that this scan is a particularly important one. Any re occurrence now would probably mean that Pseudomyxoma has it in for me. I can understand that a second re occurrence could be down to a “bit that was missed” from the first operation (or could just be kidding myself). My second operation was successful and again I was given the all clear. The surgeons have been in twice now and sorted me out; there must be a limit as to how often they can repeat such a large operation? And that was that... the nurse entered the room, the scan was over.Time to keep smiling, be upbeat and crack on. But once again the PMP wheel of fortune has been spun and for the next 7-10 days I once again find myself on the PMP runaway train and await the results.
I got changed and met the girls in the waiting room. First stop was the canteen for a cuppa and a sandwich as I had now done four hours without food and drink so was famished! Then it was the long drive home. The mood in the car on the way home was different. The girls listened to their I-pods but Tracey was quiet. Tired out and I think reality had hit home. We stopped in a pub for dinner and treated the girls to giant Knickerbocker glories for desert. Then home and early nights all round.
So here I am, at work typing this on my lunch break. More worried about the state of my inbox after a day out of the office at the moment but as the week draws on the ever present knowledge that I’ll soon be getting “that call” from Basingstoke will obviously weigh heavy on our minds...fingers crossed.
Tuesday, 16 July 2013
So it’s been quite a while since my last post. After the fantastic Pseudomyxoma Forum held at Basingstoke Hospital I felt a well earned rest was deserved. Work had been equally manic and I had a number of projects on the go at home.
Family life has been great! Jessica, my eldest left school recently and had her school prom. She looked fantastic all dressed up in her prom dress and went off to the event in a stretch limo with all her friends. A real proud moment, it doesn’t seem that long ago she was just starting school!
Tracey and Chloe are well and looking forward to our upcoming family holiday.
I have been busy and finally completed the extension of my garden pond and now have a number of Koi carp swimming around quite happily in it. It’s great to sit back and relax next to it with a nice glass of red wine.
I have also had a some success with my photography recently with my photo’s being used by the BBC on their website and on the national weather forecast on the television!
My health is currently good. I feel well, continue to run and the recent pond project was all done on my own, by hand. Shifting a couple of tonnes of top soil and laying bricks was very had work (especially for and office boy!) and I often came to work on a Monday battered and bruised from the weekends work but glad that I was able to do it. Things could be so very different.
As August draws near and the anniversary of my last operation looms our minds are increasing occupied with my upcoming annual CT scan. I feel that this is an important one. Three years since my first operation, then a reoccurrence in 2012 makes me nervous that Pseudomyxoma will return once again. If it does, where will it reoccur and will it be operable?
There will be one huge sigh of relief if the results are good.
We also received some bad news recently. Our good friend Chris (Chris P) from the Christies Pseudomyxoma Forum lost his battle with PMP on 30th June. I felt a particular bond with Chris. We were diagnosed around the same time in 2010 and Chris had his MOAS at the Christies Hospital in Manchester some two weeks before me. We compared notes on our recovery and helped each other along. Unfortunately the outcome of the operation for Chris was not so good and the team there were not able to remove all the disease. Chris however remained optimistic, always one of the first to offer welcome to newcomers to the forum and give support and share his knowledge. Chris has the proud honour of being the author of the MOAT (The Mother of all Threads) as we called it as it is the longest running thread on the forum with 98k views! Chris’s dry wit and lengthy posts were something that everyone looked forward to and always read with a smile. As time went on Chris’s posts became less frequent and I think it was clear to all that he was having a difficult time. He will be sadly missed by us all and our thoughts are with his family.
Monday, 20 May 2013
Report- 10th May 2013-International Pseudomyxoma Patients Forum, The Ark Centre, Basingstoke & North Hampshire Hospital.
As many of you will know from my last post I have recently been lucky enough to be involved with the first ever Pseudomyxoma International Patient Forum held at Basingstoke and North Hampshire’s Arc Conference Centre.
It was a fantastic day that allowed fellow PMP patients to gather and obtain up to date, quality information direct from the leading experts in the world. It also allowed so many sufferers’s who have talked via forum’s, email and the web to finally meet face to face.I know many of whom attended a meal together the evening before the forum as a social event sponsored by the Pseudomyxoma Survivor charity.
The event started with a buffet lunch at the Arc Centre and allowed time for around 100 delegates to meet, have a chat and also look at the stands. The local press and hospital photographers were onsite covering the event.
Dr. Paul Sugarbaker, Tom Cecil, Brendan Moran and some of the Basingstoke team ( plus me!)
The meeting started with a presentation by Dr. Paul Sugarbaker MD,FACS,FRCS who pioneered the surgery (also known as the “Sugarbaker technique”) often used to treat PMP patients. Full cytoreductive surgery as its known technically is the procedure that I underwent in Feb 2010. The presentation was very detailed and covered the History of Pseudomyxoma, outcomes and future developments.
Dr Sugarbaker started with the history of Pseudomyxoma covering the history of the PSOGI (Peritoneal Surface Oncology Group). Interestingly the word “Psogi” in Japanese means “clear”. The first PSOGI meeting was held in 1998 in London where 20 delegates attended, the real turning point was in 2002 at Basingstoke where 120 delegates attended. The number of delegates attending the meeting held every two years has steadily grown and in 2012 in Berlin 670 delegates attended!
Dr Sugabaker then went on to talk about the development of the use of HIPEC. He explained the importance of complete cytoreduction being achieved and all macroscopic disease being removed to give the HIPEC less to do when tackling the microscopic disease. HIPEC was first suggested back in 1980 at the University of Louisville, Kentucky. There was an interesting slide documenting the history of the development of HIPEC. A point to note was the designation of Basingstoke and North Hampshire hospital as a Pseudomyxoma peritoneal treatment centre in 1998 under the direction of Brendan Moran with a second centre being established at the Christie in 2002 under the direction of Sarah O’Dwyer.
The discussion then moved onto the future direction of treatment with plans to-
1- Abandon the watch and wait policy with referral of symptomatic patients to a peritoneal surface oncology centre.
2. The preoperative treatments are now biodirectional with some chemotherapy agents for use with heat targeting to the peritoneal cavity. Others as part of a hyperthermic intraoperative ontraperitoneal chemotherapy regimin (HIPEC).
3. Neoadjuvant treatments are now being explored for gastric cancer. It presents an exciting new direction...
4. Perioperative chemotherapy is being moved to the primary management of gastrointestinal and gynecologic cancer.
Dr Paul Sugarbaker-Management of Peritoneal Surface Malignancy: A Short History.
Dr Sugarbaker closed his speech by summing up that the best results in treatment is achieved when
the disease is diagnosed and treated early with full cytoreduction being achieved and all of the disease being removed. If the disease is low grade then this helps further. He finished with a slide from the PSOGI group that read as follows-
"Peritoneal metastases when optimally treated can be cured; in selected patients peritoneal metastases can be prevented. The ultimate goal is to eliminate local-regional reoccurance and peritoneal metastases from the natural history of gastrointestinal cancer"
However Dr Sugarbaker was keen to point out that we are still learning about the disease and the best way to treat it. Studies on Pseaudomyxoma are difficult to carry out and obtain meaningful results with such a small number of patients.
There was then a half hour question and answer session with many good questions coming from the delegates and patients in the audience. Most poignant were questions from a Japanese delegate who spoke knowledgeably about the current plight of PMP sufferers in Japan where treatments options are limited. Interestingly both Dr Sugarbaker and Brendan Moran are due to visit Japan imminently. We also heared from an Armenian patient who told us that there are no treatment options currently for PMP sufferers in Armenia. It highlights just how lucky we are here in the UK that there are two specialist centres where we can get treatment for Pseudomyxoma through the NHS.
We then broke for coffee and there were again photo's and interviews with the Basingstoke Gazette.
Myself with members of the Basingstoke team.
We then moved on to the break-out sessions where delegates could attend two half hour presentations and discussions on various topics as follows-
Session 1- Developments in Surgical Techniques-Paul Sugarbaker & Faheez Mohamed.
Session 2- Follow up after surgery-Brendan Moran & Vicki Pleavin-Evans.
Session 3- Pathology and Imaging: Why are they important? Lesley Sobin & Hilary O'Neil.
Session 4- Chemotherapy in the HIPEC era-Andrew Jackson.
Session 5- End of Life Care-Tom Cecil.
These sessions proved very interesting and I know many would have liked more time for further discussion.
Finally we then all came together to hear presentations on raising awareness from Dr. Amani Albedah-The Kuwait Group for Peritoneal Surface Malignancy covering many subjects but most notably DR.Albedah put forward her idea that the various support groups currently working independantly of each other should consider coming together to form an international body working in conjunction with the medical teams to create a focussed international group specialising in developing research and development opportunities and identifying funding institutions with an interest in PMP.
Dawn Green followed with an inspring speech taliking about here work in building the Pseudomyxoma Survivor charity. Dawn talked about the various activities of the charity and its ideals, goals and the role of the charity moving forward.
I then finished with the speech below...
We then spent a few minutes with a question and answer session from the floor with questions posed to myself, Amani and Dawn.
Dr Amani Albedah, myself,Brendan Moran, Dawn Green & Tom Cecil. (pic Angela Brook)
All in all it was afantastic event and there has been great feedback from all who attended. It's hoped that this event could be held every two years and I am positive that with the great feedback it will prove to be even more popular next time around.
After a quick chat with as many of the delegates as possible and goodbyes all round it was time to head to Audleys Wood Hotel where we were staying the night.
We had been lucky enough to have been invited to a special event commemorating the 1000th Pseudomyxoma operation at Basingstoke Hospital. It was a black tie event and the ladies wore cocktail dresses! The event was held in a buetifully decorated marquee in the hotel grounds and it was great to see so many of the hospital staff who have cared for me once again. It proved rather difficult to recognise them out of context and out of uniform! Amani, Dawn and I were all presented with a gift from Brendan Moran and there were speeches from Tom Cecil and Paul Sugarbaker. We all then partied on the dance floor to a great band. Tracey and I then retired as we were pretty worn out from such a busy day.
It was a fantastic day that we were honoured to be a part of.
Tuesday, 26 February 2013
Caving has always been my favourite past time, I enjoy the challenge that it brings and it’s a great form of escapism, you only really think about the next obstacle that you have to negotiate and all thoughts of work and day to day life just disappear. It’s a Marmite thing, a past time you either love or hate. Personally, I love it.
However after my first MOAS I believe that my confidence had been knocked. I’d always kept myself fit, I ran regularly, caved, weight trained and eaten a good diet. I didn't smoke or barely drank yet still I got cancer. I’d gone out of my way to stay fit and healthy, I thought I was invincible. We pushed caving trips and did some fairly long and technical trips, some very demanding physically with hours spent underground, some very technical hanging on a single rope with vast amounts of fresh air between us and the cave floor. I trained hard and ran three times a week but I still got cancer, I wasn't invincible, cancer doesn't discriminate, cancer doesn't care.
No longer was I the fit guy who trained hard and enjoyed adventure sports. I was now the guy who people looked upon with pity, who had cancer and been through a huge operation and whose future was so uncertain. My life had changed forever.
So I had a break from my beloved caving. The kit hung in my tackle store unused and I instead went for more sedate past times. I wasn't sure I could handle the demands of the tough underground environment. Instead I chose more sedate past times such as walking, fishing and photography. All things that I enjoy and get a lot out of but were not caving, not life on the edge.
It wasn't until after my second MOAS and after my involvement with the Cancer Survivors Club book that I was inspired to dust off my kit and start caving again. It was at the book launch, surrounded by so many inspirational people who had shared their stories that I realised I needed to shake myself up a bit and get back to normal. Chris Geiger had a page on the website where he wanted to encourage people to send in their photo’s with themselves and the Cancer Survivors Club book pictured in the most unusual places.
Well there was the challenge- get back to caving and take the book underground! A perfect excuse to go caving again that will hopefully show fellow cancer sufferers and PMP sufferers that there is life after cancer and two MOAS operations. It was time to start grabbing life by the short and curly’s again! I have an old mantra “you only get out of life what you put into it” and it was time to stop pottering along and get fit. Fit for caving, fit for life and whatever it may throw at me again.
So I returned to running, first of all just some short flat runs and then gradually went further and further and then threw in a few hills. I'm now running two or three times a week and averaging 7.5km on a lunch hour.
With my fitness levels starting to return to normal it was then time to start planning the trip underground. I wanted to start off fairly easy and as it happened a guy I was running with at work also fancied giving caving a go. So we set a date –Friday 22nd of February and headed to the Mendip hills straight from work. The plan was to descend the Swildons Hole cave system to a point in the cave known as Barnes Loop. A pretty section of the cave and ideal for photos and also a trip suitable for a novice caver and also a caver returning after two MOAS operations!
It was a bitterly cold evening when we arrived. The temperature was -2.5 degrees and it was trying to snow, the ground was frozen solid. It was time to take the Cancer Survivors Club underground. Below is the photo that we took in Barnes loop and a short movie inside the cave showing how we got to our chosen spot!
Hopefully it will inspire fellow sufferers that you can get back to normal after treatment and to go grab life by the horn’s as “you only get out of life what you put into it”! Go on; go set yourself a challenge.......
Wednesday, 23 January 2013
So Christmas is now all but a distant memory and we are back into the routine of work, work, work! We had a great festive season and had a well earned rest as well as spend time with the family. Winter has finally come to the UK after a mild start and much of the country has found itself under a generous covering of snow turning dark winter landscapes in bright picturesque scenes from Christmas cards! We made the most of a six inch covering of snow at the weekend and all headed out tobogganing, making snowmen and walking. It was a great weekend and quality time was spent with the family having fun.
But with the New Year always comes the worry of what lies ahead? For most the promise of the coming spring and summer months, family holidays, New Year’s resolutions and endless possibilities fills the mind. But for PMP sufferers and their families the worry of upcoming treatment, yearly CT scans and possible re-occurrences’ loom large in the mind. Even our New Year’s celebrations were tinged with a fleeting moment of sadness, the look in the eye and that extra tight hug that lingers a while at midnight says a thousand unspoken words...
My own recovery after MOAS II continues to go well. I’m gradually going further on my runs, running hilly routes and generally making a slow return to my former fitness. Twice now I have arranged caving trips and twice we have had to cancel due to poor weather conditions and flood risks. The caves will still be there in a couple of week’s time, I just need to be patient.
Whilst I crack on with my busy daily routine the fact that there are other fellow PMP sufferers undergoing treatment right at that time is never far from my mind. I try to offer help where possible and support people where I can but it saddens me to know that there are family’s out there whose lives are in complete turmoil due to a PMP diagnosis or supporting each other through a MOAS or other treatment. It’s tough on everyone involved. People can find themselves dropped into an extreme situation almost overnight. The pressure is immense and sadly it can take its toll on families. Things are said in the heat of the moment at times when people are under extreme pressure that sadly sometimes causes irreversible damage and causes family divides. I’m aware of at least two instances of this happening. We need to remember that when faced with a diagnosis or treatment everyone needs support and the pressure will be huge. Things may get said that we don’t like to hear or people don’t really mean and would not say in a normal situation. But we are not in a normal situation, so we must remember this and try to bite our tongues from time to time until the turmoil is passed.
So for me now it’s back to work (I’m on my lunch break!)! I have a number of couriers trying to deliver thousands of parcels and pallets across the UK under this blanket of snow. The joys of logistics!
But let’s spare a thought for those people currently fighting their own battle with Psudomyxoma Peritonei .....