As the sun
rises on a New Year many of us are full of wonder as to what the months ahead
hold for us? Most people are looking forward to summer holidays, birthdays and
those special occasions that pepper the year ahead however, for the PMP
sufferer the year ahead can be full of very different things.
For the newly
diagnosed the year holds days full of fear as to what might lay ahead, tests ,
surgery and uncertainty. For those fresh
from treatment the long road to recovery lies ahead but a feeling of relief
grows inside with every day that passes and the dawn sun rays feel warm on your
skin as the spring beckons . For those of us that have been free of
Pseudomyxoma for some time there is one date that is burned in our mind; annual
scan day. Will we be lucky enough to receive the N.E.D (no evidence of disease)
letter in the post we all crave or will the beast return? Those two weeks or so
between scan and results are terrifying.
And then there are those among us who have been told the devastating
news that there is no further surgical option. I can’t imagine how this must
feel, the fear of what the future holds, the clock ticking loudly in your ear.
Unimaginable.
To stand on
the front line battling Pseudomyxoma year in year out as your fellow soldiers
are picked off by the PMP sniper is a sobering place to stand. But rest assured
our army is strong, we stand tall, we stand united and one day we will win the
war.
Personally
2015 has started well, I'm fit and well. Lucky enough to have come through two
surgeries relatively unscathed. I still
run two or three times a week and am still caving regularly (in fact I was
underground only last night!). Investigations are still under-way regarding my
vitamin B12 deficiency; the regular jabs have helped me immensely and I feel
like a new man. Recent blood tests have shown an abnormal level of protein in
my blood and further investigations are underway. I also have a SeHCAT scan in
early March. This is a new type of scan for me. It’s done in two parts and for
me is to test the bile absorbency within my bowel. From what I understand at
the first scan I am initially given a radioactive pill and then don’t get
scanned until about two to three hours later. The level of radioactivity is
recorded and then I am sent away and have to return seven days later for a
repeat scan where again the radioactivity level is recorded. From the two test
results the level of absorbency can then be ascertained.
Within the
body bile is produced by the liver to help emulsify fats in the digestive
system and passes through the gall bladder and into the bowel where it is
reabsorbed at the ileum. I had a liver capsulectomy, my gall bladder was
removed and had a right hemicolectomy in my first surgery, all which could have
affected my bowels ability to absorb bile. We’ll see what the test results have
to say.
My last
post advertised the second Pseudomyxoma patient day at Basingstoke and North
Hampshire hospital. As most of you are aware I was unable to go this year due
to my eldest’s 18th birthday falling on the same day. However the
reports back were that the day was once again a real success. Having run one of
these days before I understand the format had been improved to make for an even better day than the first time around.
A close PMP friend of mine Robin Newhouse attended with his wife Karen; this
was the first time they had been. Both thoroughly enjoyed the day and found it extremely
informative. In an e-mail to me Robin wrote...
" I am sure that all fellow PMP sufferers who attended found the whole experience as equally uplifting as we did-it was clear that we are certainly not alone in dealing with this uncommon prognosis, and really encouraging to meet fellow sufferers and professionals to discuss and review our experiences.
I believe that the way ahead will offer more encouragement amongst those affected from a closer
degree of contact with their surgeons and clinical teams,and to be able to participate personally was really helpful in this respect, by attending the Meeting.
We found the break-out sessions that we attended, Sessions 2 and 4 particularly helpful.
From the discussions within our Breakout Session 4, chaired by Tom Cecil, it was very encouraging indeed to learn that there are plans to create a dedicated website/portal which will offer all of those involved, the patients and the clinical teams, a new opportunity to inter react, and thereby facilitate the exchange of information."
The patient forum run by Basingstoke and North Hampshire Hospital is now a date not to be missed if you or a member of your family suffer with Pseudomyxoma Peritonei. Here the most up to date news on diagnosis,treatment and care can be heard from the leading experts on this subject. I strongly advise attending, its also a great opportunity to meet fellow sufferers of a disease that affect just 2-3 people per million per year.
On another positive note I have just found out this week that the company I work for will be doing a dress-down day to raise money for Basingstoke and North Hampshire Hospitals Pseudomyxoma and Colorectal Cancer Trust Fund in May. Any money raised by the staff will be matched pound for pound by Nisbets Plc. It's fantastic news and I am chuffed to bits that the business has chosen to help the hospital that has done so much for me and many other Pseudomyxoma and bowel cancer sufferers. Without them I wouldn't be writing this today...
" I am sure that all fellow PMP sufferers who attended found the whole experience as equally uplifting as we did-it was clear that we are certainly not alone in dealing with this uncommon prognosis, and really encouraging to meet fellow sufferers and professionals to discuss and review our experiences.
I believe that the way ahead will offer more encouragement amongst those affected from a closer
degree of contact with their surgeons and clinical teams,and to be able to participate personally was really helpful in this respect, by attending the Meeting.
We found the break-out sessions that we attended, Sessions 2 and 4 particularly helpful.
From the discussions within our Breakout Session 4, chaired by Tom Cecil, it was very encouraging indeed to learn that there are plans to create a dedicated website/portal which will offer all of those involved, the patients and the clinical teams, a new opportunity to inter react, and thereby facilitate the exchange of information."
The patient forum run by Basingstoke and North Hampshire Hospital is now a date not to be missed if you or a member of your family suffer with Pseudomyxoma Peritonei. Here the most up to date news on diagnosis,treatment and care can be heard from the leading experts on this subject. I strongly advise attending, its also a great opportunity to meet fellow sufferers of a disease that affect just 2-3 people per million per year.
On another positive note I have just found out this week that the company I work for will be doing a dress-down day to raise money for Basingstoke and North Hampshire Hospitals Pseudomyxoma and Colorectal Cancer Trust Fund in May. Any money raised by the staff will be matched pound for pound by Nisbets Plc. It's fantastic news and I am chuffed to bits that the business has chosen to help the hospital that has done so much for me and many other Pseudomyxoma and bowel cancer sufferers. Without them I wouldn't be writing this today...
