Friday, 18 October 2013

Steering Committee

We have heard of the guidelines to dealing with Mesothelioma and patients, yesterday Chris Knighton emailed over the following report and has asked us for comments.  I believe we can make the comments directly to the JLA themselves.
This is a non pharmaceutical funded research study bringing together information from Patients, Doctors, Carers, detailing up to date trials and adverse reaction.  I am aware that Prof Fennell, Graham Sherlock-Brown (Long Term Survivor), Liz Darlinson (Meso UK), Andrew Lawson (Doctor and Sufferer) and various other well known people are the steering group.  Indeed Graham mentioned this to me a while back and at last I am pleased it has finally got underway.  To find out more about what the organisation can do visit   For information on how the Steering Groups Work
The document explaining the objective of the Mesothelioma Steering Group can be opened here:
There will also be a short survey coming out which again it is in all our interests to return, as soon as I hear anything I will let you know.
In the meantime yesterday was a busy day in our house.  What with gas oil deliveries for our winter heating then parcels for Gary, he has decided to bin his old, and boy do I mean old, clothes and buy new.  I can tell you I was singing from the roof top.  The district nurse arrived to clean and dress my wound and the Macmillan nurse arrived to discuss today and hopefully a good outcome.  On the afternoon Joyce popped over and gave me a beautiful foot massage.  I had noticed on the morning my left foot looked a little puffy, by the time Joyce got to my feet my left was truly swollen and my right starting to follow suit.  I hope I am not starting to get fluid in my feet, this will lead to other problems and also as I have had heart failure in the past I am slightly worried.  This is something I will be keeping an eye on, if they don't improve then maybe a call to the doctors on Monday.
I am nervous in case things don't go my way but all I can do is hope that treatment will be offered here.  I am also going to ask about the treatment Dr Faheez Mohamed does at Basingstoke.  He did a presentation of his work at the Conference in 2012.  Peritoneal mesothelioma is found in approx. 10-30% of meso patients, plueral is the highest and pericardium is the lowest.  Funny I have all three, not that it is funny in the laughing sense of the word.  I must have been among the nasty stuff and breathed it in wrongly on more than one occasion but then we do know that meso can travel, not that we were told this years ago.  Years ago they kept saying it never leaves its local area, they got that wrong in 07 when mine was beating down my heart!

Yesterday was Bear's birthday, what a birthday boy he was too.  Gary cooked them both steak for his birthday tea, we got pancakes! 

I am going to try and relax this morning so that when I get to Newcastle I am not looking tired and grey, we have to look healthy otherwise it goes against us having treatment.  Chemotherapy isn't something I really want to have if I had a choice but it is the only thing I can try right now to bring the mesothelioma under control.  I am hoping it is the same strain otherwise chemo may not be efficient on the tumours and then, well, I don't want to think about it.
Christmas is galloping towards us and I hope that between now and then we don't lose any more meso warriors, each day we seem to lose another person to this terrible cancer.  Something has to come soon to reduce the deaths and give us all a new hope.



amanda said...

Hi jan,
thanks for the update on the steering group, I can't open the pdf as says as I don't have permission. Be interested when the survey comes through
take care and keep strong

Jan said...

Have amended link here please can some one try again to see if it works. Thanks