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

 

http://www.jla.nihr.ac.uk/Introduction.asp   For information on how the Steering Groups Work

 

The document explaining the objective of the Mesothelioma Steering Group can be opened here:

 http://jansjourney.co.uk//JLASteering.pdf

 

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.

 

Being a Judge

I have been asked to be a judge for a essay competition on Mesothelioma, if anyone is still wanting to apply for a school scholarship in the USA you can reach it here.

 

So yesterday I sat and read through the essays that have been submitted to date, better start now before the competition finishes.  This will give me an idea of what to look for and if I have to re-read the ones I have already read it doesn't matter as with my memory I will think I am reading them again for the first time.

 

Yesterday I had a really bright day, what with Gary and I flying solo with the draining then Liz came over on the afternoon and we finally, yes finally, finished editing The Vial of Darkness.  I just need Lauren to do the final art work for the cover and hey I will publish book 2.  I am not sure whether to bother with Kindle as I only sold 16 and am still waiting for the USA funds to be paid.

 

I must get sorted and send a cheque to Chris for the sale of the books my friends and I have sold out and about, I wonder whether I should have just written Chris a cheque for the costs and forgotten about the book but I did enjoy writing it and from some of the feed back I have had many people have really enjoyed the story line and of course the book.

 

The weather changed drastically here, the Northerly winds are full on, last night I couldn't sleep and although Gary was sound asleep I just couldn't nod off.  I got up at 12.00 and made some hot chocolate, this didn't do the trick either but I made my way back upstairs about 12.45, I stayed awake for a while listening to the wind chimes outside and feeling sorry for the wild life that have gone from hot evenings to freezing cold nights in 24 days.

I didn't get up at 8 because of such a bad night, I also had severe sweats and still haven't managed to buy those clothes I have been told about.  I did, however, wear PJ's and they took the brunt of the dampness.  Gary arrived with a cup of Tea at 9.30 and said "Sweetheart you had better get up"  What I thought! 

No sooner had I showered this morning the District Nurse was here, Heather is the head of the nurses and it was her turn to visit.  She asked how our arms were off yesterday's flu jab, now I remembered why lying on my left arm hurt!  She told me she was so happy to see such a change in me, and again what a difference a week can make.  We flew solo again but  tomorrow is dressing day so Gary has already excused himself from helping.  Another litre was wanting to gush out but I slowed the flow again.  I capped at a litre, its enough so that the tube doesn't poke my inner organs.

My Macmillan nurse also told me yesterday that the letters regarding treatment have still not been sent out to the oncologist, so hence I am still in the waiting place.  Hopefully they will go this week, its nearly 2 weeks or more since I saw Prof F and in this day and age you would have thought the post would have gone.  Although he is a busy man, with waiting lists, new patients and of course trials.

So hubby has gone out with the dogs, which brings me to Lexi.  She is drinking water during the night then peeing on the carpet.  Towels have been put down but somehow she always manages to choose a place where they aren't.  We have wooden floors too, but oh no she chooses the living room.  It stinks of ammonia, I know she is failing and you can't really do anything.  Closing the living room door would mean she would start somewhere else and then another floor is ruined.  Thing is Gary isn't as good at carpet cleaning as I am, he thinks one rub and its done.  Me I would soak it with water and then wash before sucking it up with the carpet cleaner.  I can't teach him though, as he won't listen nor I can do it as scrubbing makes me so breathless.  My house will become smelly and I can't stand that.

On that note the blog is done for today.  Its onwards and upwards here and I hope the same around the world for everyone battling through this journey of uncertainty.  My heart aches with each new name that appears on face book or who contact me directly.  Why so many needless deaths and so many of us suffering with such a terrible cancer and yet we are still pretty much ignored world wide.  Will asbestos ever be banned completely and who will pay to clean up all the asbestos out there waiting to kill the next victim?  You can bet the millionaire companies who profited from it won't be putting their hands in their pockets will they,
 

Drainage - Trying it Solo

I haven't blogged for a few days as I have had nothing interesting to write about and honest I think I have moaned for the USA let alone the UK over the last few weeks.

 

It has been tough going, its an adjustment to a new life and getting my head around it has been one of the most difficult periods I have ever gone through.  Dealing with the meso coming out of remission is bad enough but finding it has moved to a totally new area is mind blowing evil.  Then of course having a constant reminder every time you rest your hands on your stomach, no fun.

 

My tummy seems to empty a litre a day at the moment but yesterday it was stubborn and although it was in there it only came out at 400.  I tried turning this way and that but I didn't touch my stomach.  I did the day before and I must of pressed on the cancer area because I hurt for hours.

 

I want to fly solo, so to speak, Gary has trouble getting the tight gloves on, which did make me laugh but yesterday he managed.  Unfortunately it was dressing change day.  Big mistake for me to think Gary could handle working with me for the draining procedure.  The wound was leaking lots of fluid and him this directly coming out threw him side ways.  Considering he watched the thing be put in I was quite shocked.

 

I managed to clean the wound, the drain and Gary managed to get the bottle seal open but he had to leave the room.  The nurse and I ended up having to finish the procedure.  There is nothing to it really but I need him to help as dressing the area is quite hard.  I cut the padding right down, you have a large square foam thing that covers the hole, so I cut this by half an inch right round, what a difference. 

 

My Macmillan nurse called in yesterday too.  I told her my appointment with my local oncologist had arrived, it is the 28th October.  I said if he says 'no' then by the time Liz has sorted another appointment with Prof Fennell we are into middle of November, then the trust will have to apply for money from our local trust, so that's December, Chemo may not start till 2014.  And we all know how fast Mesothelioma can change.  It came back big in July, was it here in May?  So it will have had at least 5 to 6 months growing before I have started anything to knock it back.  I have to take my hat off to her, she said she would contact Dr P's secretary and see if an earlier appointment could be made and if he had received any communication from Prof Fennell or Dr Hughes. 

 

I discussed writing to Mr Faheez Mohamed at Basingstoke hospital.  He is the only UK surgeon I can find who works with peritoneal mesothelioma, he also studied under Paul Sugarbaker from the USA, who is the number one out there for this surgery.  I also found he works privately too, so any problems and I could always pay for treatment.  Although in the UK they aren't as up for taking your money for dealing with mesothelioma. 

 

I heard back from Dr Breen, he said something like my lung is of no consequence at the moment and that I should be concentrating on my peritoneal mesothelioma.  I, of course, disagree.  If I could get the lung growths killed then they can't spread.  In the States this would just happen, but oh no not in the UK!  This has also made me wonder whether the stomach is much worse than I anticipate.  I did try and ask the Radiologist how much cancer was in there but he managed to duck the question several times.  I can't read the scan for my lower body, I can understand the top bit on the lungs, to some degree, but I wouldn't have a clue about anything else.   I wish right now I was in the USA, I would have those right tumours frozen to death, at least I would feel I was getting somewhere.

 

Overall finally I am picking up.  Although more breathless than I have ever been, I now shower downstairs every day, I only climb the stairs at night to save my breath.  The wound site has stopped hurting, as long as I don't touch it, and its itching, that means the stitches must be dissolving at long last.  I didn't realise I had three cuts from this procedure either!

 

On some really good news, Tess on of my fellow bloggers and superstar's has been told her drain may be removed from her lung.  It has been insitu for some 15 months and it will probably need to be removed under a surgical procedure.  This is big step, and one that Tess has waited for for a long time.  To be stable is such wonderful news.

 

Fighting Mesothelioma is hard, there are so many more cases being diagnosed every day, people who have never come up against this cancer are suddenly finding a loved one or friend has been diagnosed and of course the outlook is grim.  Doctors take away hope before the patient has even left their offices in most cases.  For those just diagnosed it isn't always the case that you will die within 4 to 12 months.  Many are being diagnosed at early staging, this is when surgery should be considered.  I know mine has spread to my abdomen but I lost my diaphragm, that is what made the difference I believe.  Thinking back to 2006 when I went to an Action Day a young girl was telling us that her father and brother both had surgery and both died because it spread to their stomachs.  I remember saying to Gary how pleased I was that I hadn't opted for surgery in 2004.  But the fact is I didn't know how far along their cancer was.  That's the problem when you read or hear things.  Position of the cancer and what it is doing dictates the action you need to follow.

 

Prof Fennell said to us, Always follow the Evidence.  Liz will tell you the same. 

 

I heard from the lady who has had her first vaccination, she had a bad skin reaction to the first one, she has one more before she starts Chemo then an injection every week I think.  I said really they should try this on people who have had chemo and it came back.  If the vaccination works that is where it would prove itself early, because if the meso didn't come back within a year then they have a product that potentially works.  The first challenge of chemotherapy can keep the mesothelioma at bay for anything from 4 months to several years.  When its a second rechallenge the length of time is a lot shorter because our meso cells know the poison we are using.