Living With Mesothelioma-My Diary- Rays thought on my trial, My answer to a Doctor on Saatchi Bill Facebook,


cartoon for my blog

 

 

 

 

Woke up to wall to wall sunshine yesterday and today and the weather forecaster had said rain.

Ray was able to work on the Motorhome roof and I stayed in doors working but after lunch I have dozed off. Woke up to my DIL shouting out hello. A lovely surprise.

We chatted all afternoon and I cooked dinner.

They had to go home earlier as they were calling in on my sons friends wife. She was recently widowed after loosing her lovely young man to mouth cancer. Terry has lost two wonderful friends recently and both had cancer. the other one is suspected to be Mesothelioma.

It has shocked him that two lovely friends have departed the world as they just come to 50 years old.

We keep being told we are living longer but I fail to see that as the friends die so young with disease of road crashes.

candle 2

 

RIP xx

Today is so nice we must get out for a walk and then I must knuckle under and write my next speech. I will be able to talk about Phase 1 trials now and the relief of getting on one.

Ray wrote his thought down and the whole family agree to me doing this, so im very happy to go ahead now

He wrote

So How do I feel. The waiting  weeks for the appointment was torment, filled with dread but also  hope.

The Journey was a worry  for me but it was not half as bad.

The fact that KCC have said there is no more they can offer Mavis is a smack in the face wake up call.

No more treatment what does that mean. WHAT does it ACTUALLY mean. When  you get home, Nothing more we can give you gradually sinks in. Is this the thin edge . Is it down hill from here. OMG! The fear that runs through my head the pain physical pain I feel in my chest is almost to much to bear.

But I should not have worried. Mavis is to strong to let a little statement like that  Phase her. She came home and does her research, talks to her contacts gets advice and does what she does best. Gets things sorted. She made inroads into treatment and trials up and down the country. She settled on the Royal Marsden. She spoke to  her Oncologist and said I want a referal to the Marsden. And that is what she got. The apointment  yesterday friday was a breath of fresh air. All the staff  we met were upfront helpfull and understanding.

The process was explained to us  so that we can understand it all the way.

After paperwork and a short wait they came back  to talk to us again. This time they said they were happy to offer her a place in a trial. We left feeling a lot lighter than when we arrived. As for me It was a lifeline thrown  to us. They went to great lengths to point out that  they cant offer a cure and that   the trial may not even work. But we reached out and grabbed their offer with both hands. It was a great feeling that there was once more Hope. We cant have a cure but  we have hope of  at least more time. because time is all we ask for. The daily torture of  looking at mavis fighting fighting  for every extra day we have had since that  original  prognosis of  you have 3 months ,12 weeks 84 odd days after half a century of love and togetherness takes its toll.

But  today some weight has been lifted off my shoulders. Some chink of light at the end of the tunnel. Some more  time to do  things together. Any other scenario holds nothing but unbearable pain for me. I cannot conceive a time when thats no longer possable.

All power to her for  giving me the strength to bear this almost unbearable burden. In her shoes  I dont think I  would cope.

Dont stop. Mavis I love you  and I want to go on loving you for a long time to come.XXX http://mesoandme.wordpress.com/2014/05/03/saturday-86/

Well if your very good

Well if your very good

 

God i love that man and all the support he gives me even though he has been through heart surgery this year and has a bad back.

mesowarrior

I salute all the carers as they are so brave

A doctor on Facebook is saying the Bill isn’t necessary My reply is  — Sorry Adam but on the Patients side –it is. There is no treatment only Palliative care for Mesothelioma, (as I have that I fight for the Bill but I realise its for all Cancer) I was told after 4th line Chemo there is nothing else, I have found an Innovation Hospital ( 1 in Kent are there any more) Im now a Guinea Pig and going on a phase one trial, it isnt for Mesothelioma but I will try anything) There are so many Phase one trial coming out I want all terminal cancer patients to be able to have my chance. It may not work but at least my family will be able to say at my funeral She tried her best and fought all the way. Patients that are ill should not have to be fighting and chasing for treatment. I have traveled and researched on the internet. This Bill will cut out all this heartache I have put myself through. Doctors be will back in charge of my illness and treatment as they should be.

A very important Conference was held Friday http://www.ncri.org.uk/events/the-ncri-mesothelioma-workshop

 The NCRI Mesothelioma Workshop

Fri 2 May 2014

09:30–17:00

The Royal Society of Medicine, 1 Wimpole St, London, W1G 0AE

More about this event

The aims of this one day workshop are to:

1. encourage basic and translational research in the field of mesothelioma, by raising awareness of available funding and resources

2. communicate the current status of mesothelioma research

3. address the important clinical questions and how they can be implemented

4. generate ideas for proposals on basic and translational research in mesothelioma.

I received a report from one of the Doctors that attended —-We had an excellent and extremely productive meeting at the ncri international mesothelioma workshop today supported by the department of health. Importantly, the Wellcome Sanger institute (the nasa or cern of cancer genetics was represented). I sense a movement in the industry developing to bring more effective therapies which is encouraging. We need more trials for the relapsed setting though. 

Things are looking up for our Mesowarriors of the future.

Advertisements

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s