Our Speeches We gave at iMIG Mesothelioma Uk Patients and Carers Day


Rays Speech

After Mavis had twisted my arm into talking to you today
I put together these notes.
So This is my brief account of how mesothelioma has impacted on me.
It started 7 years ago in 2009. After returning from a 3 month stay in spain
Mavis began having breathing problems.
An urgent appointment with our GP and An emergency admission was quickly arranged
This was to be the beginning of 7 years of heart ache.
A diagnosis of Mesothelioma was made.
We were told its Terminal there is no Cure.
Prognosis was around 3 months.

That’s 12 weeks. 12 short weeks. Can you imagine how that news exploded in my brain.
We had been together 52 years . since Mavis was 15 years old we have grown up together.

Now something that I unwittingly brought home on my clothes over 50 years previously was going to be my thank you for all those years
Her death sentence..

So now I became Mavis`s carer

I don’t have to tell you what this insidious disease can do.
We were never told that it was dangerous never given protective clothing.
In shipbuilding It was just an every day substance that we worked with , worked around. And worked amongst.
I am sure that if we were told Wow watch that stuff it could kill you. Most of us would have run a mile.

This mental pain has been with me through 4 different chemo regimes . and 3 trials and a pleurodesis.
I was Powerless to stop it or make her pain go away. Can you imagine how useless that made me feel Watching the person you love the most slowly dying.

Some time later an avenue of hope was offered
a trial in Maidstone
But this was cut short After a few sessions It did not work
It was such disappointment
Next a last chance offer of a trial in London.
Several more weeks of consultation and tests and biopsies only to be told sorry you do not fit the criteria.
Devastated we were referred back to our Local Hospital for one more go at chemo.

You know the score A 12hour day connected to a bag of chemo every 21 days for 10 months.
Each infusion gave us about 10 days of sickness with her head down the loo.
Then 10 days recovering only to start over again.
At the end of those 10 months a scan .We get the news
sorry its just not working Your tumors are growing again.
We have nothing else we can give you.

Go home and do what you need to do.
Stunned silence. Followed.

But Mavis was not prepared to sit back and just die. She said I will not accept this.
She set out in search for something else.
She is heavily involved as a mesowarrior and in helping fellow sufferers By doing this she has many contacts
Now due to a chat with Prof Dean Fennel with whom she had become friends ,he advised her to talk to the Royal Marsden As there was a trial geared to mesothelioma.
It took a few more agonising weeks But We travelled to Sutton to speak with prof De Bono. MORE Agonising weeks passing in which I could only sit and watch her condition deteriorating fast.

She was by now in a bad place. Unable to walk ,supported by a walking frame and sticks. Constantly falling over. On one occasion she fell flat on her face on the pavement. Her glasses smashed narrowly missed her eye as the stem dug deep into her face.
Our Dog just sat down beside her watching. I am sure he was thinking this is not the place to sleep mum.
We ended up in the accident centre for treatment. She then had to explain to friends where she got the. Black eyes and scars.

. . Eventually the Marsden letter arrived YES she had been offered a place on the mk 3475 trial now known as the keytruda.
We can start in May 2014
Without going into detail it was an infusion every 2 weeks and would last for 2 years.
We are now only weeks away from the end of that 2 years. You can see for yourself how well Mavis looks. Yes she still has issues
Lots of Meso and chemo damage she has suffered is not visible or repairable.

During this trial each scan result had good results with various degrees of shrinkage or stability. Up to August 2015 we were so happy with 80% shrinkage.
BUT
We were un prepared for The scan results we had in November 2015 they were stunning.

Quote” Some of your tumors are no longer visible and those that remain have shrunk to 1mm or less. And those tumors show NO evidence of mesothelioma.

OMG that’s the best news we have had in over 7 years .

Continuing with fortnightly treatment and a further scan in January of this year. The results which we were dreading because Mavis said This good news cant continue. But the results were NO evidence of meso and no additional tumors visible.
Fantastic News
Once more we continued with treatment
Now today I can bring this ,journey up to date
The latest scan results taken on 19 April only a few days ago show
It was described as THE PERFECT RESULT.

That’s a nice way of saying Remission.

Now we hope to live the rest of our lives in happy cancer free days.
And now to end this journey on a lighter Note:
During this period of becoming a Carer.
I have become quite domesticated.
Those bits of crockery sitting in the bowl . I can now wash them up.
Not only did I find a hoover in the cupboard I can work that too.
I have mastered the washing m/c and the tumble drier.
Top of my domestic degree is using the microwave.
But saving the best till last. I began learning to cook
now for me that was worth a cap and gown.
My general housework skills now are second to none.
My diploma must be imminent.
I now just want to conclude by adding my eternal gratitude to ALL the Doctors and nurses that we have met along this journey . my heart felt thanks is un measurable.

They will never fully know how grateful we are for our treatment. Without your dedication Mavis would not be standing here today.
Bless you. All.
Finally I have a special thank you to Peter Rawlings from MSD .
The company that made the Drug Keytruda.
Thank you Peter to you and your team, for without the intervention of this wonder juice The Doctors and Nurses could not perform this miracle . And Mavis wouldn’t be here.with me today.
Thank you Peter

So! This is How Mesothelioma has Impacted on Me.

Now I thank you all for listening to my journey today

 

 

Mavis IMIG Speech
Well You have just heard rays account of how mesothelioma has impacted on him as a carer.
Obviously it impacted on me also But in a different way as the victim.
So I wont repeat the details he gave you.

To date I have had 49 infusions with just 3 more left to complete this 2 year trial On keytruda.
My body feels a mess as the drugs have taken their Toll. The drug is not designed to repair the damage done by years of chemo and the previous 5 years of Mesothelioma.
I am left now after 7 years with a 3rd of my lung gone . I have neuropathy and edema.
But Hey I am here I am alive after 7 years fighting .
A bit better than the original 3 months I was given.

Its been a long fight dealing with the meso and also trying to find trials. But I have done it and I have also shared this information with other meso warriors through my help groups
.
In a strange way it has filled my days with work I would never have dreamed of before this disease struck. I run several groups on facebook .I run a blog that has reached over 3 hundred thousand hits. I have a website onestopmesothelioma . I am a NHS patient rep. I am The Patron of Hazmat Pro. I have been invited to speak on several occasions in the House of commons. I have been invited to speak at many forums to highlight and raise awareness of the dangers of Asbestos and the plight of mesothelioma sufferers..

I also have published 2 books taking you on my journey with this disease. I am a mesowarrior was my first one followed by 5 years a mesowarrior. Book number 3 is a work in progress.The list goes on. I don’t know where I find the time to be ill.

I have made so many friends that I would never have had .
I have just come back from a mesowarriors gathering weekend.
Where we all met in a Holiday caravan Park.
By using my help groups I have helped and guided many sufferers to fill trial places at St Barts on the Trap Trial
and also The Royal Marsden for a small MK3475-158 Trial

At a recent meeting with MSD I have pleaded with them to expand this Trial. Explaining that there are many more patients desperate to fill the limited number of places.

These new imunotheraphy Drugs are ground breaking and are the way forward .But it must be remembered Chemo stills plays a big part , it sets the ground and hits back the meso to give you time to find Trials.
You will hear me time and time again Saying this ,as you will need time. Chemo gives you that time,.
Also Chemo in a combination with a drug The drugs do need a little help. So much hype has been caused by Keytruda but we must give the drug companies time.
That’is easy for me to say I know ,but trials are the only safe way to monitor our new drugs ,but when there is a glimmer of success lets use fast track and The Satchi Bills vehicle to get them out to us ASAP.

We sufferers of mesothelioma are like no other cancers. We have been done a huge wrong.by generations of governments. Who knowingly put greed before lives. Now lets get it right for the mesowarriors that are being diagnosed now and tomorrow. Let the government stand up and fight with us to end this misery.To give us back some of what they have stolen of our lives.
It will be decades before we see a decline in victims . Its not to late to put all their efforts into 100% help for us and future victims.
Don’t believe them when they say it has now peaked.It has not peaked it is still rising.
It is often stated that mesothelioma is rare. Well Its not rare as often quoted. Its an Epidemic of huge proportions around the world.
IF All mesothelioma patients around the world who are on or have been on Keytruda trials were to talk openly about it . And Share their story. This action alone will help to feed the statistics. All of which can assist drug companies to improve and innovate.
Events like this one today certainly help to spread the word.
I am greatfull for the opportunity to speak here today.

If anyone has questions about keytruda please see me and I will try to answer them.

bur

bur

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