A Diary of a Mesowarrior Living With #Mesothelioma #asbestos — My Belated Birthday Present

 

Frances Poet on tackling the asbestos tragedy in her new play Fibres

A STELLAR QUINES AND CITIZENS THEATRE CO-PRODUCTION

“We were two weans playing at wee hooses, him in his first job and me being the good wife doing his washing. Now we’re both paying the price.”

Jack is proud of his work at the Clyde shipyards. His wife, Beanie, who is nursing him through asbestosis, thinks he’s a fool. But the real test of their marriage comes when they discover that the dusty overalls Jack brought home to be washed by Beanie, poisoned her too. This isn’t what she thought Jack meant when he promised “what’s mine is yours”.

Meanwhile their daughter, Lucy, attempts to overcome her grief. Will she be held back by her parents’ experience, or will she have the courage to allow romance to blossom with Pete?

Written by award-winning playwright Frances Poet, Fibres is a big-hearted and laugh out loud play about what it means to entwine our lives with another, in sickness and in health. A story told by four characters who show a very Glaswegian resilience and wit, the play asks can we ever cut the cords that bind us and who will catch us if we do?

Cast includes much loved actor Jonathan Watson (Only An Excuse, Two Doors Down, Rab C Nesbitt) and Maureen Carr (‘ugly sister’ Edith in Still Game and baddie Theresa O’Hara in River City).

Stellar Quines is an award-winning organisation whose vision is to be Scotland’s leading touring theatre company, inspiring excellence in women and girls.

Source https://www.citz.co.uk/whatson/info/fibres

I cant wait to see this as it is a story that Mirrors my story and my life with Ray

 

 

 

 

 

 

 

A very wonderful outing in London yesterday.

I had a birthday present from Mary and Harry way back in August and we have just been able to get together to have our Tea at Cartridges.

The setting is very grand but very friendly so after a nice journey up there with a young man who didn’t stop talking loudly about how he travels on trains for free. He has worked out what station doesn’t have barriers.

I visited the new toilets at Victoria station after the refurb and was very impressed Gold doors no less.

 

 

 

 

 

Then we went for the tube to Bond street. I always come out the wrong exit so we had to ask a man working on the road works and there it was Claridges right in front of me.

Claridges Hotel Entrance London Mayfair Brook St

 

 

 

 

 

 

 

Harry followed us in and Mary was already there we sat down and had a wonderful Tea. The Champagne made me hick up.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

We did sit and and talk and plan events for the new year but yesterday was a great treat.

A belated Birthday Present was enjoyed.

We travelled home very happy and very full.

Now Im ready to face the Royal Marsden everyday next week and ready for my treatment.

 

 

A Dairy Of a Mesowarrior Living With #Mesothelioma #Asbestos -The Gems Study Money Raiser and the Royds Withy King Nurse Study Day

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

10 Oct saw us at the Gem Study at a lovely venue -The Crypt on the Green

Aliyah Of 12KBW really set up a nice evening to raise funding for MesoUk GEMs study and The Mavis Nye Foundation was honoured to sponsor the  reception drinks. I was the first to be interviewed and the interviewer was happy with my knowledge of how men and women are treated differently by some hospitals who treat Mesothelioma.

|Ray Gave a painting to be auctioned and Harry Steinburg Sold it at £450.00 to a 12 KBW Lawyer who since then has contacted Ray and says how he loves it so much x

Gendered Experience of Mesothelioma Study (GEMS) Looking for Participants

Consultation with health and legal professionals indicates that women may have a different experience to men regarding mesothelioma in terms of awareness of the disease, diagnosis, access to treatment and compensation and legal processes. There are many possible explanations for this but little research to establish what is actually going on.

GEMS is a Mesothelioma UK collaborative study supported by generous donations from 12 King’s Bench Walk, HASAG, Irwin Mitchell, Mesothelioma UK, Papworth Mesothelioma Social Group, and Royds Withy King. GEMS is being conducted by the Mesothelioma Patient Experience Research Group at the School of Nursing and Midwifery, University of Sheffield.

The study is now seeking patients who received a mesothelioma diagnosis more than six months ago who would be able to take part in a telephone interview.

The GEMS study aims to explore the experiences of men and women with mesothelioma, their family carers as well as the various staff with whom they come into contact.

We will seek to understand why any differences that are identified occur. Our goal is to establish with participants how services should best be delivered to be accessible and acceptable to both men and women.

If you have been diagnosed with mesothelioma more than six months ago and would be able to take part in a telephone interview, please email info@mesothelioma.uk.com or call free phone 0800 169 2409 for more information and to be put in contact with the research team

Thursday 17th

We travelled to the TSSG meeting for East Kent and had a good meeting although I can see things have really changed in the NHS in the 9 years I have attended this meeting.

I do worry about our NHS when we have these wonderful people trying hard to make things run smoothly.  To many chiefs and not a lot of Indians. Bless them as the CNS seem so despondent.

Then yesterday off to London early to the Royds Withy Kings Nurse Study Day.

 

 

 

 

 

 

 

 

 

 

 

So many people we already knew from travelling around the country meeting at so many Study days, conferences etc etc

 

 

 

 

 

 

 

 

 

 

 

 

 

Dr Riyaz Shah bought us up to date with Immunotherapy trial results as he has just returned from Barcelona #ESMO19 It was a very interesting talk.

Nicky Howe talked about Asbestos and how people are exposed and the diseases that it causes.

Tony Milson spoke about Wills one thing I learnt was for husband and wife to have separate bank account then you dont pay inheritance takes. It was a bit complicated so i need to check it out.

Jennifer Seavor gave a talk about postmortems, a awkward subject but she answered so many points that on our forum we can now help.

It does seem though the Coroners can ask for a PM when some do not so it does all depend on the Coroner he has the final say.

Joanne Hargrave gave an update on the role of the Thoracic Nurse

Rachael James gave a spoke about Private funding of treatment when you can make a claim.

Dr Charles Twort spoke about diagnosing Mesothelioma

Rachael Thomas spoke about Pain management and even talk about cannabis oil.

Helen Childs spoke of what we need to know about claiming benefits and the cases where she has won a claim.

 

 

 

 

 

 

 

 

 

I then closed the day talking about today’s asbestos problems and  Asbestos in Schools.

read out a poem i was given by a mesowarrior that her 12 year old Granddaughter wrote.

Dear Mavis We lost my father as you know 7 yrs ago and my youngest daughter was only 5yrs old. She wrote this poem for a project in ENGLISH and at aged 12 yrs I am shocked at how it has impacted her young life forever

Living Death

Here I tell the story of a boy that I knew well…he was not but 15 years old when he was condemned to die…

I came to him one day in 1956

He was just an innocent boy, undeserving of what I did.

As he grew and thrived I chuckled to myself

I watched his dreams of his children and his wife,

Always knowing he would die, I watched him slave away, at a life I would eventually take!

For 50 years I slumbered, as happens in all I infect

Mutating their cells and organs,

No way for doctors to detect.

Unknowingly you breathe me in

Tasteless, colourless, only a microscopic fibre;

Trillions upon trillions, only as big as a penny;

You breathe in unfathomably many.

Since Roman times they knew I killed,

Yet stupidly they did nothing… to protect the millions

as they march blindly to my will.

I’m all around you now, waiting in the shadows,

Of homes, nurseries and office blocks.

I snigger to myself, as I watch you take your bows,

one by one you suffer and die,

as the hands tick round the clocks.

Why don’t you stop me? You come like lambs to slaughter,

Sending your babies, your fathers, your mothers,

your sons and daughters.

You say I cause you pain and tear people from your lives,

yet the people who can stop me… do nothing and perpetuate their lies!

Lies that I don’t kill and disease your bodies and minds.

Lies that I am harmless and ok to use – it’s all fine!

You allow them to keep mining, more of me from the ground;

Weaving death into your every walk of life.

People are crying, screaming in pain,

yet I come back for another round!

Year on year I take you, decade after decade you come.

For centuries I’ve taken you… yet still nothing is done?

Governments said ‘It will breed itself out!’

‘It’s a generation of old men’

But those old men are your Grandads, your children and now your mums.

I hid in children in the 60’s,

Mothers and babies in the 80’s too!

I will infiltrate you now, if you are not careful,

I will take what I want, not matter what’s due…

…I am Asbestos

‎Maxx L C Higham

It ended the day perfect if a young person can write a great poem like that then we are getting through to the young that Asbestos kills and we must erase it from our lives.

Thank You Maxx you bought tears to everyone’s eyes and a hug to your Nan xx

 

 

 

 

 

 

 

Thank you for the lovely day and for inviting us see you next year xx

Helen Childs

 

 

A Diary of a Mesowarrior Living with #mesothelioma #asbestos – Treatment and trials and fun

 

Its a long time that I have sat down to write a blog.

My trial at the Marsden is taking so much of our time. We are 850 miles in a week it is unbelievable and although we are paid for parking and mileage it doesn’t cover the wear and tear on the car, thank goodness we updated our car to a newer one as we must have reliability especial with the winter coming.

On October the 1st Ray and I went to the Marine Hotel in Whistable to give a talk to the 41 Club (a club based on The Association of Ex-Round Tablers’ Club where you are only allowed to stay up to  40 years hence a 41 club.

We were there to give a talk on our journey and the work we do with the Foundation as Lisa Goldsworthy, a lovely Mesowarrior that friended me when she was diagnosed. She was a school teacher at our local school

 

 

 

 

 

 

 

 

 

Lisa had always wanted me to talk at the club and her Father contacted me and I agreed to talk after her death.

It was a lovely evening with a nice meal and we gave an after-dinner talk.

They raised £75.00 and donated that to the Mavis Nye Foundation

 

 

 

 

 

 

 

 

 

The next day we put Lous into the kennels and travelled to Chester as the BISF was going to award me with a  ‘Outstanding Contribution’ award.at the 2019 BSIF annual Networking event and what a fantastic! event.

Everyone looked after us so well for 2 days of fun and laughter.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

We did have a great evening and made so many new friends also they collected over £1100 pounds for the Charity so very grateful to everyone for thinking of the Mavis Nye Foundation.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

Next day we travelled to London to the Erase Meso Event at the Brewery in London.

We stayed overnight at the hotel that was there. Directly they saw ray a lady said “Oh you can do with a shower and other items” I said you mean disabled room” “Yes ” she said.

I told Ray he was looking rough !! bless him.

It was a club room and very big but I dont like the wet room. Once the tiles get wet they are so slippery.

We changed for the evening and went to the event.

It was brilliant, well organised.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

I don’t know how much money they raised for the Charity but I expect they will announce soon as it must have been a huge amount I played a small part as mavis Nye Foundation had donated the entertainment for the evening and Paul and Jill Cook gave my Foundation and myself so much advertising xx

We relaxed all weekend and then Monday it was off to the Marsden for blood tests to know if I could have my drug all week every 5 days.

All was Ok then on Tuesday they surprised me with an infusion of Pembro. I didn’t think it was so soon after the last one but this was the day to have both drugs together.

Pembrolizumab and a new drug called guadecitabine

Well, I have survived and felt very well if still very tired.

We did sneak in a visit to London yesterday to go to 12 KBW event raising money fro the GEM Study

Gendered Experience of Mesothelioma Study (GEMS) Looking for Participants

The Mavis Nye Foundation donated the welcome Drinks as I wanted to play a small part as I have done my interview and the lady who called me said I had set a hard presidency as I had so much knowledge of the disease. I realised as I spoke that there is a huge gender difference I hope that is what is shown by others.

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

 

This morning we got up later and went to get my last Injection. We are really looking forward to having 2 weeks off no. Im at the 3rd session only 31 more to go EKKK!!!