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!!!

 

 

 

 

 

A Diary Of A Mesowarrior Living With #Mesothelioma #Asbestos —Reporting on my busy week. CT scan Bi-op it goes on and on

 

 

 

 

 

 

 

A week of rush that started on Monday with a CT Scan at the Marsden.

The young nurse didn’t put cream on my port so I jumped as she tried to access my port which made her miss the hole and the pin went down the side of the point. Oh dear, I did feel that. it was bleeding as well.

She asked another nurse to do it which was better and my port was opened.

The contrast was put in and it was so much better than canula’s and plasters

Tuesday was Ray’s appointment at our local Small injuries surgery. It was a brain scan and they used the mask. Poor Ray isn’t used to all this medical and he didn’t like that.

We have to wait three weeks now for results.

Wednesday Back to the Marsden for my BI-Op.

Such a lovely caring Doctor but the needles hurt as one by one they push deeper.

Then the three clicks where she takes a sample. She said they are learning so much from me, so maybe that’s ok then.

Ray said you’re so brave, as he sat watching.

I was taken back to the ward to rest and I thought I was off home—NO!.

They took blood and we had to wait for the results where they then gave me pembro. Yes, I have my wonderful drug again. they give it separately from the drug thats put in my tummy for 5 days as they just want to see the reaction if any.

Must say all the blood taking and pembro through the port was brilliant.

We left there at 5 so that wasn’t too bad.

I was shattered and slept early that night it was good to have a day off Thursday and relax and nod off in my recliner.

Friday -Last night – We went to Canterbury Uni.

Foundation Day Lecture: Healthcare Now and For The Future
Delivered by Professor Helen Stokes-Lampard, Chair of Royal College of General Practitioners
Foundation Day is held each year in celebration of the foundation of the University of Kent.
The anniversary of the University receiving its Royal Charter in 1965 is celebrated every year at Foundation Day. This year we welcome Professor Helen Stokes-Lampard, Chair of the Royal College of General Practitioners (RCGP), to deliver the Foundation Day lecture. It is titled Healthcare Now and For The Future.Professor Stokes-Lampard is Chair of the RCGP, the UK’s largest Medical Royal College, representing over 52,000 family doctors across the UK and internationally. During her time as Chair she has had an exceptionally high profile and traveled extensively, building alliances and collaborating across the breadth of health and social care with the aim of improving the working life for GPs and insuring the highest possible standards of care for all.
There will be a drinks reception following the lecture.

https://www.kent.ac.uk/events/event/39958/foundation-day-lecture-healthcare-now-and-for-the-future?fbclid=IwAR0PZm25inoSGxNFdQQ_Qk7KtlckI3yeWBRkAgobi6QAPgnF-wkIr2_UPwo

Helen Jayne Stokes-Lampard FRCGP is a British medical academic and a general practitioner. She is Chair of the Royal College of General Practitioners, the UK’s largest Medical Royal College, representing over 52,000 family doctors across the UK. She has an interest in women’s health. and her lecture was brilliant and showed that the NHS is fighting back and has 5 year plans no matter what the political problems.

We then had drinks where Ray almost past out with the heat and noise as standing for these meetings is just not on and I must always find him a seat. he perked up and enjoyed the food bless him.

So today has been a resting day as we get ready for another busy week next week.

 

 

 

 

A Diary of A Mesowarrior living with Mesothelioma #mesothelioma #asbestos — Race for Meso at Worthing for the Mavis Nye Foundation

 

 

 

 

 

 

 

We had a date for an event at Worthing Yesterday–A fun 5k run/walk to raise money and awareness of mesothelioma cancer (cancer you get from exposure to asbestos ) this is in memory of my dad Steve Tuffill who I lost January ’17.

The meeting point was across from Steyne gardens on the seafront all the way to George v and back.

Everyone had to come wearing blue

Easy —

No way engineering works at Rainham to Rochester held us up badly even though we got the 6.30 train to London.

So it was watching the clock all the way. We did arrive at Worthing and got a taxi to the Seafront and arrived 5 mins for the off.

 

 

 

 

 

 

 

 

We made it !!

Angie Mackrell was so pleased I did and there was time for a quick hug and then she started the Run

 

 

 

 

 

 

 

So many young children joining in with such enthusiasm it was a really happy occasion that had a sad background to it.

As they ran off Ray and I sneaked a hot chocolate in a nice old fashioned seaside cafe and then came back to watch the runners come back to the finishing line.

 

 

 

 

 

 

Angie has taken a video and pictures so I will add when she has published them. Everyone was so happy they had achieved the mission

https://www.worthingherald.co.uk/news/people/worthing-charity-run-returns-in-aid-of-rare-cancer-research-1-9033517?fbclid=IwAR050p5Wp66vyaPupllIl2FS1Vu2hnGrDZ4Ew3451CwO4_7V-cdxTsezTGs

 

 

 

 

 

 

Miles for Meso was set up by Worthing’s Angie Mackrell in memory of her father, Steve Tuffill, who passed away in 2017 after suffering from mesothelioma, a rare form of lung cancer.

 

 

 

 

 

 

 

 

 

Race over we said our goodbyes and walked to the pier then into the high Street caught a bus to the station and was soon on the train again with the bus change at Rainham meant we arrived home so very tired.

We were soon in bed and sleeping.

 

A Diary of a Mesowarrior Living With Mesothelioma #mesothelioma #asbestos — Life is Whirl of appointments

 

 

 

 

 

 

I feel so naughty as I haven’t written a blog since my birthday.

My life is now taken over by the HYPER trial Only at the Marsden And only for the patient that has pembro rechallenge that has stopped as it is a trial to kick Keytruda back into action https://www.cancerresearchuk.org/about-cancer/find-a-clinical-trial/a-trial-of-pembrolizumab-and-a-new-drug-called-guadecitabine-for-people-with-solid-tumours-hyper.

The first week is travel each day to the Marsden

 

 

 

 

 

Monday is for blood to be taken to know you can have the drug.

Tuesday Wednesday Thursday Friday is the drug.

Then the next week is Bloods on a Tuesday Thursday

Then the next week is blood on a Tuesday.

Then the next round of a week of the drug

Bi-Ops and Ct scans are also put in the diary.

It is really very hard to fit time for yourself in.

On top of this, the dosage is very high and no one has tolerated the high dose yet.

My blood was playing up so the Doctor stopped my injections that week. Then the same again the next week. This put my diary out and I couldn’t go to IOSH or Contamination Expo. I was so upset but the Doc said its either your Talking or the trial.

I did sneak in my talk to MSD at the British Museum with Ray. My sense of humor was still there as we made everyone laugh.

I began to stop opening my bowels and then my bladder stopped. So much pain I couldn’t get out of bed one day.

I took my 8 packets of Movocol —-nothing. Then on the Friday nature worked in one explosion.

 

 

 

 

 

 

 

 

 

I was back to normal and so was my bladder. A sigh of relief.

So Monday blood back to normal I have had a week of the drug.

We get up at 5pm and travel to the Marsden 8.30 I receive the drug and then I find Ray asleep and we travel home.

I’m back indoors by 11.30. So that is OK.

We did sneak a trip to London to Soho to the Launch of 12Kings Bench wonderful book

1st Edition Practice Area: Damages, Dispute Resolution, Tort
ISBN: 9780414071698
Published by: Sweet & Maxwell
General Editors:Harry Steinberg QC; Michael Rawlinson QC; James Beeton
sweetandmaxwell.co.uk/Catalogue/ProductDetails.aspx…… #asbestos #mesothelioma

 

 

 

 

 

 

 

 

 

Sweet & Maxwell to publish a book on asbestos claims written by 12KBW barristers
6 Aug 2019
On 22 August 2019, Sweet & Maxwell will publish the first edition of Asbestos: Law & Litigation. The book is a comprehensive guide to the legal and practical aspects of claims for asbestos-related injury in the UK. It includes contributions from Dr Robin Rudd and Dr John Moore-Gillon, Master Eastman, and specialist barristers in 12KBW’s Asbestos Team. The book covers the history and use of asbestos, the asbestos diseases, the common law and statutory duties relevant to civil claims, and attendant issues relating to insurance, limitation, assessment of damages, state payment schemes, and procedure.
The general editors are Harry Steinberg QC, Michael Rawlinson QC, and James Beeton, all of whom are barristers at 12KBW.

https://www.sweetandmaxwell.co.uk/Catalogue/ProductDetails.aspx?productid=42638802&recordid=9925 

I have a copy of the book which I will read on all these visits to the Marsden.

We also have had so many events going on which I will write about separately people deserve a huge thank you for all the hard work running swimming and even playing Pool.

Tomorrow we are at Worthing to back a lovely mesowarrior who lost her father and is running with a team for Mavis Nye Foundation Great it’s on a Saturday I knew I wouldn’t be at the Marsden.

Monday I have a Scan

Tuesday Ray has a MRI

Wednesday I have a Bi-Op and so it goes on. This had better work. Time will tell.

 

 

 

A Diary Of A Mesowarrior living with #Mesothelioma #asbestos — No Party for me just a Port fitted

 

 

 

 

 

 

 

 

Happy birthday to me on the 27th but I didn’t see much of it. Off to the Marsden to have a Port fitted !!!easy !!! WRONG!!

We got up at 4am to get on the road for 5.30am as the appointment was 7.30am

Lucky the hold ups weren’t to bad but the road was packed as it was the first day after the bank Holiday.

We had a great one as the sun shone and we also sold our Motor Home as we knew that time would come on day and feel it is the right time now.

We arrived and went to the ward but I was told we had been booked into Robert Tiffany ward.

We arrived a the Private Ward and it was very nice lots of nurses to make sure I settled in and socks on as well as a gown. Met the Doctor and then the long long wait.

I had been nil by mouth for 6pm the night before and no drinks after 6am Tuesday. We were so bored watching telly.

They finally came up for me 1.15pm.

I could have had extra hours at home.

The doctors were good and explained all the op and I had a cover over my head as he went just under my shoulder blade. I drifted off to sleep so I didn’t know much more and came back around while he was stitching me up.

You received local anaesthesia during your port placement. As the anaesthesia wears off, you may feel some pain and discomfort from your procedure. The site where your catheter was placed may be sore, bruised, minimally swelling or slightly bleeding. …Pain medicine works better if you take it before the pain gets bad.

They insert the port under the skin, usually on your chest, and the attached tube goes into a vein near the heart. You can see a small bump underneath your skin where the port is. A special needle is passed through your skin into the port to give your chemotherapy into the vein.

So judging by that info everything went well.

I was returned back to the ward and arrangements were made for a Xray to make sure it was in the right position.

I went for that Xray at 3.30 and had to wait for the results which were “Yes its in the right position”

I got dressed and went to Oak ward for bloods to be taken and it worked well.

I waited for the Doctor to come and see us but he wanted to wait for blood results.

“Please let me go home if there is anything wrong I promise to come back tomorrow”

I have been up since 4am I have been through all the hanging around for the Op with no food no water I truly have had enough. In fact I was near to rears with exhaustion.

as we walked out at 6pm.

Ray paid the parking £14.00 and I fell into the car.

There was an accident on the M25 and rubber neckers held our side up. We arrived in doors at 8.30pm.

As I said to my son I cant complain as what option  have I if I say this is to much I die earlier than I need to.

I slept all next day Wednesday was a blur to me. I had taken regular Paracetamol to dull the pain.

Today Im awake at last the pain has subsided. I do recommend a Port to a PICC Line honest.

I had so many Birthday Cards and messages on Face Book also lovely Flowers and presents cam through the post

burst

burst

 

 

 

I

Well its a couple of days now since we sold the van. End of an era. I miss not seeing it parked up. Stupidly I said today I wonder how it feels in a strange place where no one loves it. But we have memories of over 26 years camping. But now we are passed it.I hope someone buys it and gets as much pleasure as we did. We now have different priorities. Time to move on. We have been sorting through all the stuff that was in it. So manny clothes, pots pans crockery. We left so much in it because we dont have the room.