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.


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








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.


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.