A Diary Of A #Mesowarrior Living with #Mesothelioma #Asbestos Ray has had his second treatment on his birthday #Lymphoma







Its been a quiet week as I wanted Ray to rest and let his drug work.

He has been good and took life easy but he has no side effects so it is looking good and that his treatment like mine isn’t going to interfere with our day to day work.

Lots of computer work and telephone calls have kept us busy and the sun has shone all week. February and we have had weather like Spain, how amazing is that. Walking Lou has been pleasant.

We collected the new car and Whitstable Harbour Garage has been wonderful as usual. We all rely on them around here and we usually get a smashing logo put on the back but the have stopped doing that now.








We travelled to Canterbury on Friday for Rays treatment. The surprise was the nurses singing happy birthday to him and giving him a present. That bought a great big grin to his face.

His treatment was put in faster this week so it was better. We met a couple of friends that we meet up with at our LASAG meet. A lovely Mesowarrior and his wife. His treatment was longer than ours so we came away earlier. Ray slept most of the time as the histamine tends to do that to him but it’s not a bad thing really as the day goes even quicker.

For non-Hodgkin lymphoma, Rituximab is a monoclonal antibody, which is a type of targeted drug.
Rituximab is a treatment for chronic lymphocytic leukaemia (CLL) and some types of non-Hodgkin lymphoma. It is also used for some non cancer related illnesses.
You usually start by having rituximab once a week for 4 weeks. You may have treatment every 3 weeks if you have the rituximab with other medicines.
You often have rituximab with CHOP chemotherapy to make R-CHOP. You usually have 8 of the treatments, so the treatment lasts 6 months.But Ray is having the drug on its own so just 4 weeks.
If the initial treatment works well, you may then go on to have further rituximab treatment as maintenance therapy. You have this treatment every 2 or 3 months for 2 years.

Rituximab targets a protein called CD20 on the surface of the leukaemia and lymphoma cells. The antibody sticks to all the CD20 proteins it finds. Then the cells of the immune system pick out the marked cells and kill them.

So it all seems straight forward Except he has a very slow heartbeat. He could be super fit ???? or there is a reason and he has been told to go to see his GP Generally, you want a slow heart rate when you’re resting. It’s a sign of good health. But if it’s too slow, it could be a symptom of a condition called bradycardia.
Normally, your heart beats 60 to 100 times a minute when you’re at rest. But with bradycardia, it goes down to less than 60 beats a minute.
This might not cause a problem for some people. But it could be a clue that you have an issue with the electrical system in your heart. You need to see a doctor who can figure out why it’s beating slowly and if you should get treatment.
Heart Basics
Electrical signals travel through the heart’s four chambers — two on the top called the atria and below them, the two ventricles. These signals prompt it to beat in a steady rhythm. But pulses don’t always fire off as they should.
This creates what’s called arrhythmias, or abnormal heartbeats.
Some conditions cause the heart to beat too fast or to flutter. With bradycardia, it’s the opposite. The electrical problem slows down the time in between heartbeats.

We are going to wait until he has finished treatment as Ray feels he is going through enough at the moment.

I do agree.

He came home and he came over all funny again. Shivering so I said BED!!! which he did and felt so much better laying flat. He slept well all night and felt so good the next day.

We have relaxed all weekend and now ready for me to go to the Royal Marsden.


A Diary Of A #Mesowarrior #asbestos Living With #Mesothelioma — We spoke at Sir Robert MacAlpine @SRM and Ray started his treatment for #Lymphoma

This week has been very very busy.

Marsden on Monday

Bought a new car on Tuesday as we need a younger car to keep traveling to the Royal Marsden as my scan is showing growth and a new drug on the horizon for treatment we know we have to keep driving.

There are plans that we could go by train in an emergency or if Ray is ill in his treatment for Lymphoma.








A new car is all bought and we will pick up this Monday.  We have always loved quicky cars says me that loved and droved Skodas when all the jokes were around.

So the way the top goes right down on this car fascinates me, and the eyebrows make me laugh.

We attended the LASAG meeting and listened to a Leigh Day Lawyer explain about the legal side of mesothelioma so that was an interesting day.

Wednesday we went to London to the Foundations board meeting and then Thursday we were back in the same area to present a talk to Sir Robert MacAlpine Company.

Wow!! I was so in oar of being asked to talk here.

The Company is rebuilding London with so many great projects even the site that fascinates me as we arrive in London by trial. Battersea Power Station








How it will look when completed.












Broadgate Estates where we presented our talks is further round new Liverpool Street Station

Ray and I were asked to tell our story in such a grand place.

We arrived and met such lovely people and couldn’t believe the room was crammed with people from all the various sites in all different employment within the company.

The room was so quiet and so intense that I couldn’t judge whether they found it interesting. They were so young to us but when we finished so many spoke and asked questions. We really did hit home that safety is the most important word.

Thank you to everyone that was there Especial Valerie you made us so welcome x

I will post the video that they did when I receive it.










With all that behind us, we came to Friday Rays treatment day at Canterbury.

We arrived early as neither of us could sleep.

It was weird walking into the day ward exactly 10 years ago when all my story started and now it was Rays turn with a different cancer Lymphoma.


Lymphomas are cancers that start in the lymphatic system – a network of glands and thin tubes that run through your body. If you have Hodgkin lymphoma, certain types of white blood cells in your lymphatic system – called Reed-Sternberg cells – go haywire. The cells multiply and collect around glands and other parts of the lymphatic system, causing tumors to form. And the Hodgkin bit? That’s Thomas Hodgkin – the doctor who discovered this type of cancer back in 1832.

He was given paracetamol and an infusion of antihistamine and steroids to prepare his body for any side effects of the drug, an immunotherapy drug, rituximab.

They start off very slowly and they monitor the vital signs every 15mins then every half hour. Increasing the speed of the drug.

Ray slept through most of it with me saying “How do you feel now”every time he stirred.

The ward has got so much busier than we were here 5 years ago and yet the staff hasn’t been expanded so when the beeps on the chemo machines bleeped there was a long wait for patients to have the bags of drugs changed. The old story of the NHS isn’t it.

It was a long day and at 5.30pm we were able t walk out into the sun and drive home.

Ray sat on the settee and fell asleep so I made him go to bed and then he looked really rough.

He came down the passageway to the bathroom later and looked better and he seems to have slept all night. Just waiting for him to stir to see what he feels like today.

So that was our week. the highs and lows of a Patients and Carer with Cancer. The roles reverse depending on what day it is I’m a patient on Monday and carer on Friday and vise the versa for Ray. We will win through



A Diary OF a #Mesowarrior Living With #Mesothelioma #Asbestos –Jack Frost visited us and caused trouble. Scan result also trouble.

We woke up 4.45 to go to the Royal Marsden for my treatment but Ray took the dog for a walk first and when he came back he said he had to go and de Ice the car.

So I finished getting ready and then locked up and joined him.

He was so worried as he couldn’t get the car into 2nd gear so I said well get going in 2nd and see what happens.

It worked ok and we set off. Then in the traffic jam 1st worked but 5th stopped so we held our breath and got to the Royal Masden on time.

Then as I got out of the car I didn’t realize that puddle was all ice and bang I was on my bottom. A man came over and lifted me up. What a gentleman, I kept thanking him but my trousers were soaked on the bottom. Embarrassed.

That’s just how I felt.

When I went in for my blood to be taken I had to sit on a towel and that helped to dry.

When I went in to see the Doctor he told us that my scan is showing the new Meso is growing, very slow growth but the thickening is showing that cancer cells are beginning to multiply.

Not the news I wanted to hear but he said that as it was slow and hardly measurable they are going to go on to the next scan.

So he passed the drug for this week.

It doesn’t hit you, it doesn’t compute, your brain won’t let it.

They have the next trial for me so they can’t do any more than they are already doing. The fight goes on 









So I pulled my socks up and left the room to go out there and keep fighting this disease it is not going to win.

Off we went to the canteen and a lovely hot chocolate —comfort drink that !!

On returning to the waiting room I did a crossword and then fell asleep but was woken up by Rex as my drug was ready.

Ray gave his Valentine card to his Fav nurse Carol who cuddled and kissed him.








A man in the shop had asked Ray who was it for the wife and Ray had said no my bit on the side !!!

The drug was soon running through my veins and I had a long chat with my Trial nurse about what was going to happen next so I’m already if it is bad news next scan but all fingers are crossed and we will meet it head-on.

Now its Rays turn on Friday, let another battle begin.

We said our goodbyes and do you know the car behaved itself. The gears were back to normal. Was it really that cold this morning that it froze the gears ??

https://mydonate.bt.com/fundraisers/mavisnye-cyclechallenge?fbclid=IwAR2NXIhdjZEf1PW2IVR9ugVXIytB1viDblSCyUhj5_qhBuTTcR4XIIJb7LU Event details
Mavis Nye Beacon Clycle Challenge
After a visit to our factory from Mavis and Ray Nye, our staff were inspired to do something to help raise money for Mavis’s fantastic charity.
We have a team of cyclist who will be embarking on a gruelling challenge to help raise as much money as possible for the Mavis Nye foundation and also help raise awareness about mesothelioma and other lung diseases.
We plan to set of from our most Northerly depot in Washington in Tyne and Wear, we’ll cycle down to our Leeds depot on day one. The next day we’ll set off from Leeds down to our central office and headquarters in Desborough in Northamptonshire. On the third and final day we’ll set off from Desborough down to our most Southerly office in West Thurrock just outside London.
The whole trip will be in excess of 350 miles, Mavis and Ray Nye will be waiting at out final location to receive our cyclist as they finish their mammoth journey.
Please give generously to this amazing charity which has done wonders for developing treatments for mesothelioma suffers.
Event date
29-May-2019 00:00 –
31-May-2019 00:00
Event type
Mavis Nye Beacon Cycle Challenge






Please Donate or even better join in get the bike out for May

Goodnight Dr Mags our little dragonfly #Mesothelioma #asbestos









We have lost our Mags Portman –Our hearts are breaking as she was so wonderful. Our own Doctor suffering with our disease  Mesothelioma when she had given so much to HIV. She set up the Terence Higgins Fund https://inews.co.uk/news/health/prep-hiv-fund-low-income-nhs-terrence-higgins-trust/?fbclid=IwAR1uU2g7k3kXfbY50dy4k6yaPGaxkIHF2llK8fvHCRftUDgYn4koUKb7nRw

Mags passed yesterday Morning at the Hospice she went into Sunday. I have had messages from her right up to last week becuse she wanted to go into the MIST trial sadly she didn’t make that.

Our love and hugs go out to her husband Martin and the two very young children. Its those that we think off, that’s the problem with Meso in younger people they leave behind very young children we are seeing a newer trend -it’s not an old man’s disease we have reached that peak now we are seeing a newer peak of younger Mesowarriors so so sad

Mags wrote a blog where she shared her journey https://notdoingthingsbyhalf.wordpress.com/

Her first write up was :-

Realise that in my last post I referred to my pending CT scan as though it was all arranged. In fact, it wasn’t quite a simple as that.
I also realise that I hadn’t even told you what all the fuss was about, why I was so worried about the prospect of needing a CT… Well.
In the end, a GP called me back and told me about my chest Xray. She read out the report verbatim. I remember hearing the words “Moderate pleural effusion, loss of lung volume, pleural thickening, fluid in the horizontal fissure, differential diagnosis: infection or malignancy”. Basically, fluid on the lung, with thickening of the membrane around the lung, likely to be due to infection or cancer.
Could it be TB? I was certainly at risk. I had worked on the Infectious Diseases ward at St James Hospital and knew I had virtually no immunity to TB when last checked. But, I knew that I had no other symptoms of TB…. No fevers or night sweats…. DARN!!!!! Now I knew there was a problem, I also knew that it had been going on for a long time, so whatever it turned out to be, was unlikely to be a straightforward infection. I recalled having some right-sided chest pain which resolved spontaneously: my GP confirmed this was as long ago as November 2015. Oh dear. I had put this down to commuting with my bike and having pulled a muscle. I was a “fit” 41y old at the time, why would it have been anything but????!!!!!
My mind went into overdrive. I had left work at Mortimer Market Centre as a doctor, and I arrived home dancing the tightrope between doctor and patient. I needed to know what was going on. At this point, I hadn’t yet been given a date for CT scan.
So, I did what I could do, and contacted a previous colleague and friend, a Consultant in Respiratory Medicine. I felt uncomfortable about doing this and was aware that this opportunity was only available to me because I was a doctor. How on earth did other people cope with being in limbo-land? I was able to justify my actions to myself because I knew that if a colleague contacted me for help, I would do my utmost to support them. We spoke, and he was able to talk me through things.
I had been listed for the Respiratory MDT meeting happening the following week, so this meant that I would definitely get my CT scan before then. I told him I was terrified and would really value seeing him in the clinic as a familiar face (I know, probably stepping over the line a little – sorry). He handled me (and my anxiety) very well and suggested that perhaps he wasn’t the best person to see me, but one of his colleagues Dr Matt Callister or Dr Kirsty Rodger would be. I didn’t know them, or their role, as it had been over 10 years since I had worked in the department. I persuaded myself not to Google them. I was Eternally Grateful for this supportive conversation. Dr John Watson – thank you +++
……..Okay, so I managed to hold off Googling Dr Callister and Rodger for a whole 24 hours. And when I did, it turns out that their specialist interests were Lung Cancer. Hmmm.
So, the CT happened at Leeds General Infirmary. All quite impressive. Not a huge waiting time. Lots of checking and cross-checking of identification and medical history. Didn’t have to wear a gown (yay!). CT contrast makes you feel flushed, heart racing, a bit like taking poppers, I would imagine. It also makes you feel as though you are going to wet yourself – who knew?! I felt that I really should have known this having ordered 100’s of CT scans, but I didn’t. It made me think that perhaps medical/nursing students should actually experience the process of having certain tests, to enable them to be able to explain things to patients more effectively.
The next morning I took the kids to school as usual, arrived home and sat down on the sofa. It was 5 minutes past 9. The home phone rang. No one usually rings this phone, and usually, I don’t answer it. But, I had a feeling that I should answer this call. And I was right…
It was the GP surgery. Could I go down that morning at 11am to see my usual GP? She had asked to see me. Oh. That doesn’t sound good. It felt like each step in the process was confirming what I had dreaded as soon as I’d had the original “call to CT”.
And, of course, I was right. The CT report was pretty horrendous, and I say that as a glass half full person. To me, it was simply confirming what I had expected, and my lovely GP ended up more upset than I was. I took away a copy of the scan report, which I’m glad, as at the time, the extent of disease didn’t really hit me.
Findings: There is irregular, circumferential pleural thickening throughout the right hemithorax associated with a moderate pleural effusion. The pleural disease is nodular and highly suggestive of a malignant process. Passive atelectasis is present in the right lung but no primary lesion or endobronchial disease. The left lung and pleural space are clear and there is no calcification on either side…..
Comment: Malignant looking right-sided pleural disease, for which the differential lies between primary mesothelioma (which seems unlikely in a patient of this age), and metastatic disease.
NB Whenever I have seen the comment “seems unlikely in this patient because..” written in a radiology report, then that differential turns out to be the correct diagnosis….
I walked up the hill from the GP surgery, with my other half Martin, to Storie’s cafe in Oakwood http://www.storiescafe.co.uk – worth a visit if you live in and around Leeds! Makes me think I could be in beloved East London. And yes, I could still walk and cycle uphill!!! Unusually for me I chose to sit facing away from all the other cafe-goers. We sat, and shed some tears, trying to take in the enormity of the result I had just been given. How do you begin to come to terms with a tumour that is circumferential throughout your hemithorax?

I met Mags at Mesothelioma UK’s Patient Carer day but we had been Cyber friends fo some time then.

A doctor coming to me to ask what trial is there, what new treatment can I try. we became such real friends and i added her into my groups and to the Mesowarrior groups. She was so lovely so fragile. I will miss her so much And she is mourned by the Mesothelioma Community and the NHS and far more !!!

Sweet smile on your face as you sleep the pain away,
Resting in God’s arms now, although in the ground your body lay.
He needed another angel in the Heavenly choir and that’s why you had to go.
As you promised, you are still with us watching your children here below.
I never would have imagined the end would be like this, me comforting you.
Holding your hand, telling you not to worry was not an easy thing for me to do.
And even in your weakest hour you tried to comfort me too,
Caressing my face, and calming my soul as only a mother can soothe.
You have always been there through the thick and the thin
No matter what I’ve done, unconditionally your love never wavering.
When I told you of the mistakes I made and all the times people saw me fall
You simply nodded and gently replied ‘so have we all’.
The key to success is learning from the past
Ensuring a brighter future is now the present task.
A pillar of strength even until the end
Fighting all life’s battles, knowing it triumphantly you would win
Pushing me to be the best that you know I can be
Reminding me to keep the faith and allow God to lead me.
Knowing it’s through Christ that I can do all things
And as He never makes a mistake I will come through victoriously.
I miss you more than these words could ever say
The pain in my heart is from one unimaginable day
After I cried all that I could; my eyes still shed countless more tears
And when I try to sleep, I have nightmares of ten-thousand fears
I walk in footsteps on an unsure path
My load feels so heavy I am not sure I will last.
Silly though I may be, I am afraid of life now that you’re gone
Because I’ve always had a mother.
And Mommy, what about my sister and baby brother.
I wish you could have stayed just a little while longer, there’s so much left to do
I wonder if I prayed hard enough and if so, did they get through.
Finding relief in knowing I will see you again someday soon
Remembering all you taught me as my soul I continue to groom
I will walk in footsteps you have walked before me
Seeing the path you walked lead you, Mommy, straight into victory.
So as you sleep Mommy, in the cradle of the Lord,
I am reassured of God’s promises in His Holy Word.
I dream of the day when Heaven’s gates open to receive me
And with your smiling face and loving eyes, reunited once again I will be.

A Diary Of A #Mesowarrior Living with #Mesothelioma #Asbestos– Ray is ready for his cancer treatment next Friday and Mesowarriors were spoken about in parliament yesterday-A day of Mesothelioma Awareness


Oh, how we need spring to pop its head up.

Ray has now joined me with cancer treatment yes he is even going to have Immunotherapy for his Lymphoma much to our surprise.

But he went to the hospital yesterday to do his pretreatment and they play a film. We sat there and laughed as it was all our local doctors and nurses. Dr. Shah from Maidstone was in it talking about chemo, I said to Ray he is going to pop out of there and say “Hi Mavis how are you ” as he always greets me when he sees me.

The thing is Ray is having Immunotherapy and yet they show a film of chemotherapy. They haven’t caught up yet, have they. Immunotherapy is so different and the side effects are not so severe.

But with all that done and blood is taken he is ready for next Friday’s treatment of Rituximab.

They put it into the vein slowly of 6 hours for the first one and monitor for any side effects. If OK next time will be faster. He has a buddy as our friend Tracy who lost her father to meso is going to have it but she has Rheumatoid Arthritis. but they will be able to chat about it each week.


Now that is all planned we know where we are and can work the dates into the diary.

Yesterday in the House of Commons was a great day for Mesothelioma awareness

It was our day in Parliament yesterday check this out SNP MP Peter Grant says it is “disappointing” that the government will not increase payments automatically every year in line with inflation.
He calls for this to be imposed by next year at the latest.
3,000 people lose their lives to mesothelioma every year, he says, noting the former MP for his constituency, John McDougall, died of mesothelioma aged just 60.
Delays to compensation payments were caused by the fact that employers knew if they could keep a case going until the employee died, the payout would be reduced, he says.
“This is an insidious, vile way to treat people”, he adds.


Then A mesowarrior was spoken of which was great for awareness

House Of Commons for Mesothelioma and Asbestos Awareness Dennis Skinner MP speaking in House of Commons today about social security motions including increase in payments for mesothelioma sufferers.