London Hazard Center Mesothelioma Action Day

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wonderwoman lhc

 

Mavis Nye,Who has been fighting  mesothelioma for  7 years has an oportunity to talk to at the Mesothelioma Action Day on Friday 1 July  in London.

Mavis will talk about that wonderful day we had in Nov 2015 when the Scan Results really shocked everyone
From her Blog of that day :-
We got to the Royal Marsden very smoothly not much of a hole up.I was having bloods done early and waiting for the Doctor in no time.
It was scan result day and so we sat waiting. Well I didn’t need to get a print off this time. There is no active Mesothelioma in my Lungs.
The tumours are there but there is no active Mesothelioma in them.
We couldn’t take that in, there was a silence and we just looked at one another.
The Doctor said had we any questions and I didn’t but I have now. I know I can keep emailing and asking
I Still stay on the trial that goes on until May 2016 but we have to be careful that the Drug doesn’t cause  any Inflammation on my lungs. I do get out of breath but he said it will be like when I first lost my breath, really difficult.
Any of the organs could have inflammation so I will keep my eyes out for any trouble.
Also the Immune system will work in a way that it recognises the mesothelioma as an enemy and  attacks it building up a little army that remembers when it see the Mesothelioma again and attacks. So the effects last a long time and stops any tumours from progressing again.
Being honest and saying that the treatment has worked for you and currently there is no active meso but there is still a long way to go  to getting a cure for this terrible disease but this is a step in the right direction I do remind people that treatment unfortunately doesn’t work for everyone. We mustn’t give false hope. But We can give hope xx
So I’m still very lonely in the UK and the only Meoswarrior but hopefully they will get the Phase 3 going in the New year.
We walked away to the waiting room to try and get our minds around it all and then went to the Restaurant but I wasn’t really Hungary.
Back in the waiting room and we didn’t have to wait long  and soon called because the drug was ready. There was lots of laughter and cuddles as each person heard the news.
That was it the drug in me again we set off for home where I told a few friends and than my Son and DIL who are as shocked as we are. We have been through so much in 7 years come February.
I felt very weird in the car and fell asleep. On waking I did feel so much better.
My son says we will crack open a Bottle when we visit tomorrow.

Monday

Ive been busy during the past few weeks putting together  my latest 2 books. And Ive been frantically getting  them published. Last night I  did  this with the down loadable epub version. Today After several rejections and corrections I have now managed to  get the paperback book published also.

Compared to  earlier  books it went quite well.

Friday

PHOTO_20160624A_134535Funny how something that you have reservations about ,turns out to be a good decision.

I  was a bit  miffed about  going to Duxford for  a conference.  We set off in the Van yesterday so that we could take louis with us. WE camped overnight in Cambridge Campsite. My god  what a storm we had several pitches were flooded. We were ok . This morning we packed up and set off the 10 minute drive to  the museum conference. One big hic cup at one junction getting on to the M11 I ran a red light. I just didnt see it I was trying to  find the right exit. After Mavis yelled at me it was too late.

We arrived and parked up  nice and early. Settled louis and went in to register. Tea or coffee and meeting old faces quick chatting before the start.

It was one of the most interesting ones Ive been to. I did the pre lunch session and decided to  sit with louis after lunch.

I did manage a quick toddle round the museum and took a few pictures. We actually  watched a Spitfire  taxi on the runway and then watch it take off all exciting.

After a nice lunch I took louis for a trot  around the area and then back to the van. He went to sleep  . I took the hint and joined him. Later I was rudely  woken up  the rain was tipping it down and I  had the roof open for fresh air so after a surprise dowsing I closed it and  checked Itv news to find Cameron had resigned.

just after 4pm I decided to walk back  and meet Mavis but she was already on her way back. But at that  moment the clouds opened and it tipped it down again. In her haste to get into the van she missed her footing and I heard a yell for help and there she was laid back up to her ears in bushes flat on her back unable to get up. I couldnt get out to help her. Louis was barking for a moment things were manic. But she managed to  get up and in the dry. WE decided Ok its time to call it a day so we set off for home. The anticipated problem journey was a good  journey home and we drove out of the rain and into the blue skies of home. A nice experience afterall.

Tuesday

My new bedroom wall clock came yesterday. Oh god bloody thing kept me awake all night. TICK TOC TICK TOC.

Ive been on youtube and found a solution to quiet it down. Seems to have worked on mt desk but  wait till bedtime. Louis could end up wearing it for a hat  if it dont stop.

Monday

Got a call back from plumber. To replace the control valve is about  £230, plus labour. Ok So I asked since only a few months ago  I replaced the other  big valve in the boiler at well over £250 . If I replace this one what other expensive item is likely to go. Thats  a good question anything could go Thats the nature of things. Ok give me a price to replace the boiler. So I got a price of between £1300 and £1800 plus TRV`s . So I said OK  go for the £1800 which was top of the range, For a difference of £400  quid Its not worth skimping. Because the first call out could cost me that. So now we have agreed  a price and set a date for 4 July. He could do it this week but we are not available. Its best to get it sorted during the summer when  we dont  need heating.

Saturday

What a lovely day. Our son and daughter in law came  to  visit  early this morning bearing Fathers day  prezzy. A nice card  a nice T shirt but best of all my Favorite. A Home made rhubarb Crumble. And a Large tub of Ice Cream. But  before  eating that we went to Herne Bay Market . WE had a good old rummage round the market  Terry bought bits and bobs so did Nicky. Mavis went Mad and bought another walking stick. As she was looking  at them the bloke said good quality those. £10.oo  I said I bought one recently on line for £4.99. What did he say he asked Mavis she said £4.99 on line. OH not  quality like these . He said there’s one  down the line here for £5.00 but there rubbish. I walked away in disgust but Mavis put her hand out for £10.00. At home  comparison  NO Difference.

Then we went on to  find a nice place to eat. We wanted to celebrate mavis end of 2 years on keytruda. The meal was very good. After that we did a tour of the local Garden centres. Then finally  bachk home. Where quickly we had hot  crumble . Delicious. WE were all tired  but have had a good day out. But all things must come to an end and  it was getting late and they had a 2 hour drive home and had to leave us.

For me it was a good fathers day.

Friday

Well  we had our Marsden day. The usual up at  5 am on the road at 6am  . Much to my surprise they were expecting us. But  there was conflicting views as to just how many sessions Mavis has had. By my  count up I say we attended 54 times over the past 2 years that  extra 2 takes account of the 2 that the drug was cancelled because she was ill.  Marsden told us on our last visit that we had completed the 52nd and the trial was now over. But the phone call at  845pm on wednesday  telling us that we had only completed 50 and that we must attend  for 2 more was a surprise. Today the doctor said it was protocol from Merc that  said we must  do 2 more. But  we spoke to  …… no names here… Who said it was certain that we HAD completed 52 complete drug days. All  confusing. But  Mavis didnt want any fuss as usual so agreed to have 2 more. Now we have had one of those we have one more to go. But  the scan results were no  growth and still  in remission. That word remission was actually used  today instead of  CR. So some improvement there.

It was good to see those  familiar faces again..