NHS !!!

Well I got a letter offering me an appointment for the scan on my head. But it clashed with the marsden. So I had to change it. Great, best date  was 3 sept. Only  problem is  thats 3 days after my appointment  to get the results of that scan. So If they  have a system  to get results of a scan 3 days before  you have it I am all for it. So I am going to  cancel that and get it changed. Its a  pigging nightmare juggling the marsden  with  traveling all over and fitting in mine in Ashford,Canterbury and at  whitstable.

But good bit today is  we collected Louis from kennels.

Home again

WEll  what a smashing  trip to ESS Safeforce, Daniel treats us like Royalty. colected at the door  to door  fed and watered  . Nice hotel good food. And Richard  worked so hard on the almost 300 mile trip. Magor  jams  coming home but he took shortcut alley runs and what  would have been  over hal hr sitting  still  we  came out  in front of the jam in 5 mins. Well done.

We met old faces again and made new friends. Only downside wat leaving Louis but we can  get him tomorrow bless him.

Poor ole Louis

Well  the rotten part is done Louis is now in  kennells. He was excited and seems keen to go right up to the point where we enter. Then all the dogs start barking. Thats it, arse down legs locked and he aint moving. I dont blame him it is intimidating.Like walking the plank bless him. He is booked till thursday but we will  pick him up early wednesday morning. So we are off  to ESS to give a talk. Its a lovely day again hot already. Its just an overnight stay. I am sure the seagulls wait till Ive cleaned the car then they target it. There is an enormous pile of  crap all down one side again. If you leave it you need a sandblaster to shift it.

Lazy Day

Some days  its hard to remember what day it is. Today Sunday. Not a  nice day a bit fresh.  We have packed a few bits  as we are off to ESS tomorrow to give a presentation to some new members. Ive been tidying up  our presentations. I usually spend hours  amending  changing updating adding, I am never satisfied. I try to do the best I can for Mavis. So Louis goes into Kennels for a couple of nights. Thats the part I hate. I  hate leaving him.

Mesowarriors Anual Meet

Because the forecast was  highest ever temperatures maybe reaching 100 d in London we were hesitant should we go  and suffer the underground. But yes it was hot but the  trains were empty. we arived in london around 11 am and  got on underground. No problems. We were first to reach covent garden we were soon joined by Jill we got  cold drinks and waited for the  rest of the group. We had all  met by 12.30 and slowly we made our way to the venue to eat. very nice.. Not overly impressed with my  lunch. I think it  was one that had been previously cooked and reheated in oven. But  it wasnt for the food it was the company. Good to see old faces again shame  some couldnt make it.

A Dairy Of A Mesowarrior Living With #Mesothelioma #asbestos — On a new trial and in the heatwave we went to a London meet up with #Mesowarrors

 

 

 

 

 

 

 

 

 

So much has happened both medical and personal I dont know where to start.

So lets start at the beginning

On Monday 22nd July saw us going to the Marsden for a scan but I knew the Mr Nasty Junior was growing as pains in that shoulder blade on the left hand side was back, my voice was changing and the ribs hurting.

I had a sore mouth as well so so much was going wrong.

Wednesday again to the Marsden for results and I was right more growth was seen so Im officially off the MK3475-28 trial.

BUT

I signed all the papers for the HyPeR Phase 1 trial, Dose study of Eascalation of Guadecitabine (SG1-110) A second generation Hypo-Methylating Agent in combination woth Pmbro (MK3475) in patients with refractory solid tumours

I have a list of dates which is —Week 1 everyday a injection of the new drug for 5 days and an infusion of pembro on Day 1 phew!! now you know why we bought a new car we had to have reliability.

This all starts on August the 12th

On that day I will have a Bi-Op and just the injection in my tummy of the new drug.

This doesnt mess up any dates I have booked as I can go to the Marsden at 8.30 have the injection then get the train into London my only worry will be if i do get side effects but in these trials they list all the side effects possible its not to say your going to get any.

My only problem was a nurse talking about Macmillan, equipment I need at home and palliative care as running out of options now. I have been running out of options for 10 years its not the way to talk to me. It played on my mind and made me feel so sad. I have had to shake that feeling off and lets get on with it.

So I was so happy to be able to go to London yesterday even though they were saying dont travel because of the heat.

The journey was lovely as the car park at Whitstable and then the trains were all empty as so many people listened to that advice.

The Mesowarriors all met at Coven Garden.

These are a group of warriors that I call the senior ones, the Carers that have lost their loved ones in the 10 years I have known them and they Know Linda Thomas from Australia – as she visits her daughter.

 

 

 

 

 

 

 

We had a lovely meal and a great chat so I feel so much better now and we all said our goodbyes and travelled in the heat back to Whitstable and just as we got out the train there was lightening and rain and we got soaked –well at least it cooled us down.