Living With Mesothelioma -My Diary- My 8th MK3475 infusion


I didn’t sleep at all last night. The fear of overlaying stopped me. What a waste of a lovely cosy bed.

Finally I could get up 4.30 am and got ready for the journey to the Royal Marsden. It was still dark as Ray walked Louis and then we started our drive But Dawn happened and we had a blazing sun pop up to say hello.

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The M20 was great, if a little busy as the sun rose up from its sleep but the M26 got busier and as we travelled on the M25 we had our usual half an hour of hold ups. Then the local traffic to sutton was horrendous. We arrived though at 8am and I booked in. I sat in the waiting room where there was another lady. I didn’t hear my name called just I knew that lady got up and she went in. I sat there and an hour had gone by. The nurses rushed in and said that the lady had gone in under my name and was even answering to Mavis as they put her in a bed. How weird.

We really laughed and joked  and the lady though didn’t talk to me from there on. So where I was going to be bed 4 they had to change all the paperwork to bed 3.

My PICC line preformed so well as bloods were soon taken and off to the Lab.

I was weighed and and then I waited for the Doctor to see me.

The Doc soon turned up and he was one of the trial Specialists. He said did I know how good my Scans were. I told him I did. He said that my shrinkage was excellent. I had already been told that there are two of us with a great volume of shrinkage. A young girl and myself. So now they have to start investigating why.

I asked the Doctor, were they pleased, Yes, he replied  but its not the volume of shrinkage thats important but the long term sustainable shrinkage that maters. He is pleased with my health and the condition of my body that I can go on. Only stopping if I get ill or I deteriorate in anyway.

I asked if its OK to start talking about it and he said. By all means so long as I did not generalise and only talk of my own experience as Mesothelioma patients are all different and their disease is made up of so many different Physiology. I said I wanted everyone on the trial and he said that is impossible as there are so many criterias to this trial but that they are going to keep going down the path of Immunotherapy as it seems to be giving the best results.

More trials are being worked on over the next 2 years but they have so much investigation to do, as they now need to know why it has worked on me. I already give extra blood each visit for them to look at my DNA etc etc to see why I got Mesothelioma but now they are working on Why Im responding so well. This really pleases me as I always wanted for them to look at my DNA and I would love them to look at Rays to see why he doesn’t have a Cancer gene and why he doesn’t have Mesothelioma.

Talking to Ray he would really like to volunteer so we will ask.

After 2 hours the result came in that my bloods were good and that they are making my drug up. I wanted to go and visit a Mesowarrior who has just been diagnosed and had come for a scan result on Thursday and had been kept in as the scan had shown it was in his stomach as well. All this in 3 months after living a normal life. I know how that shocks everyone, we are so healthy and then bang we cant breath and we are never the same again..

I took a bleeper and off Ray and I went from the East Wing to the West Wing. I found the ward and asked for our Warrior. They allowed me in to see him. Bless him he has an Infection and is on Oxygen.

Ray and I had a chat too his lovely son and we have swapped details and will keep in touch. I couldn’t stay long as I had to get back in my ward for my lunch.

I got back and Lunch was served. cauliflower cheese . A Doctor walked by and stopped and said “That smells divine” you dont hear that very often about hospital food never mind from a Doc.

2pm my drug arrived and I was all set up on the infusion machine. Half an hour and that was finished and I had a flush for 10 mins.

The nurse then gave me all we need to flush my PICC line at home now that Ray is trained to clean and flush it.

So I was set to go home. Everyone shouts out bye. They are such a lovely bunch of people.

The journey home was very good traffic was easy until we got to the A249 and they are going to be doing road works for a few weeks. The jam was horrendous I do hope they sort that out.

A249 road works for NINE WEEKS for new water pipes. So be warned all my friends that us this cut from the M20 to the M2.to get to the coast or Dover fro the Ferries or Tunnel.

Rays Blog

http://mesoandme.wordpress.com/2014/09/22/monday-100/

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