Living With Mesothelioma-My Diary- Week 3 of the MK375 PDL Trial at the Royal Marsden


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Once again we got up at 4am to get ready for the hospital run to the Royal Marsden. I love a slow morning coffee and  breakfast so as to keep my nerve. Ray likes to take the dog for a walk as he is shut up for a long time. He is so good though and nothing is out of place when we got back home.

The traffic was good only a couple of hold ups so we called in st Clacketts Lane Service station. We picked up a bag of sweets but at £3.00 a packet we said that was dear and when we did buy them at the hospital they were only £1.49. When I told the lady serving us she said she knew and if we buy them at the hospital the profit goes to the Hospital Fund raising. I will remember that in future.

So with a busy but good journey we arrived at 8am and went to Oak ward and booked in.

Alistair and his wife came into the waiting room and we were comparing how we had felt the past 2 weeks.

We had bloods taken, 9 files were filled up for testing to see just what the drug was doing to us. While in there Joanne came in and surprised me. she is the daughter of our camping friends and I was really pleased to see her. She is Senior Ward Clerk on OPD. We had a quick chat and I hope I will see her again. She was hobbling in a medical boot but at least that means she is mobile again after an Op on her foot.

Then we went back to the waiting room to wait for the Doctor.

I was called in and he asked how had I coped.

I explained about the pain getting worse in the ribs and very sore to touch. I explained that I had loads of energy the first week and then last week went down hill. No energy always sleeping for two hours then awake. A runny nose and shivers down my back and the coughing. He noted it all down and said they are all the side effects. I was happy to hear that. So I hadn’t had a virus. I really should then give in and sleep when my body said so and live life again when Im awake.

When you think how bad Chemo was this is a party.

Very sad to hear though that the trial has been closed now to others. Im so so glad I didn’t hesitate. So pleased I grabbed this chance with both hands.

So disappointed that other Warriors wont get the chance.  I wish they would up the spaces from 375 around the world. Maybe if it is a great success they will fast track it and if I do well on it I will push for that to happen.

We had to go away to wait for the blood results so taking a Bleeper we bought a coffee and a cake.

Funny enough I had asked about my weight and what we should and shouldn’t eat. I was given a little booklet but reading it it does say not to loose weight or they will take you off the trial. So maybe a little little bit should come off and i can eat healthy. But I said to Ray I look at food and just don’t fancy it. So I look at a cake. I really must sort it out.

We went back to wait and the results came through good so defo no virus. This meant they start to make the drug up 12 mid day.

We went down to eat a dinner but I didn’t fancy any of it so I had sponge and custard. ?? as I sai I must sort myself out.

Back into the waiting room and Ray dropped right off and I kept shutting my eyes and going off.

2pm we finally was called in for the drug to be administered, I Had to wake Ray up.

Everything was checked and double checked at at last my little bag of hope was put up on the stand and dribbled into my veins. It seems like a golden glow around it. Please work Please!!

So all done and we got out fast to come home. It was a great journey home the roads were clearer and more free flowing.

4.30 entered the house to a ball of wagging tail and head and claws down my legs. My little buddy always so loving waiting for us. Ray took him out and he had a good run around.

I got the kettle on so pleased I was home.

No sickness this time and feeling Ok

 

 

 

 

 

 

 

 

One thought on “Living With Mesothelioma-My Diary- Week 3 of the MK375 PDL Trial at the Royal Marsden

  1. Keep fighting Mave you are doing so well and an inspiration to others. I only wish my Dad Gary Walker could have had this trial. You are so positive!!!!! xxx

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