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.
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.