A Diary Of A Mesowarrior Living With MesotheliomaScan Result more Shrinkage on Keytruda, T Cells, Bruises.


I had a great early ride to the Marsden today —for the sake of my Blood tester friend –yes M2 M20 M26 M25 ha ha !!!   He mentioned how I always talk about the Motorways but when you travel for treatment Motorways are sooo important

We had a long chat about testing blood and he explained he deals with the blood that he sends to Merck for me. So we discussed why mine has worked do well and others fail.

I have been asked why me and here is a good example to show you

t cells

This is how mine matched up all so perfect but those that fail only some or all fail to match up and turn the Immune system on.

I got to the ward and and booked in and was able to show my medal off. I wanted the Medics to know I won it for them as they are the ones that have kept me on this planet.

It caused a lot of excitement.

We had to settle down to bloods being taken and my poor arm washed. It wasn’t all dried blood from the PICC line it was bad bruising. One where a entry failed and then another around where the PICC line is fitted now.

After a good clean it didn’t look so honorific honest it looks so much better well not really but I dont want to make you feel bad.

I had to then go and wait for the doctor and no one knew if i was going to have the drug or not. Sam had other ideas and said next week which Im pleased as then the dates all run ahead and I get another week to make sure Im really recovered.

Sam said it might have been the drug or the antibiotics and I said no it wasn’t the drug I dont want to believe that and he told me off. Poor Sam really doesn’t understand my sense of humour or just how I research everything and work as a patient Rep. Trials mean everything to me and I want everyone to find one as its the first time we can say treatment is now coming through that isnt the poisonous chemo we have had to make do with up to now. We still need chemo as it does play a huge part in shrinking our tumours but we now need the drugs to finish it off. Its so hard finding the right on for each case but combinations will work I truly believe we are on the front line now.

I asked about my scan and Sam went through them. More shrinkage they are really going so flat. It doesn’t sink in each time just what that means. Amazing isnt it really amazing.

shout out 2

We came home early so I was able to make my appointments for a Interview with a lovely lady from the Mail tomorrow and radio Kent Thursday.

Then i had bad news for 2 Mesowarriors. Steve Wride who I have walked through 7 years with has problems

http://doingsomethingpositive.blogspot.co.uk/2016/02/getting-results-and-going-forward.html

His journey is so different to mine I love this couple so much and I have had a long chat tonight

good luck xx my dear friend xxx

Poor Richard another mesowarrior has had a drug failure again. He is with me at the Royal Marsden and I hated to hear that. He has tried so hard bless him and I hope there is another trial for him.

I have more photos come in from The Awards

This is the Official write up.

Mavis, of Whitstable, was diagnosed with a non-curable asbestos cancer known as mesothelioma in 2009. Mavis has turned her battle with mesothelioma into something positive, and is making her voice heard to educate people about this illness. Mavis works extremely hard, and has spoken at conferences and in parliament. She has also raised awareness and educated people through local and national newspapers, radio, TV, Mavis also published her own book in 2010, Meso Warrior, with all proceeds donated to mesothelioma UK.

Mavis offers a support network to other mesothelioma suffers and their families, either by internet, telephone or personal visits, through the group UK Meso Warriors. Mavis has extensively researched into the incurable disease and knows of every medical trial and medication associated.

Mavis is currently on a new drug trial, and is showing promising signs of buying extra time with her life. The new drug requires Mavis to travel the two-hour journey to the Royal Marsden hospital every fortnight for treatment. She has just received her 40th session of the drug, and has remained positive throughout her treatment and uses the time to meet up with other ‘Meso Warriors’ to share stories, advice and laughter. Mavis and her husband Ray, have a strong social presence and both have blogs discussing life with mesothelioma, both from the perspective of the sufferer and the carer. Mavis first set up her blog in June 2009, shortly after she was diagnosed, and has had over 280,000 hits.

Mavis and Ray use the blogs to talk about daily living with Mesothelioma, and research into the incurable cancer.

Nominated by Angela Caulfield Mavis Nye http://britishcitizenawards.co.uk/mavis-nye/ 

 

 

 

 

 

 

 

 

 

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