A Diary Of A Meso warrior With #Mesothelioma #Asbestos Disease -My TSSG Meeting


feet-up

Yesterday was a very relaxing morning as we had time to spend in doors and do the housework. No rushing off to London on trains that was just great and we put our feet up.

We set off to East Malling for our duties as Patient Rep and Carer at the Lung Site Specific Group.

A lunch was provided sponsored by Bristol Myers Squibb which was very nice and very welcome by the Doctors and Nurses tha attend these meetings.

I like to share what we talk about in these meetings in the hope of attracting more Patients to join in as the Patients Voice is appreciated.

We reviewed that minutes from the last meeting (I didn’t attend as I was still getting over iMIG and when i think back I realise how much stronger I have got since may.)

A Clinical Update Quality Surveillance I think more work needs to be done on this to get it working more efficient. Figures have to be right or it just isn’t going to work.

There were figures given for Lung cancer so I checked it up. The figures are going up all the time this is for 2014  http://www.cancerresearchuk.org/health-professional/cancer-statistics/statistics-by-cancer-type/lung-cancer/mortality   

A National Audit is soon to be published again.

Plurideseis is now being carried out locally which is a great idea as travelling to London was the hardest thing after diagnosis. Traveling on the train to Guys and very hard for visitors then the steps you have to climb to the station when i was released to come home. with the porthole and drain which I was so scared someone would knock all so unerving.

The new lung pathway of care was discussed and that needs to be tweaked.

Then we heard the best presentation of Immunotherapy that I have heard .

Doctor Shah  has been doing a wonderful trial for Lung Cancer and I was enthralled to hear that it was Immunotherapy against Chemo. No Placebo. AND if the Chemotherapy  wasnt working the patient could cross over to the drug. Now that needs to be carried out on all trials something I never understood. We hate the word Placebo and it puts a lot of patients off of trials. I will bring this up at my meeting with Merk

We had a video and presentation about

https://www.youtube.com/watch?v=ZT-NzQI5F84 

Fascinating to watch.

The New group that is being formed for Mesothelioma sufferers was Introduced by Ms Townsend.

The LASAG London and South East Asbestos Group. I did say that Medway would be best because it’s a Hot Spot but then it was suggested if the added it to Lung Group it would then attract more people.

Then it was center stage for CNS Nurses and the problem we have in east Kent of  a shortage.

My CNS nurse was coping well but then they gave her Margate to look after so she is stretched over 400 [patients not the recommended 100.

I handed in a letter of I wrote to the Board and my reply which was passed on to a Network group to see if they can raise some finances for another CNS.

It was a great meeting and I do love to be so involved as I then keep up to date with what is happening in my local area.

Next meeting is in May

 

 

 

 

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