Living With Mesothelioma-My Diary- Visited a dear friend in Hospital– My Patient Rep Meeting was very interesting- Rays Anniversary of his heart attack

dragon fly 3

A day of rushing around to get everything done so we could get the Kent and Canterbury Hospital Education Centre for our East Kent Partnership Locality Group meet.

Park and Ride and we got there to early so we went to the Restaurant and had a coffee and the last full English they had left.

It was lovely and ray enjoyed his as well.

I went to the meeting and then visited a dear friend. He is a wonderful man that has enjoyed a camping life and that where we met

Dave has had a Heart Transplant at Papworth and i should think he is the longest living patient now as it must be 20 years now.

He has Cancer and has been having chemo but came over hot and cold and was taken to hospital 1 week ago cdiff again. They have stopped the chemo and he will have a scan in 2 months but its looking good an he may not need anymore. The 2 months will give his system a chance to get the cdiff out of the way.

When you see someone ill that was so full of energy its a shock, bless him it was so good to see him and we chatted away but he was getting tired so we left. His wife has had to move to a new bungalow yesterday which bless her heart she has manged with the help of so many friends and neighbours.

So at least she can unpack and get the home reday for when he comes home.

We I think Of Dave I think of this Video and Rex who was visiting met us he said he had been watching this last night. It was a great great night and we laughed so much xx

Get well soon Dave I so admire how you fight and enjoy life xxx


My report of the meeting —-The meeting started as everyone came in and I was so pleased to hear that We are getting a PET/CT Imaging Service 1st April. £87million has been set aside  They are going to stop the mobile unit and 2 hospitals are getting one for the start.

Alliance Medical have produced the leaflets of the guide to hand out for information.

There is a patient information/mobile version.

We were asked what we thought of the information and I said how informative it was.

I learnt something about my Lung Dog meets Tssg-Tumour Site Specific Group Meetings. There is a pathway for Patient Reps. Your first allowed to join the Locality Meets and when you are confident you then get to join the TSSG Meets. I was thrown in at the deep end then as I joined them both together thanks to my CNS. bless her x

We need more Patients Reps,CNS,AHP,CLINICIANS ETC ETC  and we now have one in every County alongside Locality Meets.So please talk to your local cancer trust.

We then talked about the Lymphodema Services.

The pathway is now down at 2 or 4 weeks for that first appointment not the 6 months that is happening in some places. The appointment is for 1.5hours down from 2 hours.

In our area there is a good response to adverts for nurses but we need more students in Lymphodima.

W have Light Lazers being bought by charity. Swimming lessons are being offered by a local sports centre, and more education.

A jargon Buster has been produced to help us  which will be a great help in meetings as they turn everything into just letters dont they CNS for the cancer Nurse.

We then had a very interesting talk by A young Lady of the CHSS -Centre for Health Services studies. at the University of Kent. They do lots of patient research raising Questionnaires etc etc

Loved the fact they are going to have a Pre Election Health Policy Debate I will go to .

Another good looking event is Research Matters an Event for patients and Public Saturday May 16 Holiday Inn Gatwick

The NIHR Clinical Research Network is the clinical research delivery arm of the NHS. We operate nationally across England through a national coordinating centre and 15 local branches delivering research in the NHS across all disease areas.

The NIHR Clinical Research Network: Kent, Surrey and Sussex is hosted by Royal Surrey County Hospital NHS Foundation Trust. The host is responsible for ensuring the effective delivery of research in the Trusts, primary care organisations and other qualified NHS providers throughout the Kent, Surrey and Sussex area.

Myrna Gray, a patient representative from East Kent who has been involved with health research for some time has taken part in a short video to tell people about how important patient and public involvement is and to encourage other people to get involved with health research:

Saturday 4th April 2015: Heather Morgan’s Easter  Craft Fair at the Landmark Centre Deal 10am to 4pm 25p admission with proceeds to the CCC.

We then had a talk about Clinical Trials and there is a National Database and Clinical Trials Results Database

The results when available are on this link

Rays Blog

Its 2 Years ago today when at roughly this time in the morning walking louis I had my 3rd Heart attack. I had just reached the Lane when the pain was unbearable. I spent 5 days in A&E. Life has not been the same since that day. I had surgery a few weeks later and I am still here. But it took its toll.


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