Living With Mesothelioma -My Diary- The day of the Cancer Lung Patient Meeting – A really fruitful day.

I look like I have just got up –I had. It was an early start today.
The traffic was light so we did get there early as always.
It was lovely to meet again my Colleges on the Cancer network team
Nick Goodgar  opened the meeting to tell us how East Kent Cancer Care compares with The rest of the UK and Europe.
It isnt as good as it could be as We have high figures and Medway the worse. But I pointed out that Medway is a hotspot for mesothelioma so of course the figure is higher. (OH YES ) Im sad that they haven’t realised this before.
In 1990 The survival figures were awful.
By 2008/2010 the figure was better at 23%
Lung Cancer figures are improving but Scandinavia is doing better so we must try harder.
Drugs need to be commissioned.
The do now call a 5 year survival a cure. hmmm cant agree with that as that would mean I was cured and Im far from that.
So the cough Campaign has worked but in doing so means that we have a larger amount of patients to Xray and scan and of coarse there are many that have nothing wrong. But as they have symptoms they need more investigation
needed as it could be a heart problem or somthing else.
So what if GPs have a better access to diagnostics. Xray is Ok but Ct scans are better.
Fine needle of neck nodules could be done by GPs.
Out of 700 Lung cancer patients 300 got surgery as as 1st treatment.
There was 30% Increase in 2 weeks because of the cough campagne so be prepared when we do.
There are outward signs of Cancer. Clubbed fingers, cough.
100 patients at £215 for a consultation in a hospital =£21500.00
As against 700 patients x £100 seen by a Gp =£7000.00 shows we should give Gps more backing for diagnosing Cancer first by Xray machines that they have in their surgeries.
We got together after lunch to separate in our areas (Im east kent) and we became a work shop with all our ideas being talked over. I was able to talk about our pet hate –Scan results, A doctor had no idea about the scanning machine
working 7 days a week and the scans be looked at only 5 days and 9.5.
That has gone into the final plan.
The Doctor from Sussex had joined our team and spoke of the Hamilton Score card for our GPs. Like tick list for all your symptoms.
So we had a Gold Pathway coming together.
There was a very interesting discovery that our Radiology Machines had the SABR Cyber knife.Its been stopped because of Commissioning Problems.
That is being in the minutes so it will be looked at.
 We talked about how feasible it would be to have scan results back in 48 hours. No don’t laugh Mesowarriors. So we are being generous and asking for 2 weeks.
A really good idea is a One Stop Clinic where you  come in and everything is done in a day -this would be at our Main District hospital.
A Pleural Aspiration Clinic for all our draining of Lungs.
And a main Central Database for nodules as most false alarm scans are just nodules.
Right that is the basis and I haven’t wrote about everything as the Minutes will be published and I can use them.
Good morning – I have Mesothelioma.Its not really a true Lung Cancer as it is in the linings of all organs. Do you count Stomach Mesothelioma or Heart into those figures for heart and stomach. No then cant you see you are not getting a true
figure for Lung Cancer. (I did smile and they realize it is true Oh Dear)
We have had a great day and Ray has found it so interesting and everyone had enjoyed the day and felt that so much was achieved.  That maid for a happy band of people.
Dr Shah was really pleased I was on the trial at The Marsden he said it is showing good results and as there is ni Placebo with Phase one dugs he know how happy Iam.
He said it was a shame my other trial didnt work and the Plymory has been published but wait for the final report has to be published yet
I was diagnosed in 2009 when I couldn’t breath. I had been to the Gp with a numb and twisting arm.
The Gp diagnosed a Trapped Ulmer Nerve and made an appointment for me to see the specialist at K&C In the mean time my hands were getting very claw like and my right arm -when held out was pulled to the left .
I wasnt really convinced and a friend told me to go for a second opinion.
So I went back for a second opinion and I saw a Locum -who sent for an appointment for a Xray.
That appoint came through in about 2 weeks. On June 4th I went to vote and I was struggling for breath. I Couldn’t vote I just came home.
That afternoon I had a phone call from my GP to say he had arranged a bed so please go now.
You have a shadow on the Lung or something I learnt later the Locum thought I had a huge mass.
I was seen straight away in A&E and had 7 litres of fluid drained.
The next day I had a bed in Invicta Ward. I was told my fluid would be tested for Cancer cells. (Grow in a dish)
Then my pathway started.
Can I say we need CNS nurses as mine has been an angel. she is always there for me when I phone or email when i need info. We need that back up so please look and see mine is working with to much work load in
this New NHS. (Mine has been given 3 hospitals to control so she has no time to sit in Patient appointments with the Oncologist.
Within 6 months and after my porthole was achieved and the District nurses helped me drain – I had a team and I was on Chemo. It shrunk the Cancer.
I had 15 months freedom just having scans every 3 months.
Until the dreaded day of regrowth.
I immediately said More Chemo. To be honest I wish now I had spread out my treatments as I might be just coming up to 4th Line
I tried for the Adams Trial but I had a bi-op and there wasnt Argine present.
That took 9 months of travelling to London to find that out.
But I was offered the NGR-hTNF trial at Maidstone which Im afraid did not work for me
So two sessions of Cisplatin and Alimata I became allergic but it did work and we had stable again for a while then growth was found in my next scan.
What would I like next as there are no new trials or Chemo.
Im not used to a Doctor having no answers.
I emailed JS on a monday at Barts and that friday I was in an appointment where Peter offered me the last place on Adams Trial -but it would mean another Bi-op.
He threw me a life line of Gem/Carbo and I could have that Local. Back to Canterbury and I was on Chemo again to September.
Oct scan was bad news the chemo had not worked. I said as its slow growing lets wait.
A scan every 3 months though was showing the growth of 2 mm every 3 months I wasnt happy.
I got right behind the Saatchi Bill and work with Lord Saatchi and doctors and was on the Committee when it was launched.
I had to find an answer and I had a Doctors advice to go to the Marsden.
I asked my Oncologist and she referred me.
Im now going on a Phase 1 trial (and they have many more for me in the wings) It isnt for Meso but This Trial MK-3475 is a drug being tested as it blocks the interaction of a substance called PDL-1 with PD Inhibitor.
They are looking at my Bi_ops one in Guys and one at Homerton.
What I would like to see for the future —
When you have to pass on the bad news –please say With just palliative care 3-6 months but if you have Chemo or a trial (if you are suitable) that could be lengthened Give the patient hope.
They find my blog and I give them hope. I would like you to have the freedom that the Saatchi Bill will bring you.
To be untied from the red tape and to be able to carry out trials nearer to our homes.
Why -every time I ask about a trial Im told NO when in another hospital there are trials going on. But I have to research and find out where.
The amount of travelling I have done you wouldn’t believe and a very costly both in time and emotion
So a Data Base for all the trials Centralised for all Trial Doctors to access (The answer was there is and Trial Doctors hold a list of all the trials but they have to work out what is suitable. for ALL Cancers
and Mesothelioma hasnt had many released. So I know I have been sent to the right Hospital The Royal Marsden is the right hospital as the Phase 1 trials have to be controlled very tightly. ‘
The pharmacists should work with the chemo depts Better maybe have a continuous working through dinner hours ready for the 2 pm sessions, we have to wait and it then a three hour session goes into early evening.
When the Oncologist books an appointment with the patient she can also demand an appointment at the same time for a scan, so that the request doesnt sit in a basket for weeks waiting to be processed and we the patient
sit at home seeing the weeks going and with 2 weeks away know it wont be read in time. So we have to chase. I would like to see a Data Base where your local oncologist has access to trials that maybe suitable in other hospitals
Instead of me researching on line. I have no negative comments against doctors or nurses who have worked tirelessly to treat my Cancer with passion and concern. I hope my efforts in making the world aware through my talks
 and meetings in the HC and my highly successful 2 hundred thousand hits on my blog and my recent interviews in London for the media having reached 35 million + has gone some way to show you how proud Iam of East Kent
Hospitals especial K&C who have helped to survive 5 years .

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