I want to write down some thoughts today. As I know Im making enemies with the way I feel.
We lost another Mesowarrior yesterday from this terrible disease. It is man made and we haven’t done anything to receive this death sentence.
They like to work out, with other diseases, that we eat too much, drank too much, smoke too much.
All we did was breath in dust, that was in the air for even just one moment, or had filled the working area.
Now I have this disease and have had to scream for treatment, there is still a me inside this broken body. I have taken so much chemo I have almost killed myself doing that.
4×6 4 lines of poison that made me so sick and destroyed my nervous system, where I couldn’t walk. I have had to fight for all the treatment, as I had other people saying no more treatment but I had proved I wanted to fight as being given a death sentence of 3 months wasn’t what I was prepared to accept.
I got behind the Saatchi Bill for that reason. They want to listen to the patient. Why shouldn’t the patient have a say in how they treat this disease.
They are learning all the time from us.
The people that are doing so much for us are the people in my front line. My doctors and nurses, working to set budgets and time scales and being mastered by Hospital Trust.
It isn’t very easy for them. They need to be free agents to be able to do their work properly. Wonderful CNS nurses who are front line to the patients have had budgets slashed. They work to 100 patients each but because off lack of money, are having to handle a far to higher figure, so they cant get to see all patients in clinic to help each person to deal with Cancer.
The Macmillan team and Mesothelioma UK are Charities. That was something that really shocked me. The NHS is running alongside so many charities. They treat and help so many patients. The Government doesn’t seem to ever mention that fact, They buy so much equipment etc etc for hospitals that we wouldn’t have a NHS without them.
Now this is the part that I cant get straight in my head.
We have people like the NHS that are directly involved. The Doctors are wonderful and they, with nurses are involved in so many activities out of their working environment.
I have met them in meetings where we discuss figures and how the hospitals are preforming, the latest trials and the latest treatment.
Then at workshops where data is collected and discuss and their meeting people who collect the data to use elsewhere and raise reports and graphs.
Conferences, where they speak and share the latest trials and data.
Now here they mix in with people that are fighting the battle of Asbestos.
Now really they are two different battles, but they learn from and use the Patient to show what Asbestos does.
It has taken a long time, and still there is ignorance of the material that was once hailed as a wonder product.
We go into another world of people in the front line like Asbestos strippers etc etc.
The use of asbestos insulation and most types of asbestos are now banned, but many thousands of tonnes of asbestos were used in buildings in the past.
Much of the asbestos is still there and you cannot easily identify it from its appearance. It is a huge huge problem and all these people are working with a killer and need expensive equipment to keep them safe.
But can you get the picture.
There is so much money being spent on data collection travel and hotels etc etc etc etc, that I keep sitting there thinking if only this was all going into research.
The ideal world is that we have a problem of a disease, the Government know it (they made so much money out of Asbbestos) so lets sort it all out.
I understand that to take all the Asbestos out of our life is so expensive but they need to work out the best way to manage. Why does it take all this money and time consuming to sort it out. Its only spreading the awareness thinly in so many areas. and allowing so many people to become cash rich, while in the mean time the medical people, the doctors and nurses are getting poorer and above all else the patients are dieing still.
That is how I feel today that the patient and carers that are on the real front line has such a huge world behind them just talking and instead of really getting behind the problem Politics and ego’s are getting in the way.
I wish everyone one of them would stop what they are doing and think. Yes even me. Stop and think why did I start all this writing and talking and time on a computer.
Well firstly I wanted to help myself. I was desperate to find out first what my disease was. Mesothelioma is such a pretty name but an ugly disease.
I then wanted to find what treatment was out there so I became involved with Facebook and the Mesowarriors. We banded together and became one voice. I started to use my voice and spoke at the Mesothelioma Uk conference. I wrote my book to raise money for their Charity, I got involved with BLF and became a patient rep. I have met some wonderful people.
But I have lived for 6 years now and seen so many Mesowarriors die. So I have a little support group and I help them with all the worries and fears and now pass on all I have learnt from my experience.
That spurs me on to stop all this sadness and to know I have helped in some small way. All the expenses are out of my own pocket so Im free from any financial gain and therefor can work freely.
Now I would like everyone who is wrapped up in this horror to sit down and go back to the basic reason they started their journey. Right from the Government, Data Collectors, Asbestos Companies, Medical staff , and all the Awareness Raisers etc etc, lets have a rethink and work out how to sort all this mess out.