As I am slowly destroying my good cells and hopefully killing the nasty meso ones it brings us to the time of recollection. I am putting myself through the infliction of poison that I know will bring my body to its knees, if I was a serial killer doing this to others I would be locked up and labelled a grotesque killer, one who pours pain and suffering on those affected. Yet I am an innocent in all of this, as are all those who have gone before me and those, unfortunately, who are to come. Do I want justice, you bet.
What enjoyment has asbestos brought into my life? If it was from smoking, then justifiably I am to blame, even though when I started, smoking was something you did to be an adult (stupid but true in my youth) and people weren't warned of its dangers. Its like over eating, being obese, self harmed by today's adverts to eat fast food and caution to the wind on what it does. But asbestos, what did it do for me - apart from give me this painful death sentence.
I have just had a conversation with hubby, he doesn't think that fighting will ever get us anywhere, kind of it isn't our battle, but it is. If it wasn't for people like Chris Knighton or June Hanncock this cancer would still be hidden away and classed as a rarity among those under 75. We need to join together, we can't teach doctors about medicine but we can help them understand a disease that rips at the very heart of yours and your family's life. In fact, as I wrote many times before, this was an old man's disease and in the eyes of the politicians and NHS was it really worth spending money on, the people targeted were no longer paying into the system and would probably only have a few years left anyway. But these people had paid into the system, many probably fought the war to keep us Great Britain, yet they were cast aside by money and greed. It is still happening today, research into mesothelioma is still the lowest, where does all those millions go raised by Cancer Research, surely there are enough breast chemotherapies out there, bowel cancer has a good success rate (if the doctor is on the ball and diagnosis correctly). Many are caught soon, yet meso, well it sits and sits and then suddenly you are terminal with what they say 'little chance of survival'. Had I listened in 04 I doubt I would be here, there were 4 of us diagnosed around the same time at James Cook. Two of us are still living, both are now battling again for our lives. So in averages that's 50% survived 8 years since diagnosis, that kinds of throws their statistics out of the window.
Chris, who was diagnosed with me, told the doctors on several occasions he had worked with asbestos but they didn't listen, it took him 6 months for the diagnosis. Why didn't they test him the minute he told them about his work with the stuff, they choose to ignore it and probably wasted money on trying this tablet or that before finally doing a VAT. I wonder sometimes if they just wish we would go away and die, saves them spending money on us that could help someone else who is cureable.
An arguement thrown in by my husband as I showered this morning. If an oncologist has say £10,000 is he going to treat two breast cancers, who can survive, or one with breast and one with mesothelioma who will likely die in a few years. Is this what we end up being, a spreadsheet of where the money should go. What about all my tax and Ni, all those out there who have and are paying it. Our Governments (all sides) are so liberal with our money on aid abroad, immigrants, free housing and poverty limits, yet come to a cancer created by man (which made companies a lot of money), it seems we arne't worth saving because it doesn't look good on the books! Lets see, if I had died in 05, thats 8 years worth of tax and NI the treasury would be without, say I only paid in £15,000 thats £120,000 for 8 years, times that by the likes of those meso patients who still are alive and like me working, thats a lot more than the one treatment of chemo it has cost. In my case this is the first chemo the NHS is paying for. Ok I have had other treatment, 3 surgeries in all on the NHS.
See I am prepared to fight, I probably already have a bad name among the peers in the NHS, but I am not bothered about just me, I fear for the future of us all. I don't have children (probably due to the bloody meso attacking when I was pregnant) but I have nieces and nephews, I have friends who have children who are dear to me. I have friends that I hope never have to face this with their own families and I have many friends who are facing this now, and friends who have lost the fight. Yes Cancer isn't the big scary word it was in 1970 when you really did die within a few months, but that's a natural cancer, this is a cancer created, a fibre that can not be destroyed.
I am calling Researchers, find a way to break down its dna, you found how to do man's, find the thread that can lead to the destruction of this little fibre that can't be expelled from the body because of its unusual design. Cancer UK give us more money, instill around the country that we need trials ran in every county, and not from drug manufacturers, from our own universities. We are supposed to have brainy children these days, then why aren't we using them, we have computers than can create imagery and help break down pathways a lot faster than by pen and paper. Lets get trials ran concurrently, so everyone can have a go, lets make it easy for mesothelioma sufferers to find out what is out there and update the oncologists country wide what is available. This is what Cancer UK should be doing, breast cancer will become a thing of the past, mesothelioma is and will be a thing of the future.
On a strange note, in my dreams at the moment I want to dig a tunnel to my sinus, my mind is convinced that this little fibre is stuck in there and sending its deadly virus into my chest. Maybe I am going mad but I wonder could the thing be looming in there?
And lastly as I take this interlude, every year since 05 hubby has made a bonfire night, this year, as with previous ones, I was on chemo so he brought the old bin down to outside the door and insisted I still had a sparkler to play with. I am hoping next year I will be back up the top, eating hot dogs (which I hate but love the smell of) and baked potatoes while watching the fireworks explode in the sky.
This is to remind me to stay strong and ensure I am still here for next years.
To my friends who are currently going through chemo and those who are getting ready to start the terrible journey again, I salute you. To those on trials - you are my hero's. To those who have no understanding of what it is like - learn about it, you may not be so lucky later down the line.