I have now accepted my terminal diagnosis and am able to have a pretty good life at the moment; unlike many of you I have no debilitating side-effects, a fact for which I'm grateful. I do think 43 is rather young, but chemo suite experience has made me realise that I am fortunate in comparison to these poor young girls aged 30 and under: at least I've had my opportunities and life lessons and adventures.
My problem is a nagging doubt about the cause of my cancer. I have blogged about this before so apologies if I'm wasting your time by rehashing events. I have a real need for perspective, and although my friends are hugely supportive and sympathetic, I think you lot are the only people who can give me it.
Summary: in 1986 I was a student on a course in Minsk in the Former Soviet Union (a rare thing in these days). Half-way into our 3-month course the Chernobyl accident happened and after a couple of days of faffing around, the Foreign Office evacuated us. I was Exhibit A at the Student Health Service for a couple of weeks and my luggage was dramatically pronounced "contaminated", but other than that there has been no medical follow-up of which I'm aware.
Cut to today. When I was diagnosed the GP said he was pretty certain it was Chernobyl-related; the oncologist said she didn't "know what to make of it". The breast surgeon told me had had written to the Royal College of Surgeons to enquire about the suitabliity of raidotherapy in my case, given my exposure back then. The College replied that there was an "incidence" of cancer among my fellow British students of the time. No further details (medical confidentiality, etc).
So I felt like pursuing the issue and asked my MP for advice. He wrote to the Secretary of State for Health on my behalf, but because I now live in Scotland, health is a fully devolved national issue and no records are available, even for issues with an international dimension. I did get a letter from the Scottish Health Secretary suggesting I contact the National Cancer Institute, who told me no records were kept, nor interest registered.
The obvious course of action would be to find my fellow students and see if there is a statistically abnormal incidence amongst us (there were around 100 of us in Minsk and Kiev so approaching a control group of sorts). Not hitherto possible, alas as we all lost contact and I can't remember any of their names! Have tried creating a Facebook group to no avail. I also contacted the editor of the Lancet Oncology, who wrote back that he lacked the resources to follow up the story but suggested I try the media. Problem. Such a step would be contrary to my nature and of course given the political complexities of the nuclear issue could set me up for being a helpless pawn. Ghastly.
Should I just let the issue go? People (including my MP!) have raised eyebrows about a possible cover-up and recommended I access my medical records to see if anyone else has "monitored" them. It's easy to become bogged down in conspiracy theories, but having worked for the government for 15 years I'm less than credulous about their actually having the efficiency or foresight to organise anything of the sort...
And let's face it: I smoke, I'm childless, I have a penchant for red wine and I've not exactly been an enthusiast of the gym until recently (am a fitness freak now!!) Perhaps I am just looking for something to blame my fate upon.
Thanks if you've read this far; I really would appreciate any comments from fellow patients. Maybe it is time, in the hideous expression, to "move on"???
love
Catriona x
Sorry Liz, Catriona may be able to help you with this but as my mother used to say, "These things often come out in the wash". If you think back a few years to the coalminers starting to get compensation for diseases caused by coal-dust and you will know sometimes it takes a long time to win these battles for recognition. My sister's husband died of lung cancer caused by asbestos but this was eventually recognised as an industrial injury and after his death she received some compensation. It has also been subsequently proved that children and wives of those exposed to asbestos have developed the lung cancer unique to exposure to asbestos (it begins with the letter M... but I can't remember how to spell the word) because they had contact with the fibres via clothes. None of these organisations are going to volunteer to put their hands up and say, "Sorry - our fault. Here's a nice cheque in compensation". Not of immediate help to you but hopefully there will be a positive outcome... eventually.
Hi Catriona, I agree wholeheartedly with Kate, what do you have to lose by contacting the media. They might be able to dig up some information regarding this. Let's face it, they will have the funds to do this, which you might not. It will certainly give you something to focus on too.
I'm not disregarding what Liz is saying though, as I agree with what she says regarding living your life and time is very precious.
I believe it is something you won't be able to just put to the back of your mind and if you do decide to follow this up, I wish you the best of luck and hope you get the answers you are looking for.
my father in law was a coal miner. (white fingers)my dad and step dad have asbestoses (ship yards) my in law got a small compensation. my dad and step dad are both 76 and have been trying for years to get compensation.... a distant family member had it too and his case came up after he died. his family got a very meger settlement two of his sons got it from his clothing and still fighting for comp... and on and on and on lol... omg i just realised ...... my family are a bunch of sickies!!!!!! ha ha ha ha sorry sick humour..... oooops.
my hubby doesnt care about compensation he just wants them to admit what they done..... chernobyl didnt happen in the u.k... our government dont even care about the things they do in their own country.liz x
Hear hear Liz! The government in this country let us all down on a regular basis. My aunt also died from asbestosis, her husband worked in the shipyards too and he is suffering from this now too. No compensation forthcoming for any of them. The powers that be should hang there heads in shame for what they have to done to people here. In your husband's case - Gulf War Syndrome! It's all very sad for all involved, but it would be a different story if any of their families were involved.
This sounds like an outstanding issue to resolve, and you are the girl to do it. Hit the press (Daily Mail/Express love health stories), cancer - combine that with Chernobyl and you must be on a winner. And as you are stunning to look at as well as being so darn clever how could they resist? (A bit of jealousy creeping in - stoppit Sharry) Seriously you are the ideal person to pursue this, if you want any help etc give us a call.
Mesothelioma is the word you were looking for Kate.
