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
FormerMember
Hi Catriona,
Having met you at Banstead I concur with Kate and Sharry, the party ladies. You are in the box seat for this and I really do think you should go for it. With the prospect of a devastating national election in the offing for all the main parties and the echo's of city fat cats and MP's lining their own duck ponds (sorry, I'm losing it now), I think the time is right for a lady of your calibre to kick this off. Roll up your sleeves and go for it ( I'll hold your raincoat !!! ).
If there are any spare tickets left for the pole dancing thingy, I'd like a front row seat please.
Sorry it's taken so long to get back to you Catriona - my internet access has been playing up again (and that's my own next project - Kate vs BT!).
Realistically, this cynical old bunny doesn't think you will manage to get any compensation (or even recognition). However, you could have one h*ll of a lot of fun rattling a few cages. Are you feeling well enough to take on the Establishment? There will be a great deal of work involved, starting as you say with rounding up your fellow students and it would be a pity if this project were to take over your life to the exclusion of everything else.
I think the suggestion of the Daily Mail is a great one - they do love a health story and while they're not a broadsheet, they are at least taken seriously by the powers that be.
In my humble opinion . . . go for it, on condition that (1) you feel up to it; (2) it doesn't swallow up your life; and (3) you are not too disappointed if you don't appear to achieve anything immediately.
Wow I don't think my chemo knackered brain can cope with all of this!! Basically I think I agree with Kate2003 - sorry I cant be more help. Is your complaint that you weren't evacuated quickly enough, or that there has been a cover up about you and fellow students getting cancer (just trying to get it straight in my head) ? (Because the incident was Russia's responsibility not the British Govt) I think if it were me - (and our lives are very different) I would concentrate on having fun and let it go myself - because compensation, if you get anything, could take years and I would rather be grabbing my life with both hands and enjoying it. You on the other hand probably feel like you need some closure and answers as to where you cancer came from and I can completely understand that too.
Obviously the whole incdent is a complete nightmare for you and it must prey on your mind - if you have the fight in you to go for it then do so - and I will back you all the way :o)
What I hoped for from your views was exactly what I got - the perspective from the only people who really "know what it's like", and I'm very grateful to you all (especially for the compliments; stop swelling my scarecrow head!).
I have long realised there's not a cat's hope in hell of any compensation; as Kate and Jools pointed out it was the Russian/Ukrainian governments' fault that their security and architecture was hopeless enough to bring this on. In all honesty, I can't really fault the UK govt of the time in getting us out of there; it was a logistical nightmare and there weren't even telephones that worked properly in those days. My mum actually got a reassuring phonecall from Geoffrey Howe's office (he was Foreign Secretary) the day after she called our local MP in mass hysterics (I exaggerate), which is pretty impressive really. So overall, it's not really a blame game; accidents happen.
My motives are, really, intellectual curiousity (is there really a high enough incidence of cancer among this group to suggest we were fatally contaminated?) And a frown at the medical establishment (should they not have taken the opportunity, in such an odd situation, to monitor us openly for research purposes? That's where my unease with the nuclear establishment's clout and possible eagerness to stamp on any suggestion of the chances of long-term harm comes in).
I have not marshalled my thoughts fully yet; as Jools and Kate said, I'd have to up to it mentally and there is a big chance of disappointment that it's a non-story and I'd get nowhere. Or, of course, that it's my own fault for smoking and drinking, as the press seem keen to point out at the moment. But Kate G's reminder about her revolutionary past (do you know about this? It's fascinating!) is really what is awakening something in me that says, be true to your instincts and put your intellectual integrity where your gob is. I'll keep you informed anyway!
