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
hmmm governments, what to say, i am 49 and also terminal, (although currently in remission).
my husband was in the first gulf war... and offically has "undefined ilnesses" related to the gulf war... in real speak gulf war syndrome he even gets a war pension, now you dont get a war pension JUST because you WENT to war..... anyway long story short, he is convinced that HE gave me the cancer, so many who came back from the war have cancers and family members have cancers.i was 38 when i first found something wrong in my breast. very fit, gym 3 times a week. aerobics twice a week and salsa once a week, and 8 st 10.. not what is classed as the usual suspect... but who really knows done is done , and you know what no one wants to know, no one cares... sweep it under the carpet( govenments i mean). i hate the idea of my hubby blaming himself, he was a soldier and followed orders and because he was a senior rank he had to be one of the first ones to take the cocktail of drugs they were given in case of chemical warfare.
i trully sympathize with you ...... but time is precious... enjoy. its not really moving on but living your life... youve only got one and it has been shortened... dont waste time on if`s but`s and maybe`s
make a bucket list (things to do before you kick the bucket) i did..... have fun ticking it off... do something scary.. silly... fun. i am doing a bungee jump for childrens cancer on 20th sept... scared stiff .. but excited too lol. good luck cat. liz xxxx
Not too many certainties in life but I am POSITIVE that the Gulf War Syndrome is a vipers' nest and there will be an enormous scandal about its repeated denial at some point. You talk great sense, and let us know how the bungee jump goes - you are a brave woman. My shock tactics so far are limited to pole dancing with the pump in the chemo suite (cheers up the old farts!). Of course you're right; get going and fulfil the unrealised dreams...
Apologies first to those reading Catriona's blog who are not aware of her 'whizz-kid' status. Okay, now talking to you, Catriona... does this not strike you as a 'light-bulb moment'? Here you are, a highly-educated, articulate woman with a unique experience of how 'the powers-that-be' operate and with contacts amongst 'the great-and-the-good. (Okay - cliche overdose!) Here you are telling me in a PM that you want a 'project'.... Dooh!
Think back to what I have told you about my youth and my 'revolutionary' activities - a dumb blond ill-educated teenager and if I could make a difference then so can you! I think we all have a 'why are we here?' moment - well, sunshine - this is yours!
On a practical basis I think your best bet is the press. You would rattle cages immediately if you went with something like The Daily Mail (who absolutely LOVE any health stories) but you may have better contacts with the quality papers.
You have a unique insight into how the system works. Use your knowledge, use your contacts - make a difference. And this ancient revolutionary will be right behind you!
although i have to say G.W.S. was headline news for years ....still nothing was done,,,, the americans admitted it and paid compensation..... still nothing was done... protests all over the U.K ....still nothing was done. my hubby went see and "expert" solicitor they wanted £100 a month retainer fee, if we had`ve went ahead with that its would`ve cost £16,800 to date, still nothing was done... we know people who did just that. and they are just lighter in pocket. liz xx
