Monday, July 17, 2006

Today, A and I went to sainsburys. It was fairly empty in there, which always makes me a tad more self conscious anyway for the strange logic that I feel if there are less people around the people that are there are more likely to hone in on me. Having selected all the necessities – trifle, hundreds and thousands (known to me as sweetiebobbles but I am trying to get out of that habit after asking A to buy me some more and he went and asked a sales assistant if they stocked sweetiebobbles which naturally was met with some baffled amusement and I was in serious trouble) ice-cream etc, we were queuing up at the till. As we placed our basket, the lady asked cheerfully how we were so we both smiled and exchanged plesentaries. I was absent-mindedly reading the cigarette packets (not much else to look at) when I heard the lady say “what’s wrong with her?” I turned to see who she meant and realised she was asking about me. Slightly stunned, A said “pardon?” and she said “is she ok” to which he turned to me somewhat thrown and said “are you ok?” it was like something out of a Monty Python sketch. I was actually pretty embarrassed and said loudly “yes I’m fine I am waiting for a transplant” which a) was a contradiction in one sentence and b)was slightly unnecessary but did shut the woman up.

Usually I would laugh about these things, but for some reason this did quite get to me this evening. I just felt a little sad of the reminder that of course people will wonder “what’s wrong with her” when they see me, unless that is of course they are used to people wearing plastic tubing up their nostrils.

I have just read Gloria Hunniford’s book “Next to you - Caron’s courage “ about her daughter’s battle to cancer, which she eventually lost. Obviously a completely different scenario to my current situation, but it was interesting reading about the way she dealt and lived with her illness. One thing that particularly struck me was her determination to keep it a secret. Her mother muses over various reasons, all of which sound highly plausible to me as they are similar to my own drive for coping with transplant and things the way I do, which is to tell anyone and everyone about it. I think it is almost me trying to trip up my illness and say “ha, see you can’t create a taboo or an underlying fear, this is all out in the open and just a part of my life”. So I talk about it. A lot I suppose, but interestingly for similar reasons as one might hide it it seems, being that I don’t want it to become a big thing. Well it is a big thing (stupid comment) but bigger than it has to be. Obviously the hiding it option was rather irradicated when I started wearing O2 24/7, but I think that is why I push myself, wear O2 on TV and go to pubs and things, it’s almost like that behaviourist therapy which resulted in a psychologist taking a patient of his who had an irrational fear of cars, locking her in the boot and driving around for a couple of hours until her hysteria had died down. Perhaps not very ethical, but it worked.

There doesn’t appear to be any point to this blog, more just I needed to vent and spill my thoughts, which would in fact be the point of a blog then. Oh be quiet Em.


Emmie said...

Oh poppet, what a silly old bint to talk about you like that! I'm sorry it upset you, but I'm not suprised. Talk about "does he take sugar?" eh?!!!

I was thinking the other day that I really honestly do not notice you oxygen anymore. Its a bit like when someone first wears glasses and you notice them, and then after a while you don't even see them.

I must admit I was laughing a lot when I read about the monthy python-esque sketch with A asking you "are you ok?" LMAO. Then I saw you were hurt by it and felt rather guilty...ooops.

Anyway, just least you are pretty and young and gorgeous, she was probably a shrivelled up old prune, clearly without many brain cells.

Anyway, love you lots! xxxxxxxxxxxx

Anonymous said...

Awww hon I know sometimes little things can get to you,but she really isn't worth the bother!!!

To be honest,I find people who say things like that are usually quite ignorant.

I was like Emmie,I was laughing away at the Monty Python bit then ooops.

Even though I've never met you ,when I read your Blog I can imagine you chattering away,and it always makes me smile hehe.

Tinypoppet said...

Glad you were laughing, that was intentional, as that was how I felt! Very amused at the whole farce, then just a bit sad afterwards.

Oh dear, commenting on my own blog...!

Claire221082 said...

Well I'll proudly say i laughed womans silly comments mostly because they seem to fit very nicely with comments such as 'What is that?' in reference to the oxygen cylinder which has oxygen written down the side. And how can i not mention the 'is it real?' also pointing at oxygen cylinder! Some people really are as dumb as they look!

Simba said...

When I see people with O2 or tubes and other medical paraphernalia, I always think they're really cool because they're not sitting at home feeling sorry for themselves (like I would be). :)

Also, I guess until we need O2 CF is a mostly a hidden disability and so we aren't used to people staring and making dumb comments. This transfer from invisible to visble is a lot to get your head around and I think you're doing brill!

Did you ever read John Diamond's column in The Times? (I might be showing my age here...) He most definitely didn't keep his cancer a secret and I think you'd like them. Some of his columns are reproduced in his books.

ps There is NOTHING wrong with commenting on your own blog! xx

livvy said...

Some people can unintentionally be rather insensitive, but that's just the way the world goes - some of us have more tact and wouldn't dream of being so forward.
Don't let one persons lack of tact upset you - like Emma said, she's probably just a silly old nosey woman with nothing better to do.
Keep smiling Em - don't ever loose that gift because your such a lovely person. XX

Anonymous said...

I saw coverage of LiveLifeThenGiveLife on my regional news too! Well done you! I am very proud.

As for becoming 'visable', I think you are doing a fabby job. 10 years ago people would have gawped at a bold women going through chemo, but now everyone just accepts it because we are exposed to it so ofetn. Bring on oxygen tube complacency!!

Stuff the supermarket wench. But at least she knew you were female, I got called sir last week! Very humiliating!

Big Hugs. xxxx

Kiera said...

Woman is clearly severely challenged in the tact and diplomacy department.

I too have just read the very same book. It's a good read.

This post reminded me of being out with a friend whose Mum is serving a life sentence. Around the time she was sentenced and the local media and the local press were reporting the story..went for drinks when a chap she vaguely knows got all doe-eyed and asked her if she'was okay.'Wondering if he was enquiring as to her well being because of her Mum she replied 'I bloody well hope so!'....she started to feel a bit anxious her knickers might be on show or that was dribbling and hadn't noticed. Anyway, maybe there isn't a link to your post after all, or maybe there is if you look hard! ;0)

Anonymous said...

who cares about the daft woman...I'm still LMAO at 'sweetiebobbles'!! I have to just slip that into conversation at some point ;)

Anonymous said...

I get called anorexic and such all the time... Or if I cough, people have the nerve to say I should stop smoking.


Don't let that phase you hun.. Sometimes people show concern, nd they dont know how to go about finding out.. I just answer now, and try to ignore the fact people are gawking.

Anonymous said...

So you didn't go to Sainsbury's and get escorted round by Duty Manager Stuart? He's very good at finding the sweetiebobbles, packets of smollage and pink fish biscuits you know (you'd better ask him).

I can't belieeeeeeve that someone thought you looked unwell!
Piping O2 up your nostrils in public is now very fashionable, there was a stall at Guilfest this weekend where you could have a few minutes hit through (probably shared - yuk!) flavoured water, shisha pipe stylee. And I saw a grown man in a fairy dress like yours...see, height of fashion! We will all be queuing up to exchange our vital organs soon.

misdee said...

Ignore the silly woman tho i will admit i also chuckled at sweetiebobbles.
At the weekend we had the lovely pleasure of having my husband home. And like you, we went to the supermarket, with all his medical stuff in tow (well we cant exactly leave his VAD at home, it is attached to his heart afterall). As we were queuing to pay, middle daughter twirling, baby trying to escape, i turned and noticed a women with a look of sheer disgust on her face. I just gave her a steely glare and whispered to Peter 'you are getting stared at again', he laughed and gave her a little wave.

Some days it doesnt bother us, and we are all prepared with mini organ donation talks, but it was a sunday morning, kids wreaking havoc as excited to have daddy home and i just couldnt be bothered. The thing is, at Harefield, in the hospital and village, People are used to LVADs, RVADs and Bi-VADS and you get used to being safe there away from stares and comments. But in the real world its a different story. People dont expect to see someones blood being pumped externally whilst in the supermarket. They arent used to the click-clicking of the VAD, or seeing wires and tubing running from your side to the black box on wheels. Its like a complate shock and 'Welcome bacdk to reality'

Oh my, i am waffling on and on, and its far too early. Take care.