To anyone who missed the whole point of the "Getting things off my chest" post, and is now pissed off with me, I'm sorry. I thought the words "jovial", "laughing", "exaggerated...to prevent dullness" and "on the third day of chemo, my preferred responses would be" might have been sufficient.
Perhaps I should just post graphic details and my actual misery instead of my evidently vain attempts to turn this, my actually ruined life into something humourous and more digestible.
The general message in the post was meant to be this:
Anything that is said purely because someone has cancer will always hurt on some level, even the things that cheer someone up, make the hour/day/week better, put a smile on someone's face, there's always that scorpion sting - if there was no disease, you'd not have cause to say it and I wouldn't have to feel your pain as well as my own.
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The comment that get's right up my nose is "you'll be fine". Particularly if said just before some major surgery. Are they God, these people who know in advance I will be 'fine'. No-one has the superhuman power to cross all the risks of surgery/complications off the consent form I have to sign.
And the other one is "hope you get/feel better soon". Actually I might feel slightly better one day than another, but I'm not going to 'get better' soon. I haven't got a cold/flu I've got cancer. If you're lucky you get the chance of remission for a time, but you don't get better.
Big sigh, I DO feel better for that!
Fiona from onwards&upwards blog.
Yep Fiona, I get those a lot, "Hope you get better soon" including from my Dad (I didn't grow up with him, but that's not really and excuse is it).
Nurse giving me a blood test for chemo tomorrow said today (after trying to get all the hair off my cardi and putting it in her bin) told me "It'll all sort itself out".
I have NO idea what she meant - my hair won't ever have 3 years off chemo, if in fact I live another 3 years so no it won't ever sort itself out, it'll be forever short at best when I'm inbetween palliative chemo. She only knew I was on chemo from the blood form, so how can she know?
I wrote this blog for you and everyone else going through any cancer. The fact that I've managed to alienate my sister isn't something I was expecting. I'm glad you also feel better for a mini moan!
Oh Loops,
I so wish we didn't feel this way...I am pretty new to cancer so still at the tip toeing around other peoples feelings at the moment - I long for the day that when someone says, your a fighter, you fought it once and you will again...I will answer with a great big F@+k Off...and I absolutely love all my friends and family but cant stomach another you 'you are an inspiration' - it wont be long though until I actually ask someone WHAT AM I INSPIRING YOU TO DO THEN!
I do understand it is difficult for those around me but I find myself not wanting to go anywhere as I just want to be 'normal' and not talk about cancer - not that I am in denial I just don't want to bloody talk about it all the time...
Anyways how are you getting on - are you sipping the green nectar yet?
Thanks for the honesty as LIFE IS TOO SHORT TO BE DISHONEST - that saying just made me laugh out loud as it has a whole new meaning!
Much Love
Tony xxx
I agree with every word. I'm pretty sick of tip toeing as you can probably tell! Still can't face anything green unless it's in soup. Urology and chemo tomorrow. 9am first appointment. Never gonna make it in time. Oh well, what can they do?
Full stock of sip feeds (free NHS food awesome), new anti sickness and senna will hopefully improve Irene no.3. Think I can stay positive for this one, but will still hi five the nurse if she says my White warrior cells are too low for poison ;-)
Meanwhile I'm still miffed I'm getting the bikini wax and still Stanley Matthews hairy legs (can't bear to remove a single hair on purpose any more, losing so fast from my head. Girl's version of a combover?
How ya doin? T xx
Meditated VERY hard before and during chemo, took two lots of anti sickness, only drank liquids plus odd slice of toast or fruit (to prevent impaction which still happened but hoping it'll move soon). Had to drive myself to chemo to plug in and unplug which was terrifying but, couldn't face public transport and I made it.
Lime cordial is drink of the fortnight - clears tongue and mouth a bit, from my days back in food production planning - inspired memory!
Result - not dehydrated for a change and feel a lot better than 1 & 2. Just have to shift this blockage somehow...
You?
At the risk of getting right up both of your noses (??!!!) 'Life is too short' is another one of my pet hates. If you think about it, in fact it's the longest thing we'll ever do, lol!
Haha, made me laugh. At least I know the rest of my life is short, so I think I can get away with it if it's about me :0)
People don't get it. The one I hate is 'You're so brave...' My ass. What other choice do I have? If I could just have said, 'Yeah, no thanks, I'm not doing the whole cancer thing,' I'd have done that. I didn't have a choice. I got out of bed in the morning. That's bravery? That one irritated me. I wasn't brave. I was sensible. Nothing more.
I can now see though why some people say what they do...
They don't know what it is like and want to say something...I was exactly the same and said all those cliches before.
I am trying my best not to be irritated by the people who will be left behind...
I understand that if they cant say anything helpful then dont say anything, however I would rather they say silly stuff and be there for me to give me a hug and be there for my family when I am gone than not be there for me as I have read some very sad stories about people whos friends stop calling etc...
I do not want to die alone so will put up with the silly comments as they mean well andin the main have good hearts!
Much Love
T xx
It's a cruel world Tony, but you aren't single living alone like me - you'll not be alone, regardless if any prognosis. A sad fact - 4 friends "dumped" me because of my cancer when I was just into first few months of treatment. Friends of 7 and 10 years three if them. Used to alternate monthly lunch meetings at our houses some of us, the other initially an incredible early support. 3 just tailed off contact quite abruptly saying "too busy", then later "I'm so upset you're ill, I can't deal with it or in 1 case just ignoring my messages and calls.
My then best friend I spent most weekends hanging out with and 7 years working with eventually cited jealousy that as I am "prettier and thinner and so brave (yes Debby BRAVE!)" that she couldn't go out spending time with me. I would get a man before her, therefore needed to change things so she could be happy. Given that's what I got for dealing with things well, not ever complaining, being happy and laughing all the time, I think it's coloured my opinion of the human race.
I know exactly what you mean, I did get pretty aireated before my last scan when one women kept saying it would be alright, and this from a woman who has had breast cnacer herself!
I feel that sort of platitude is a denial of my reality, a way of not even letting me be anxious about what the news will be when you pretty much know it is going to be bad, cos that is what advnaced cancer is! She says it'll be alright and I have to shut up! Funnly enough, she was right, and that's an irony, I have escaped more chemo again for a while .. so no doubt she feels justified in her crystal ball-ery! LOL
But in general, I let it go, whatever people say to me, I let it go ... it does me no good to get upset by other people's inability to deal with my reality so I breath in and breath out and let the silliness go on the air, I sometimes even smile or laugh at them, for my own sake as much as theirs, cos harbouring upsets and bad feelings is not the calmness I want as part of my own treatment plan ..
though sometimes I DO tell my best mates about these errors IN OTHER PEOPLE ..which is, I guess, a way of educating them to avoid the same pitfalls .. :)
I dont think any of them are trying to annoy me, in general I think they are trying to show respect when they waffle on about bravery and inspiration .. and they do not have an easy vocabulary for saying those things .. and maybe what they just mean is they are glad it is not them, and they don't know how they would cope
but neither did we until we had to, and really coping without choice is what we do, and what anyone would do if they got a diagnosis like ours ..
I hope you can stay calm now, lisa .. for your own sake .. I am sorry to hear you are in such pain again ..
btw on quite another topic,when I was impacted by the evil irene I found glycerine suppositories less provocative of the rest of my gut than senna ... have you tried that?
x
I am generally very calm I was laughing about it with Suzie but I like to give the "I wonder what would happen if I said this..." voice an airing once in a blue moon.
My issue with constipation is more complicated Suze, when and if I can bring myself to write about I shall. My body is still repulsing me many times a day. Solution is on the horizon by way of permanent stoma and my wonderful surgeon came in on his holiday to see me and kick ass.
fairy nuff, sweetheart ... the many wonders of bowel cancer, eh
x
btw I love the word verification thing on here at the moment, today it offers me cycle and yesterday it was almost karma!
Lisa,
I do realise I am lucky that I will not ever be alone and can't imagine what it must be like for you.
I can only understand what it is like to have terminal cancer and by reading your blog what is to come...that's what scares me the most as at the moment I am well and have never been fitter because of the green juices and liver flushes I am having.
I will pray for peace and less pain for you...you don't have to believe in god..I do and can pray for the both of us :-)
Much Love
T xx
I always get nonsense KAPTCHA words! Don't have to use them on my own of course.
My problems all seem to stem from surgery, radiation 3 years ago Tony. Apart from the crippling pain of that, I would not have been diagnosed for months if not a year or so till my next scan or the tumours caused me issues. My tumours still not affecting me at all. O2 consistently 99/100% on 4 hourly obs, liver function, of course down to my eating regime still functioning perfectly (until chemo, infection and neutropenia of course).
There's not a snowball in hell's chance of getting green juice in Lincolnshire hospitals. I have managed to secure soy milk and every meal is vegan. Have given up wheat avoidance simply because I can't take the additional hassle of attempting. Essentially if I'm happy accepting temporary deviations beyond my control for the sake of my overall being it's fine.
Feeling much better after 3 hours again plus two 1 hour long sleeps either side.
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