Getting things off my chest.
I wish i could get rid of this constant rattle that inhabits my throat and chest constantly,this phlegm that goes up and down ,but won`t go away.
I wrote a hand-written letter to my mum yesterday and i write like an old lady,finding it hard not to stop my fingers shaking-another side-effect of the drugs i am taking ,i am told.
Still, ifeel like griping today as you may have gathered so I thought I might take the opportunity to give you a few tips on how to handle cancer sufferers or even any seriously ill people.please do not take offence-it is meant as constructive advice.
Do not avoid us.We already feel like lepers,like we are somehow dirty,that people talk about you behind your backs.
I f you do not know what to say,say just that, or just say you are sorry.
Ask how we are,but don`t expect a glib answer back ,like fine,thank you-the best you should expect is "thanks for asking -i am having a good day",or" Thanks,but it is not great today".But do ask,it means alot.it is surprisng how many folk just launch right into their own health problems and then say something crass like-but of course it is nothing compared to your troubles-as if you need reminding.It is good to hear people talk about their aching joints from running etc,...but it should be reciprocal.
many cancer patients are called brave and courageous and i think the majority would agree that they hate this description of them . I usually say nothing when people say this to me but it makes me angry ,as i am just doing what i can to stay alive,there is no choice in the matter-yes ,it is very hard to bear at times,but you just have to get on with it and do the best you can.I want to survive,I am not scott of the Antartic prepared to sacrifice my life in the hope that others might survive.That is courage.
"You must stay optimistic-"is a kind of blame culture.I know people mean well by it ,meaning if your morale is good ,your illness is often easier to tackle.But the patient hears,so it is my fault if i die from this cancer ,because i let it get me down and brought it on myself.You try being positive all the time,when you are feeling wretched,and death is on your mind a lot of the time and you can`t chase the thoughts away as they seem so close.
Another bug bear is people seem to think they can ask you personal questions they would not dream of asking others. Like "do I believe in God?" If I do,I ain`t right impressed with him now,and if i don`t,then i am not suddenly going to start in the hope that he will cure me Cos i am a believer or that it will give me solace.Nothing will give me solace from losing my children and husband.
What you can do to help is be Positive and encouraging yourselves.You do not need to say anything ,(especially,it is going to be alright),but put your arm around the person ,show some warmth ,be normal. smile and talk about your world -we are still part of it ,even if we can`t participate as fully as we would like.
have agreat weekend.
What YOU can do to help is be Positive yourselves ,put a warm arm around us and show us your love-you do not need to say anything (especially "it will be alright")
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Caroline, I'm guilty of some of those things, although have never been so idiotic as to say 'It'll be all right'.
RépondreSupprimerPeople are so uncomfortable with serious illness, especially something life-threatening like cancer. Me included. I've certainly avoided people because of that - and that's a part of the reason I didn't get in touch with you. Afraid that you wouldn't be there any more, which is completely stupid, I know. Reading this post will help me, and a few others, no doubt, to be better at the business of responding to people who are ill.
I can hear your voice. xoxoDeb
Oh PS, there's a comment on my blog today from Ruth who gives a link that you might be interested in. I have no idea if you care to read about other people who are in a similar situation to yours, but maybe it could be a bit like a support group?
One of your sentences was especially helpful to me, Caroline...
RépondreSupprimer'be normal,smile and talk about your world -we are still part of it, even if we can`t participate as fully as we would like'
One wishes to be considerate and not speak of things that may bring sadness to someone, not wanting to be insensitive makes us too causious, and not normal I guess, which is what you say we should be...normal, warm and loving...positive in our thoughts as well.
Smiles to you Caroline,
Wanda
So glad I came along to say Hi! I've been told I'm quite good at giving warm and fuzzy hugs, so I think this is an ideal time to send one winging across Blogland to you, as I think you could do with one! My corner of blogland has some lovely people who come to call, so feel free to drop in for a smile or two - you never know who you might meet next! love n' hugs X
RépondreSupprimerGood morning Caroline - For the past 10 days or so I have been drinking a quarter of a lemon squeezed into a glass of hot water first thing in the morning. I have no idea if you could do this with a feeding tube but if you can you might try it for the phlegm.I see a real difference - more energy, no more dry heels, less phlegm, etc etc.
RépondreSupprimerSorry, but I do think you are brave or at least you sound brave. We may have no choice in our disease but we have a certain amount of choice in how we live with it. You are taking the high road. For one thing you are talking despite life making it damn hard to talk. Isn't the internet a voice for the voiceless?
Have a good day, [I never say that - it is so American! but in this case I think it is appropriate]
take care,
Betty
I just wrote a comment and it disappeared and I've no idea if it's in comment space or where? Rather than repeat, I'll just say thank you for the words of wisdom to those of us who want to do and say the right thing but do not always know how. I will send a copy of this post to my friend also dealing with cancer. Perhaps she'll start blogging.
RépondreSupprimerI liked your post. It is very helpful I believe because so many of us want to say the right thing, are afraid to say the wrong thing and end up by saying clichés. You said to talk about our world – well I’ll tell you what happened to me today. I had a small family in France and they are all gone apart from a second cousin. Years ago – decades I should say – I lost the photo albums that had all my family pictures in them. We looked but never found them. This afternoon my husband was moving some old boxes in the garage (we thought we knew what they contained) but one fell down. When it did, it showed that under the old blankets that were filling the box was one more blanket wrapped around my 3 photo albums. It is like finding my lost family again – my mom, dad, grandparents. I have not looked at these photos since the mid-80s!
RépondreSupprimerCaroline you got spunk girl just saying it like it is. Love that.
RépondreSupprimerWell my world today was taking tulip pictures over & over & over-Slow learner and all.
I wonder what food you miss the most.
It feels like I just want to rattle on with you. I wonder if there is anything good that has come from you experience with cancer? I wonder not to get you to be positive but am honestly curious. Thinking of you with my heart open wide.
all i can say is that i am so flattered that youtake the time to bother with me,and thatyou are all so obviously such caring people.
RépondreSupprimerAs for food,it is curious ,but i derive a lot of pleasure from cooking now,which i never used to .I can`t taste the food so it is a bit annoying to my husband that i am constantly asking him so what does it taste like? I get enjoyment fromthe smell and look and process and appreciation which i never had before.maybe i miss toast alot and that is probably more to do with missing texure ,rather than taste.
i am so glad you found those photoswhat atreasure.
Hello Caroline! Your lovely friend Deborah introduced us, although we don't really know each other. Popped in to say Hi and offer a hug. That Jinksy higher up the page writes some rare funny stuff you might like to look at. We bloggers keep you in our thoughts, our hearts.
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