Re: The Carer

For everyone, patients, families, friends, carers...share your methods for coping, your frustrations and seek support

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pennycsf
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Re: The Carer

Postby pennycsf » Thu Apr 26, 2012 9:27 pm

Below is a quote from a post which was in reply to a new member, Maria, in the "Welcome Forum". The original can be read there with the full text on both posts, under "New at this game". I feel it is useful to copy this here for wider circulation, many of our Forum members are carers and may well sympathise with the thoughts of "evianers".

We have every conceivable sympathy for anyone who has unfortunately to post on this forum. Tragic that the necessity is there in the first place, so not wishing to be one of those contributors who posts once and then forgets, may I say that we feel deeply for you in your physical and psychological struggles.
However, and I hope I am not going to be too controversial here - spare a wee thought for the carers. They are also going through every form of hell. Never one to have much hair in the first place, what remains of mine is falling out in chunks. Added to which, the patient has fortunately not lost any weight, but I have! Gone down from 45 kgs [not much to start with] to 42 kgs due to all the stress. OK so I am not the "victim" here but for those who have to support the patients, both physically and mentally, spare us a thought too - and thanks in advance for that. evianers


From the posts elsewhere on the Forum, it is clear that carers are carrying a heavy burden. Whilst the "victims" are busy struggling with treatment, the carers are looking on, unable to help with any side effects, worrying about the future, battling with the health system.......... And I imagine that the sympathy from outsiders also tends to go to the patient, for obvious reasons!

Here on this Forum, we do think of you too, evianers. We are here for everyone touched by cancer in some way whether they are patients, partners, carers or simply friends.

Penny :D

evianers
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Re: The Carer

Postby evianers » Sat May 05, 2012 7:01 pm

Obviously things will inevitably become much better in due course: it is transition period which is so demanding, physically and psychologically. There are good days and bad, some obvsiouly better than others. Example, we wanted to go for a gentle walk yesterday, starting in a fashion in which we mean to go on [we are great walkers]. We had only been going for some 5 minutes, when the necessary "equipment" that OH has to transport upon his person at present, fell down and we had to hastily return chez nous. It would have been ridiculously funny under other circumstances, but because of the status quo, we both felt miserable that our small chance to enjoy some sunshine and fresh air was necessarily drastically curtailed. Not the fin du monde but yet another challenge to overcome on a daily basis.

termietermite
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Re: The Carer

Postby termietermite » Sat May 05, 2012 7:40 pm

Oh, Evaniers, I so know how you feel. My poor o/h not only has to put up with the fact that I've had cancer but also that I had a bad road accident four years ago and am pretty disabled to boot. The end of the walks and going out together are the thing that make us even more fed up with the whole thing. We are great motor racing fans and instead of being able to walk all around the circuits with our cameras, he has to shove me around ina r*ddy wheelchair, then come home and cook etc etc.

Then, of course, it does put a strain on the relationship because then I don't like to ask him to do too much stuff, and yet I get grumpy if I need to have something done for me and he keeps putting it off - not through malice but just because the poor lad is knackered himself!

biggles
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Re: Re: The Carer

Postby biggles » Sat May 05, 2012 9:04 pm

Hmmph, it is very difficult and must be hell for the carer. As I have been on this forum almost from the beginning, I remembered that there have been other similar posts, so I tapped in "carer" in the "search" box and a few posts came up. It has made me giggle a bit as one of the "carers" is my OH and it was funny, in retrospect, to see what he had put. I hope I am less trouble now, but I doubt it!

Seriously tho', I am through treatment, now declared fit and in recession and don't have the added health problems of Termie, so all should be "normal". Unfortunately, normal before cancer and normal after do not seem to be quite the same. I doubt even my close circle of family or friends appreciate that cancer treatment leaves a few legacies - poor husband knows full well because it is him to whom I moan, he gets the full brunt when I am fed up. Thank goodness I had breast cancer, at least my legs are fully operational! We too are great outdoors people, that's why we are here in France, we wanted a greater outdoor life. I grudgingly handled the end of tennis playing, gratefully passed on to hubby window cleaning, but I get frustrated that I can't dig the garden (or make shortbread - cooking being another passion) without my arm swelling up. I still do both, arm swells, OH gets cross and we have the nightmare worry of whether it will develop into serious lymphoedema........ OH complains that I should stop trying, I complain that I need to enjoy something, we both shout a bit and then we open another bottle of rather nice wine.

It's Saturday night, I shall have a glass now!
Biggles ;)

evianers
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Re: The Carer

Postby evianers » Sun May 06, 2012 8:22 am

Sometimes, when I read posts from other Forum users, I quietly feel ashamed in that their plight is far worse than ours. We should count ourselves lucky that we are only temporarily disabled and that with strength of purpose, our lives should return more or less return to what they were previously. So your post was humbling and I am now determined to stop feeling sorry for myself and make the best of life.
Having said that, the cloud which is hanging over us as to whether the two tumours found on the kidneys will turn out to be benign or not is very worrying but this is for the future, not the present.
After torrential rain overnight, the lake is now calm, with a hint of later sunshine, so we'll try another walk later when it is slightly warmer. We live in the most beautiful area imaginable so must be grateful for small mercies.

francis
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Re: The Carer

Postby francis » Sun May 06, 2012 10:25 am

evianers wrote:Sometimes, when I read posts from other Forum users, I quietly feel ashamed in that their plight is far worse than ours.


No reason at all to feel this way!

One of the uses of this forum is to allow anyone to sound off (anonymously) and get rid of some of the awful build-up of of pressure that can occur when you feel that you can't talk about your problems to family and friends because you are afraid they will think you are moaning.

Everyone has different problems - but we can all learn something from others.

Bon courage!

termietermite
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Re: The Carer

Postby termietermite » Wed May 09, 2012 11:48 am

francis wrote:
evianers wrote:Sometimes, when I read posts from other Forum users, I quietly feel ashamed in that their plight is far worse than ours.


No reason at all to feel this way!


Absolutely. When I re-read my post I realise that I sounded a bit like that Monty Python sketch where they compete for the worst and most poverty-stricken childhood ("You were lucky. We lived in a shoebox in t'middle of t'road...") Just because other people have problems too, it doesn't make yours any less significant.

Maybe you need a break? I went to the UK for a week in March and stayed with friends. It did both of us the world of good to have a bit of time off after all the chemo and operations etc!

evianers
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Re: Re: The Carer

Postby evianers » Wed May 09, 2012 11:54 am

Thank you for your kind thoughts and sentiments.
We were in fact due to go away the weekend after the surgery but had to cancel of course.
It's a little difficult at the moment, what with support stockings and a wee bag [wee in both
senses of the word]. Would make travelling rather uncomfortable. But we'll get there.
Next step is to have the tumours on the kidneys investigated - hopefully these will be benign
so we can really start to relax and enjoy life again, especially after the catheter finally goes!

pennycsf
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Re: The Carer

Postby pennycsf » Wed May 09, 2012 5:56 pm

Heavens Termie, you are showing your age there! I remember that Monty Python sketch very well, giggling as I write. :lol:

CarolineLe
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Re: Re: The Carer

Postby CarolineLe » Fri Mar 17, 2017 11:56 pm

I know this is an old thread, but it was comforting to find something that took the carers into account. I feel as if there are different hierarchies when it comes to caring for family or friends that have been diagnosed, but regardless it affects you in some way or form. Its great to know that there are resources out there for all of us.


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