HATE THIS

[Daniellafriman]

how do you said to your family and friends that your oc can't be cured. They all cant understand that I can live with this for ages.

Incurable does not mean prognosis for 1-6months, what they all thought.

Argh.. :/

[Petrolhead]

Am with you completely on this. I am coming up for my 6th chemo on Monday and remarks have all been in the vein of - well that's it now, back to normal. I have tried to educate that it will never be quite the same but most people do not want to hear that and are more comfortable to get back to their normal. The fact that it's considered a chronic disease is perhaps too much for some as living with the big C was once considered unthinkable.

Thinking of you

Fay

[Sunfleury-UK in reply to Petrolhead]

Fay, if you haven't already, do have a look at the article by Dr Peter Harvey that I shared earlier this week... He describes and explains the needs for others for 'back to normal' really helpfully I think along with so much more- Its really worth downloading the longer version... Best wishes Sxx

[Petrolhead in reply to Sunfleury-UK]

Cheers for that - will do

Fay

[mumclark]

Oh dear! This is the impossible situation!! I have given up trying. Luckily my immediate family "understand" but anyone else it goes from Oh dear you are so brave, still at work - really???? To so your treatment is over thats great back to normal then. Yes treatment is over for now!

We have a chronic illness which can for quite some time be treated. We live our lives in 3 month steps but we are here and we are brave, and grateful. I wish people could understand!!!

Good luck!

Love Cheryl x

[Purple-iris in reply to mumclark]

Yes you have described it exactly Cheryl . Just when you think someone has understood they will ask a question which shows they haven't got a clue !

Mind you I am still coming to terms with the balancing act so must be difficult for others not part of the gang !

Love and best wishes

Kim X

[Hidden in reply to Purple-iris]

So true Kim. On good days, I forget I am ill and whizz around at top speed, so for friends and colleagues it must be doubly confusing. One day I can't get off the sofa and a few days later I'm perfectly "normal". Horrid dratted disease. Dawn x

[Sunfleury-UK]

I say that 'cured' isn't a word they (medical teams) use, that right now my situation is NED and I'm grateful for that and (as Cheryl says above) living my life in 6monthly chunks & hopeful this will remain the case... Sx

[Hidden]

Ovarian Cancer is manageable and I for one am proof of this. Diagnosed 2006 recurrence 2009/2010 another recurrence and mini recurrence since and so far so good. My oncologist says it like this, you watch it like a pressure cooker and treat before lid explodes. So you are starting your sixth Chemo Petrol head I hope it goes well. Here in Ireland it may stop at five why I just dont know

[Petrolhead in reply to Hidden]

Hi Suzuki

Interesting on the different regimes etc. For my sort - mucinous Ireland has Folfox as first line treatment which is what I wanted but was not allowed and I have to have the carbo/taxol regime. England does not use this till recurrence. I am not sure any of them really knows the best or optimum treatment!

Regards Fay

[CallmeMum]

Hi lovely,

Depending on your humour and if they feel OMG she's only got months left....... I would say it will put me in a box one day as everybody will be BUT that's not today so for now until the day comes treat me as a normal human being yes there will be good days and bad days but let's make the most of it!

Xxx

[LittleSan]

Ooh it's tricky this isn't it? Nearly six years after diagnosis, I'm not sure I get this one right.....

For the doomsayers when they get downbeat even after I say it's treated as a chronic disease these days, I tell them "In this life you are either dead or alive and I am very much alive so I'm getting on with it" (a saying I picked up on this site from someone ).

For the one's who are in denial and are insistent I will be cured, I struggle a little more. I say that I am doing really well and the cancer is behaving itself at the moment but am really not sure if they think I'm just being negative about my future health.

Yet another emotional conundrum in the complex life we lead with OVC.

Sending good wishes to all.

Sandra

[antheamary]

Hi i get similar questions like , if they've taken out your ovaries how can you still have ovarian cancer? Or havent they removed the tumours?

You have obviously thought hard about your replies & i hope you find one that suits you. I don't want to sound miserable but i feel i have to explain it all.

All the best

[Deern]

Right, it means you have cancer, just like heart disease, liver disease, and any other you name that affects ones life on a day to day basis. It's not any different. You have to work with it, do what you can to maintain it and most of all never stop pushing on. We have come along way since the days of our ancestors so let's try to remember. I was reading a book written by a woman on kindle who says she would eat 2 apple seeds ( yes you heard right seeds she chewed them up and swallow them) a day everyday along with her therapies sounds like udder madness, but she claims it's a miracle to her. Faith in something is very powerful. Before your disease you may of just been living without a cause, but now you live each and everyday with meaning, because you choose to live.

[Deern]

Happy Nurses Week in American!

[rppizio]

So many of us are in your shoes. I constantly use the words chronic and stable, remission when addressing these issues till they get it. Even if they don't acknowledge it verbally, subconsciously it soaks in and they will get it after some time. For the really hard headed ones, I often share that I pray I maybe I will be one of that 40 % that get to see a full remission. I am not a fan of the word cure, it has too high of expectations for this type of cancer. It does get easier in time.

[thesilent1]

Explain to them that its like having a chronic illness that can be managed but not cured, like arthritis or diabetes. That might help them. Ann xx

[Hidden]

All good replies so far...I loved the pressure cooker image.

I've taken to comparing it with a jack in the box needing to be stuffed back in every so often.

And getting rather pompous and philosophical about how people have been seduced by medical magic and have expectations unimaginible in most of the world or 100 years ago here. And we all have to die, could do and do in a whole range of ways and timings, with and without conditions like ours. But we go on living too!

[Hidden in reply to Hidden]

That was the way my onc explained it and it actually calmed me a little when I got home thinking can cope with this. Hoping the lid isnt going to blow when I see him end of the month, My gp is anxious about my liver function tests he has been doing but my oncologist isnt worried so far. Had them repeated today so hoping nothing is amiss.

[Hidden in reply to Hidden]

Fingers crossed for you x

[Deern]

My father had heart disease then years later COPD from chain smoking then cancer of the lung. First heart attack destroyed most of his heart at only 42, strong man he decided he wanted to live after being told the grim news you need a new heart. He never quit his habits he just thought he will live until he wants to not live 20 years later open heart triple bypass, again grim news But again he never accepted it went on living day by day because that's all we can do and then another 20 years later now 80, strange they told him 40 years ago the muscle damage was to extensive, but somehow he grew new pathways call collateral circulation and adapted, so was it his ability to believe in himself and go on living day by day sitting on a ticking time bomb but never accepting defeat. I think so he finally said enough and in June 2014 he left us peacefully in his sleep at 84. I shall never give up as I'm much like my father, so whatever that's thrown my way in the upcoming weeks, months and years I'll will be strong. Just sharing.