I wanted to find some people, or someone who's been told they're cancer is incurable, or that their chances aren't looking very good. I feel a bit lonely because I mostly read about 'survivor' experiences and while I consider anyone with cancer as a survivor, not just the ones in the 5 year mark, I'd like to find someone who is facing the same kinds of demons as me. Is this you? Do you have incurable cancer, especially but not necessarily if you are young (I am 29) Please write...
hey there do you mind me asking what type of cancer you have? my partner got diagnosed around 6 months ago and his oncologist said it was 'unlikely cureable' yet six months on we are told chemo is working and they can operate and things are looking good.. i believe only god can decide not the doctors! have hope and never give up! my partner who is also young is fighting it fit.. of course after chemo he feels crap but he's doing very well.. i think that altho it sucks to have this disease at a young age you also have your youth on your side
I was one year older than you when I was first diagnosed with cancer. That was some 22 years ago (now i have revealed my ancientness ... lol) I was given the possibility of a month to live or "x" amount of years and fortunately with that one I got the x. It is hard to be told something like that.
I have an incurable cancer too. To me that means they haven't found a cure yet. I know there have been great advances since I was diagnosed three years ago and I keep in touch with that on the Internet. It's all positive.
I am not as young as you. OK, I am 55. My condition is called multiple myeloma. What's yours?
It was pretty scary for ten months, then I was in remission until recently. Now it's not so scary. I look at it as something to manage.
I too have been told that mine is incurable and it will shorten my life. this was 6 months age now. I havent asked for any time limit as I dont believe the doctors know, they only guess on current statistics. If they give you a time limit, it sticks in your head and who knows what effect this can have.
I have just turned 50 this year. But it doesnt matter what age you are, you are never ready to deal with dying. My cancer has been responding well to chemo so far but it will never completely go away. I have oesophageal cancer with secondaries to the liver. Because it has spread is one reason they tell they cant cure you. They cant tell where it may pop up next.
You have to deal with each day as it comes and its not easy. Like the song says, "some days are diamonds , some days are stone"
Every now and then I get an overwhelming feeling wash over me of realising that we are mortal and that my life is limited. What can I do? I can take each moment as it comes and deal with it one at a time. I dont know where I will be in 6 months or 3 years, but I am here at the moment and thats what counts really.
LOL Here I am all philosophical. You have alot to think about when they tell you those words.
Keep fighting and never lie down and never ever give up. The doctors will do their best and you can do alot too.
Where is your cancer may we ask?
The only you have total control over is your ATTITUDE
Thanks so much for replying! Just by writing you've made me feel pretty good. I love so much your stories that say I was told a month and I'm still here years later.
I was diagnosed in June,
I have cancer of unknown primary that has metastasised to my lymph glands, liver and bones I think the bones, the drs are pretty non committal about the bones. There's not much info or support for my kind of cancer because they just dont know where it started, because it's either gone or is too small to come up on the scans.
The oncologist has told me that it's incurable but I'm having chemo she says to make me live a bit longer. I haven't been given any prognosis in amount of time but I have been given the impression that it's less than 12 months.
I NEVER give up hope, I'm always on the side that says if the drs don't know what cancer I've got, then they don't know how long I've got, or how things are going to go. The worse my pain gets though, the more I get the feeling that its not going so well and my last scan wasn't good.
However, I'm facing issues that I thought I'd face in my old age, things like tying up loose ends, not leaving things unsaid, writing my will, worrying if the God I pray to is listening, or even there.
I get jealous and resentful of my friends (although so grateful of them)for having beers on the weekend and bitching about work like I use to. This is what I feel like I need to know someone else especially my age, is going through.
@maddie86, I'm so glad your partner is getting better! I hope that's what happens to me!!
@Jules2, how did you cope, who could you talk to that would have shared your experience? Was there a point when you realised you were outliving your sentence? How did you stop the morbid thoughts popping into your head (if you had any) if you thought it was only a month?
@harker, thanks, I do write, I love it and it does help. I hope the cancer I've got is managable too.
@Vicki Anne, thanks, you're right, at no age are you ready to deal with dying. But I've had my future ripped away from me, I wanted to do so many things. Have children, start a business, go more places overseas, finish my masters.
Same as me, they cant tell me anything about what the cancer I've got is going to do and when they do, they're wrong.
'Like the song says, "some days are diamonds , some days are stone"' I like that a lot, what song is it from?
I'm often philosophical about it like you, I really appreciate the moments I've got. But it still sucks, and there's so many emotional things on the journey.
Yeah I'm the same as you, the cancer has spread so that's basically why they can't cure it.
Thanks again to you all I'm so happy that you responded made my day
I didn't have anyone that shared my experience and I got on with life as much as I could. When i had my 6 week checkup with my surgeon (radical removal of my lymph glands) he asked if I was having any problems. Well of course, I had gone from not being able to pick up a pen to umpiring basketball and I couldn't do jump balls ... that was a problem! 🙂 I couldn't play so I umpired instead. Slowly but surely as my testing blew out to months instead of weekly I would relax and think less of cancer and what might happen to me.
My son was only 11 weeks old when I was diagnosed and 3 weeks old when I found the lump. Babies don't stop just because we have cancer and that was a big distraction for me. Being a single parent I was advised to put my affairs in order as to who would have my child. That was one thing I couldn't do, just could not face giving up my son to someone else.
Morbid thoughts are kind of par the course but I tried not to stay there in that place. I think by putting plans in place 'just in case' helped. I took control of my thoughts and tried to focus on other things. For instance, each night I had a little ritual and I would use imagery and a bit of yoga to aid relaxation. I worked out what I needed as an individual to get through this process. For me it was adequate sleep and rest, I don't do well without those things. I don't think there is any easy way for anyone and we all find our own ways of dealing.
Sorry the above is a bit long winded ... :)
Glad you got something out of everyone's replies ... there are some really good folk on this site.
The song "some days are diamonds" is a John Denver song. The rest of the song is a bit melancholy I'm afraid. I just like those two lines which are part of the chorus.
Hope you had a good christmas and new year.
Can't think why I haven't responded earlier to your post, I guess there has been a lot happening in my life in the past few weeks. Anyway, I can respond from the point of someone who has lived with an incurable cancer for the past twelve years and managed to maintain a fairly active life of good quality in that time.
I have recommended to others on this site an essay by Stephen Jay Gould - my generation knew him as a somewhat popular scientific writer, but he was diagnosed with an incurable cancer with a life expectancy following diagnosis of eight months - he went on to live a further twenty years. His article, The Median Isn't the Message can be found at http://cancerguide.org/median_not_msg.html.
Now I'm ancient - I'm even older than Harker, so that is saying something - but I agree with Harker that the word incurable means that they haven't found a cure yet. Increasingly, however, they are finding ways to control cancers, if not cure them. That is my situation - it can't be cured, but they manage to keep it under control. Eventually I will become resistant to the treatment but already there are newer treatments in clinical trial that are looking real good.
That is something else you need to keep an eye on - what clinical trials are. Clinical trials are great as you get really good treatment and they do not use a placebo - it is the best available current treatment available for your cancer com pared to the new treatment. You can find out more about clinical trials, where they are available and whether or not you are eligible at two websites:
http://www.cancervic.org.au/trails for trials in Victoria
http://www.australiancancertrials.gov.au for national trials
Don't neglect the psychological effects of having cancer and knowing that it is not yet cureable. You can get to see a psychologist on medicare - your GP will have the details, ask them.
There are also a number of organisations out their that support younger adults -(those a lot younger than Harker and myself!!) and there is a group on this site. One such organisation is the Warwick Foundation - http://www.thewarwickfoundation.org.au.
A ship is safe in harbor, but that is not what a ship is for. Anon
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.