Incurable Cancer
Sun, 19/12/2010 - 16:00
Hi there,
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...
Sun, 19/12/2010 - 21:21
#2
Re: Incurable Cancer
Hi Rebecca
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.
Julie
Sun, 19/12/2010 - 22:37
#3
Re: Incurable Cancer
Hi Rebecca
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.
Writing helps.
H
Mon, 20/12/2010 - 17:02
#4
Re: Incurable Cancer
Hi Rebecca,
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?
Cheers Vicki
The only you have total control over is your ATTITUDE
Tue, 21/12/2010 - 19:26
#5
Re: Incurable Cancer
Hi everyone,
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
Sat, 01/01/2011 - 14:11
#6
Re: Incurable Cancer
Hi Rebecca,
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.
Cheers
Vicki
Hope you had a good christmas and new year.
Tue, 21/12/2010 - 20:16
#7
Re: Incurable Cancer
Hey Rebecca
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.
Julie
Tue, 21/12/2010 - 23:35
#8
Re: Incurable Cancer
keep fighting and never give up! i believe it has a lot ti do with mind over matter ur a very brave girl my thoughts r with u xo
Sat, 01/01/2011 - 17:00
#9
Re: Incurable Cancer
G'day Rebecca
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.
Good Luck
Sailor
A ship is safe in harbor, but that is not what a ship is for. Anon
Mon, 03/01/2011 - 19:34
#10
Re: Incurable Cancer
Hi Rebecca,
You are not alone.
I have incurable cancer with the diagnosis of stage D but finger and toes crossed I'm still here. I'm in my forties but it does matter what age you are, it still hurts.
It is a lonely journey but just hang in there, everyone's make-up is genetically different and so everyone has hope of conquering the cancer even against the statistics. And you know oncologists aren't in our bodies, they too can be wrong. I now believe in the will and strength of your mind, body and spirit and I will never give up.
And the big thing for me now is I don't let the cancer absorb or dictate my life. I'm happy and really content with my life even though I'm having treatment which i dread. But I don't let it stop me from having a quality of life, i still do the things I love, eat and drink. And i run every day anything from 6-7 kms this gives me the energy and inner self to believe I will get through this.
regards
Purple Star
Thu, 17/03/2011 - 19:20
#11
Re: Incurable Cancer
Hi Rebecca
I also have been told i have 12to 18 months to live,but i believe i have too much to live for i have a loving wife,daughter and grand children,i also have great mates supporting us I havent told anyone out of the family,about the oncologists diagnosis as i dont want them to worry to much,if and when the time comes i will inform them,I dont believe the expectancy they have given me,we are all very different inside i have told the oncologist i am going to live much longer so i am very determined,i have been given bad news before and i defied the odds,so keep doing what ever needs t0o be done to survive
regards
kj
Sat, 09/04/2011 - 21:10
#12
Re: Incurable Cancer
I wonder how you are doing now, Rebecca?
My husband, at 15 months was given a week to live. He is my world, my hope and we now have a little boy and a little one on the way.
Anything is possible!
My thoughts and best wishes are with you.
Krista.
Tue, 12/04/2011 - 13:52
#13
Re: Incurable Cancer
Hi everyone,
I have just joined and really need some help, I went in to have a cyst removed from one of my ovaries and whilst under they found my bowel cancer. I was told yesterday that the two were definitely connected; the bowel cancer had spread to my ovary. Now I have been told to "be prepared for the short term" I feel like my heart has broken; I have a beautiful 20 month old little girl and a loving husband. I have been deeply comforted by the above posts. Is there any advice any one can give me to help?
Tue, 12/04/2011 - 18:02
#14
Re: Incurable Cancer
Oh wow. I am so sorry to hear that. I'm probably not going to be much help but honey, don't quit, don't stop fighting. Tell your Doctors you are not taking no for an answer and need them to give you assistance to fight this no matter what. You have to much to live for.
There's a chance you may need to get a second opinion.
Has the cancer spread anywhere else? Can they not perform radical surgery on you? Anything is better than the outcome they have given you.
Once again, I am so sorry and I wish there was more I could do to help.
Krista.
Sun, 24/04/2011 - 11:00
#15
Re: Incurable Cancer
The mother of someone I know went to her small town, kindly oncologist who told her she had 6 months to live. She calculated that date and drew a circle around it on her calendar. Then, every day she put a X on the current date. As her kids got wise to her actions, they told her that she could plan her life rather than her death. She refused to go to a nearby university hospital for a, perhaps, more informed second opinion. She just kept declining as she got closer to the circle on her calendar. She died on that fatal day. It all went as planned; not the day before or the day after but just as she was told by her trusted expert.
We all must check out one day, but nobody knows that day until it arrives. (Has anyone noticed that doctors get licenses to "Practice?") In the many cancer clinics I've been to, I've met dozens of people who were told years earlier that there was no hope and given a prognosis of 6 months or a year. One man was told he wouldn't last the night -- a friend came in and convinced him to take some supplements and some Toco powder through his feeding tube. In 61 days he was again climbing hills on his farm. That was over 20 years ago.
As cancer patient, we sometimes are the center of attention and we trust the people who love us. And we all are doing the best we know. I say a life is worth more than a drama and we know this viscerally. I've seen the attraction of that drama, including the possible release from the long struggle. The answer for me is to find out where I'm failing to speak my truth and dance my dance so that passing discomfort just emphasizes the value of life. My first oncologist (whose treatment kept my cancer at bay for 10 years) told me, "I can't save your life; I can do surgery and radiation, but only you can do that by making your life so much fun and so joyous you just don't have time to die."
I can't go cosmic when beautiful people die. I can salute their life, celebrate their fulfillment and acknowledge my own incomplete information. But let's help each other stick around a while. Let's turn on to our own power and retrieve the power we've given to "smarter" friends and professionals who love us but unknowingly fill us with fear.
A few of Sharon's rules:
I get the docs to agree that we are in partnership for working on my life not my death. We also agree that I will let him/her know when I'm going to die. If they equivocate on these ("Of course, we do what we can buzz mumble...ahem..."), they're very nicely fired.
As Doc Warner said, "People don't die of cancer, their doctors scare them to death." If I can, my second opinion is not from someone with the same clinic.
Links?
The UK is ahead of us in some ways medically:
http://www.telegraph.co.uk/health/8125564/A-life-with-incurable-breast-c...
Mainstream medicine is making some good discoveries, though still use toxic solutions that should more often be reserved for immediate control rather than the only ongoing choice:
http://yalepress.typepad.com/fightingcancer/2009/10/when-the-diagnosis-i...
People w/incurable diagnoses connect:
http://www.cancerconnections.com.au/content/incurable-cancer
Help for advanced cancer treatment (and don't wait until your doc gives up) http://www.cancertutor.com/
Just google words like hope for csancer, cancer cures, breakthroughs--and stuff like that. See you in the Funnies! Love!
This poem is from a young girl in New York who was told she had six months. She has given up hope because she was given no power, just a "verdict." I sent her friend your forum's website--that's how I got here! You can give her back her life if she checks in. Thanks and much love, --Sharon
SLOW DANCE
Have you ever
watched
kids
On a merry-go-round?
Or listened to
the
rain
Slapping on the ground?
Ever followed a
butterfly's erratic flight?
Or gazed at the sun into the
fading
night?
You better slow down.
Don't
dance so
fast.
Time is short.
The music
won't
last.
Do you run through each day
On
the
fly?
When you ask How are you?
Do you hear
the
reply?
When the day is done
Do you lie
in your
bed
With the next hundred chores
Running through
your head?
You'd better
slow down
Don't dance so
fast.
Time is
short.
The music won't
last.
Ever told your
child,
We'll do it
tomorrow?
And in your
haste,
Not see
his
sorrow?
Ever lost
touch,
Let a good
friendship die
Cause you
never had time
To call
and say,'Hi'
You'd
better slow down.
Don't dance
so fast.
Time
is short.
The music won't
last..
When you run
so fast to get somewhere
You
miss half the fun of getting
there.
When you worry and hurry
through your
day,
It is like an unopened
gift....
Thrown
away.
Life is not a
race.
Do take it
slower
Hear the
music
Before the song is
over.
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
