I am almost 15, have a terminal illness [cancer] , and want more say in my treatment. Am I being unreasonable?

Question

I'm not exactly over the moon about it. I had hoped to find someone to grow old with, but thats not the card I've been dealt.

I'm pretty much having treatment after treatment forced on me. Don't misunderstand me, any treatment that would extend my life would be welcome, but this isn't it. This is just extending my death.

With 'pallative' treatment I would have about 18mo, most of which I would be able to enjoy, relatively able-bodied. Instead, I have to have chemo after chemo, meaning I'll be spending the next 3 years in a drawn out death, going hospital bed - my bed - toilet - sick bowl.

However, because I am only a 'child' until I reach 18, I have no choice in the matter, and my mother just can't let me go.

Do you think I am being selfish for wanting more of a say in this?

Answer 1

WELL IM SORRY THAT YOU ARE GOING THROUGH ALL THIS BUT TRY GETTING SOME HELP AT THIS HOSPITAL WHICH IS ONE OF THE BEST IN THE NATION I BET YOU'LL BE BETTER THERE...

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Answer 2

You really do not give us enough information. I have son who is also a teen and he has always had complete say over his treatment. He makes the decisions. So, I am somewhat perplexed.

Also, I am surprised that you were told your disease is terminal and than say that you have three years left. That is not how pediatric oncology works . . so what you need to do is have a second opinion.

You don't mention what type of cancer you have. There are only a few that are considered 'terminal' at the age of 15. What type of treatment are you having? What type of treatment is being forced on you? I am unsure why you are having so many problems with nausea . . my son has meds that completely control all these things . .he has excellent quality of life.

You definitely need to have more control over your treatment. Ask to speak with the pediatric social worker so you can make plans. There is no reason for you to be so miserable. Make sure you talk with your doctor too . .and tell him how you feel. Usually if a patient is terminal the doctor offers palliative and not curative treatment. So .. I am uncertain what is going on with you. They would not be treating you unless they thought you had a chance to survive. You should also be aware that in some cases cancer can be treated as a chronic disease . . much the way that diabetes is treated . . but it would require medication and your cooperation.

Good luck.

Answer 3

This is TERRIBLE!! I am sorry this is what you have been dealt with. I know it is completely different situation but it may help you in not sure... Im 29, my Mum was diagnosed with a rare but aggressive kidney cancer in may this year.. once discovered it had already spread to her liver and lung. She pasted away sept 7. A month before she pasted she was extremely sick and we begged the oncology team to put her on treatment. It was the wrong thing it made her sicker and her life miserable she would have been better just letting nature take its course and enjoy what time she had left. But the reason why we wanted to do this was because we where in denial. We couldnt accept the fact she would die. We wanted to try everything possible to keep her alive because we couldnt bare the thought of losing her. She was my best friend and was still clutching for hope even though there was none. Yes legally you cant make decision until your 18, but i can completely understand where you are coming from. You are not being selfish, it sounds like you have accepted your fate with a very mature attitude. But please understand your Mum is only trying to protect you, and do everything the doctors suggest... im sure she cant bare the thought of her daughter not being here anymore. It is absolutely heartbreaking. please still down and discuss it with her.... or at your next appointment with your oncologist speak up and let yourself be heard. Contact me if you need support... x

Answer 4

Lynzi,

My heart is breaking for you sweetheart.

Depending on what state you live in you could very well have a lot more say in the matter. You should talk to your pastor or a trusted friend or adult that will listen to you. Or the next time you are at the hospital ask someone from social services to come see you. You could also go to court and ask for the court to appoint you a representative that will best serve you and your needs.

BUT, before you do any of that, I would talk to your mother. Please understand that she does not want to lose you and is grasping at anything that she thinks will "cure" you and keep you alive longer. Ask her how she would want to die. Would she rather die being treated, repeatedly, with treatments that show no promise other than a few extra weeks? Or would she rather have a better quality of life for a shorter term.

I am 45 and I have brain cancer. My husband promised me when we got married that we could have wheelchair races when we got older. We don't know if I will live long enough to do that. I have told him that I would prefer to live a shorter life with better quality than to live a longer life with compromised abilities.

I know that sometimes life does not seem fair and in this instance I would agree.

You will be in my heart and in my prayers. I hope you find the peace you are seeking.

Hugs.

Answer 5

I certainly think you have a right to choose how you want to deal with your own illness. It's your life, after all.

I have actually read some alternative healing methods for cancer that don't involve hospitals at all and they are pretty simple to implement.

One is to start what is called a raw food diet. This is a diet composed mostly of fruits and vegetables, nuts and herbs. These things have very healing qualities that can be slowed down by the energy the body takes to digest cooked food.
And some herbs, like mint, can be very beneficial to the body. Things like 100% fruit juice and V8 juice and herbs are very inexpensive to buy and far easier to take then some hospital treatments.

I'll give you some sites here to give you some more information on it.

I think your instincts about chemo are completely right. I've heard much the same news about chemo treatments killing patients rather than helping them.

You can do a lot of research on your own to help yourself. Even looking on amazon.com, you can find many books on how people cured themselves of cancer using all natural methods.

Of course, these alternative treatments should be done with a critical eye, but then, some hospital treatments should also be looked at with a critical view.

Hope this helps, best of luck :)

.

Answer 6

If you were my child you would have the first and most important choice. You have only had 15 years and how you want to spend you time left here on this planet should be up to you. We all have such a short time here and dont know when we will die, but you know that it is soon. Get out and live your life but first talk to your parents and recognise that you know how hard it is for them to lose you but you need to embrace the life you have left the way you want to have it. If this treatment was going to cure you well. maybe I would think differently, I would encourage you to do as much or as little of what you want to do or experience be creative and enjoy youself. But...you were waiting for the but werent you.... Your mum and dad are losing the most important thing in their life....YOU...Be kind to them while you try and find that happy medium to your rest of your life no matter how long or short.

Answer 7

parent's often forget (or rather have no clue!) that a child at your age should have the right to choose whatever means you feel might better your quality of life.

you didn't say what cancer, but i do know that it's either chemo or not. there will be always a type of treatment that may help.

read into angioplastins dear. i just recently met the sweetest little 5 year old who's tumor was stablized, the other little girl diagnosed just two weeks from her own has since passed on.

good luck!

Answer 8

You are absolutely not being unreasonable to have a part in your treatment decisions! If you haven't already, talk to your parents, the doctors, anyone in any sort of position of power over this situation. (of course, talk to God... I will say a prayer for you too).
Sometimes when things are so serious for such a young lady adults tend to take over because they think they may have more knowledge to make the crucial decisions... which is true in many cases. However, you need to make it clear that you can understand explanations of options, therapies, etc. and would like to at least have some input in the outcome since it ultimately will effect YOU the most...
Also, I would encourage you to look into 2nd, 3rd,... opinions. Many doctors have differing philosophies... and never forget the power of positive thinking... your mind can do amazing things... do me a favor, and look up the story of Lance Armstrong... Take care, I wish you well... remember to laugh, it is great therapy:)

Answer 9

I will give you an answer.

First make this clear: if you have a chance to cure, then go on. If that is not so (terminal, palliative) then read my story.

No you're not selfish to ask that. I would even say it is necessary.
In your problem, there is a medical and a human aspect of life.
The medical aspect is (shortly) to keep the patient alive as long as possible. Yes? So you get all kinds of therapy.
Those therapies have additional unwanted effects, like being tired, loosing your hair, vomiting, be miserable etc.But that's not concern number 1 for the medical science. Concern is to keep the patient alive as long as possible.

Now, there is the human aspect of a disease, cancer or not. It's not the sickness that plays role number 1, but the person who has it. And that person has the right on a human, respectfull life and also death.
And if you have to die, let the last months or weeks you live be nice, without pain, without moving from bed to toilet. If you can enjoy and have fun in that last period, with friends and family, it is more worth TO YOU then 3 additional months extra, slowly dying in alot of misery.

Mum will have to let you go anyway, honey. You can bet she's having the worst time of her life, nothing is heavier than having to give up your own child. That's why she keeps on fighting, whatever. So try to understand her point of view too.

so conclusion:

You don't mind going earlier, but it has to be in a human way. Enjoy what's left.
Mum wants to keep you here as long as possible, whatever it takes.
You have both a respectfull point of view, each one of you is right in his way.

I would suggest, as a father and as a GP, that you try the therapy as long as YOU say it's livable. If it becomes too much for you, you get too much side effects, then stop all therapy. Ask the doc for the necessary medication to be free of pain, and start enjoying life for what is left of it, have fun, with the people you know.
I really wish you the best honey... you're free to contact me if you wish... Please let mum read my answer.

Answer 10

True... but be thankful you live in THESE days, and your friend might be thankful his Dad didn't come down with cancer until almost 60. My Mom started with breast cancer when she was 30 (back in 1969) and the only option then was a RADICAL mastectomey followed by heavy radiation and chemo... three years later it was ovarian cancer and a hystorectomy... three years after that it was the other breast and another mastectomy... and then 3 years later was lung cancer... that eventually killed her at age 52. I had skin-cancers detected when I was 28 (oops, too many Summers spent at the pool in the days before sun-block)... I had 48 individual cancers removed from my back and shoulders, and THANK GOD I've seen nothing since thanks to regular monitoring.

Answer 11

No. You have a right to do it your way. Your mom doesn't want to let you go and she's panicking. Sit down with her and tell her what it all means to you and what you want. You put it so well. Show how she would benefit to have you also enjoying things better than being sick all the time. This is not an unreasonable request. If your mother won't listen to you, get another adult involved in this.