a cancer question- all opinions greatfully recieved!

[reallywoundup]

This is a bit difficult really i need to know what sort of things people would want to do if they were ever put into the situation of being diagnosed with terminal cancer.

The cancer spread could be slowed down using a combination of treatments which could then give a life span of maybe another 3-4 years, but the side effects are often pretty dire, and therefore any remaining time could be spent feeling really crap, but with family.

Or

Would you sod the treatment and spend the next two years having the time of your life and trying to make as many memories for your friends, family and children as possible.

Or would you try to combine the two and hope that you strike a balance between feeling uselessly crap and hoping that the treatment is working.

Also- would you want to work through a 'list' of things to do before...?

I know this is a difficult subject- and that's why I'm asking mn'ers opinions- it seems to be a very taboo subject in rl

I am so very sorry for your situation. I have no words of wisdom and I have no direct experience of cancer treatment.

What ever decision you make, I hope you feel you can and have made with your dh's full support and agreement.

I wish you lots of strength.

x

reallywoundup - you have been fab to me and Cakes on the other thread and I wish I could think of some ideas of what I'd do - when I read the op I immediately thought the sod it bit, but then the practical,must do something bit of me thought about the combining option. I think 3-4 years of feeling crap would be hell to bear all round,for you and loved ones. Having said that, someone I know died days ago having been dealing with mets from prostate cancer for sometime and from what I'd heard had managed to have a 'decent' death,having put things in order and even retaking his wedding vows. It's a bastard thing to deal with and I am so,so sorry you are having to think of this.much love xxxx

Hi,

my uncle died a couple of months ago, he had bowel cancer.
He has 4 children and of course my lovely aunt.

He had treatment for about 18 months before he decided to stop as the treatment was really affecting his quality of life.He felt that he wanted to enjoy his family life as much as possible and he was confident that his pain could be controlled as he had a lot of support from his Mac nurse and the local hospice. The treatment had been very agressive to give him some time but it was making him very very tired and he had awful mouth ulcers which stopped him being able to eat.
As a family they had a couple of holidays, nothing extravagant, just good quality time building some memories and getting a bit of time out.
My uncle went through some different stages as I think lots of people do, he had a period of being very tearful and then very cross.
He was very calm the last 3 or 4 months and he said that he felt he had become as ready as anyone can be in that situation.
The Mac nurse was wonderful and arranged some couselling for the children to help them prepare for my uncles death. They had some sessions as a family around the time that they told the children it was terminal. (my uncle knew from the start it would be terminal as it was found at an advanced stage but they did not tell the children until he decided to stop the treatment. His children are all older than yours though, the youngest is 9 and the eldest is 18.

He chose to be at home and he fell asleep with his children and his wife cuddling him.

I think that everyone is different and only you can decide what you would like to happen. On here we can only give you anecdotal stories from our own experiences but we don't know you or your family and how you interact together.
As your family is young you might choose the option of having treatment to perhaps gain some time, but then it depends on how agressive that treatment would be and what quality it could give.

Have you had any contact with your local hospice? My uncle found that they were an invaluable source of information when he wanted to talk through his options as they weren't liable to get upset or to be biased towards one option or another. He felt they helped him to reach an informed choice based on his own situation.

I really do wish you and your lovely family all the best and hope for a peaceful journey for all of you.
( im crap at knowing the right thing to say but i hope you can understand the sentiment. )

thank you to everyone- in a weird way just writing things down has helped move the barrier i had put up! i am going to start a blog to vent without putting pressure on people- that way if i can't say the words i can direct people to my blog which will explain things that i can't face to face iyswim.

I am still totally bamboozled by the decision i have to make and whilst i appreciate dh must have a say, really i need to think of things from my point of view and then explain why i have decided that first of all- if we have totally differing views then we will move on to discussing it with HP's and counsellors etc.

I dearly love my dh and want to do things right by him for his future and the future that my children will have.

My main goal is to see my dd walk through the school gates on her first day at school, it seems like such a mundane thing having just gone through it with the twins but the actual day will be a sign that she will grow up to be a functioning adult- at the moment i can only think of her as a baby, but starting school will give her some independence and will help her to learn about the pitfalls of life in general and i really feel that that is my realistic goal and i have to do everything in my power to get her there!

Previous treatment- i've had the lot, combination chemotherapy, radiotherapy, double oophorectomy, double radical mastectomy, hormone treatment- you name it i've had it- i'm tired of it but if our decision as a family is to fight it then i will find the inner strength and get through it.

Thank you all for listening to a mad woman's rants- i think now is the time i face real life and find the words to speak to those closest to me in rl- i have been on the what now forums for a while and have had some great advice.

Finally- MAS and Cakes, without you i would have gone stir crazy by now- the humour and support has been a constant support! i will see you back on the other thread soon!

Thank you all x

I'm so sorry to hear your news RWU and also for myself as it is something I fear.

I've had a few glasses of wine so all I'll say tonight is that when I really thought there was a chance I would die we took the DCs for a lovely long weekend to a luxurious (but low key) seaside hotel to fill their heads and my DH's memory cards full of perfect small child memories. It wasn't so much it blew the bank but it was a month or so nanny's wages.

When the secondaries were first found my GP talked to me about how much even two years meant to children my age - now five and three. I took that on board but I honestly don't know what I'd do if I had to choose between six months life with six weeks death or two months life and a year slow death. I've no idea.

Thinking of you tonight.

Reallywoundup

Just found this thread after your message on the other one.

I think I understand what you mean. There is such clarity now, albeit not at all what you, or any of us, wanted to hear.

IN answer to your original question here, the decision to get the treatment is a tough one, as I know you have been feeling pretty wiped out with the chemo so far. More of the same probably does not sound such an enticing prospect, so I can see where you are coming from, but hopefully your thoughts on that one will crystallise over the next days and weeks. Have they been able to offer you any predictions about how you might feel on treatment?

As regards what to do with the next few years - personally I'd just want to spend as much time as possible making nice memories for myself and my family, and making sure (as omeone else said) that DH knows how to do the practicalities. In my bleaker moments I look around my home and our family and wonder what a hash DH would make of it all, although that is just me being egocentric, he is really great, actually. And from what you have said before, your DH is a total hero, but still, I'd like to think my DH was following my rules and not his

You have been brilliantly suportive to me on the other thread and I hope we can all be the same here. I hate the word "brave" as well - "practical and accepting" is much more like it, but you have been all of these things so far, and I hope the next few days bring you a bit of clarity about your own situation. Good luck! Thinking of you xx

hi again reallywoundup...just wondering how you are today.

I've been thinking of how to reply to this for the last few days. My heart truly goes out to you. I'm in the cancer boat myself, and although I'm not in your position, I have not had the greatest of prognosese and I have spent a lot of time thinking about the issues you talk about. I am trying to decide whether to go on drugs that are not curative but extend the time before it comes back. I have got two children under 4.

I think in your shoes - though it's easier to say than to actually deal with - I would get opinions from other hospitals. (Even abroad if they have different things - I contacted one in USa who had a totally different idea to my UK docs) I'm on my 4th opinion, and they are suprisingy varied. Are there new drug trials you could go on? I would not let go of HOPE. I've read endless stories in books and online of people with terminal diagnoses either making an amazing recovery, or exending their life beyond any expectation. It's incredibly hard not to just believe the prognosis and the statistics...I've been terrified out of my wits for months. But I'm slowly looking at things differently.

I would also look at ALL the alternatives. Some of the things I've researched/ am doing are -
Macrobiotic diet
no sugar
high doses of vitamins (esp c)(they give it as injections in USA). I have got lots that I am taking.
reiki and other healing (amazing for the pain relief)
meditation, and creative visualisation cds for healing
Any exercise you can do
I am seeing a herbalist and she is fantastic
Juicing veg and fruits every day
lots of home made soup

I am a strong believer in helping oneself, and I think the more you can do for yourself the more in control you feel.

I hope you don't mind me saying all this. You might think I am way off and have no idea what I'm talking about. But I am doing all these things and filling my self with hope and joy and optimism, and reading LOADS of books about people who have got well. I will give you the titles of some if you'd like them. One of them is written by a surgeon and is about the power of the mind in healing the body.
(After all it is a well known medical fact that the placebo effect helps up to a 3rd of patients in trials).

No doctor knows what will happen to you individually. Or how long you have got to live. All they have are statistics. But you are not a statistic!

I hope this helps in some way. I hope it doesn't annoy or upset you or anything. It's hard to guess how other people feel about this stuff. Enjoy your life 100%. Focus on getting stronger and feeling well enough to enjoy the children. The things your body has been through sound incredibly tough - the surgery and the drugs quite apart from the cancer itself.

In the end, I wonder to myself whether having a few wonderful amazing years where I live life with proper focus on myself and my family - where I take the time to see the beauty in everything- is worth more than many years without that appreciation of life.

Anwyay, my thoughts are with you x x x x

Littlegirlblue

Would you mind posting the details of the book by the surgeon about the power of the mind?

I am in the cancer boat also, although not facing all that you and Reallywoundup are at the moment, and I would love to have that book to hand for my (pathetic) downbeat moments and for the future - just in case. I also have a friend who was yesterday diagnosed with a (thankfully) benign brain tumour, but the treatment sounds extremely trying and I think it might help her also.

I thought your post was extremely helpful and you sound very inspirational and strong. As reallywoundup is, as well, she has been - - and continues to be - a strong support for me on a different thread.

Very, very good luck to you.

xx

yes,really good post littlegirlblue - I do believe that knowledge is power and the more in control you can be the stronger you feel. Am also in the cancer boat but am luckily getting off lightly compared with my friends on other thread and you, so really wish you much strength and luck.
Cakes - poor friend

yes, it's called 'love medicine and miricles' by Bernie Siegel. Good luck to everyone x x
p.s what's the other thread?

will link to it...

here

Thank you littlegirlblue

Will look for that. Hope you are doing Ok and that you will join us on the other thread if you want to.

Glad MAS did the link as I am crap at it.

xx