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

[lisad123wantsherquoteinDM]

loads goes though minds when they hear cancer and it is scarcy.
I would certainlywant to fight till the end as i would worry if i wasnt fighting i would go quicker iyswim.
Certainly dh asnt reacted too badly to chemo he has, where as others have, so no one really knows how they will react. I would spend as much time as possible doing the things i want to do, but putting into place all the things for my girls. I;d make sure dh knew everything i do with them, like how to do their hair, and how to make sure they wash properly.

i guess i wouldnt believe it was over till it was, as mircales will happen.

[GoneCuckoo]

Why do you ask?

[TheDMshouldbeRivened]

probably the third option while running up a massive credit card bill.

[reallywoundup]

riven [tempting]

I asked because i am interested in what other people would think like i say its not something i can ask rl friends without them turning into weeping heaps

Lisa- was your dh told that the effects could be worse than they have been iyswim, he has daily chemo for the rest of his life doesn't he? its good to know that he is finding chemo ok.

[notevenamousie]

My mum has had the aggressive treatment. I hope she feels it has been right for her, I am desperately waiting for her to realise it's time to stop.

[weegiemum]

I would do some sort of middle road - prolong my life as much as possible while still feeling OK. But I would put quality time with family/friends and especially children first.

Actually, I've always wanted to travel round the world, so I would probably take the kids out of school, borrow shedloads of money and go of and do something like that.

Are you asking for personal reasons? Sounds serious, and

[CakeandFineWine]

I have thought about this recently as a relative of mine was in the predicament,

I think I would try the treatment and see how it went, everyone responds differently and you could be ok with side effects and have longer,

You can always stop if side effects are that bad.

I'd def write a list but try to keep it realistic and achievable.

RWU is this actually happening to you?
What a predicament....

My relative was given a really poor prognosis 18 mo ago,
Her list was my wedding and a hol with her child, she's done both, 3x holidays and looks like she might make a full recovery, she has her last treatment on Wednesday, Miracles do happen

[lisad123wantsherquoteinDM]

yes daily chemo forever and they did go though all the side effects with him, but mostly his effects are tireness and sick feelings (although is sick if chemo is too soon after breakfast)

Its hard to know what i would do personally but would like to think i could fight. My friends dh was told he had a rare brain tumor and had 6 months he is still here 5 years later and his tumor isnt there. I would want my girls to know i tried everything to be with them as long as possble.

Are you ok?

[Northernlurker]

Something to bear in mind is that whilst we from the outside of a situation all may think 'oh quality of life every time, go for that over length of life' - and there's a lot in that of course - but the human will to live, to survive is very, very strong and actually saying 'no' to treatment is very hard to do and to keep to. It may very well be that the reason a person would feel conflicted about this decision is because they aren't ready to say 'no' yet. Therefore having treatment for now - even with side effects others may deplore - is actual the best option for peace of mind because it may help you get to a place where you can say 'no'

[bodiddly]

I, like many on here, have had very close family members in exactly this situation. They have all taken the treatments and tried to beat the cancer with varying degrees of success (my father has lived through and been cured of 2 totally different and completely unrelated types of aggressive cancer over the last 10 years - he had very hard hitting treatments and is extremely religious so believes in being healed!). The one thing I have taken from this is that you need to deal with each day as it comes - don't deal with the illness as a whole as it will scare the crap out of you ... just work out what you want to do if you are having a good day or adapt if you aren't. So I guess a combination of the two to be honest - especially if you have children. Option two sounds like a fairly good idea in theory BUT there are no guarantees that you will feel good for the 2 years if you are abstaining from treatment! Bear in mind it is also very difficult for those closest to you to accept that you dont want treatment and that you are willing to let go without trying to fight. Some people understand but for others it is very hard to come to terms with.

Everyone reacts differently to treatment and although you may expect to react badly there are some who deal with the therapies without too many problems.

At the end of the day miracles can happen!

[ABetaDad]

reallywoundup - that is a very very tough question.

DW had aggressive chemo and invasive operations for her ovarian cancer and it really devastated her and me about a decade ago. We had no children then.

I do not think it would be wise to go on a spending binge if there were dependent children as financial resources would be better spent on them in later life.

I think at first there can be no planning. The sufferer and the immediate family are blown away by it. The treatment is hard to take for some people. Massive weight loss, blue light ambulance dashes through the night, and so on. There was no way DW could have travelled anywhere while being treated and I doubt she would have ever have been strong enough though each person reacts differently to the treatments.

One thing I remember DW telling me was that she wanted me to find another wife when she died. She was intense about making sure I had a family and lived my life to the full afterwards. She did not die of course but to this day I still do not know how.

She also wanted to make sure I had intimate memories of her and she started a journal, collecting pieces of her hair before it fell out, photographs, cards and love letters we had sent each other when we first met. She also hung on to her job as long as possible and continued to enjoy wearing designer clothes and planning what hair style she wanted when she got her wig. She wanted life to be as normal as possible. We even had sex when she did not feel too bad (at her absolute initiation of course). Lovely moments I will never forget. It is the small thngs, the normal and mundane that matter really not the grand holidays and luxury spend on 100 things to do before....

Lisa - I cannot even begin to imagine what it would be like if children were around. One very powerful reason I am on MN is that one day I fear DW will have a relapse and I will be a Dad on my own. Yes I agree about all the little practical things to do with the children that she does. I also have thought that perhaps a series of letters written by DW to be given to each our 2 DSs on their birthdays up to 18 might be a nice thing to do. I just hope it never comes to that.

I wish you and DH all the very best from the bottom of my heart. I am sure you will agree nothing prepares you for it, you have to have lived it to know how it feels.

[reallywoundup]

interesting and i guess its something you may have an opinion on but if the time came then that might change, certainly in my case it has, i always believed that i would have the time of my life and sod the expense etc- just do everything in that time, i have thought a lot about it today and i'm swaying the other way now!

Yes it is for personal reasons, i have been battling ovarian/pelvic and breast cancer for nearly two years and was told today that treatment is no longer working (although we have kind of 'known' for a few months)- i need to decide what route to take, mainly what is right for my family not necessarily for me iyswim.

Dh and i are not quite ready to talk yet and no-one is rl is quite accepting enough of the situation yet to help or make any sensible suggestions, they all want to show their sympathy which is lovely BUT i am not dead and would prefer them to concentrate on the way i want to live my life.

Sorry its all a bit matter of fact atm! would appreciate any other contributions.

[CakeandFineWine]

RWU {{{{{hugs}}}}}

I can't imagine what it is like for you and what a difficult situation you are in

Although you have to think of your family, you must think of yourself too xxxx

[trellism]

When my mother was diagnosed, she resolved to have everything possible, even fibbing to the oncologist about her symptoms so that he would give her another round of chemo. She joined every trial possible, bought herself a dog to make sure she got out and about and had something else to think about, and hung on as long as she could.

She hated any notion of "bravery" when it came to being ill - she said it was just luck and good medical care really, and that bravery didn't come into it.

Other people did act weird around her, some friends stopped calling but others stuck around and became very close to her.

You have my best wishes during what must be a difficult time.

[notevenamousie]

I'm so very sorry.
I hope I wasn't too blunt.
My mum is in her 50s with ovarian cancer. Treatment prolongs disease free survival, but not actual survival.
She has made her choice and I am glad of that, my bitterness is against my fellow physicians who basically have lied to her.

I hope you find clarity, helpful outside people to talk to, and many many happy family memories in the time ahead. I hope that if I can be of any help to listen that you would ask - I am happy to hear anything that might be taboo, some of us have already heard it or thought it.

[lisad123wantsherquoteinDM]

RWU, I know i shouldnt say, but im sorry for your news.
How old are your kids? The only thing i know i would do, would be to make memony boxes for my girls, with tapes of me talking, photos, hair and videos for dh to play on special days like weddings and baby births ect. I would make sure dh knew how to do a french plaite, how to make dd2 eat her veg, and what time dance classes are ect.
I dont think it would be about me though, i think i would want to do all the things wanted to with the girls (rather than all the things iwanted to do when i was younger).

there is some wonderful resourses we use with kids at work, certainly winstons wish and macmillian are great.
I know i find it easier to chat online than to RL friends and have a blog they can read, some just cant talk to me about it.

Have you used the macmillian form/chat? www.whatnow.org.uk wonderful people on there.

[bodiddly]

How have you been dealing with the treatment to date? How are you feeling on a daily basis at the moment?

Are you religious at all? If you are, perhaps you could get some support from talking to your vicar/priest ... or if not then maybe chatting to someone independent would help. Family and friends are always biased and emotional but a professional may give you some perspective on things.

So sorry to hear you are having such a hard time!

[ABetaDad]

reallywoundup - OMG that is awful. I don't know what to say. Words fail at times. You sound like DW, ever one for practicalities.

The thing you said about realtives is very reminiscent of my experience. My MIL accused me of lying about DW's condition and was really very awful to me. Relatives can be very much a hinderance as well as a help. Friends dropped off the radar, not knowing what to say or do.

You do need to talk to DH and I believe you have children too? What support will DH need, what about finances? Frankly, I would get a good family lawyer to look carefully at your estate and peraps in the initial stages help DH manage your financial affairs. I know I would have struggled to cope without DW for a good year or more.

[onlyjoking9329]

RWU, so very sorry this is something that you have to think about.i do hope you have lots of help and support.
everyone is different and everyone responds to treatment differently,
if i had to answer this question a few years ago i would have said try all the treatments, now i see things somewhat differently.
my DH went with trying the treatment he was told me may have a year with treatment or 3-6 months without treatment.
the treatment was very difficult on him and was eventually stopped by the hospice consultant, he was too confused to make a choice by then and i wasn't sure what to do.
steve lived for 10 month after being told he was terminal.
in some ways i wished he didnt have the treatment and he may have been able to actually do some of the things on his wish list. I still have the list and will do the things in his memory.
terminal illness is a taboo subject, it makes people feel helpless cos they cant fix it.
i found the macmillan forums very helpful as you don't have to dress things up to make others feel comfy.

[reallywoundup]

thank for those kind words, like i say at the moment it is still very matter of fact, right what shall we do next, i guess the time for tears, anger and regrets will come soon. I am painfully aware that the decisions i make will HAVE to be for the benefit of my children first and foremost, dh is big enough and ugly enough not to be my first priority and he knows and agrees with that from conversations we have had in the months leading up to today.

Lisa- the memory boxes is something that i have already started, it was something i did when i was first diagnosed 'just in case', we have hundreds of hours of video, quite often it gets left turned on just recording daily activity and the stupid stunts me and the kids pull! That i'm sure will last forever for them. Macmillan have been fantstic already, we also have a local charity called the beacon of hope, they provide support and assistance, we are planning with their help to arrange a once in a lifetime holiday to Disneyworld Orlando, and our keyworker has already arranged the 'medical' side of the trip including the name and contact details of a local specialist if i should have any problems while we are there. Dt's 1&2 are 6 at the end of the month, dt's 3&4 are 4 and dd is 19 months.

I hate the idea of bravery as well- it irks me. I am not brave, i did not choose this situation, it just happened and i had no choice but to accept it. Cancer and the related illnesses are cruel and i feel for anyone who is affected in any way, but at the same time i wish people would think of me as a person and not "RWU.... you know the one with cancer". Sorry, i guess my frame of mind is in attack mode atm!

I am going to see my mac keyworker tomorrow, she will hopefully give me a gentle slap and help put everything in perspective, i have known deep down that this was coming for months, but the reality is different- it feels flat, as if nothing is happening iyswim, i'm not sure what i expected but life has gone on as normal since we got back from the appt, which is exactly how i want it to be but for some unknown reason it feels weird.

[notevenamousie]

((((((RWU))))))
You will find all the support we can give here.

I hope your holiday is as miraculous as you hope it will be.

I think there are many feelings at these sorts of times - can your write them down at all, would that help? How are you feeling physically? Please tell your relatives and friends what you want and how to help in no uncertain terms - my mum seems most distressed by people doing things for themselves that are of no benefit at all to her.

[lisad123wantsherquoteinDM]

you seem to have a lot in hand but i guess that the practical is easier to deal with. Your dh is going to have 5 wonderful reminders of you everyday I hope your family are supportive and know what you mean about friends dropping off (and we arent in your situation) but dont waste engry worrying bout them.

Did they give a length of time? although they never seem right ime. I would guess as days go on and you and dh get head round it, your plan together. We like normal in our house, cancer isnt a word Darren will use, he said it sounds too scarcy!

Only you can make decision for you and your family, no right or wrong, just whats best.

I know its not very MN but ((hugs))

[jenwyn]

Its so very difficult to know what to do for everyone concerned.There just isnt a right way to go about this.
It is exactly 5 years since I had my mastectomy and I had everything I could in the way of treatment.I even took part in 2 trials simultaneously to get the best chance I could. However the side effects werent too debilitating and I could carry on almost as normal for most of the time.
I dont have a young family nor unfulfilled dreams to follow and I really dont know what I would do if this was the case.
One of the women who was on a forum I followed during my early treatment was an inspiration and sometimes I still read her blog to be amazed all over again.

Her name was Kate

dippykate.blogspot.com/2005_12_01_archive.html

[reallywoundup]

thanks noteven! tbh physically from 2pm (time of the appt) onwards i have felt better physically and mentally than i have for a long time- i tried to explain earlier to a friend that i no longer have to worry about what my body is doing- i don't have to be concerned now- i know in a way what it is doing and although its not doing what i would like it to, i don't have any control or belief in it so i won't ever be disappointed in my bodies ability again.

now i know that may take a while for people to to figure out and see where i'm coming from but thats sort of what is making me feel better- i don't have to go for any more appointments wondering if this is 'the one'- its already happened so whatever gets thrown at me from now on can't be as hard to swallow iyswim.

[NotPlayingAnyMore]

Sorry to hear this RWU

You didn't mention previous treatment in your OP which makes it a more difficult one for me to answer.

My mum is dying of lung cancer and even before the diagnosis, she was confident that she'd refuse treatment - which was just as well as she's too ill to receive some anyway.

All her children are grown up though. I myself have a primary school age DS so while I completely understand her decision - and could accept anyone elses's - I would fight on for him.

My mum would know exactly what you mean by "but I'm not dead"! It's up there with everyone telling her what to do - she has to remind people that she's ill, not stupid!

I don't know what else to say apart from: never apologise for being matter of fact about it!