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Friends,  In these last few years I've seen and participated in many discussions from diagnosis to surgery and chemo to recurrence.   But I've not seen your thoughts on when 'ENOUGH IS ENOUGH'

 

After two operations, and three different chemos over these last six years, I found the last chemo to be doing more damage than good.  There no longer was talk of a cure.  From now on it was 'keep it in check.'  So I then faced life on chemo.  It turned out to be 'life in bed' as my legs and feet became immoveable.  Like being paralzyed.  i had always suffered with neuropathy but this time it crept into my hands and it became impossible to type.  And walking was no longer something I could do.

 

After what I think was careful consideration, one day last month when I was to get chemo, I told the oncologist I'd had it.  I have no idea when the end might come but I wanted it to be on my terms and I wanted to walk.

 

Since then I put myself into Hospice and it's been a wonderful experiene.  There are now lots of people taking care of me, they all have different missions.    And since this time, feeling in my hands has returned and I can walk.  Not well.  I fall a lot - but i have canes, a walker and a scooter.  I cannot tell you how much I appreciate things I took for granted!

 

But here's my question to you .... would you have done the same thing?  Will you?  What would go into your thinking?  Do you feel this is 'giving up' or just 'going your way' ....   I would love to hear your thoughts.

 

mekbride

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Everyone's journey is their own,we have the right to make our own decisions based on our own needs ,you have had the courage to say enough is enough.You are appreciating the quality not the quantity.God Bless you on your journey,you have the courage to do it your way.You have choosen love and nurturing ,I salute you.Pat Ryan

Hi Mekbride, I have to say you are to be admired for your strength. I ve always thought that I would be able to know when enough is enough but could I? I hope so. I think at some point your time here is really the only true thing in this world we have control over. Live it to your fullest.
John

Thanx Ryan and John for your thoughts.  I must admit that living in Hospice mode is so much easier than living in chemo mode.  Chemo that continues to dehabilitate me and takes any 'life' away.  The Hospice people come see me several times a week.  The nurse, the Social Worker (who signed us up for Food & Friends, which is here, a wonderful org that brings you cooked food or groceries.  So much fell to my husband caregiver these last years ... it is him that I don't know how he's done it.  And now he's suffering from degenerative arthritus and has trouble getting around himself.  However, what I'm finding is that we are enjoying life now and weren't before.  We bought scooters and ride all over the city as the weather is becoming increasingly beautiful.  I couldn't work the scooter before as my brain was so muddled.  I think I've shortened my timespan but it doesn't feel that way because we've been doing so much.

 

Again, thank you for your thoughts.  It's hard to get anyone to talk about this, and I thought perhaps those in our community would be more open to the discussion, but I have guessed wrong.   Definitely THANK YOU for your input.

 

mekbride

Hi Mary-Ellen,

It's me! I want to thank you for bringing this issue up for discussion. It is difficult to talk about, but I hope more people join in. I'm just a caregiver so can't speak from a patient's point of view, but as one of the decision-makers for my mom who suffers from dementia, I struggle with this issue. Sometimes with my mom I think "this is no way to live" but then she has a good day and, from my point of view as a caregiver, it's all worth it. Good days are everything. It's so confusing. It seems like an awful paradox- stopping treatment may shorten a patient's life, but in turn, help them to enjoy life more. But then I think, doesn't that make them want to live even more, to hold on to life and try treatment again? It's really confusing to me, on the outside as a caregiver. But I guess if treatment is started again, then the patient might feel cruddy and the whole ugly cycle starts again. All I can say is, you are such a courageous woman to live life on your terms, whether you stop treatment or start it again, you're in control, which is inspiring. Thank you for bringing this issue up!

GADawg - It is indeed a discussion worth having.  And another part of that discussion for baby boomers and such - is what to do with funeral, cremation, etc issues and I would like to encourage anyone reading this to consider donating your body to your nearest teaching hospital.  Can you imagine the possibility that just one very smart person finds something within us that could possibly help, or maybe even cure, those of us with lung cancer?  Now there's a legacy.  And if that's too much to hope for, perhaps a simple discussion between two would-be doctors, as they are inspecting a body, saying "whoa ... so young.  It certainly inspires me to think and care about the air that goes into my lungs, or the environment that I put myself into.'    'And, I sure will monitor patients more closely knowing what I am learning now.'    Yup - I'd say that would be something to be proud of.  I mean, as we are looking from above.   (:  

 

mekbride

Hi Mekbride, Once again this site and the people who are here amaze me. I am so glad someone brought this out into the daylight. None of us want to leave this world to soon but we all will at some point. There is a line in one of my favorite movies( Shawshank ) that the main charecter says that sums this up pretty well I think. It is " I figure I can Either get busy dying or get busy living. I choose the latter." 

I guess we all need to comtemplate our final days and after. I agree we all need to have that discussion with our family or friends whoever will be there to carry out our wishes. We all need living wills and last wills and testaments. Let your feelings be known. You never know when your last day will be or your last day of being aware of whats going on.

Gadawg, never feel like you are "just a caregiver" without people like you who love us, a lot of us would be in such bad  and terrible situations. I will thank my wife for the rest of my life for caring for me during my dark days with this disease. You guys deserve a madal for all you do.

My own mom died the same year I was diagnosed, from heart failure, but the 5 years before was brutal. She like your mom had dementia. I was the caregiver and it is no picnic but like you said the good days I still remember. I am glad I was able to have that time with her.

God bless, John     

Hi mekbride and all those who replied including caregivers ,we all hold hands and participate in decisions

No one is an island.I am a caregiver we all feel, , we as caregivers do not have the pain ,we do not have the trauma , we are not the decision makers, We are the support ,the hand holders,we do participate.Whatever the decision,we honour ,support and agree .Your decision is yours alone.Mekb

ride I honour you ,your decision, your life , you live as you have always lived, honestly, your way.God bless you on your journey

Thank you Pat.  I feel so fortunate that in my family, these things were discussed.  In fact, I suspect 'the end' was talked about as much as marriage.  My grandmother prepaid her funeral and invited the people,and bought a new gown for the occasion.  My mom and dad, both of whom died from lung cancer, had everything paid for and while both had different endings, both have ashes in our uphome cemetary.  The same place where my name resides.  They have printed on my birthdate and recently I paid to have my 'final' date printed.    And, I actually think I'm thinking of my caregiver and loved ones as I do this.  Can you imagine being 'left' and not knowing what someone wants?  Why would I want that burden on anyone else?   I'm just curious about others tho' - as I find so many people don't even want to discuss it.  Thank heavens I'm not responsible for them!

mekbride 

I am so honoured to be in discussion with you, so many people live and end their lives without the honesty of the reality of love .If you love, you love in happiness , you love in sadness , you love in beginnings ,you love in endings. I will be honoured to walk to the door of the end of life with the woman who gave me life. her decisions although not maybe the decisions that I would make I will honour.It is her life.I honour your courage to live and die as you choose .God bless you

Hi mek,

So glad you are bringing this up and so glad you come from a family comfortable discussing it. Mine was not so much when my mom was sick. It's always so much easier when these discussions are had and decisions made ahead of time because it makes things less stressful along the way. 

I am not in your shoes, so it's probably a little unfair of me to make assumptions about something I do not know anything about. Having said that, I think that I'll know that enough is enough when life is more burdensome and painful than enjoyable. I suppose though that each person has their own definition of what it means to be "not worth it."  

You ask, "what would go into my thinking?" I think I'd consider, am I in pain that cannot be controlled? Or if it can be controlled, am I so out of it that I can't enjoy my time pain-free? What would be my goal of continuing treatment and is it really worth it?  

Then there's that big question though that I think is harder to think about - have I done what I wanted to do, or even if I haven't, am I okay with that? I would want to make sure that people would remember me, that my "story" was safe somewhere. I feel like that's the thing that scares people the most when faced with these decisions. Are there people I trust to help me through the final days/weeks/months of my life in a way that respects what I want? 

Whew...some heavy thinking. But you know what? Regardless of what I say about me, you have been so incredibly inspiring to me as you have walked this road. I admire the heck out of your attitude towards this, so don't let anyone tell you that anything you are doing is not the right answer. You have been more thoughtful in this process than most people would be about anything. 

And another thing - it's not about "giving up." On the contrary, you have all the control here. You are making the plan exactly how you need it to be for you and that is so incredibly awesome. Not everyone can do that. But you are calling the shots. 

Amy

and we are lucky to have you working for our interests at LCA Amy.   I appreciate your thoughts - and the idea of one's story is especially interesting to me.  I am very thankful to have LCA and my friends there who 'know my story'.  That, I believe, is as good as it gets.  And I wasn't able to articulate it~

Hugs, mek

Hello- I  think that you knew, right there and then when enough was enough. I hope that I would have done the same thing. l. This is not giving up at all but a decisive move on your part to be in control of your life. I don't know who has the right to judge your decision, certainly not me!!! I think that you know that you've made the right decision for yourself, and probably one that a lot of other people would make, maybe more than not. God bless you.

Love,

Merry

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