A conundrum

I am 57.  I have a number of debilitating conditions, none of which are diagnosed as "terminal", two which will eventually be terminal (COPD Emphesema and UC with complications), either resulting in severe surgery, Cancers, or death, likely a long slow death.
I am told I could live another 20 years with these conditions, but my quality of life has reduced so far already it hardly feels like life.  I have already had polups removed from my throat and Colon, which tested negative. My UC often manifests as an inflamatory response in my hands, which looks and feels like the arthritis a 90 year old might have.  On these days I am not able to dress myself, make a coffee, or wipe my own *** adequately, as my hands dont work.  My COPD is evidence that I quit smoking a day late and a dollar short.  I have daily meds but not O2 yet.
In other words, the road leads downhill and ends inevitably in death.

Death does not disturb me in and of itself, although no one desires the dying process.  However this long slow road of lessening abilities, lessening life and the ability to live life itself does.

As a young man I never expected to see 30. I was a hard charging young man, a soldier, and hiker, and I have lived a full life.  I have been places and done things a lot of people only dream of.  I have few regrets and many fond memories.  I am not depressed.  I never expected to see thirty, never mind near double that.

NOW my conundrum is as follows;  "Why does it make sense to stick around, fight like the devil for less ability to function, perhaps send my loved ones into debt, to simply preserve this heartbeat?"
A part of my mind says "Why not take up Heroin, or Crack, or Meth?"
A part of my mind says "Why not find a way, NOW, to  make my exit on my terms before things get so bad I cannot do so?"
A part of my mind says "Why should I burden my family and loved ones with final memories of me as a skeletal figure whithering away, a husk of the man they recall?"

THAT part of my mind wont be silenced, it wont STFU.  In fact it keeps me awake nights when my illnesses brings me down, it comes around, warning me, maybe next time will be the time I become so ill those options or others of similar ilk just vanish, and my family is stuck with my whithering husk.

Part of me sees myself as an old inuit, who needs an iceberg to set myself out on, as I have no function any longer, no value.  My family, due to emotions and Love, would never agree with such a notion and would become upset if I even shared such an idea.  A therapist might say I was depressed, but I have been depressed before, and I am not depressed.  I enjoiy the time I do have as best I can, but those times are whithering away, and my ability to enjoiy thongs, to do things is whithering on the vine.

SO I came here, to see if these thoughts are common; OR, as has been rather common in my life, if I am avent gaurde, outside the bubble of "Standard Issue".

SO, is this unusual?  I honestly cannot see any good reason why I should burden my loved ones with my declining health.  It seems to me the very same issue as the removal of a band aid, a slow peel, or the fast rip.  

  • I am jealous of both of you in that, I have lost all four of my grandchildren.  If they were about I am not sure if that would make it better or worse.  I would love to spend time with them, but also be desirous to spare them extended grief.

    A time to every season, right?
    If it is my time to die, why should I clog up thier time to grow with my refusal to accept that by hanging on through modern medicine?

    Is there not a lesson to be taught here?  A lesson on how to accept your own end with grace, rather than bankrupting, or dragging them down so I can cling to life?

    I do think that Taff has a strong mindset, and I am glad he can see the good in life, even as it is.
    I think perhaps I fear I cannot.

  • Hi Dave,

    Wow, those are big questions! I'll just answer one of them "SO I came here, to see if these thoughts are common; OR, as has been rather common in my life, if I am avent gaurde, outside the bubble of "Standard Issue".

    Everything you post strikes a chord with me, so you are definitely not alone in that mindset. I don't have a military background but I was in the Merchant Navy for 14 years in a largely male environment complete with risk taking, volunteering to work in war zones (at 30 you think youre invincible), heavy drinking, deliberately winding up violent guys with short tempers just to break the monotony between ports and a belief that it is better to live hard and die young than conform and fade away. Having children changed that, a little, but it never quite disappeared :-) Not so much a death wish but a disrespect and disregard of death. All combined with a love of a life lived to the full :-)

    As a child, I watched my Grandmother die a long and slow death following a series of strokes, each one taking away another part of her ability to enjoy life as she lost her senses, her mobility and her cognition. in one her lucid moments she said to me "if I were a horse, they'd have shot me months ago". That childhood experience certainly influenced my view of the World. 

    In the UK we take free medical care so much for granted that we forget that in many countries a cancer diagnosis is a short cut to debt and bankruptcy and an additional major source of stress. 

    The surprise to me is that more people with cancer or degenerative diseases don't end their lives prematurely, but anyone who has witnessed the devastation to friends and family caused by a suicide really wouldn't want to inflict that on their own. 

    The Inuit tradition of old people selflessly sitting on an iceberg to die may have made sense when starvation threatened their families but doesn't really apply when food is cheap and plentiful. 

    Thanks for starting off this interesting thread ;-)

    Dave

     

  • Aha, I think I understand a bit better now.

    Not having treatment is a valid option, nature taking its course and indeed, many people choose to go down that route. I think the decision to do so rests on a prognosis. A reasoned prognosis. Doesn't have to be exact but the medico's best guess. Maybe 20 possible years left is too soon to make the decision. How long then? Don't know and probably depends on today's quality of life, as seen by the decision-maker.

    There is no absolute right or wrong. Right and wrong are personal opinions and can change due to circumstance. Morality is just one person's definition of their right and wrong.Ethics is a codified system of what might be considered a society's overall view of right and wrong but doesn't change a person's own morality.

    I think a decision to go down the route of no treatment may well save a family's feelings (I think torture's too strong a word). The feelings will still happen but for a shorter time period. So that route can have merit.

    Involved as well will be the person's own feelings. We are guardians of our own life but I see nothing wrong with valuing our close 'others' more than ourselves.

    In conclusion then, the going early route is ethically/morally/personally valid. It has merit. The choices are, at what point do you make the decision and what will be the decision. Remembering that the decision can be changed at any time. In my opinion, whatever the decision, it will always be the right one.

     

    Regards

    Taff

  • Thank you Chrissy,

    Your words, as ever, are a kindness.

     

    Taff

  •  

    Hi Redwooddave,

    I see that this thread started as only your second post to the forum so I extend a very warm welcome to Cancer Chat.

    Your conundrum is indeed a poser and it is one which, I suspect many cancer patients consider at some point in their cancer journey – possibly many more than will admit to it. Unfortunately, taking things into your own hands can have some devastating effects on your family and, this is what usually stops people from following through.

    Am I right in saying that you do not have cancer at present? I am not a doctor, but to my knowledge, COPD and ulcerative colitis although unpleasant and chronic, are not always terminal.

    At 57 you a still a young man, and, although not as fit as you once were, it sounds as if you still have some quality of life. I don’t know what family you have or how close you are, but have you thought long and hard about the consequences for them? If your main concern is to shield them from the misery of watching you fade away, I fear that you do not understand the devastation that you will cause to them if you decide to take a sudden exit, regardless of how you execute it.

    Both of my parents died of cancer, as have many of my family and friends. I myself have had two bouts of breast cancer. The first was 8 years ago and the second 6. I now have lymphoedema and arthritis, replacement joints, a collection of medical illnesses, problems with my sight and many other side-effects of medication.

    In the early days of my diagnosis I did consider ending it all, because having nursed so many people to the end, I am only too aware of what the end stages are like. I had to sit down and consider the pros and cons of both options seriously. At least if I am to fade away this has a more gradual effect on family and friends, giving them time to come to terms with my departure, whereas  taking control of when and how I go is too sudden. I have been in the unenviable position to have had 4 friends who took this latter course. Some of these happened 25 years ago and some are more recent.

    I know that grieving is always a difficult time for those left behind, but the families of these friends still grieve after all this time and importantly, they blame themselves for not noticing what was happening and they are still living with this guilt. Some of my friends have had difficulty in getting insurance settlement after the event, whilst others have found their payments drastically reduced or withheld. This shows the potential for financial hardship for your family after the event.

    Seeing these families suffer so dramatically following the suicide of their loved ones, made me rethink my decision, as I could not put my family through what these families have been through.

    Refusing treatment on compassionate grounds is fine, but you do need to discuss this with your family to ensure that all members of the family agree with your decision. I have considered Dignitas, where the whole family would be involved from the outset, but my family is not in favour of this. None of them have had the direct link that I have had in nursing cancer patients, neither have they have they had anything to do with suicide, for which I’m glad. They may change their minds as my disease progresses.

    So where do I sit in this debate? After 78 years to consider my options, I am still undecided, but am doing my utmost to enjoy this new life that I have. Despite all the drawbacks and, there are many, I still have a positive outlook on life and have continued to make memories, especially with my two grandchildren, who have had the chance to get to know their gran and will remember me fondly long after I’m gone. I am so sorry to hear that you have lost you’re your 4 grandchildren, because they do bring such joy.

    If we were animals we’d be put down and taken out of our misery before the final stages, but, because we are humans, this is not acceptable by society. We can however, make our doctors aware of our preferences with contingencies such as establishing a ‘do not resuscitate’ policy in place. It is also up to the individual as to what treatment and medication s/he takes. You say, "Why should I burden my family and loved ones final memories of me as a skeletal figure withering away, a husk of the man they recall?" Many people who are newly grieving say that they cannot eradicate the picture of how their loved ones looked at the end. Fortunately, this memory lessens with time and fonder memories come flooding back.

    I am sure that this is of no help to you, but it lets you know that you are by no means the only one in this position. Like Dave I thank you for bringing up such a pertinent thread and I hope that it runs for some time.

    I sincerely hope that, whatever decision you take, it will be the right one for you and your family.

    Please keep in touch. We are always here for you whenever you want to talk.

    Kind regards,

    Jolamine

  • Seems we share quite a Lot.  I too was a hard charger like those you served with, although I was not so likely to be wound up as to do the winding myself, again like you.

    I also watched my mother whither as a child, open heart surgery in 67, a :"miracle then (triple bypass), follwed promptly by a stroke and left side paralization. I wittnessed several followup strokes before I was made a ward of the state as a result of her medical conditions, yet she would live for another 20 years in a nursing home, with Cancer slowly eating her alive.

    I had not even considered how those experiences might be affecting this thought process, as that was near thirty years ago that she passed.

    It may not be starvation in the actual sense. but it could be in the fiscal one, and the emotional drain is incalculable.  I find, facing this, that part of me with which you also identify, who's motto has always been "LIFE unto DEATH", live free, live hard die young mentality, sees this too as some challange, not to be conquered (not possible), but to be embraced.

    A time to take up race car driving, or hang gliding, when I full well know my hands might just quit at any moment.
    Rather than slowly whither.


    It's better to burn out
    than it is to rust

  • You are correct, I do not have a Cancer diagnosis.  I have debilitating conditions.  as I oft say "I am disabled, not decrepit".

    I have always been a deep thinker with a philosophical mindset.  I never expected to see 30 above ground, and in fact that whole year was rather surreal for me, since I had fully believed that all through my teens and twenties, a part of my mind expected me to just drop dead for no reason at all, instead I was a single parent for many years.

    It is how I am losing function due to my conditions, and the outlook for any future will of course include further losses of this type, inevitably placing me in a place where any such choice will be ripped from my hands by my own lack of ability.

    My eldest daughter has been a Hospice Nurse, so we have had these conversations, and I have had similar philosophical conversations with all my adult children, in passing.  They have not as yet extrapolated these conversation to me, as my health has not declined to that degree.

    There is no compassionate Death here, although that is preformed on the down low in Hospice all the time through "snowing", families, by and large, are in denial of what Hospice even is and still expect recorvery from the patients.  My daughter went through that with familes on a daily basis.

    My own family is not in that boat.
    I am not depressed, or suicidal, but I am thinking "Why not hike the Long trail now?" I did the AT as a young man.  I do not have the fitness, health or wind to do that now, but why not try ANYWAY?

    I did not know if this was the right placeto share such a thread, but I could think of no other group of people who might actually be pondering these issues, if any were.

     

  • lol - I sail small boats in big winds for fun, so I guess there's still an element of devil may care in here :-)

  • Thanks Taff, and yes, I am looking at this early, as I am wont to do with big Ethical questions.  I do not put them off till the last minute and by not doing so have allowed myself to maxiize my own life thus far.

    It does raise another spectre for me however, one for which you and others here have far more experience than I, and for which your input would be appreciated.

    I have long been a science geek, not a scientist (Thats my son, an engineer working twords robotic prostetics for the exteninon and improvement of human life)
    But an interested party in all fields.
    However in my own medical care I am finding that Doctors either want to dumb down content (which frankly pisses me off), or simply omit data, (which REALLY pisses me off), and I am left with "experts> who either willfully do not inform me fully of aspects of my own condition or negligently do so.
    THEN they get irritated if I attempt to do so myself (as it is easy to misinform oneself, and that aspect is understandable)

    As a for instance, I have had UC for a decade now.  In that time I have developed Arthritic sysmptoms, which have worsened over time.  I went through all kinds of testing, only to find out that these symptoms can be an unusual symptom of UC itself.  As soon as I knew that, I can readily see a correlation between my UC flares and the arthritic symptoms, like dominoes falling over.
    IF I had been informed of this, I could have been watching for, and managing these symptoms for a dam decade.
    BUT no one thought that relevant to ME, so now my hands are rather ***, and many days it makes me unable to do routine tasks like self care.  This could have been avoided with simple information.

    I am very proactive with my Doctors, but without BEING a doctor or even a specialist in my own illness, I am at a disadvantage, especially if they withhold information because they fear some psychosomatic or placebo response.

    Have any of you encountered these thypes of issues or found a workaround?  As it stands I am learning to distrust modern medicine as I detest being pandered to, or outright misled.  It feels like deception, and that agravates my PTSD issues, and now I do not trust two of my own doctors.

    NOR can I replacethem as all my care come via the VA system, so its lump it or get nothing Troop.

  • Hi, am i allowed to just talk to you ? 

    I'm sorry if i'm not, could you please tell me if the feelings you have encountered after surgery include a real feeling that certain parts of your body dont belong to you ?y