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Re: A conundrum

8 Feb 2018 03:34 in response to Redwooddave

 

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

Re: A conundrum

8 Feb 2018 11:41 in response to davek

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

Re: A conundrum

8 Feb 2018 11:56 in response to Jolamine

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.

 

Re: A conundrum

8 Feb 2018 15:17 in response to Redwooddave

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

Re: A conundrum

8 Feb 2018 15:37 in response to Taff

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 ****** me off), or simply omit data, (which REALLY ****** 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.