Death, dying and LIVING!

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Terry Herbert
Regular Member


Date Joined Sep 2010
Total Posts : 92
   Posted 10/18/2010 7:55 PM (GMT -6)   
I wrote this bit some years back but in the light of kbota’s post Our retirement plans I thought I might share it with you all. Here goes:

Eric, a good old friend of mine used to shock people by saying that he wanted his ashes scattered under a beautiful jacaranda tree on the golf course where he was Club Secretary. “But,” he would caution, “Make sure you know which way the wind is blowing. I’ve never been out of bounds on that hole.”

I know that many are also uneasy when my darling wife Anthea and I talk about death and dying. Our ideal death would be to have an excellent meal in one of those sidewalk cafes in Rome – near the Trevi Fountain perhaps – and to keel over as we sipped the last of the wine and for the restaurateur to find that we didn’t have enough to pay for the meal, having spent every last razoo on living.

So, with that background, perhaps I am not typical in my outlook. I guess it would be somewhat of a surprise if I was, but I do believe that it is healthy to contemplate our end, and to discuss what fears we might have. Death and dying is very rarely even mentioned as far as prostate cancer is concerned except as a dire warning of the awful death that awaits those who do not take immediate action to deal with their diagnosis. Yet it is the our contemplation of our death that drives our decision making process. It is indeed THE ELEPHANT IN THE ROOM – which is what I called the piece I wrote for my website

Some prostate cancer deaths can indeed be awful and I don’t want to make light of that, especially for people who have experienced the pain of losing a loved one – father, husband, partner or son. Old timers like Rob Parsons may recall some years back the harrowing blow by blow description of the last days of a man in Ireland, described by his loving wife Jan. That was on a List, long gone unfortunately so the account cannot be read in Archives. There are other well told tales of death and dying - one of the most visited individual pages on my Yana site is that of ALAN BACON , written by his widow; Robert Young also vividly told of the five years that passed from his diagnosis to his death in his CANCER JOURNAL while Ric Masten detailed his long battle – ten years in all in a fascinating account that has apparently been removed from the Web

These men battled the pain of the disease that had metastasised to the bone, but this is not the only route which the disease takes, in fact it occurs in a minority of cases, according Jan, the lady I mentioned above and Dr Charles Myers. In those cases where it does occur, Dr Michael Glode has this to say on his blog HOW DOES PROSTATE CANCER ACTUALLY KILL YOU?

It is highly unusual to have a patient in whom pain cannot be well controlled with radiation, opiates, NSAIDs and attentive care.

I cannot quote any studies to support these statements, but they do jell with my personal experiences. Eric, the old pal I mentioned above, Mike another old pal and Reg, a colleague of mine from work all died of prostate cancer within 18 months of my diagnosis. Eric and Reg and I went fishing in the Zambezi Valley three months before Reg died and twelve months before Eric went. Reg was on hormone therapy at that stage and was suffering badly from hot flashes – no surprise since the ambient temperature was about 40C – say 104F - but a bit of river water poured over him and some well chilled beers cooled him down. We caught fish, yarned about the good old times and despite the shadow of death that hovered over both of them, we had a great time.

Mike lived in Cape Town, where we lived at the time. He had been diagnosed about three years before me. He didn’t know anything about the details of his diagnosis. Clearly it was late stage because he had an orchidectomy and then went onto what his widow refers to as ‘female hormone drugs’- presumably some kind of oestrogen therapy. He developed osteoporosis and broke a leg, some ribs and eventually his spine was so fragile that he had to wear a cervical collar. But none of this stopped him doing several things that he had planned to do all his life, but had been too busy to do. The chief of these was to visit France, the Loire Valley in particular, on an extended wine tasting tour – he was a vintner by trade.

A little over six weeks before he died, we had dinner with him at his favourite restaurant. As ever he was bubbly and bright and had us in fits of laughter describing the problems he had at a recent wine tasting in getting full glasses which he needed to taste the wine - he couldn’t tilt his head back far enough to sip from a normal tasting glass because of his cervical collar.

Shortly after that he was admitted to the hospice, where I visited him on a frequent and regular basis. The staff of the hospice were kindness personified and although Mike was more and more heavily sedated, he would drift in and out of consciousness, sometimes chatting about old times, sometimes away with the fairies. I wasn’t with him when he died, but his brother was and he said he just slipped away.

I wouldn’t mind going like that. I know it can’t be guaranteed, but in the meantime, I’m living my life to the full, making the most of every day. As Robert Young put it I want to be alive when I die. I want to go out with unfinished business because I have so much to do.
Diagnosed ‘96: Age 54: Stage T2b: PSA 7.2: Gleason 7: No treatment. Jun '07 PSA 42.0 - Bony Metastasis: Aug '07: Intermittent ADT: PSA 2.3 Aug '10

It is a tragedy of the world that no one knows what he doesn’t know, and the less a man knows, the more sure he is that he knows everything. Joyce Carey

Radical
Veteran Member


Date Joined Mar 2009
Total Posts : 739
   Posted 10/18/2010 8:43 PM (GMT -6)   
Beautiful post Terry, thanks for sharing.............Kev
Age 52yrs [Gold Coast Qld, Australia]
6 out of 8 cores positive 3 X 60% / 3 X 10%
PSA 4 Gleason Score 3+4=7 Stage T1c
RP 24/12/08
Upgrade Gleason Score 4+3=7 Gleason Differential 60%/40%
Stage T2c Three small foci total volume <10%
Neg Margins and Nodes
Nil - EPE
Dry less than 1 week. ED- okay with Meds.
PSA at 18mths no change remains 0.03
"Everday in Everyway, I get better"

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4089
   Posted 10/18/2010 9:05 PM (GMT -6)   
Terry that post says it all for me. I agree with your thoughts so very much and those that know me first hand can verify that I live every day to the fullest as if today is the last one. None of us are guaranted tomorrow. Love well, Live well, family and friends are the most important things that we have in our lives.
Laugh and rejoyce in your life.  It is the only one we have! yeah

Cajun Jeff

H555
New Member


Date Joined Mar 2010
Total Posts : 15
   Posted 10/18/2010 9:07 PM (GMT -6)   
I'm an infrequent poster but visit often. I was diagnosed as having failed salvage radiation last January so i'm in this for the long haul. I hope that I can live out many many years with my loved ones, first grandson is only 15 months. having said that tho I'm being very matter of fact about this place in my battle with this thief and have often thought along the same lines that you posted. thank you. my my next psa test and consultation is next Monday and I'm hoping for continued slow rise of my psa levels. I'll post more after that as I know others are at the same stage. thanks for posting this.

Cajun Jeff
Veteran Member


Date Joined Mar 2009
Total Posts : 4089
   Posted 10/18/2010 9:09 PM (GMT -6)   
good luck H555. will be thinking about you.

Cajun Jeff
9/08 PSA 5.4 referred to Urologist
9/08 Biopsy: GS 3+4=7 1 positive core in 12 1% cancer core
10/08 Nerve-Sparing open radicalSurgery Path Report Downgrade 3+3=6 GS Stage pT2c margins clea
r3 month: PSA <0.1
19th month: PSA <0.1
Only issue at this time is ED

caring wife
Regular Member


Date Joined May 2008
Total Posts : 20
   Posted 10/18/2010 9:23 PM (GMT -6)   
Just a quick note....I had written last week that my father in law was near death.  He was diagnosed 17 years ago.   He had his testicles removed at that time and has received hormone treatement and infusions of Zometa.   He passed away last Thursday.   Even with bone metastasis in his pelvis, lumbar, thoracic spine as well as his femurs and  abdominal lymph node involvment he remained pain free until the last few weeks and with the kind, professional Hospice care, he died peacefully.  He enjoyed life to the fullest in those last 17 years and never let the cancer.  My husband also has prostate cancer but was diagnosed early. 

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 10/19/2010 6:06 AM (GMT -6)   
We have seen some epic battles and losses from some of the brothern whom we knew of or heard about: Bill Aishman, Howard Hansen, Robert Young, Rick Massten and some others found on the yananow.net website that we can read about. The guys I mentioned above made huge contributions to the knowledge base of PCa, in effect paved some roads that others can use for better navigation and overall understanding of all of this. The more you know about those pioneers in this fight, the more you will appreciate that they took huge amounts of their personal time to help you and others. Unselfish with their plite in life and did the ultimate to help others, just like in a real war and they lead like generals comparatively. Glad I am around to witness what one person can possibly do in making a difference. Thank you to Terry and yananow website for a historical on going look at PCa patients histories and information in real time for others to benefit from its contents. I hope that whatever is down the road for any of us is the better of possible scenarios.  Myself wouldn't mind going out trying to save someone else (house fire, car wreck) or fighting off terrorists or similar domestic threats to the country.  (probably seen to many Hollywood movies-LOL).
 
Caring Wife- sorry for your loss and that was another long battle of 17 yrs., surely those years meant alot to both of you.
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), gland size 35, ct and bone scans look clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off 1+ yr., controlled well, resumed, used intermittently, resumed useage

Post Edited (zufus) : 10/19/2010 7:40:51 AM (GMT-6)


LV-TX
Veteran Member


Date Joined Jul 2008
Total Posts : 966
   Posted 10/19/2010 6:44 AM (GMT -6)   
Caring Wife,

I just wanted to offer you my heart felt condolences for your father. It always makes me shed a tear for the passing of any man with this disease.

May you find peace with you and yours.
You are beating back cancer, so hold your head up with dignity

Les

Signature details in Sticky Post above - page 2

woodysgirl
Regular Member


Date Joined Jul 2010
Total Posts : 32
   Posted 10/19/2010 2:58 PM (GMT -6)   
Terry, speaking of lists long gone, in searching the yananow site, I'm comforted by the relatively low numbers of RIPs but have often wondered, how long do RIPs and lost members stay on the board before they are removed?
Woodys stats:
Age at daignosis 55
4/2010 PSA 26.5
Biopsy results 4 of 6 positive at 40% R&L mid; 60% L apex; 80% R apex - perineural involvement
Gleason 7 (3+4 in 3 and 4+3 at R apex)
Treatment choice: ADT/EBRT/HDR
First Lupron shot July 2010, 5 weeks radiation to begin in sep followed by 2 HDR treatments
Woodys father died of PC at age 55 (woody was 5yo), we did not know until after diagnosis

Terry Herbert
Regular Member


Date Joined Sep 2010
Total Posts : 92
   Posted 10/19/2010 3:14 PM (GMT -6)   
G'day woodysgirl.

RIP members stay on the site for as long as their family members agree. I have not yet had any family asking for the story to be removed because they appreciate the importance of these stories to creat a better understanding.

As to the members who do not respond, I ran a MiniPoll on the subject and guided by what people said, I review the stories two years after the last update. If I feel that there is some value in keeping the stories, they stay for further review a year later: if there is no specific value, then I remove them. I realise that one respondent in four suggest that no stories should be deleted, but in reality the ones I have decided to delete add nothing to the knowledge base and can be regarded by some visitors as a waste of their time.

I'm a bit behind with my work, but have identified thirty old storiess that I'll be removing as and when I have a bit of spare time. My main focus is keeping the current stories up to date - and sending reminders to those who haven't sent in their annual update.

mr bill
Veteran Member


Date Joined Sep 2010
Total Posts : 683
   Posted 10/19/2010 6:10 PM (GMT -6)   
The below was found handwritten in a  scottish family bible of my wife's progenitors. I am sure is was written by someone other than a family member, but still holds true.
 

“The clock of life is wound but once,
And no man has the power
To tell when the hands will stop.
Now is the only time you own,
Live, Love, Toil with a will.
Place no faith in tomorrow
For the hands may then be still.”

 


Streaky Bacon
New Member


Date Joined Jan 2011
Total Posts : 1
   Posted 1/11/2011 7:59 AM (GMT -6)   
Hi Terry,

I am the wife of the late Alan Bacon, who you mentioned in the above thread. I am so pleased that Alan's story is still on the web site and that people are still visiting and reading his story. His wish was that if his story helped even one person then all the time he spent writing it was well worth it.

It's now 3 1/2 years since Alan passed away and I now have 2 beautiful grandchildren that he never got to meet but I see so much of him in them.

I wish everyone the very best with their fights and never, ever give up hope.

zufus
Veteran Member


Date Joined Dec 2008
Total Posts : 3149
   Posted 1/11/2011 11:36 AM (GMT -6)   
Terry's influence for me with PCa, ranks right at the top of the few people whom really cared and shared and helped get me engaged in this battle and put on armor in so doing. Back in 2002 there was not much for internet choices and information it lacked plenty, compared to today of course.

Terry referred to me as Rob Parsons, prefer Bob but that is no big deal with me. My journey is on the www.yananow.net website as mentors/experiences. I have been up dating mine for almost 9 yrs. now....hope I can keep saying that for alot longer. Terry's best PCa tips for me is basically question everything and keep looking and make your best decisions for yourself, only you walk the walk. His 30 days of self directed psa testings and charting it, was done on his own accord as a pioneer, to prove a point.....you can find that info on yananow still, tells plenty about psa flucuations based upon that alone. Glad that yananow can leave legacy testimonials so others can appreciate the struggles and journies others have gone through, like Alan Bacon mentioned above, also.
Dx-2002 total urinary blockage, bPsa 46.6 12/12 biopsies all loaded 75-95% vol.; Gleasons scores 7,8,9's (2-sets), gland size 35, ct and bone scans look clear- ADT3 5 months prior to radiations neutron/photon 2-machines, cont'd. ADT3, quit after 2 yrs. switched to DES 1-mg, off 1+ yr., controlled well, resumed, used intermittently, resumed useage
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