FOR THE WOMENFOLK OF PROSTATE CANCER MEN
seem to be surprisingly few websites dedicated to helping the partners of men
through the tangle of emotions that goes with the diagnosis of a disease that
is immediately assumed to be fatal. I don't pretend to understand the thought
processes of women, despite a happy marriage of many years (45 coming up in October
2012) but I hope this page and the Links I give will help in some way to redress
People diagnosed with a potentially terminal illness will usually
have reactions similar to the grief experienced by people who suffer the loss
of a loved one or some other tragedy. There are various definitions of these reactions,
perhaps the most well known being the five stages termed Denial, Anger, Bargaining,
Depression and Acceptance. Discussion and good, open communication in this
emotional storm can be difficult but are essential.
From the partners'
point of view, the dreadful shock of hearing the word 'cancer' applied to a loved
one is bad enough. Added to that is what one woman described as the 'guilt' she
felt because, although the thought of losing her partner was terrifying, she was
also very worried about her future - how would she cope? Of course that is an
absolutely natural concern, but she felt that it was somehow 'wrong' and 'disloyal'
to be worried about herself at a time like this. Men will sometimes react badly
if such concerns are expressed by their partners. I think this is epitomized by
the story one of my brothers tells of his break up with a girlfriend. He was trying
to turn his Volkswagen Kombi around on a narrow, steep dirt road in the mountains
and he felt her focus was wrong. Her main worry, so he said, was not if or how
he would survive a plunge down the mountain, but how she would get home with his
car wrecked down in the valley below. Some men will feel the same way about their
partners' concerns and may even feel that their partner is 'letting the side down'
by letting their own fears come to the fore.
late Harry Pinchot's speech ROSES
FOR MY LADY says many good things, but this is the crux of what
he has to say, talking as a man with prostate cancer:
"We often become fixated with our problems and the fear of our own
mortality, while at the same time becoming oblivious to the needs of our spouse.
We must remember that she not only has to deal with our mood swings, declining
health, unusual diets, anxiety over PSA test results, doctor visits, insurance
and all the other issues relating to our disease that we deal with, but she must
also face her own fears. These are real and pervasive fears which often are not
fully shared with us. She must come to grips with the very real possibility of
losing her spouse, her lover, her life partner, her best friend and often her
primary source of income."
Tracy Carter Sondeen, who is Yana
Member ERIC SONDEEN's
wife, has written a very touching poem ANEURYSM
that many who have a loved one diagnosed with prostate cancer will relate to.
men will themselves have their own issues to deal with. The foremost of these
is often the 'stiff upper lip' that is such an important definition of being a
'man' - cowboys don't cry. Men must never admit a weakness, They can deal with
anything that comes their way, from a grizzly bear to a cancer diagnosis. And
they can do it themselves. They don't need help. Added to this is the concern
for their partner and family - they will often keep information to themselves
rather than share and discuss it, worried that this will upset their loved ones
even more. A committee of one can often get things wrong - and men who behave
in this way are no exception to that rule.
Prostate cancer has another
unique aspect that can affect relationships between men and their partners more
cruelly than virtually any other disease. Both the disease itself and the treatments
for the disease can and do affect sexual activity. This can creates tensions that
may be difficult to address and are summed up well in the piece I have entitled
written by prostate cancer man ALAN
in which he emphasizes his view that:
"The most fundamental requirement
is an ability to communicate with each other about these issues with love, candour,
and acceptance. With that, a couple is on the road to success. Without it, they're
Roz Baker has also contributed some valuable insights into
the important matters that must be dealt with for healthy RELATIONSHIPS
to be maintained after a prostate cancer diagnosis.
difficult though it may be in the emotional aftermath of the diagnosis, I believe
the most important first step is to acknowledge that the diagnosis and treatment
choice is a joint problem, that both the man diagnosed and his partner must tackle
these items as a team using their own individual strengths. Most couples will
have faced some crises in their time together prior to the diagnosis and it may
be useful for them to review how they dealt with those to develop a focus and
a plan for dealing with the new problems. They should consider using professional
help in developing their plan if they cannot deal with the issues themselves.
If this joint venture agreement can be agreed, it will make it easier
to for both parties to attend medical consultations together, to make notes and
ask questions, to search for, interpret and discuss the information required to
come to the decision as to how best to proceed. It is very important to "Know
The Enemy" or as Dr Strum puts it "Assess Status Before Determining Strategy".
The point of these two assertions being that prostate cancer is not simply one
disease - there are many varieties. Some of these are very much more dangerous
than others but the majority of cases diagnosed in the modern era are what is
termed Low Risk. The more that is known about a particular diagnosis, the
easier it may be to pick the most appropriate therapy. This article THE
PROSTATE CANCER QUANDRY, published in the June 10, 2010 issue of
Wall Street Journal summarises a study which claims to have identified 24 strains
of prostate cancer with the majority presenting this low risk profile. A piece
I wrote and titled THE ELEPHANT IN
THE ROOM tries to focus on how to get to grips with the risk attached
to a specific diagnosis. And although no one can ever give an answer to the question
"How long ...... ??????" there are pointers as to the likelihood
of survival being longer rather than shorter for most men diagnosed today.
the process of getting to know the enemy can be daunting. Entering 'prostate cancer'
into Google produces more than 10 million hits: 'prostate cancer treatment' produces
almost 12 million. So were to start, what to do? Here is my suggested list of
actions, based on what I would have done, knowing what I know now - and what I
know is available now:
Click on the DON'T PANIC BUTTON on
this page and go through the site using the pages Don't Panic : Good News! : Diagnosis
: Surviving : Treatment Choices : Resources to get the basics of the language
and disease and/or
Read, download or order a copy (no charge) of the booklet A
STRANGE PLACE to serve as a reference
Before any meeting or consultation, make notes of questions you want to ask; always
attend consultations and meeting together if possible; if that's not possible
try to ensure that a trusted friend is with there. If the doctor agrees, tape
all meetings so that what is said can be reviewed and understood. It is important
to make notes after each meeting and start a new list of questions
Obtain copies of all reports at all times and ask questions until you understand
them: verify these reports with second (or more) opinions [my
personal approach is to keep getting opinions until I find one that agrees with
mine, but that is not for everyone!]
Because time with a doctor a is often limited other resources should be used to
answer questions. Some institutions have Nurse Navigators, who can be a blessing.
If they are not available, Support Groups, especially those where partners are
welcomed can be helpful in answering questions.
Joining FORUMS MESSAGE BOARDS AND
MAILING LISTS on the Internet enables questions to be put to the
thousands of members of these sites, many of whom have deep knowledge of prostate
cancer. One site of particular interest to the wives and female partners of diagnosed
men is A
PROSTATE CANCER FORUM FOR LADIES ONLY a group dedicated to educating
women about Prostate Cancer; its treatments and side effects. There is also a
WOMAN'S PAGE which has some good basic advice for both man and
woman. Another site dedicated to helping womenfolk affected by prostate cancer
PROSTATE. There is also a very specific women's only site for the
partners of men who have a problem with PEYRONIE'S
DISEASE. This forum is accessible at WOMEN'S
PEYRONIES DISEASE FORUM
Going through these steps, will
gradually point to a conclusion as to what the best choice might be for the both
parties. Inevitably in this process, the question of erectile dysfunction (ED)
will have to be discussed and considered. All current treatments will affect the
erectile function of a man to a certain degree. Just how much effect there will
be is impossible to forecast on an individual basis. Some men have very few problems,
others never recover. In considering the claims made by various institutions offering
treatment, be aware that many of these claims may be based on definitions that
might not equate to what you think they mean.
There are some links on the
Yana site to pages and other sites that might help to focus on the ED issue:
CANCER AND INTIMACY- PCAI is a mailing list for frank and open
discussion of the sexual issues surrounding PCa.
TALK is a website dedicated to helping Prostate Cancer patients
deal with Erectile Dysfunction. While this site is primarily for Prostate Cancer
survivors, any man with a question about ED is more than welcome. This site lives
up to its name - do not visit if you are at all offended by frank, blunt talk
about sexual matters.
An article on the September 30, 2010 issue of The Vancouver Sun entitled
'VERY FEW MEN... ARE THE SAME AS BEFORE'
are some three pieces written by men based on their personal experiences that
might be useful reading:
SEX AFTER RADICAL PROSTATECTOMY
SEX AND PROSTATE CANCER
ERECTIONS - WHAT MOST
MEN WON'T TALK ABOUT BUT THEY ALL WANT TO KNOW ABOUT - a 'no punches
pulled' piece, not for the faint hearted byMentor GLEN
LESLIE who believes in 'telling it like it is'
Husband and wife team Stephan Wilkinson and Susan Crandell contributed their views
on erectile dysfunction for a book OVER
THE HILL AND BETWEEN THE SHEETS: SEX, LOVE AND LUST IN MIDDLE AGE
after Stephan's radical prostatectomy. These excellent pieces written by them
show clearly some of the differences between the way men and women regard the
issue and are well worth reading.
Susan's essay is WHAT'S SEX GOT TO DO
WITH IT? and
Stephan's is entitled MECHANICAL
Sex therapist Bettina Arndt collected data from a number of men on the site for
her book WHAT MEN WANT - IN BED
is all about why sex matters so much to men
husband Keith had surgery at 50 years old and the consequences
of his impotency were near devastating on their relationship. Their book MAKING
LOVE AGAIN: HOPE FOR COUPLES FACING LOSS OF SEXUAL INTIMACY is
written from both points of view.
A MiniPoll conducted on the
Yana site in mid 2010 entitled WHAT
WERE YOU TOLD? covers some the 'minor' side effects that are rarely
IT OR LOSE IT is a summary of a study that suggests that it is
important to use drugs and other devices sooner rather than later to prevent penile
The SURVIVORS STORIES
that men relate which can be searched by a number of criteria rarely touch on
emotional issues, although some do. Many of them do deal with the physical aspects
Hopefully this page, no doubt incomplete in many aspects of
this very complex subject, may help women who might visit. If you have anything
you think might add to the page - Links, articles, websites please MAIL