Chris
Shackleton and Annie live in Norfolk UK. He was 55 when he was diagnosed in 2006.
His initial PSA was 53.0 ng/ml, but he does not know his Gleason Score - he was
staged T4 . His choice of treatment was adjuvant ADT (Androgen Deprivation Therapy)
and EBRT (External Beam Radiation Therapy). Here is his story.
THERE
WAS NO RESPONSE TO AN UPDATE
REMINDER
IN 2011
SO THERE IS NO UPDATE.
I
apologise if this is a bit of a ramble but it is the tale as I remember it!
I
initially went to my GP after noticing blood in my semen. With hindsight, I had
been feeling tired and generally run down long before this. Whilst the NHS (national
Health System) in the UK is generally slagged off, I have to say that I found
the system amazingly fast, professional and very friendly.
After initial
diagnosis I was put on anti flare treatment with hormonal stomach implants whilst
waiting for radiotherapy. Radiotherapy started quickly at Addenbrokes hospital
in Cambridge. The staff there were amazing. Friendly, supportive and lovely. Although
MacMillan staff [a cancer support organisation] were about, I was never approached
or offered counselling. There is a very interesting rapport builds up with fellow
patients and all are very supportive of each other. I know that anyone reading
this will either know this or quickly discover it when radiotherapy starts.
After
being warned of all the radiotherapy side effects, it seems I was very lucky and
suffered only a little soreness on the hips. The odd thing is that I seemed to
discover a new found energy whilst having the radiotherapy and completed loads
of projects around the house.
After this initial "sandblasting" the hormone
therapy took over and tiredness, lassitude, disinterest, took over. I only wanted
to sleep, watch television and read. Personally I didn't see this as a problem
(see later!). The loss of testosterone removed any sexual desire and left me pretty
much an unemotional, unfeeling shell. Although I knew I love my wife more than
life itself, it was impossible for me to show any feelings towards her. No one
discussed the use of Viagra with me and I'm still none the wiser as to whether
it would have been of use either then or now. [Probably not - what Chris describes
here is loss of libido - Viagra does not help with this problem]
During
this period, 3 years-ish up to December 2009, I can say now, it was pretty much
like being in a walking coma, but I didn't know it! Yes, I lost body hair, all
erectile functionality, put on weight, had hot flushes (till put on Cyprostat......a
magical remedy!), grew breasts etc., but this is now over, I feel like I have
awakened from a bad dream, only to find a worse one waiting.......and that is
the reason for this diatribe...........
I now know that during this time,
my wife became incredibly lonely. She resorted to FaceBook to make and chat to
online friends. She tried to talk to me but she may as well have been talking
to a wall. I didn't know she was there. By the time I had realised, after coming
round from the hormone therapy, it was too late. My wife couldn't go on and has
left me. It is totally bizarre, that here I am, feeling the best I have done for
years physically, but an am emotional and mental wreck. I was medically retired
from work on a full pension and a couple of weeks later was told I'm going to
spend retirement alone. That's not right.
I'm waiting to see my consultant
in March and obviously hoping for good news, but am now in some trepidation over
the possibility of starting further treatment knowing what I know now. Obviously
I will take the treatment if necessary as I'm sure there is a light somewhere
at the end of a bloody long tunnel, but I can't imagine it now.
The reason
for this missive is....YOU MUST SEEK COUNSELLING FOR BOTH YOURSELF AND YOUR WIFE
as soon as diagnosed, and before hormone therapy starts. I'm sure it is there,
but we were never offered and blundered on blindly to the worse possible ending.
IF NOTHING ELSE, YOU MUST TALK TO YOUR PARTNER, HOWEVER HARD. Discuss it before
and work out a support plan for each other.
Not a happy tale, but I hope
if you read this, it helps you through the journey to a happier ending.
Cheers
for reading.
Chris. x to all.
