“Being deeply loved by someone gives you strength, while loving someone deeply gives you courage.” — Lao Tzu
quote above comes to us thanks to Ken on NB Dogma. It is perfect and he offered
it up to us at just the right moment.
This is just a quick overview before I get started on my day.
Monday we met with the junior doctors on the Oncology team at my insistence
because they come around in the morning when I am not there and Les' head is
fuzzy from the Oromorph so he cannot remember everything they tell him. I had a
couple of pertinent questions I wanted answers to so I emailed the team liaison
Monday morning and requested a meeting when I arrived at hospital. The
conversation went like this:
consultants showed up at Les' bedside hemming and hawing about “possible bone
thinning cause by the first five days of radiotherapy Les underwent back in
I asked, “So Les had a second MRI this past Saturday. Did it show
anything different from the first MRI he was given at Stoke Mandeville hospital
on August 2nd?”
both consultants shook their heads, sad faces moving in unison.
why is it that Mount Vernon is dragging their feet on getting the physics data
over to you folks? Should someone else contact Mt. Vernon and see if a fire can
be lit under them?” (The physics data is I am told, the actual fractions of
radiation Les was exposed to each day back in 2013. This has been the main
stumbling block for the oncology team at the RFH for four weeks now, so we were
told. Supposedly Les had close to 43 fractions and 45 is the limit so there may
well be nothing they can do for Les short of chemo which he will not do as it
does not cure anything but can certainly kill him quicker than cancer will.)
well no. We’ve brought in a bone specialist from Stanmore to review all of your
husband’s scans and his file. What we are seeing is something that we cannot
quite pinpoint and without knowing for sure what we are seeing we cannot safely
go ahead and give your husband any more radiotherapy to ease his pain.”
do you mean by the term ‘…what you are seeing?’ I thought the MRI was a definitive
answer that this is bone mets from the colorectal cancer, which should rule out
the bone thinning you all thought might be the case. Are you seeing something
is a possibility what we are seeing is another type of cancer in the area.”
type of cancer do you suspect?”
“Well.......sarcoma, but that is very rare and we don’t understand how it
could be there.”
well Les was required to sign a statement before undergoing the five days of
radiotherapy at Mt. Vernon which stated he understood that the treatment could
case second line cancer at some point in the future.”
no, no, no. no, this couldn’t possibly be caused by his treatment.” And then
knew there was something we weren't being told! I could not figure out why we had been given the same vague statement repeatedly for over a month and a half now. At some point the Oncology team
at the RFH knew what they were seeing was in all probability a second line
cancer and they were stonewalling us until they had a more exact answer. This is the problem for patients you see. If you
don't know which questions to ask, then you will never get a direct answer. It was my
probing question about the MRI’s showing no differences and my pinning them
down with their own answer: nope. No change; well then doesn't that mean we
have a definitive diagnosis of bone mets? which backed them into a corner and
made them come clean with their exact concerns.
The trouble is patients don't
know what to ask, so they seldom get the answers they need until the last
moment when the Oncology team is assembled and ready to rush the shocked and
dazed patient into the treatment modality.
evening I was told a team meeting had been scheduled for 1 pm Tuesday so I
arrived early to be sure I didn't miss it. Les and I discussed the questions
and concerns we wanted raised so Les was ready. They finally came around at
4:30 pm. The same two women consultants as yesterday and a new face--a man, presumably he
had more authority???!! The man whose name is Todd, said:
all the scans, and we've called in an orthopedic specialist from Stanmore
hospital to review them. We are still waiting for the information from Mt.
Vernon but the folks from Stanmore are on the case now as well so we should
have it soon. We suspect what we are seeing is a second line sarcoma and we
need to be sure." That last statement was slipped smoothly in on the end.
A biopsy to my spine has been mentioned. What good will that do me? If it is
bone mets or sarcoma what difference does will a biopsy make?"
"Well it will make a difference in how we treat it, and in what medicines
you are given."
"What do you mean by medicine? Do you mean chemo? Because I won't have
aback by Les' statement--as if he had offered Les a lifeline and Les was
choosing to throw himself off a cliff instead: “Well, it is too early to make
any choices about treatment yet when we don't know exactly what we are looking
at. So let's leave this conversation for another time. We are going to
discharge you tomorrow. Once we have a definitive answer from Stanmore we will
be in touch and you can come down for a meeting with us so we can get treatment
As it stands now we
are likely looking at cancer caused by the treatment given to Les to
"cure" his cancer to begin with. But Oncologists see no illogical
fallacies or discrepancies in this scenario. They shrug their shoulders and
tell patients: "it happens sometimes." Good luck getting any accurate
stats on how often "sometimes" occurs. Death caused by treatment is
known as iatrogenic death. Those figures are folded into the general cancer
death population figures which handily obscure the actual facts. Just remember though...currently fifty
percent of all cancer patients die, supposedly of the disease...
was a very tough day for me. It is the first day since we knew for a fact Les
was dying of cancer that I was on my own on the boat. It was a harbinger of all
the days waiting out there ahead of me after he dies. I spent most of the day
crying in fits and starts, although it started off brilliantly with a visit
from single handed boater Kath of NB Bobcat. She is heading south, coming
down from Chester and has been looking out for our boat all along the way! She
breasted up next to NB Val and had a cuppa with me. Kath cried as we talked
about Les, tears spilling out of her lovely pale blue eyes. I was okay until I
read Les’ blog which he posted late Saturday night. Anyway I am making a list
of topics to write about when Les is gone; widowhood things like “First kill
your own spiders,” and “Jackie O Sunglasses.”
received a wonderful email from one of my Hospice instructors formerly of
Pullman. She is a brilliant and compassionate teacher. She follows our blog but never comments.
She sends brief emails when her support counts most and they are a deep and resounding hug from afar. Here is what she said:
As you know, dear Jaqueline, all is well at the deepest level,
and I am grateful you know that love transcends death. May the days you and Les
yet have together "on the boat" be brilliant, blessed, beyond the
moon. And may he go gracefully, peacefully forward...
washed all the curtains Monday and hung them back up to dry while I was gone to
London. Tomorrow I will wash all the throw blankets and yesterday I washed all
the windows, the boat roof, stern area and well deck in the front. Les may
return and find NB Val unrecognizable! It has been months since we’ve had the
time or the energy to do anything other than the most basic daily chores.
go now and get myself sorted before heading out on today’s journey down to the
Big Smoke. My baby is coming home today! We will sit on the bow in the sunshine
and sip our iced coffees. I will fix steak fajitas for dinner tonight. Tomorrow
Mike W. is taking me to Tesco’s and we will have roast chicken dinner and fresh
apple pie and watch movies on Netflix, while we come to terms with this current
scenario. If the weather holds we will cruise off somewhere quiet for a couple of days and begin going through the boat from stem to stern, while I make notes of every system on board, how it works, what parts are involved with part numbers, and sources, and what things to keep an eye on; any maintenance invovled and how to go about doing it.
In the meantime I offer my deepest gratitude and thanks to everyone who has commented on Les' post with such great love and friendship. Deep thanks as well to the boating community--both locally and spread out across the cut, for letting me know in an unobtrusive but loving manner that we are cared for and watched over; that someone is available if and when we should have a need. What you offer us is priceless. It is the true face of loving kindness: humble words and deeds in time of greatest need. Much love to our family on both sides of the world, for staying strong with us on this toughest of journies.
Jaq aka Momma/Mim/Nanny Jaq xxx