I hope you enjoy the following post written by the love of my life, Mark...
It’s been a couple of weeks now since the last blog post, and I can imagine that you are wondering how we are all doing but are perhaps not sure whether to reach out, or to give us space. I’ll go into more detail later, but rest assured that I am feeling fantastic and am now living every day with purpose and meaning, and while I do feel more tired at times and need to rest a bit more than before, I don’t feel like a “sick person”.
As you may be aware, further surgery is not possible due to
the location and spread of the tumour, and radiotherapy is out because it can
only be done once when it comes to treating the brain. Which leaves the medical
system with only one other option – chemotherapy.
Before we left for Sydney, we met with a Chemotherapy
Oncologist who explained the “options” to us – in short there is a drug called Temozolomide,
which comes in tablet-form, which may help to slow down or stop the
spread of the tumour in some cases, but would not reduce its size. And even if
it worked initially, over time the tumour becomes resistant to the drug and
would continue to spread. An alternative drip-based chemo drug could then be
used as a fall-back.
With that news we left for Sydney, with a follow-up
appointment with the oncologist when we returned so that he had time to prepare
a treatment plan and discuss it with his colleagues.
On our return from Sydney, it took us (well, me at least) a
couple of days to get back on my feet again. It was a busy time, and by the end
I think we were running on adrenalin only, with nothing left in the tank.
Initially I was fearing that the tumour was spreading at an accelerated rate,
but through the work and learning gained from the “Quest for Life” retreat, I put into practice many of the techniques learned and made
sure I got plenty of rest and was taking care of myself properly. Within a day
or two I had my energy back and was starting to feel really well again, being
able to get out into the garden at home and potter around doing small jobs here
and there.
In the lead-up to the appointment with the oncologist, I
started having questions pop into my mind about what chemo would involve;
things like side-effects, how do we know if it’s working, more information on studies
of its effectiveness etc. I really wanted to know more about the whole process
so that I could make an informed decision for myself about whether this was the
right option for me.
When we went to the appointment I spent most of the time
going through my questions and asking for the information that I was looking
for. The oncologist emailed me some information about the Temozolomide drug,
and explained some of the risks with any form of chemotherapy. I imagine a lot
of people walk into appointments like that, and would take the path recommended
to them without question, and not that long ago, I probably would have done the
same. But I listened to my inner voice that was telling me ‘Do some more
research before deciding’.
So I read through the information provided by the oncologist,
studied the side effects, the drugs used to manage the side effects, and then
did a lot of reading of clinical trials that had been done with Temozolomide. I
then collated my findings and made a pros/cons list to help distil all of the
factors that were important to me into a shorter list.
In short there were two key factors for me that made this initially
big decision a fairly easy one to make:
·
When effective (only about a 30% chance), it may
increase the progression-free time of the tumour by a few months, but
importantly, this had almost no statistical impact on overall survival
time.
·
It is a strong immune-suppressant, so if I start
on it then I am at high risk of catching even mild bacterial infections,
particularly in the lungs. This could then limit my contact with friends,
family, my son and the general public through fear of catching something.
It came down to the choice of taking a drug that will make
me feel sick and awful, and in the end, have no real impact on how long I live
(but it would have significant
negative impact on the quality of my
life). Is a couple of extra months really worth it? So I decided there and then
that I will not be going down the Chemotherapy path!
Shortly after making the decision, I knew that my family needed
to hear about this in person, so I booked a flight down to see them and explained
my decision to them. This is why we have been holding off on posting any more
updates until now.
Does this mean that I’m now doing nothing to improve my
chances of living a longer, happier life? Absolutely not! My life now is about
quality, and making the most of every day - doing things that have meaning to
me. Just yesterday I took a bike ride down to the shops, and enjoyed just being
out in the fresh air and sunshine. I am learning all the time about the
importance of good nutrition (and sorting through all the conflicting opinions
and half-truths that go along with it!). I am doing meditation and relaxation
exercises multiple times a day to keep my mind clear and focussed on living for
today, and not having regrets over the past or worrying about what may lay
ahead. I could write a whole other blog entry on the power of the mind, but
this post is already quite long!
I am reading inspiring books, and there is one in particular
that I wanted to call out:
“Anticancer: A New Way of Life” by David Servan-Schreiber
What made this book so striking for me was it was written by
a researching Neuroscientist who discovered almost by chance that he had a
brain tumour, and this is his story about the research he did into his own case
and things that can trigger cancer, how our diets have changed radically in the
last few decades, and also ways that we can reduce the risk of, slow down or
sometimes reverse cancer growth. It takes a holistic approach to prevention and
healing, but is also backed up by scientific research, and has been quite
eye-opening so far.
I am not under any illusions about a “miracle cure” with my
diagnosis, nor am I thinking that “If I just stick to this diet or meditate
three times a day, I can cure myself”.
It’s about making the most of the hand I have been dealt by taking care
of myself physically, emotionally and spiritually, and being at peace with
whatever lies ahead.
I choose to look at my situation with the
attitude “I am living with cancer, and I
choose to live my life as well as possible”, rather than “I am dying from
cancer, there is nothing more I can do”. It is about recognising that even in
our most trying of times, we are always able to make a choice – a choice that
is right for us, not what we think others expect of us. There are times when
this belief can falter, but I feel that I have the tools now to bring myself
back to living in the present rather than worry about what may come in the
future. Today is a great day because I
am alive!
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