I started to write this post in our local hospice on
Wednesday of Holy Week.
Don’t worry, I’m not at death’s door or anywhere
near. I’m waiting for Mel who is having
her regular family support appointment here.
Then we will be driving up to The Royal Marsden Hospital in London to
talk to a researcher about a cancer genetics study which I’ve been invited to
take part in.
Sitting in the hospice has prompted me to reflect on how I
am coping. After all, I am likely to spend more time here in the future – it may also be the place where
I will eventually die.
I have now finished my cycles of ‘early chemotherapy’ plus
two courses of radiotherapy. On the
positive side, my PSA has come down from the 300’s to the teens. On the less positive side, the news from my
latest CT Scan was mixed. Some mets
(tumours) have shrunk, some have grown, and there are some new ones. Not quite the spectacular success I had hoped
for.
The side-effects of chemo are fading, although some less
than others and I am wondering if the tingling I feel in my tongue and fingers
might be permanent. The pain in my
pelvis has returned after my first course of radiotherapy had successfully
knocked it on the head. Back pains are
also more established.
One of the intriguing questions now focuses around which
of my current symptoms are because of chemo and which are there because of the
cancer. My month signed-off work is
drawing to a close and I need to decide if I feel well enough to go back.
The biggest challenge is a psychological one.
I have completed the initial treatment which was
recommended when I was first diagnosed and now almost all of it will stop. From having appointments once or twice a week
for treatment, blood tests, scans and consultations, I now enter a new phase in
which I will only see someone every 2or 3 months. As long as my PSA keeps down, I won’t need
the more intense treatments. When it
starts rising again, my oncologist will talk with me about what’s next.
This should make me happy and indeed I am happy to have
finished chemo. I am happy that my PSA
numbers have come down. I am happy that
I should be able to live a relatively normally for a while…
...but I’m also scared.
While the treatment was full-on, it felt like everything
was being done to fight the cancer, so I felt like I was fighting it too. Now that I am entering a more relaxed stage, I feel
like I have been parked in a side bay. I
feel quite alone and in danger of slipping into depression. Getting over the initial shock, fighting the
cancer and being determined not to give up has kept me going for the last 6
months. Over the last few weeks I have
started to feel this determination ebbing away.
It makes me reflect on the psychological stages of living
with cancer. For me, they have been as
follows:
Chapter 1: Initial shock
The panoply of tests, scans and biopsies to see how far
it had spread; waiting for the results; the mixture of shock, denial and endless
questions when they came back; slowly adapting
life expectations, plans, hopes and dreams as reality sets in; telling family, friends & work colleagues
and managing their reactions to the shocking news.
Chapter 2: Full steam ahead
Getting used to hormone therapy, radiotherapy and the
cycles of chemo; the regular round of doctors, nurses and specialists asking me
how I am coping; the hope that the inconvenience and side-effects are all worth
it; the determination to get through each day, each cycle, each phase and carry
on with life as fully as possible.
Now I’m in Chapter 3
I’m not sure what to call it yet but it feels like a big let-down. Apart from the hormone implants, I will have
nothing to steel myself for. Every few
months I will have a blood test and wait with baited breath to see if my PSA
has started to rise. The intensity of
chapters 1&2 and the adrenalin which went with them is gone. Its bit like the morning after a great party, when everything is silent, and you are on your own again, nursing a mild
hangover.
I have already seen the clouds of depression circling
overhead. I am less likely now to
respond to messages from friends, preferring to be on my own. That’s not helped by feeling tired all the
time. It would be so easy to slip into
the deep padded cushions of apathy and give up. I have suffered depression
before, and I know the signs.
The challenge is to adapt to this new pattern without
succumbing to the cloud’s dark shadows – to take advantage of the lull in
treatments – to live a little more instead of a little less.
I finished writing this post in the afterglow of
Easter.
Circumstances did not allow me to join in the events of
the Passion this year. Maundy Thursday
was spent at the Royal Marsden Hospital and Good Friday driving back to
Dorset. But yesterday in our village
church, the joy of the resurrection broke through the gloom. I found myself looking at the stained-glass
window of the risen Christ, knowing that now is the time when our faith bears
fruit. After everything was thrown at
him on the cross; after he was laid in a dark, lonely tomb; after all hope was
lost, he rose again! Life once more
entered the darkness and dispelled it with light.
His resurrection gives me hope. I will not succumb to the dark clouds and I will ask God to
raise me up again for this next chapter. Above all, I will remember his resurrection promise, “And surely I am with you
always, even to the end of the age.”
