When I was diagnosed with cancer, my life, which had previously been busy and outwardly focussed, was transformed overnight to a tiny dark world. My new life could be depicted like a stripped down pictogram, with coloured lines for the car trips connecting the key focus points - hospital rooms, the chemo ward, appointments with various medical professionals and my bedroom. My family and friends, pale and stunned, all had different ways of responding to my diagnosis.
They all knew that like any traumatic event, cancer is an intensely isolating and lonely experience.
This list is intended to help bridge the isolation gap and provide some positive ideas about what to say or do when you have a friend, co-worker or family member facing a cancer diagnosis.
1
Offer
specific stuff. Or even better, don't offer, just do.
We
all say at times of distress 'please just
let me know if there is anything I can do'. I found it difficult to respond honestly to
this question. My usual surface answer
was 'Yes of course I will, but there is
nothing which needs doing at the moment, it's all under control.'
The
honest answer would have sounded more like 'You
know what I would really love is for someone to give the garden a good
weed. Or clean the toilets
properly. And my oven - it really is
filthy. Do you think you could fix that
for me?'
Because
strangely, the little things which one should just let go when being treated
for cancer were, to me at least, even more annoying than they otherwise would
be. I spent so much time at home during
treatment that the state of the house became a real (but I acknowledge, out of
proportion) concern to me.
So,
if you want to provide practical much appreciated help, book a cleaning service for a few hours and let me
know when the cleaners will be arriving.
Or send around some home cooked lasagne for me to feed the
children. Much as my children loved
the million serves of 2 Minute Noodles I dished up during chemo, I think even
they would have appreciated something a bit more nutritious from time to time.
2
Keep it simple.
If
you speak from the heart and keep it simple it is difficult to go wrong. Don't overcomplicate things for fear of
saying the 'wrong thing'. Cancer is
complicated enough. It was often the
unembroidered statements which helped me the most:
I am sorry.
This is just awful.
I am here for you.
I am sorry you are going through this.
I
love you.
For me, the mere knowledge of your friendship and love was enough. It is not your words which heal me, but your
articulation of a basic human response:
I am sad about this horrible thing which is happening to you.
In
a similar vein, if you don't know what to say, say so. Even a motor mouth like
me is occasionally lost for words. In fact, I was in shock for weeks after the
diagnosis. There is no real need to
fill up that space with platitudes or clichés.
When you said to me: I am in shock
and I don't know what to say, I felt less alone.
Because after all, I am
really no different to you: I am just a human being who doesn't want to
die.
3
Give food. Or alcohol.
At
some point most cancer patients make some change to their diet or
lifestyle. I feel that what I consume is
one of the few things I can still really control in a life where absence of
control is now my permanent albatross.
But for me, diagnosis was far from the time to give up alcohol.
So I thank you, Mark, for the bottle of
French champagne you dropped around a few days after I was diagnosed. Some people may find this strange, but we
drank it in a bittersweet toast to the future. And we enjoyed it.
Food
is also welcome. At any time. Nine whole months after I was diagnosed a
friend dropped around on a Saturday afternoon with a home cooked casserole dish
of Spanish chicken, sufficient to feed the family with left overs to
freeze. His mother had died of
cancer, and in delivering this dish he told me that prepared meals were a
wonderful gift to his family when they went through their mother's treatment, and that he had
deliberately waited months to bring this round because he knew that life didn't
instantly snap back to normal once chemo was finished (see 12 below).
4
Listen and
Acknowledge.
I
could not share with anyone even a small percentage of my deepest darkest
thoughts both on diagnosis, and even now, more than five years later, I keep
9/10ths of my Cancer Hell Thoughts to myself.
When I initially talked about my diagnosis I mostly focussed on the
basics. Partly because a part of me
didn't want anyone to worry (see 5 below).
And partly because it took me some time to sort through how I felt. I am still in some ways working through that
process.
So,
although what I say may be trivial and banal and pretty light on medical
details, I love it when you sit and listen.
In
a world of constant commentary, where everyone has an opinion, criticism,
comment or social media 'like' or 'dislike' which they simply must share
with everyone immediately, I make a plea for the wonderful, underrated and old
fashioned skill of listening. Really
listening that is, without eyes darting to the side, or quick glances to your
watch, or fingers twitching for a smart phone.
When you listen and acknowledge, I feel both more alive and less like
anonymous grey faced patient no 3928904.
5
Worry not.
Leave
the worrying to me. I've got cancer.
Not you. Of course I don't
really expect you to heed this advice. I
know you will worry. I also know that in
a sense it is much harder to be the person standing by on the sidelines
watching the brakeless freight train that is Cancer, something you cannot
control and cannot change. I have
worried plenty about my husband and children and my parents over the last few
years. That worry ate away at me and
was in many ways harder than the fear of death and treatment.
So
what I really mean here is please, don't worry about silence, or be concerned
that you might accidentally say something or articulate a horror I haven't yet
thought of myself.
I
feel that the reason some of my friends and family avoided me was at least in
part because they didn't know what to say, and were concerned they would say
something tactless or scary. I am
pretty certain that the aunt who never called (and to this day, has not) did so
not through indifference, but because her husband had recently died from bowel
cancer, and she worried that she did not know what to say or, perhaps more
likely, feared that she would speak of the grief and pain that was in her
heart.
Please
know that your worry is unfounded.
Believe me, I have thought it all.
I have pondered every twist and turn of treatment, every side effect,
every statistic and every single 'why?'
In that sense, there is nothing you can say which scares me more than I
have already scared myself. There are no
horrifying concepts you could put to me which have not already haunted me when
I wake cold and trembling at 3 am.
There are no side effects I haven't either actually felt, deep in my
bones, or otherwise imagined or feared, so you need not fear that you might
'say the wrong thing'. Just speak from
the heart, and it will be fine.
6
Provide some
distraction.
As
F Scott Fitzgerald said 'The loneliest
moment in someone’s life is when they are watching their whole world fall
apart, and all they can do is stare blankly.'
We
all fall into the trap of the 'blank stare' from time to time. Distraction can
weave magic.
Whilst
someone undergoing chemotherapy is probably not up for a day trip to a winery
on the Mornington Peninsula, a short local walk might alleviate the aches and
pains which come with treatment. Turn up
on my doorstep and take me out for some fresh air.
Films
are also a fantastic distraction, the more brain dead the better. I treasured and watched the DVDs I was sent,
usually as it happened, by those with experience of cancer.
7
Accept your
limits: you can't cure or fix me.
I
promise you, I don't mind.
I don't
expect you to cure me, or even suggest a One Stop Shop Fix (Goji berries!
Turmeric! Flaxseed! Coffee enemas!).
To
be honest, I don't even expect that of my oncologist. Sure, he knows about breast cancer. Quite a lot, as it turns out. But the awful , unvarnished and often unmentioned truth is
that so much of cancer is random. We do
not know why some breast cancers metastasize and others don't. We don't really know why chemo kicks some
cancers to the kerb whilst others fight back and grow stronger every day no
matter what treatment is tried.
By
all means, encourage me to seek the very best treatment. But you don't need to take on the mythical
role of Finder of the Cure. That's
not your job.
8
Tell me you
don't need a reply
This
may seem like a silly little point of etiquette but bear with me. When I was first diagnosed I received what
seemed like an avalanche of communications - mostly letters, emails and texts (thankfully very few phone calls,
although there were a few teary voice mails from some old friends with whom I
had lost touch).
I
haven't yet found a book on cancer etiquette, and even if there was one I
wouldn't read it. I rather think that
once you lose your hair and eyebrows the obligation to be polite ratchets down
a few points. But the obedient well
brought up young woman inside me did wonder, in the maelstrom of organising
surgery, child care, work stuff, cancelling Christmas etc, when I would find
the time to politely write back a note or email thanking the writer for their
kind thoughts and assuring them that I am as well as I can be at this present
time……
Many
people who emailed and wrote simply said at the end of their note 'Please do
not feel you need to reply. Just know
that I am thinking of you.' Such a
little thing, and yet it really lightened the load.
9
Come to
chemo with me
There
is no way to skirt around this - for all its apricot reclining chairs, wall hangings of prints of unicorns, rainbows and sunsets, 'Light &
Easy' music and bustling warm nurses, the chemotherapy ward is a confronting
place. Death hides behind the pile of out of date magazines, and each patient's face is etched with stress and worry.
It follows that a trip to
accompany a patient to their chemo infusion is not for everyone.
But, if
you feel that it is right to do so, offer to go to chemotherapy with your
friend or relative. They will say no if
they don't want company. But on some
days, it is just the thing we need.
After
all, I made more than 35 separate visits to this pastel world. Sometimes I was happy to stare mindlessly at
the walls. Other times I read
voraciously. But on those occasions my mother insisted on coming, first driving
two hours down the Hume Highway, sitting up straight and biting her lip as the
chemo nurse set up the IV drip and inserted the needle into my arm for the
infusion of red poison (otherwise known as Adriamyacin), smiling brightly at
the nurses, sneaking glances at my neighbours (trying to guess, as I always
did, what they were 'in for') I felt like a little girl again, in a warm cocoon
of endless love and support.
10
The How are
You? Question.
Everyone
with a history of cancer, whether recent or not, is a regular recipient of this
question: how are you?
This
question invariably has an emphasis on the 'are' and often comes complete with
sad, pitying or grave face, the asker seemingly bracing themselves for a
cataclysmic response, for instance 'well
my bone scan just came back with mets in my hips and ribs' or 'there seem to be some lesions on my liver
which my doctors are concerned about' or even perhaps something like 'funny
you should ask - I'm actually pretty tired because I haven't slept ONCE through
the night since 2010'. Even if I did
have news like this to impart, I doubt I would do it this way.
Better
perhaps to ask 'how are you today?' Because when you live day to day, as I
do, actually the here and now is what
matters. If today is a good day, it
really is a great day - the sun is
bright, the colours of my world gleam and sparkle and the air is truly perfumed
and sweet.
11
Remember
milestones.
Pre
Cancer, Christmas was a time for family arguments, making trifle, watching
Holiday Inn yet again, oyster and prawn feasts, 40 degree days, a spot of out
of season gingerbread muffin baking and the scent of pine around the Christmas
Tree. Post Cancer, Christmas marks the
day after I returned from hospital after my mastectomy, dazed and unable to
even dress myself before returning to hospital on Boxing Day for a little
further 'mop-up' surgery (dread word) to improve the 'margins' (even more dread
word).
Over
time, I expect that maybe Christmas will regain some of its other meaning and
the balance will shift back to what it was, a happy time. But for now,
just the very thought of December and those metaphorical jingling bells
stills my breath. Indeed, some days I
feel my whole existence is no more than a struggle of pre Cambrian proportions
to move past each December, and notch up another year with no recurrence.
If
you remember this milestone and drop me a line on 20 December to say that you
have remembered and are thinking of me, then you will have my eternal
gratitude.
12
Take the
long view.
Lest
I be accused of complaining, I can say that it gets easier with the passing of
time . Sometimes whole days pass where I
do not think about cancer. I have weeks where I feel no lingering side effects of chemotherapy or surgery. Sometimes I am tired just because I had a
late night, and not because the nerve damage from the Taxol is still having an
effect on my legs and arms. But it is a
long road, and I realise my life is changed forever. There will always be some kind of worry,
even if just at the back of my mind. It
lessens with time, but it does not vanish.
As
with the loss of a spouse, I know now that the hardest time is not necessarily
days or weeks after the diagnosis.
No. It is in the long months of
treatment, and then 6, 12, 18 months post diagnosis.
It is at those times that a quick email or
note from you can lift my spirits again and remind me that I am alive on this
day and that is what truly matters.
J xo
