Rosamund says ...
“Remember you must be your own advocate,” a friend
told me at the start of the year, on hearing that I had been
diagnosed with breast cancer. At the time I didn’t really
understand what she meant. I assumed the doctor would
explain the treatment (in my case chemotherapy, mastec-
tomy surgery and radiotherapy) and my job would simply
be to do as I was told. But I underestimated the sprawling
nature of cancer treatment and its side effects.
For example, after surgery I had painful cording, where a
web of ropelike tissue forms in your arm, making it difficult
to raise above your shoulder. I thought I had to live with it
until, after a night of desperate googling, I read on the
Macmillan website that I could ask to be referred for physio-
therapy — which I did and it made a huge difference.
Doctors are not mind-readers, so one of the most impor-
tant things I’ve learnt is to speak up if something’s not right.
Also doctors are so busy and under enormous pressure.
I often found that I hadn’t been told a key bit of information
and, in some cases, was told completely the wrong thing.
I’m not criticising the NHS: I was diagnosed and treated
quickly, saving my life. I’m keenly aware of how lucky we
are in this country to receive such treatment for free. But if
you have the resources, there are many private options for
extra support.
Recently a radiotherapy nurse mentioned in passing my
high risk of lymphoedema. “What’s that?” I asked, to be
met with the puzzled “Hasn’t anyone told you this
already?” expression with which I’ve become so familiar.
She explained that, since all my axillary lymph nodes
have been removed, my right arm has no way to expel
toxins, so I need to be careful never to risk infection by
breaking the skin or even getting dirty fingernails, other-
wise my arm could swell up like a lilo — and it’s incurable.
“So wear gloves while cleaning or gardening,” she said.
“Don’t have blood tests on that arm or get any burns or
insect bites.” Riiiight. “Oh, and no manicures.”
Is there anything I can do to reduce the risk, I asked: does
massage help? Or exercise? “Well ...” she began. “Exercise
can help but too much can make it worse. And unless
massage is done properly it can also make it worse.”
I left the hospital feeling utterly bewildered and quite
scared. So, after more frantic googling, I signed up for a
consultation with a lymphoedema specialist through Perci
Health: a digital platform providing access to private cancer
experts, from nutritionists to psychologists.
After a 40-minute chat I felt reassured. The short version
of her advice is this: exercise is good, unless I decide to get
into weightlifting, which might be a bit much, and I can have
a manicure as long as they don’t cut my cuticles. The risk oflymphoedema is highest immediately following surgery, so,
as long as I’m sensible, I can relax as time goes on.
The cost is about £65 per session, so platforms like Perci
Health might not be accessible to all, but I see it as a good
use of the money that, pre-cancer, I would otherwise be
spending on balayage at the hairdresser.
Now I know that being your own advocate simply means
doing your own research and sometimes taking matters
into your own hands. The NHS treated my cancer. But it’s
my responsibility to look after everything else.Jonathan says ...
Pretty much everything I know about cancer I have learnt
this year. Same for Rosamund. Sure, we knew which bits of
your body to check for lumps, but other than such basics we
have, this year, had to sit in front of various doctors and just
take what they say as true. And of course it is true. Doctors
do not tend to lie.
However, truth has certain boundaries because one
doctor may believe in a treatment that another does not,
and so recommends it. As Rosamund said, you have to be
your own advocate. For instance, she has barely ever seen
the same oncologist. One oncologist, when she had finished
her weeks of the worst chemo, asked if she was about to
start chemo. And surgery follow-ups have often been
carried out by people she was not expecting, who did not
even know what anaesthetic she was due — a terrifyingly
vulnerable position to be put in, gowned up and scared.
I know, we are in a pandemic and the NHS is over-
stretched. And they saved her life. But certain things have
happened over the past year or so that have made a difficult
journey a bad trip. In America they may sue. Here we just
Victoria Adamson get on with it. ■ @RosamundDean, @JonathanDean_
Rosamund and Jonathan’s story will continue in Style over the coming weeksWhat is it like dealing with breast cancer – as a couple?
Rosamund and Jonathan Dean’s column continues
Cancer, honestly
‘I left the hospital feeling utterly
bewildered and quite scared’
The Sunday Times Style • 113