Speak for Yourself

Claire Duffy's blog about public speaking and communication (in real life). Speak well, do well!

A tribute to Helen

Helen PedersenA little over two years ago my friend Helen Pedersen asked for help preparing a speech. The title was ‘Not dead yet. What are you going to do?’   She was four years into treatment for ovarian cancer  and    had agreed to be  the  guest speaker at a  fundraising dinner.  Helen dreaded public speaking.   It wasn’t an easy  job for either of us.

Her  first draft  opened with excuses about the unseemliness of  drawing attention to herself. She blamed her Presbyterian missionary  grandparents. I blamed her. Self-promotion was not among her many gifts.  But at the end of  our  second run through, on stage in an empty hall,  she straightened up,  tidied her notes, and  said “I can do this”.  And she could.

Helen went  on to speak often, and well. Communication  was one of her  many gifts. Just a few weeks ago one of   her  palliative care nurses  told  her  that  Helen’s  oncology  session  changed the nurse’s life. Helen glowed. What a gift that young woman gave her. I’m sure she’s not the only one who could have.

Helen  was a doctor,  a wife,  a mother, a musician, and a fabulous friend.  She was  intelligent, warm,  kindhearted, gentle, amusing,  selfless, and  sharp, with a great eye for the ridiculous.

A physician in a family of  physicians, she had a unique perspective on cancer. In one of our last conversations she told me she’d had a dream run “with this”.  My  raised eyebrow sparked  a firm retort.  “I could not have had any more support”.  Well Helen, it wasn’t hard.   You were always so  calm, so practical,  so un-needy. Your cancer drew people together around you. We  were closer because you were sick.  “How rotten” I’d say. “These things just happen” you’d say. “Everybody gets something”.  I do wonder if in the darkness of the night  you ever felt  dread, sorrow,  fear,  worry,  loss. You never  shared  it. Perhaps  you  really were superwoman.

I didn’t expect  as much as two years to pass from that first speech to writing this.  Helen  lived  much longer than she’d hoped,  but  she  died on Tuesday morning, May 21st. I will miss her.

I’d like to remember her in her own words.

In May 2007 I was diagnosed with an advanced ovarian cancer (by myself – I even ordered my own scan, typical inappropriate doctor  behaviour), and 2 days later was in RPA having surgery, which successfully removed everything that was visible. The chemotherapy which followed also went well  and when it all finished in early October I was in remission, with normal tumour markers and a clear scan.

Obviously this was a fairly cataclysmic event – I was 53, very happily ensconced in a busy general practice, our two boys were 19 and 21, at university but still at home, we had just come out of a decade of looking after our mothers (who demented and died one after the other) and life was good.

Rather surprisingly, I wasn’t as shocked or overwhelmed by all this as I might have expected.

I think 20 years in GP means that you are very aware that random disasters happen  to completely normal people, and everyone gets something eventually.

So I didn’t find it particularly outrageous – and understanding the system meant that I didn’t have the anxiety that comes with being lost in a universe you don’t understand and can’t control, which happens to people who don’t have a health care background.

I was also aware that much progress had been made in ovarian cancer treatment since my medical student days, and that even if I wasn’t cured , it was likely that I was going to be well for a considerable time…

So we moved to the next stage – finally well after all the treatment, but with the knowledge that the chances of being alive in 5 years were about 20% (and 10 years much lower than that).

20% is a low enough number that you can’t reasonably assume that you’ll be fine and forget about it – and I didn’t see why it should be me in the 20% any more than it should be anyone else.

On the other hand you may be the person that gets lucky, so you also can’t throw your hands up and behave as though you’ll be dead in a year.

I found the uncertainty very difficult, and in some ways it was the most difficult time of all so far. I wasn’t very rational about it, and kept wanting to predict the unpredictable – was I going to be cured?

It was very clear that life wasn’t going to be the same – I wanted family time, I didn’t want to continue working as much as I had before, I wanted to travel and had a huge list of places I wanted to see.

So I dropped down to part-time work, and set about planning a trip to the High Arctic and Scandinavia, which we did in 2008, and a road trip up the west coast of Scotland, and the Orkneys which we did in 2009.

And I spent time with the friends I’d been too busy for, and who had just emerged from the woodwork as an amazing support network when I got sick.

Of course there are major logistical problems with this – you can plan all you like, but you never really know that something won’t happen to stop you. And now for some reason I can’t get travel insurance.

The plus side of the uncertainty, of course, is that you get much better at being in the moment, taking advantage of all opportunities to do things when you can, and REALLY noticing when things are wonderful. No more putting things off till next year because you didn’t get around to them or couldn’t fit them in.

The next thing that happened, not too surprisingly, was that the tumour markers (in the blood tests) started to rise slowly from the middle of 2009, and by the beginning of 2010 it was clear that I wasn’t going to be cured. Even then, I had 9 months before we needed to start chemotherapy again, which allowed me to

1. Do the Bay of Fires walk with good friends – something we’d been talking about for years

2. Go to London with my choir on a tour and singing at the opening of the 2010 Proms in the Royal Albert Hall and  in Westminster Abbey and St Paul’s Cathedral

3. Spend a week walking the Larapinta Track in Central Australia (and falling spectacularly down Mt Sonder – lots of blood, cracked cheek bone and spectacular black eye – who knew it was made of rock!)

The second lot of chemo bought me enough improvement to have 5 months off treatment – enough time time to visit the Kimberley, the Bungle Bungles and south-western WA in the wildflower season.

We started the 3rd lot of chemo in November 2011, just before our son’s wedding, but it didn’t prevent us going to Lord Howe for it, and I even still had hair.

The chemo has really not been too bad, and infinitely better than the TV/movie depiction – certainly no lying on the floor of the bathroom and vomiting. In fact we went to Kakadu for a few days in the middle of the first round. On 2 occasions I’ve had chemo during the day then fronted up to the Opera House to sing in the choir.

I made the decision to stop clinical work before the second lot of chemo – although the chemotherapy was perfectly tolerable, it does fry your brain and make you pretty tired, and I was aware that my focus, problem solving, and ability to keep multiple balls in the air was really not what it had been, and more chemo was only going to make it worse.

Which brings me back to the title of this talk: I wasn’t dead yet and what was I going to do. I still needed the meaning and structure and engagement with the world that your profession gives you, but didn’t feel I could continue taking responsibility for patient care.

Two things have kept me involved in the medical world

1. Taking small groups of medical students – an enormously rewarding activity (though I did struggle a bit with the workshops we ran with actors on breaking bad news!)

2. Doing occasional work on the NSW Medical Tribunal, hearing cases where doctors have been accused of professional misconduct. It’s been really interesting, feels useful, and allows me to dress up and go to work.

So coming to the present – I’m still here, probably have 6 – 12 months left, still functioning and enjoying myself, on and off chemotherapy.

I do think the medical background has helped. Very little surprises me (except that I REALLY don’t like needles and I’m not much good at discomfort either). I feel very much part of the decision making process (when I want to be – I’m rather inconsistent about it, which must make it difficult for everyone), and the care I’ve had has been absolutely wonderful.

In a rather bizarre way the process has been enormously interesting from a professional point of view. One of the key skills as a clinician is the ability to divide yourself in 2 – so the human part of you is connecting to the person you’re with, but there is a problem solving cerebral part which is looking at the issue from the outside, from what you might call the “helicopter position.”

I’m pretty sure I do this a lot. Very useful coping strategy!

So now looking back at all this (and I’ll reach the 5 year mark in May), although (to quote my daughter – in law), it does suck, I feel extraordinarily lucky, and so grateful to the advances in science which have given me this time (although I wouldn’t mind a magic bullet coming to cure it).

I’ve seen our elder son get into medical school, finish, start work as an intern, and get married to a lovely young woman. I’ve seen our  younger son graduate very well, negotiate his coming out, settle into a solid relationship with a fantastic young man and start a post-grad law degree.

I’ve made my wonderful husband Michael go with me to all sorts of places he didn’t want to go to.

So I feel I have an enormous amount to be grateful for, and encourage you to keep up the support for both the science and the care.

 Helen was passionate about improving research into Ovarian Cancer. Please give to her preferred charity: The Ovarian Cancer Research Foundation, to  save others like her.

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5 comments on “A tribute to Helen

  1. Ginny Neighbour
    22/05/2013

    Claire – thank you so much for this wonderful tribute. I am of course already missing Helen.
    Ginny

  2. Sue Steiner
    22/05/2013

    I never met Helen, however after reading this I wish I had – what a special special person. They do say the good die young. RIP Helen – although I didn’t know you I’m sure anyone who crossed your path will miss you enormously. Sye

  3. Renata Ratzer
    23/05/2013

    Indeed, thank you. And we will donate, but I’d like to put on record that there is NO-ONE like her.

  4. Med student
    08/03/2014

    I was lucky enough to be one of the medical students that Helen taught towards the end of her life. Not only was she a remarkable teacher, she looked after us and helped us negotiate the confusing early days of medical school. That she listened compassionately to our complaints about inconsequential minutiae, while undergoing such an enormous personal struggle, speaks to her incredible strength of character.

  5. Vibeke
    21/10/2014

    I have been wondering about Helen. I moved to Melbourne in 2009 and she was my doctor (and previously I was the vet for her dog) before I left. I am so cross that I didn’t look her up when I came back to Sydney in December 2012, but thought about her often and wondered… She was a fantastic woman, a fantastic practitioner. I feel honoured to have had lovely chats about our sons and our dogs and mortality. Thank you for the tribute. I have donated to ocrf previously, but will give more now.

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Speak For Yourself