VCCC Head and Neck Cancer Symposium 2021 – Intimacy and Sexual Health
The VCCC Alliance is a powerful partnership between 10 leading research, academic and clinical institutions working together in Victoria to expedite and amplify leading-edge cancer research, knowledge and expertise to improve outcomes for people affected by cancer.
Julie was a presenter at the VCCC Head and Neck Cancer Symposium 2021 – Intimacy and Sexual Health, held on Tuesday 30 March 2021.
Presentation by Julie McCrossin, Head & Neck Cancer Survivor
Thank you so much for holding this Symposium.
Many Head & Neck Cancer patients need your help to return to a happy sexual life.
We are the walking wounded.
We are damaged emotionally or physically or both.
Many of our partners are traumatised too.
Please band together & fight for the money you need to help us.
We need you – the teams that saved our lives – to stick with us as we manage the side effects for the rest of our lives.
We need you – our multidisciplinary teams – at 5, 10 & 15 years, – including quick access to dentists, specialist nurses & psychologists
I’m going to introduce you to 3 patients.
I want you to listen deeply, as if you had never met a Head & Neck Cancer patient before.
I want you to ask yourself:
“If this happened to me, how might it affect my sexual life?”
“If I looked like that, how might it affect my sexual life?”
“If I felt that way about myself, how might it affect my sexual life?”
“If I needed that kind of treatment to save my life, what kind of support might help me kiss & have sex with my partner again?”
The first patient I want you to meet is me.
After my 1st radiation treatment in 2013, I had a big, sobbing cry in the toilets at my cancer centre & then in the car park.
I had another 32 days of radiation treatment.
But I didn’t cry again.
Or more accurately, I couldn’t cry again.
I haven’t cried properly since that 1st treatment day in 2013.
I haven’t been able to cry for over 9 years.
Something has frozen inside me.
My sexuality has frozen as well.
Research indicates I am not alone.
Yet no-one in my cancer team has spoken to me about this.
Why does this treatment damage our emotional lives?
What can we do to make psychological pain relief as much a part of routine care as physical pain relief?
Here’s my story.
Video 1: Julie McCrossin – Head & Neck Cancer Patient – Mental Health Challenges – The Mask.
Duration: 1 minute 46 seconds.
Let me introduce you to Maureen Jansen from Aotearoa/New Zealand.
Maureen helps to run a registered Head & Neck Cancer charity for fellow survivors.
It is a support network with a newsletter, face-to-face meetings & a Facebook group.
As you listen to Maureen, please ask yourself:
If I needed the treatment Maureen has had over the years, what kind of support might help me have the confidence to kiss & have sex with my partner again?
Here’s Maureen Jansen.
Video 2: Maureen Jansen – Head & Neck Cancer Patient – Mental Health Challenges – 3 Strategies.
Duration: 3 minutes 43 seconds.
Let me introduce you to Hans Ede from Camden in NSW.
People often talk about men being unwilling to ask for help or to receive it.
I was once the MC of a Prostate Cancer Forum at the Peter MacCallum Cancer Centre.
There was an audience of over 200 cancer survivors & their wives…
plus over 40 Specialist Prostate Cancer Nurses.
I saw how relaxed the men & the nurses were together as they talked about different ways to get an erection & how to manage incontinence.
When will Head & Neck Cancer patients have a network of skilled, Specialist Nurses to help us?
Here’s Hans Ede.
Video 3: Hans Ede – Mental Health Challenges.
Duration: 2 minutes 46 seconds.
Since my treatment in 2013, I have revisited my cancer centre many times.
I’ve had many tests and investigations.
They are a caring, professional team.
But no-one has ever asked me about intimacy or sexuality.
Problems with intimacy & sexuality are not only about facial damage & dental damage & jaws that can’t open properly.
Of course, this physical damage is challenging & we need help long-term.
But the message for today is that damage can be emotional as well.
My final video is with A/Professor Haryana Dhillon, a Survivorship Researcher at the University of Sydney.
Here’s Haryana Dhillon.
Video 4: A/Prof Haryanna Dhillon – Survivorship Researcher, University of Sydney.
Duration: 49 seconds.
A quick final comment about teeth, dental care and intimacy.
The cost of dental care is a very significant issue for survivors of Head and Neck cancer.
Romance is nurtured by smiling, kissing and going out for meals together.
We need teeth to help with these three human activities that bring joy to life.
Many Head and Neck cancer patients require multiple extractions before treatment. Access to publicly funded dental care is limited. Most patients must pay for their own dental care in the private sector.
Those of us who have had radiation therapy to the mouth and jaw area, like myself, need regular dental care for the rest of our lives to avoid the need for an extraction. Extractions make us vulnerable to a serious condition where parts of the jaw bone die and major reconstructive surgery is needed.
The inability of many head and neck cancer patients to afford private dental care means that many survivors live for the rest of their lives with missing teeth. Some eat only soft foods. This is a barrier to intimacy.
Thank you for listening.