Friday 30th October 2020

World Head & Neck Cancer Day 2020. 29/51 #LifeThisWeek. 58/2020.

World Head & Neck Cancer Day 2020. 29/51 #LifeThisWeek. 58/2020.

World Head and Neck Cancer Day is coming soon. On Monday 27.7.2020.

In this week leading up to the day, I am sharing more about head and neck cancer.

From Beyond Five, this information:

There is currently NO screening test for Head and Neck Cancer.

 

What Are Some of the Symptoms?

Here is a link to the page on Beyond Five to share more on symptoms.

*sore tongue, mouth ulcer(s), red or white patches in the mouth

*neck lump

*pain in the throat

*ear pain

*hoarse voice

*painful or difficulty in swallowing

*blocked nose on one side and/or bloody discharge

IF you have any ONE symptom for THREE weeks, seek medical advice.

 

How is head and neck cancer awareness and information shared?

In a world unaffected  by COVID-19, this coming week  would have been a time for gathering together for fundraising and awareness raising in our country, and nearby neighbours, New Zealand. Sadly, this is not possible in most cases.

Last year, we were able to do this to raise awareness at Central Coast Cancer Centre, Gosford Hospital.

We are moving toward the on-line spaces more, by necessity and now design and hope you can find some help, information and support there too.

On Sunday 26 July 2020, Beyond Five, where I am a Community Ambassador, is holding a Live Event. 1 p.m. AEST. The link to join in this great initiative is here. It’s one of teaching and sharing….soups and more and is hosted by fellow Ambassador Julie McCrossin AM, featuring these people, including South Australian HNC patient Yvonne McLaren and Founder of The Food Manifesto, to help others with eating issues following HNC and those with swallowing challenges. Check this out:

 

Why July is a strong memory for me.

July IS Head and Neck Cancer Awareness Month.

I did not know that nor anything about head and neck cancer till my diagnosis in May 2017. My memories are S T R O N G each July as it reminds me of what happened inside my mouth, outside on my leg and then more.

Just to recap…I share my memories of going into surgery. 6th July 2017.

 

In ICU: where I stayed for 3 nights after surgery on 6 July 2017.

  • July is my “big month” of memories….of going into Chris O’Brien Lifehouse at 6.00 a.m. on Thursday 6.7.2017 with my husband and then having been checked & readied for surgery & meeting the wonderful anaesthetist Murray who reassured Bernard he would be in contact with him throughout the long day ahead….I got to say goodbye and was eventually wheeled to theatreS!
  • Oh, your surgery I was told, requires 2 theatres because there is a team of around 24 for your very complex & long surgery. Close to 7.30 a.m. by the time I got inside..but wait, there is more..
  • Whilst getting my mind around that, and the fact that when I woke (fingers 🤞) I would have had half of my mouth removed….I recall one of the team, actually I think it was Murray bringing in the corrected surgical procedure (originally it was to be remove fibula and skin/flesh from left, but blood supply was found after CT to be better in right) for me to sign. ✔️
  • Murray & his assistant were incredibly busy readying my body for the big surgery by placing monitors and more on me and tapping into 3 parts of me to lay tubes (I don’t know the terms) in left ankle, left & right arms/hands. Why? I had to ask. “Well, Denyse, is one spot fails or we need to move to another, we are ready, we don’t have to muck around in theatre”…

Now, I have but one memory to recall….as I was wheeled into theatre, I glanced to the left where there were teams of people dressed in scrubs & I admit I was searching for a familiar face….and there he was, my prosthodontist from Westmead, looked up and across at me. This man was the one who would, as the day progressed, use all his measurements and findings from my visits in May to “take my fibula after removal” and add abutments to it and ready it for placement inside my mouth.

Well. The memories ended for me.

  • I am told my surgery needed that many people because one team was the one operation on my right leg to harvest the bone, skin and flesh to go inside my mouth.
  • My professor led the team working inside my mouth, and entering the neck area for adding the blood supply from my leg’s flesh into my mouth to form the roof of it. All of my upper mouth was removed…even the last of my natural teeth up there…all 3!
  • There were samples from my neck taken and sent to pathology during the surgery. All were OK so “only” surgery was within mouth and under the lip.
  • My husband told me he was contacted as promised through the day. The day that saw my surgeons and team work for 11 hours to give me the best chance possible to eat, drink, smile and speak again.

By around 8.30 p.m. I was in I.C.U. as I had been told would happen. My body felt different. My left leg was in something that kept moving to ensure circulation & my right was Ok but encased in bandages and drains were coming from large wound area where skin had been harvested. I had an oxygen mask on, a nasogastric tube was inserted and I was pretty sore but not in huge amounts of pain. I barely used the pain pump and by the next day they said, we will take it away. Fine. However, I remained tired. But very pleased to NOT have a tracheostomy ( told it might happen) and could utter a few words. I also was put on a nebuliser for a long time and had oxygen in my nose. The nurses checked me often for drains & radiographer with a portable X-ray machine came in to see nasogastric tube was in ok.

That was my 6 July 2017.

Blogging my Head and Neck Cancer from diagnosis onwards to help me put in down and to help others too. On my blog- denysewhelan.com.au Here is the link to all the head and neck cancer posts.

July 2018– I was about 6 weeks away from have my upper prosthesis put in. Before then, I had 3 other day surgeries to give my mouth some bulk & ability to have the prosthesis attached to the jaw made from my leg. Those surgeries were Nov 2017, Feb 2018, May 2018. Joining local Central Coast HNC support group.

July 2019– Going well. Regular check ups have been good & there is no cancer…found anywhere. May 2019 check. Helping raise awareness of Head & Neck Cancer as an Ambassador for Beyond Five.

July 2020– Continuing to do well. Before Covid restrictions I saw my Prosthodontist in February who said my prosthesis care is excellent and saw my head and neck cancer surgeon in March who said “see you in 6 months”…with a CT scan beforehand to ensure all OK…still.

This is why July means a lot to me…and I share the story of my HNC because it might be rare but there is a need to notice symptoms of HNC and the onus can often be on us, the patient. Beyond Five’s regular updates and professionally reviewed and verified information is my go-to site and that is why I recommend it and work as a volunteer.

 

From Beyond Five’s Website.

“Who Are We?”

There are many people who are part of the organisation called Beyond Five. Professionals in the field are prevalent. The professor I refer to as ‘my surgeon’ is the chairman and one of the founders. With Professor Jonathan Clark AM.

Nadia Rosin. A communications and project management professional with over 20 years of experience in health promotion. Since 2016 I have had the privilege of working with a passionate team of Head and Neck Cancer clinicians, patients, family members and carers to launch Beyond Five, the first Australian not-for-profit to provide education and support to people affected by Head and Neck Cancer.

Experienced in strategic planning and communications, stakeholder engagement, fundraising, project and operational management. I am passionate about collaborating with key stakeholders to provide evidence-based information and support to patients, carers and health care professionals, raising awareness of Head and Neck Cancer in Australia and advocating for Head and Neck Cancer to form part of the public sector funding and health policy agenda.

Julie McCrossin is a broadcaster and journalist. In 2013 she was treated for oropharyngeal cancer and is now one of Australia’s leading head and neck cancer advocates. Julie is Beyond Five’s inaugural Ambassador. Her story was featured here as a Woman of Courage recently.

Denyse Whelan is a retired K-6 NSW School Principal and has also taught English as a Second Language. Denyse was treated in Sydney for squamous cancer in her top gums in 2017 and is passionate about sharing her ‘new normal’ to help others.

Marty Doyle worked for 36 years in the media as a radio announcer and TV presenter and is now a personal and executive coach. In 2004 he was treated in Brisbane for metastatic squamous cell carcinoma with cancer of unknown primary and has been a passionate advocate for head and neck cancer ever since.

Meeting Marty Doyle – at HNC support group.

Mike George had a total laryngectomy in 2017. Mike is well known to the laryngectomy community in Victoria and is passionate about securing Heat and Moisture Exchanger (HME) funding across Australia and educating emergency services and medical professionals about how to resuscitate a laryngectomee in an emergency.

Mike shares his story here.

May you all stay well.

Denyse.

Link Up #198.

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