Wednesday 28th June 2017

My Cancer Journey Begins. 2017.75.

My Cancer Journey Begins. 2017.75.

A while back I decided that to best describe the life stage we were at was to use the word ‘journey.’ For some people and their reasons, journey is not liked. I happen to like it and will be using it for what is now being added to this life stage!

Thank you to the many people who commented here last week and on Facebook when I made my news public. Sharing has helped me!

Whilst I do not intend to blog every week about the cancer that is here within…I will for now as it helps me!

The cancer journey continued with a trip to Westmead Oral Health on Wednesday 24 May for a consultation, examination and measurement session with the Dental specialist who will be part of the surgical team when I get my cancer cut out. I admit I was stressed. I still am. It is such an unknown and my mind needs to be more calmed. However, as my GP said when I saw him after this big session on the Friday “Denyse, you are doing very well indeed!”. Today we are back to Westmead for a follow-up with the Dental Specialist and scans on my neck and head to ascertain all is well for the major surgery and on my leg where the bone and skin will be taken for the reconstruction and skin graft.

Sigh.

Still mentally criticising myself for the meltdowns, the tears in front of the professionals and more….yet it is a situation of such immense emotions and I was already struggling somewhat. I am still going about my days at home with as much normality as possible.

In the meantime, I am making art, taking photos, blogging, chatting on-line, reading, walking, tending the garden and talking to my lovely husband and being mindful to eat as well as I can even with my sensitive gut.

On Thursday I made a trip to Budgewoi to take some photos and these help remind me of the journey and that it is, like everything in life, one step at a time.

I am not sure as I am writing this when  I will be making the journey across this bridge again on the way to Chris O’Brien’s Lifehouse. I shall update.

Thank you for reading thus far! I am encouraged along the way via the comments and support.

Denyse.

Joining Kylie Purtell, celebrating her blog’s 8th Birthday, here and with my friends who also Blog on Tuesdays.

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I Have Cancer. 2017.72.

I Have Cancer. 2017.72.

Some news I need to share and it’s not great. I have cancer. I remember people telling me I had a nice smile.

It’s bye-bye smile for a while

My dentist has been treating me for some small overgrowth of the front top  teeth since January 2017.  It has grown. More than ever.

Over time it was my choice to eradicate the gum overgrowth by having  my front 6 teeth and  bridge removed, replaced by a temporary denture,  in the hope was the gums which were irritated would settle. Some 5 weeks later they had not. When I saw him on Thursday 11 May, we agreed I needed a biopsy of the gums. Fortunately the oral surgeon, next door, could fit me in the next day. I also had CT scans and x-rays of my mouth as my GP was getting concerned. The CT scans and X-rays were fine.

On Friday 12th May I had a biopsy and  the good news from the pathology on the following Monday 15th May was unfortunately premature as on Wednesday  17th May I was called by the oral surgeon to say that the top gums where the overgrowth lies are cancerous with squamous cancer cells.

To say it was a shock was an understatement and I am still a little bit that way. I was alone at home but after a quick phone call to my husband counselling at Lifeline meant  he was home within the hour.

The oral surgeon was fantastic because she rushed a referral to the Lifehouse in Sydney, where the specialist head and neck clinic is, and that afternoon the practice manager rang to say I could see Associate Professor  Aradalan Ebrahimi at 3 p.m. in Sydney Thursday 18th May at the Chris O’Brien Lifehouse in Camperdown Sydney. My original referral was for Professor  Jonathan Clarke but as the two doctors work together I was fine with that.

http://ad009cdnb.archdaily.net/wp-content/uploads/2014/10/54406d61c07a801fe7000441_chris-o-brien-lifehouse-hdr-rice-daubney_image1_brettboardman-530×353.jpg

 

It might sound weird but I have had huge issues with worrying about travelling distances in the car on the M1  because of IBS. I was stressed anyway, let alone having IBS come along at any time. But, with some kind words from our local and new GP about ‘take the valium, take the immodium, you will be ok’ I was. My lovely husband drove and stopped at any toilet where we could find one. I was one nervous lady. We got to Sydney (haven’t been for over 2 years!) within 2 hours, found a park under the Lifehouse…and waited only 10 minutes. We left home at 12.30 pm and were back by 7.30 pm. That day the Motorway played nice. Thanks M1. Back to the story. 

A/Prof Ebrahimi was incredibly kind and professional and we are all on first name terms. Mind you he is around our daughter’s age. I had a full exam of the mouth, a light on a cable went down through the nose to my throat and I had a  physical examination of the neck and lymph glands. It is hoped that the cancer is all in the one place. The top gums at the front and there is some spread inside my top lip. Sigh.

As he started to explain what would be involved in the 10-12 hours surgery,  in my mouth where they will take the tissue out and  surrounding areas. I became more and more overwhelmed. There was this too: they will be replacing the inner part of my palate, my jaw at the top and gums with skin/muscle tissue and bone from my left leg. The bone will have implants put in for future teeth to be added. As  I was told that I had quite a melt down at the thought of the hours ‘under the anaesthetic’ most of all…and that is meant this was a BIG operation.

The associate Professor kindly gave me a few minutes to go for a little walk with my husband and check out the view from the building’s windows overlooking Sydney Uni, then I was calmed with the help of a half valium before moving on to the details of the surgery itself. By this stage, his ‘boss’, Professor Jonathan Clarke came in and together they came up with more details of the plan for the operation.

Mouth (oral cavity) My Cancer area. 

The mouth includes the lips, gums and tongue. The tongue is the largest organ in the mouth and is made of muscular tissue.
The roof of the mouth is formed by the hard palate. Behind the hard palate is the soft palate, which is an arch of muscle behind the hard palate, going into the throat. The soft palate lifts to close off the passageways to the nose so food does not go through the nose on swallowing.  Source:Lifehouse.

 

Prof Jonathan Clarke. http://www.mylifehouse.org.au/wp-content/uploads/2016/04/Jonathan-Clark-e1461566255963.png

However, the thoughts are as of now – before I have further CT scans to rule out anything unseen by my previous clear CT of my sinuses – that there is no spread but that recovery from this will mean 10-14 days in hospital. I will have ‘two’ areas in my body to recover from: my left leg and my mouth. I may be in intensive care for a while too.

About the Head and Neck Service

The Head and Neck Service at Chris O’Brien Lifehouse brings together over 40 highly skilled medical and allied health professionals including surgeons, radiation and medical oncologists, dental specialists, speech therapists, specialist nurses and dieticians, along with research scientists and data managers.
The Service has a national and international reputation for excellence. More than 450 new patients (200 with cancer) are seen annually and the computerised database of the department is the largest in Australasia.
The Sydney Head and Neck Cancer Institute (SHNCI), founded in 2002 by the late Professor Christopher O’Brien AO to provide comprehensive, state-of-the-art treatment to patients with cancers and diseases of the head and neck, is also an important part of the Head and Neck Service providing funding for two head and neck clinical fellows each year. Source: Lifehouse

After telling our close family, I reached out to share my news with some lovely on-line and IRL friends. Their support was amazing. Now I am making it public here, on Facebook and Twitter because I need the love and support to surround me as I go into something I had not predicted. Ever. Yet, so many of us affected by cancer. I have not once thought ‘why me?’ more like ‘why not me?’

I have the best people in the profession looking after me at the Lifehouse in the Head and Neck Clinic started by the wonderful, but late, Professor Dr Chris O’Brien. He became one of the ‘stars’ of the TV  show RPA (Royal Prince Alfred Hospital).  The Lifehouse built in his name is part of RPA and accepts both public and private patients. I am being treated as a private patient. Professor Clarke  was trained by Chris O’Brien in this speciality of Head and  Neck Surgery. Chris O Brien’s vision was that he always wanted cancer patients to be in one place and this is it.

Professor Dr Chris O’Brien. http://www.bing.com/images/search?view=detailV2&ccid=zJK%2btLzW&id=BC8CED97E14A6AD24D66DE0C67BD5E7B467E25AB&thid=OIP.zJK-tLzW3gePAyHJjObiDAEnEs&q=lifehouse+chris+o%27brien&simid=608053618380309990&selectedIndex=21&ajaxhist=0

 

My operation will be there, I stay there and have my tests and any follow-treatment there too. Mind you  we don’t live in Sydney anymore and  it’s 2 hours from here but that is the price we pay for living in regional NSW.

Tomorrow we will travel to Westmead (Sydney) Dental Clinic where the specialist in oral reconstruction will examine my mouth for the first time to come up with a ‘template’ for reconstruction. I will have a further visit to him for a final measurement, and a big series of CT scans prior to the team involved in my surgery coming together and then sending the details overseas where a software program will plan my surgery. Apparently there will be two teams working in conjunction  with me. No, we haven’t asked for a quote (yet) but we do have top private health insurance and we have asked for a discount where possible as we are on a relatively low income as part-pensioners.

All good vibes, thoughts, prayers and wishes are accepted with appreciation!

Thank you.

Denyse.

Joining with my friends who blog on Tuesday here with Kylie Purtell.

Already lots of  love comes from here…the Lovin’ Life linky with Leanne and friends.

 

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Service to Others. 366/66.

Service to Others. 366/66.

When you have worked for much or all of your life and you slow down to retire then you find there is ‘time on your hands’.

My husband is not someone who likes to remain inactive, despite his own physical health challenges, so he started as a volunteer this week with the Cancer Council.

He is part of team of volunteers who provide a service to take patients from around the Central Coast area to their cancer treatments.

Friday was his first shift. The hospital treatment centre was not far from our place, so once the person he transported was there, he popped home to show me what is known as ‘the Shirley Shuttle’ vehicle. He will be on a shift once a fortnight.

The Shirley Shuttle consists of a series of vehicles  to take people to Oncology Treatment in conjuction with the Cancer Transport Action Group including the Cancer Council NSW and Central Coast Local Health District.

More about the Shirley Shuttle:from a 2013 article:

The Shirley Shuttle service began with the donation of a mini-bus to the Cancer Council by Ms Galvin after her mother Shirley died of cancer in 2006.

She continues to raise funds and now two Shirley Shuttles provide transport for cancer patients to attend treatment centres and appointments.

This service is supported by Gosford and Wyong Community Transport, with volunteer drivers trained and provided by Cancer Council NSW, Erina.

Clients are able to negotiate a reasonable fare for the service, depending on their resources.

 

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Thanks to all those who are of service to others as volunteers.

Denyse.

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Joining with Leanne’s link on Sundays over here at Deep Fried Fruit.

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