Tuesday 25th June 2019

I Am Grateful Today. Cancer Surgery #1.Part 3. 2017.98.

I Am Grateful Today. Cancer Surgery #1. Part 3. 2017.98.

For those of you who have been following my story of having cancer, the surgery for cancer and the recovery, this post is bringing you up to date with my first month at home.

Going home! Are there any better words when you have been in hospital? I do not think so! I spent the whole of the journey back home being very grateful for my discharge from Chris O’Brien Lifehouse and being entrusted into my loving husband’s care. I think I talked all the way home as it had been some time (ok, 10 days!) since I had been outside the walls of the hospital.

The following photos will tell part of my story of gratitude.

However, throughout all of this ‘cancer journey’ the one person I am most grateful to is my husband:

the yin to my yang, the calm to my panic, the voice of reason to the voice of worry, the patient man for the patient who is often less than patient….I dedicate this post to him.

And even though he dislikes the attention, I have told him often enough that without his care, love, compassion, practical skills and commonsense my time becoming accustomed to have cancer and facing the serious surgery would have been much, much harder.

I am very grateful to B:

 

Here I am …within one month even I can see the differences and I know I feel different inside and much more ‘like me’ so I am incredibly grateful for healing time, a good body, great medical and surgical support and my outlook!

Taken on 12 August 2017, 4 weeks after my arrival home from hospital.

I am most grateful for YOUR support and care via your comments, your Facebook updates and those on Instagram. Thank you all!

Denyse.

Joining with Kylie Purtell for I Blog on Tuesdays and Leanne for her link up called Lovin Life on Thursdays.

The gratitude post in photos!

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I Am Grateful Today. Cancer Surgery #1. Part Two. 2017.94.

I Am Grateful Today. Cancer Surgery #1. Part Two. 2017.94.

Two weeks ago I wrote “I Am Grateful Today. Cancer Surgery #1 Part One. Here is the link as it is the ‘back story’ to this post.

Where did those two weeks go? I did say I would write Part Two last week for I Blog on Tuesdays and Loving’ Linky on Thursday but a hiccup called anti-biotic reaction in my gut  s l o w e d  me down!  Add to that a  ‘foggy post-anaesthetic’ brain and needing to rest more, time got away!

Here I go, outlining some of the features I was grateful for during my stay on Level 9 North Room 16 at Chris O’Brien Lifehouse. I arrived on the ward late Sunday afternoon from ICU and the delight at seeing the V.I.E.W. from my bed made the wait worth it!

I was in my private  room from Sunday 9 July until Saturday 15 July – day of discharge.

Warning: I have added a few photos of myself as I was recovering. In some ways this was very helpful for me to see progress. Scroll on by if you would prefer not to look. 

The arrival in a room of my own brought me some independence even though I still needed some initial assistance to get up for the ‘loo. I was grateful, oh so grateful for my relative independence.

I was still on nil by mouth – liquid food via a naso-gastric tube  ( I tolerated it and guess I was grateful because the nutrition, along with the drip feed of fluid was keeping me alive (LOL) …just disliked the feeling on the fluid  tube feed inside me. 

I stayed in a hospital gown because..I was messy…no details but a fair bit of me in the head/neck area was cut into and then stitched back so there were… messy fluids. I was grateful for a warm quick wash in bed and a change of gown daily. It also meant my nice Sussan nighties stayed in the bag until later in the week.

I have mentioned elsewhere that I had some amazing nurses caring for me and I struck up conversations with them all. Often my chats were to ask them about their career choice and how they liked their working lives, and with only one exception all agreed (from young ones to older ones) that this is a vocation for them. I am incredibly grateful to those who choose nursing and who remain dedicated to it as I saw first-hand how rushed off their feet they could be. I often said to them “I hope you have had a meal and a bit of a break today/tonight”.

The night nurse I had 4 nights in a row who clicked with me was Roan and I know I featured him in a post recently  about how we shared a passion for  photography. He was the one who invited me to get up and onto the balcony for sunrise pics. I am so grateful for his genuine care.

As the week progressed I was grateful to see some of the surgeons’ team arrive each day to check on me (and the flap inside my mouth to see it was still ‘lub dubbing’. I was ALWAYS grateful to hear that sound from the doppler! 

I had excellent care from three allied professionals and I am oh so grateful for their advice and help.: the physio who got me into my boot and walking with some trepidation but I eventually could walk unaided. The speech therapist whose job it was on Day 6 post surgery to see if I could speak well (derrr. who was ever going to stop me!) and to drink my first glass of water…as sips! It was GOOD. So grateful for that drink for sure. The dietitian had lots of advice and seemed well-versed in IBS issues and I was grateful for my first day of clear fluids on the 7th day post surgery. But I never wanted to try the soup again after the third time! I tolerated the jelly and the apple juice well. On the last day in hospital I was on smooth soft foods but there was little for me to choose from (that I liked!) but I was grateful to have some mashed potato and some baked tomato – which I had to smash up for it to ‘go down.

Each day brought me something to be grateful for. I was told by every medical professional just how amazingly well I was progressing. I had no measure for this but they obviously did and when I asked the Professor quite cheekily did he think I could go home on the weekend (I hoped Saturday) he said words to the effect ” keeping on going the way you are and I see no reason why not”. How grateful I was that I would be discharged in the minimum time (I was told initially 10-14 days and I went home on day 10!) And check me out with NO more tubes down the nose or up the nose..oh so grateful for that day! 

The person I am also incredibly grateful to is the anaesthetist who put drips and cannulas in 3 different places ( he said to ensure that if one stopped working in the marathon 11 hour surgery, he has a spare to use!). I might bruise easily, and now 3 weeks post-surgery my bruises have gone. They did not hurt me much. I was grateful for relatively little pain in the mouth and just a bit from the leg’s various sites where flesh and bone were harvested. From day two I only ever needed panadol – drip version first, then  liquid version as swallowing too challenging with the swelling inside my mouth.

There are many quiet and lonely times in hospital once evening comes and I was so grateful for my iphone for messages, texts and emails (as well as IG, twitter and FB) and my new Ipad for games, music and more. I also took my art things but the one I did enjoy the most was making mandalas each evening. The meditative effect for me was so for helpful in mitigating missing my husband and home.

I was grateful for the kindness of friends who understood my request for no visitors other than my husband and my daughter. Our son could not make it in. I had many, many well-wishes and some surprises dropped into my room for me. I did feel grateful for this. It is a distraction and a way in which to reinforce how we need to connect with our fellow humans!

 

On Saturday 15 July, after the minor (which led to some not great complications for my gut later at home) infection  was noted in an area of my leg & treated,  my husband arrived…I was already dressed (keen much?) then he had to pack up the bag and more. It was done with ease and I was grateful to leave my room of shelter, health recovery and protection  to be put in a wheelchair and taken to our car.

I am grateful if you have read to the end. It was interesting trying to recall events chronologically and without the photos to help me I would have struggled. This weekend ( as I write) I am feeling less and less foggy-brained and the gut is settling from the nasty antibiotics.

Have you ever had major surgery?

How was your recovery?

What were you grateful for?

Denyse.

3 weeks post-surgery. On our way home from post-op check up.

 

Joining Kylie Purtell for I Blog on Tuesdays here and Leanne at Deep Fried Fruit for Loving’ Life here on Thursday.

 

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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,  and

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 Clark 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 A/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 Clark 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 Clark 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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Try A Little Kindness. 2017.56.

Try A Little Kindness. 2017.56.

I am updating this post for joining Leanne’s Linky here on Thursday 27 July 2017. I have been incredibly grateful for the many acts of kindness that have impacted my life since my cancer diagnosis and subsequent surgery. It makes me really pleased to be part of a world where kindness continues to exist. In hospital all of the staff, with one small exception did all they could within their huge workloads to be kind and in turn I made every attempt to not only show my appreciation in words but to do as much as I could (within the means of my physical restrictions) independently.

The decision to link this older post up was made when I saw my daily Buddha quote. I get these sent to me each morning.

Kindness should become the natural way of life, not the exception.” Buddha.

Denyse.

Original Post Starts Here: 

I listened to a lot of Glen Campbell as a young adult and my husband and I continue to enjoy the oldies but goodies by this man. It is sad that he is very unwell with Alzheimers disease now.

In the spirit of my word of the year

..and letting the whole world know we need more KINDNESS in our lives…right now…here it is. The lyrics and the gentle Glen himself singing it way back.

I will not apologise for the earworm because I think we need to sing it. All together now….

Try A Little Kindness

If you see your brother standing by the road
With a heavy load from the seeds he’s sowed
And if you see your sister falling by the way
Just stop and say, you’re going the wrong way

You got to try a little kindness
Yes show a little kindness
Just shine your light for everyone to see
And if you try a little kindness
Then you’ll overlook the blindness
Of narrow-minded people on the narrow-minded streets

Don’t walk around the down and out
Lend a helping hand instead of doubt
And the kindness that you show every day
Will help someone along their way

You got to try a little kindness
Yes show a little kindness
Just shine your light for everyone to see
And if you try a little kindness
Then you’ll overlook the blindness
Of narrow-minded people on the narrow-minded streets

You got to try a little kindness
Yes show a little kindness
Just shine your light for everyone to see
And if you try a little kindness
Then you’ll overlook the blindness
Of narrow-minded people on the narrow-minded streets

Songwriters: BOBBY AUSTIN, CURT SAPAUGH
© OBO APRA/AMCOS
For non-commercial use only.
Data from: LyricFind

Glen Campbell sings here.

Credit: http://www.bing.com/videos/search?q=Memories64&qft=+Filterui:userpage-memories64&FORM=VQCHNL

I do hope that you find a way to show a little kindness today and forever.

Denyse.

Joining Kylie Purtell and friends who blog on Tuesdays here. Thanks for link up Kylie!

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