World Head & Neck Cancer Day 27 July 2017

Hi there!!

Today is Thursday 27 July 2017 and its World Head & Neck Cancer Awareness Day.


Dave is now ten months since his last day of radiotherapy treatment and he is doing absolutely amazing, which I am so pleased to be able to say.

The other weekend we participated in the Hunter Valley Running/Walking Festival which was a first time for both of us entering such an event.  We entered, along with our walking group friends in the 6k walk.  Dave walked the 6ks in 50 minutes and 50 seconds (00:50:50).... he's a legend!!!  I on the other hand did it in 1hr 01 minute and 01 second (01:01:01)!  Here's Dave coming over the finish line with Russell.  Tracey out of our walking group has christened Dave our 'iron man'!

Russell on the left, Dave on the right
Last night we were talking with friends about organising a group and entering to walk the 'Sydney City to Surf' next year to raise awareness and money for Head and Neck Cancer.  We have a year to train for it!  Lets do it!

Dave is eating normally now.  Though still not good with spicy foods and still isn't able to enjoy a glass of wine.  Though he is enjoying a craft beer with strong flavours now and then.

Dave's next follow up with the Radio Oncologist is on the 26th October 2017.  The follow ups are normally every four months however were going to be going away for a well earned holiday and the specialist is away too.  So this time it will be a five monthly check up.

Until our next update, take care of each other xxx 

First Fourth Month Review!

Hi everyone!!

Firstly, Happy Mothers Day to all those lovely mums out there, being it Mothering Sunday here in the Southern Hemisphere!!

Welcome back... its been four months since my last update on our Dave... and the day, to be exact was Monday 16 January 2017!!! That was in fact one of the best days of our lives, when Dave got the all clear from his Radiation Oncologist, after experiencing throat cancer!!

On Thursday, 11 May 2017 Dave had his four monthly follow up with his Oncologist and got the ALL CLEAR again!!! Such fantastic news and such a relief to hear too!!! The Oncologist was extremely happy with Dave's progress.  The endoscope down his throat was nice and clear, still showing a bit of swelling but over time this will go down.  Gaining weight and generally looking really healthy now... wahooo!!!!!

Below is a more detailed capture of how Dave and I have been coping during his recovery... Hopefully this will motivate those still or starting to go through this dreaded disease of throat cancer or other head and neck cancers.

Over the last four months Dave has been getting stronger and stronger as the days go by.  He is eating pretty much everything and anything now, even a steak, which is great to see and getting demanding or should I say requesting some of his favourite foods, i.e., date loaf :-)

date, banana & walnut loaf... homemade :-)
Dave always has to carry a bottle of water with him to help with his dry mouth and to help some foods go down.  Along with keeping him hydrated, like we all should be doing!!  His saliva is returning a little bit each day but nothing to what it was prior to treatment.

Dave unfortunately still isn't able to drink/enjoy a glass of wine yet, as the alcohol just sucks all the moisture out of his mouth, but on a good note he has started to enjoy the taste of beer!!  Mainly craft beers with strong flavour.  Also enjoying a coffee each day too!

Dave has eased back into his work commitments.  Initially working three days a week, taking Thursday and Friday's off.  Then just taking Fridays off and now back five days a week.  Dave's extremely lucky that with his job he is able to work from home several days a week.  This really helps with his well being and tiredness.

Dave has also been easing his way back onto the golf course, initially getting a ride in a cart with one of his playing partners, but he is now strong enough to walk the course again with his push buggy.

Fatigue can sometimes be an issue if Dave does too much, it can then knock him off his feet for a couple of days.  So he still has to be careful in planning his activities.

Prior to Dave's four monthly check-up Dave had several visits to the GP as he's been experiencing an infection in his right ear.  After taking a course of antibiotics and ear drops, which has cleared an outer ear infection, he still feels quite deaf in his right ear.  This hopefully will clear over time. Apparently this can be a late onset side affect from the radiation due to the scarring in his neck affecting the Eustachian tube.

Dave also had a full blood test done.  All were good except his white blood cells were still a bit low, which will affect his ability to fight infections. This is understandable after what Dave's been through, but should get better over time!

Also during the last four months Dave has been having a bit of treatment on his teeth, in part because of what he's been through and also because his teeth were very worn due to acid reflux and from grinding them over the years. The lack of saliva can contribute to tooth decay too.  So to stop / reduce this he had a full set of composite crowns created to protect his teeth.  Our dentist, Andrew at The Happy Tooth was awesome and did a wonderful job.  So Dave now has an even more beautiful smile :-)

I think I mentioned in previous posts that Dave had started snoring and making strange breathing sounds in his sleep since going through all of his treatments!! As I became a light sleeper during Dave's treatment, as I was listening out for him during the nights, this has posed a real problem over the past months for me as I'm waking all hours of the night and having to jump into what I call 'my other bed' upstairs!!

With this happening and the lack of deep sleep or restful sleep, I've been feeling like a walking zombie and it has impacted on my emotional and mental ability to get through each day!! Sleep is so so important!!!! Every time I talked about Dave's experience I just became extremely emotional!!  I just couldn't shut it out and close the door on that chapter of our lives!! I just wasn't feeling my usual bubbly self!!  I've been really struggling since the beginning of the year.  Trying to come to terms with everything, especially negative thoughts if Dave gets sick again!!!  I know one should never think this but you do!! Its only natural.

I've been told what I am going through is very common after running on adrenalin for a year!! Dave is now back to work and getting on with his life and doesn't really want to dwell on what has happened, which I can totally understand.  Me on the other hand have lots of time on my hands to think about things!! Once I am feeling 100% and able to give again I will seek out some part time work to keep me focussed.

So to help with my sleep patterns I have been prescribed a course of Melatonin 3mg caps.  These are helping me to fall asleep straight away instead of my mind working over time and keeping me awake, and to assist in me sleeping throughout the night... I've been taking them for nearly a month now and so far so good!  I do believe that its also helping me with my thought patterns too and overcoming the lowness feelings.

I have also sought help too to get me back on track... my doctor put me in touch with a clinical psychologist and so far she is helping me compartmentalise and put things in to perspective.  All of my life I have been such a positive bubbly, glass half full girl but what I went through with Dave knocked me for six a bit!!  Not that I realised this at the time!  I feel I am getting back on track bit by bit now :-)

I have also taken up golf lessons each Friday morning too with the girls from our walking group.  We have had four lessons to date and so far so good!! I'm surprised that I'm enjoying it and my back is feeling ok, a little twinge now and again but nothing major.  Richard Mercer who is teaching us is wonderfully patient and a great teacher - cheers Richard!

I am also getting back out walking again with the group, though I've been struggling with this as my feet, calves and ankles have been extremely tight and sore!!!  To the degree it stopped me from walking for a while!! I've been seeing a podiatrist to help me out, getting orthotics made, new better fitting walking shoes, appropriate and correct stretching techniques and recently had my first session of deep dry needling on my calves, ankles and feet - 12 needles in total!!! A couple really hurt but most were quite comfortable.  Two more sessions to go!  Fingers crossed this helps a lot.  My turn to fall apart!!!

Day spa treatments, and lots of massages are helping too.  I'd like to say a huge thank you to Karen, an ex work colleague of Dave's, for sending us an amazing day spa voucher.   Both Dave and I utilised it last Sunday.  We both floated home!!

Now things are getting back on track and Dave has had the all clear for the second time we both feel we can get on and plan our lives again, in particular overseas holidays!!  Let the research and planning begin!

Sorry if I waffled on a bit in this update, but I felt that I needed to get my story off my chest too.  For those supporting loved ones out there, please look after yourself too and seek help as well if you need it.

Anxiety, depression and lowness feelings are so common these days so don't feel ashamed about it and don't bottle it up.  Reach out to friends, family or even your Doctor.  You're not alone.

Take care everyone.... don't forget to love yourself too. xxx


Week 15 - Fifteenth Week of Recovery - Post Radiotherapy/Chemotherapy Treatment : D Day for results!!!

Hi There!!!

Week 15 was 'D' Day for the results from Dave's final PET scan!!!! Being three months after Dave's final radiotherapy session.  The nerves were churning and battling away inside!!!

Well I won't hold you in suspense much longer.....


The dietician, speech therapist and radio oncologist were all very, very pleased and impressed with Dave's recovery.  It was such a relief for us both and especially Dave!!!

The PET scan was totally clear of any hot spots :-)  The Radio Oncologist basically said to Dave to go and live his life to the fullest and to not think about anything returning!!! So this is what we intend to do... to the fullest!!!!

Here's the before and after PET scan's.... on the before photos you can see a bright yellow spot on the photo... this was the cancer showing up.
Cross Section - Lymph node - before 
Cross Section - Lymph node - after (all gone!!!)
Cross Section - Tongue - before
Cross Section - Tongue - after (all gone!!!)
Lymph Node - before
Lymph Node - after (all gone!!!!)
Tonge - before
Tongue - after (all gone!!!!) 
We left the hospital and we just hugged and hugged each other in the car park, me in tears of relief and Dave just feeling quite numb still, I think!!!  I just wanted to scream at the top of my voice!!!

To celebrate, Dave fancied a pie from Harry's Cafe De Wheels... so pie, peas and mash with gravy it was after a stroll along the waterfront!!!!  On the way calling our children, Kimberly and Cameron with the most amazing news ever!!! They were so elated for us both.  Then calls and texts to everyone we knew!!! The iphone was running red hot!!!!
Tucking in!!

Freedom!!!
I couldn't hold it in for very long... I had to let it out!!!... we came across a car parked at the side of the road with this sticker 'A Day to Remember'... it was certainly a sign!!!! When I was taking the photo below, there was a queue of traffic near by and a car load full of guys and I heard one say to another "she's taking a picture of that car"!!! So I just screamed out as loud as I could to them.... "My hubby just got the all clear from having cancer!!!".... all the boys cheered really loudly with me and gave us the thumbs up!!!! :-))  Such a great feeling!!!  Dave stood by and had a grin on his face from ear to ear :-))  Probably thinking my wife's mad!!! He'd be right!!!
spotted this on a car... certainly an omen!!




All I can say is my face is aching from smiling and grinning from ear to ear all week!!!! So so happy for my gorgeous hubby!!! I still have tears rolling down my face with relief while typing this final update on our blog!!!!

Thursday Dave was scheduled to have his PEGGY removed :-) After having it inside him for six months he was very much looking forward to getting rid of it!! I struggled a bit to get my head around how they were going to remove it without giving him any anaesthetic and no stitches!!!  How does the food not come out!!!

To prep, the nurse put a numbing gel on the skin around the peg then again after ten minutes.  Dave had to lay flat and do lots of shallow, slow breathing to ensure he didn't tense his muscles.  One nurse pressed down both hands on his tummy and the other did the same with one hand, while yanking the feeding tube out with the other.  I asked if I could video the procedure.  Both nurses looked amazed at my request but were more than happy for me to do this.  They said they had never been asked this before!!


Dave now has a second belly button hole!! 
PEGGY in all its glory


Here's a video of the nurses extracting PEGGY... hope your able to play it as its amazing to watch!


Dave said it didn't hurt when they were pulling it out but afterwards it was very sore and tender.  Instead of going straight home afterwards we relaxed in at the movies in the Gold Class watching La La Land... it was a lovely old fashioned toe tapping musical love story.  Just what I needed :-)

The following couple of days Dave was quite tender so we just relaxed in front of Netflix, watching 'Tyrant' which is very addictive!!

Its hard to believe what we have been through this past year.  Not sure whether I want to reflect on it but its now time to move on and get our lives back to normality or the 'new norm' that people call it.  As going forwards life will be a bit different for Dave in terms of choosing the right kinds of foods to eat due to the lack of saliva and lack of teeth.  Also not sure whether he's going to be able to enjoy an alcoholic drink again either in the future, as he did try a sip of champagne on New Year's Eve and this just totally dried his mouth out... though champagne can be quite drying.  It may be different experience with beer but he hasn't tried one to date.  Dave is enjoying the 0% beer so he may be ok.  We will have to find out one day soon perhaps!

This will be our last blog post for a while now.  I will do a blog update in four months when Dave's had his first follow up.  So until then THANK YOU everyone who has taken the time to read our journey and for all your support, prayers, well wishes etc via our Facebook accounts, emails, chats, texts etc. They have certainly helped and gotten us both through our journey.

A huge THANK YOU to all the radiologists, nurses, doctors and specialists that have looked after Dave, you were all totally amazing.

And THANK YOU also to whoever listened to me up there in the ether and to my Guardian Angels.

From Love Is All You Need...

The best thing to hold on to in life is each other

by Audrey Hepburn

xxx

and from You Are My "Once in a Lifetime" I will always love you by Marci

Our Love Just Gets Better All The Time

When I first fell in love with you, I thought
nothing could be better.  But I have found that
time has given us a richer and deeper love... a love
that comes with a sense of pride and satisfaction.
It's not just the good things we've shared that make
our love what it is, but the rewards we get from navigating the
obstacles in our journey and arriving at a stronger relationship.
My life is so much more than I could have ever imagined
because you are in it... you are the other half
of my heart, my partner in life and my best friend. 

xxx

Love to you all xxx

Week 14 - Fourteenth Week of Recovery - Post Radiotherapy/Chemotherapy Treatment

Hi Everyone!

Dave's continuing to improve twofold which is a great start to the year!!! Continuing to eat and enjoy his meals and getting out onto the golf course again too!! Playing three times so far this year :-)

We said farewell to Jacqui and Murray on the Tuesday, always sad when holidays come to an end.  They headed onto Sydney for a couple of nights before flying back to NZ.

Wednesday afternoon was D day for Dave's final PET scan.  Dave was well rested for it, along with being nice and warm and fasting for six hours prior, which were the instructions provided.  I dropped Dave off at the hospital as he was going to be about three hours.  I then went off to do some shopping, but cause I had a really bad headache decided to find one of those massage places in the mall to get a head, neck & shoulder massage... it was just what I needed, they actually relieved my headache... and as it was so good I decided to get reflexology on my feet too!!!!

On Thursday we farewelled Kimi, Jono and Toby at Sydney airport :-( so sad saying farewell :-(



Hopefully we will see them all again soon in NZ!  So missing our Toby cuddles!!! Was awesome having you all here for Christmas/New Years.... thank you and love you all to the moon and back xxx

Once we said our farewells at the airport we then dropped off the buggy and car seat to our friends Darren & Renee.  Unfortunately we missed Renee, but had a good catch up with Darren and their daughter Jemima and kisses from Jupiter their gorgeous Dalmatian.  Thanks guys for the loan of the car seat and buggy, they were a great help.  Then to cheer me up we went to IKEA for a bit of retail therapy then onto DFO to Lulu Lemon and Lorna Jane as I was in desperate need of fitness clothing!! It helped!!!

The rest of the week was catching up on washing, ironing and cleaning the house!!  With a few walks in each day to get back into the fitness regime.  Also enjoying a delicious dinner out with friends too, thanks so much Tom and Maree xxx

This morning I enjoyed a wonderful 10k walk with two wonderful girlfriends, Sherry and Ros to Worthington's Cellar Door.  Worthington's has become one of my favourites to date having the best of both worlds : coffee and wine in one visit!!  Not that we did any wine tasting today, it was too early in the day!!! Instead enjoying a coffee tasting.  Dave went off and played another 18 holes :-)  Getting better again each time he plays he says :-)

Sherry, Ros and me :-)

Being Sunday we are a bit subdued tonight as we receive the PET scan results tomorrow afternoon from the Radio Oncologist in regards to whether all of Dave's cancer has gone!!  Keeping everything crossed and praying to whoever listens out in the universe tonight.  We are ready, together, to receive whatever news we are handed.

From Love Is All You Need...

A kiss is a lovely trick
designed by nature to
stop words when speech
becomes unnecessary.

by Ingrid Bergman

xx

and from You Are My "Once in a Lifetime" I will Always Love you by Marci

Let's Always Remember How Important Our Relationship Is

Let's always remember to thank each other for the gift of our love.
Some believe love means "happily ever after," but we know that is
the end result of living "one day at a time."
We will experience love and joy, sorrow and pain.
Let's promise to enjoy the good times and step through the tough times,
remembering that our lives have been brought together for a reason,
and that is our spiritual growth.  Let's rejoice in the endless possibilities
to extend ourselves in love and commit to the task.
Let's learn to experience unconditional love
and give thanks for our everlasting bond.

xxx

Till next week with hopefully GREAT news of ALL CLEAR from the Radio Oncologist!!!!

Week 13 - Thirteenth Week of Recovery - Post Radiotherapy/Chemotherapy Treatment

Happy New Year to you all!!!!!

So have you made any New Year's Resolutions??  I/we haven't as I/we don't believe in them.... they always get broken and I don't like to not carry through on things.  Life is a resolution to be kind to yourself and everything in moderation!

Dave continues to do really well, eating, energy levels increasing and still snoring like a trooper!!! Dave received a Garmin golf watch for Christmas, mainly to help him measure distances on the golf course but found it also monitors sleep patterns too.  So each evening Dave is averaging 4-5 hours of deep sleep which is great.  I on the other hand tried it last night and I'm only managing 2 hours of deep sleep... not enough for me!!  Will have to get that sorted!!

We enjoyed a lovely, relaxing New Year's Eve at home. Before dinner enjoying a walk with Toby


Then home for Toby cuddles with his Great Great Uncle Murray and Great Great Aunty Jackie



The lads cooked us a delicious roast pork dinner.  Thanks boys for a delicious meal.  Dave did a tremendous job on the crackling, even enjoying a little bit himself!!! Les, Sherry, Sandie & Pete popped down briefly too for a drink after dinner.  Most of us managed to see in the New Year, watching the Sydney fireworks on the TV, then disappearing off to bed at 12.15pm!! Dave tried a tiny sip of champagne to toast in the new year, however this was horrendous for him as it totally dried out his mouth due to only being able to produce 10% of his saliva.
love this pic of us both... thank Kimi for taking it!
Love this pic of Jax & I too
New Year's Day Dave, Murray and I were up early at 7.00am.  So nice to wake up refreshed on New Years Day, without a hangover!!!!  The boys went to play 18 holes of golf with Les and his brother Pete.  I went walking for an hour with Sherry and her sister Sandie.  Walking through the Bimbadgen vines these grapes just took my eye.  Jono pointed out to me that one of the grapes has an eye... can you spot it too?  Its a little weird looking!!


Jax and I then went to meet the boys on the 18th hole briefly enjoying the smokin & blues band playing at the Vintage.  Great band but thought the sound was a bit loud, too hard to hear each other talk, particularly too for Dave as his hearing is still a little muffled/ringing. Popping in briefly afterwards to see friends.  Then when we got home I'm not sure where Dave got his energy from as he then started pottering around in the garden fixing the watering system, which I had inadvertently put the garden fork through months ago!!! We finally convinced him to come and rest up!

The 2nd January Jax and Murray took off on their second leg of their holiday, enjoying 2 nights in Sydney before they fly back to NZ.  Whereas Dave, Kimi, Jono, Toby and I just blobbed in the media room watching movies... so nice to simply do nothing... well I did manage to get three loads of washing done in between movies!  Later on having a lovely picnic in our park with great friends, enjoying lemongrass and ginger tea with yummy Christmas cake.  Such a nice way to spend a couple of hours.  Then experiencing a delicious Thai take-away from Oishi as none of us wanted to cook!!

On Wednesday this week Dave has his full body PET scan to check to see if all the cancer has gone.  I do hope so!!!!

Some of you keep asking what a PET scan means... its a positron emission temography (PET) scan... its an imaging test that allows the doctor to check for diseases in the body.  The scan uses a special dye that has radioactive glucose tracers.  The tracers are injected into a vein in the arm.  The organs and tissues then absorb the tracer, with cancer cells having a higher uptake of the glucose. The scan measures where the radioactive glucose is concentrated. There are some pictures at the end of our first blog post of what the scan looks like if you missed them. We will get the results on Monday so fingers crossed for then!!!

As we have our Kimi, Jono and Toby with us we are unable to take them to the hospital with us as Dave isn't allowed to be in close proximity with children/babies for 6 hours after the scan.  Dave can be in the same room/house but no Toby cuddles until the next day.

And, Thursday will be a busy day driving to Sydney and back to drop off Jono, Kimi and Master Toby whom fly back to NZ.  There were seven of us then there will be just two!! :-( be strange for a little while.

From Love Is All You Need...

The heart that loves is always young.

Greek proverb

xxx

From You Are My "Once in a Lifetime" I will always love you.... by Marci

I Will Always Love You

Your love is the most important thing in my life.
I know I don't always tell you, but I want to remind you of how I feel. 
When I am with you, the past and the future lose all meaning,
as the "present" with you is truly a gift.
Thank you for all you are to my life... my love,
my companion, my friend.  I will always love you. 

xxx


Till next week.... be kind to yourself, I know I have to be kind to me!!

xxx