End of Week 2

Hi there, me again :-) .... here's more low down on our Davey boy.... 

We are two weeks down, now only five weeks of treatment to go!!! The weeks, thankfully seem to be flying by!!! Even Dave says so too, which is good that they are not dragging by for him!

Dave now seems to have the nausea under control at last, with the new regime of nausea medication. Hopefully now the new nausea meds are working the next round of chemo won't be so bad!! Keeping everything crossed!! We have one more week before the next round of chemo... they say this is supposed to be the week you feel your best before the next hit!!!

Meds now taking are:

• Nausicalm tabs 50mg (cyclizine) - 1 (am - on waking) & 1 (pm)
• Ondansetron Wafer (Zofran Zydis) 8mg x 1 (am - on waking)

We've been in and out each day for radiotherapy and met with the radio oncologist's registrar who was lovely and very helpful in suggesting various types of mouth sprays, gels etc to sooth the inside of Dave's mouth and gums.

As the radiotherapy treatment has started to take effect and the side affects of dry mouth, less saliva and ulcers are now kicking in, Dave has started using the following:

• Biotene dry mouth - mouthwash 
• Biotene moisturising mouth spray for dry mouth relief 
• Biotene oral balance dry mouth moisturising gel 

Also if his mouth gets really sore, and he can still swallow and eat, he can rinse with Mucosoothe 30 minutes prior to eating to numb the mouth so it doesn't hurt.

• mucosoothe - topical anaesthesia of the mouth and upper gastrointestinal track - oral gel 2% lignocaine

Plus making our own mouthwash:

• 1/2 tsp salt mixed with 200mls warm water; or

• 1 tsp sodium bicarbonate with 200mls warm water

Plus Bonjela mouth ulcer gel.

We also met with the Nutritionist again too who gave us more literature about best food options etc. Basically soft foods with lots of sauce.

Dave is also starting to use the Braun Oral-B Professional Care dental water jet Oxyjet unit that our friend Angus has kindly lent to us.  Angus found this extremely helpful when he went through this awful process three years ago!!! Thanks so much Angus for your support and advice, you have been invaluable xxx

Blurb from the product literature: The Oral-B Professional Care OxyJet uses the Oxyjet technology that enriches water with microfine bubbles or purified air for deep cleaning under the gum line, in order to help improve gum health.  Oxyjet also removes bacteria at the gum line and below, while gently removing the food particles from the hardest-to-reach areas.  The Oxyjet helps to protect the gums and is designed to enhance mouth freshness and clean health.  Oxyssurized air and water form microfine bubbles to attack plaque bacteria. The Spiral Water Streams with micro-bubbles gently massage the gums. It is possible to control the pressure of water from 1 (low pressure) to 5 (high pressure), according to your health.  OxyJet has a large 600ml water beaker. You can add a mouthwash product for better health.

The hospital where we visit each day has this beautiful enclosed garden to view through the glass... its full of dinosaurs and an active volcano... so cool to look at, each time I check it out I see something different.  Also each time I view it I think of how my gorgeous godsons, Samuel and Charlie would love it too!!

We've had a lovely relaxing weekend with no appointments again... its so nice not to have to get the car out and go anywhere!! Lazy mornings in PJs too :-) 

Saturday was a very emotional day for us both!!!! It was a year in the planning that on this day we would fly out to Rome, Italy to surprise our Uncle Murray and Jax for a four week tour around Southern Italy for Muzza's 60th Birthday!!! Jax broke the sad news to Muzza at Dubai airport that we were supposed to be enjoying their adventures with them!!  Muzza's response was... 

F**k! F**k! F**k! F**k! Please excuse my "Italian"!!!! Jax has just given me my surprise destination and the fact that you two lovely people were supposed to be in on it too!! What a bugger! Still Davey boy, better to get yourself right so we can have another major blowout sooner or later!! 

There will be lots more wonderful holidays and experiences together to be had as soon as Dave is fit and healthy again. 

On an EXCITING note.... we became GRANDPARENTS on Saturday night :-) Wahoooo!!!! Our first grandchild!!!! Our daughter Kimi gave birth to a gorgeous boy, 8lbs 9ozs at 4.50pm NZ time.  Kimi had an all natural birth at home... she is amazing!!! Name to be announced in the near future.  This is a photo I took off my phone when we FaceTimed last night... he is so gorgeous, but then I'm biased!!!  Dave and I are so so happy for Kimi and her amazing partner Jono.  Love you guys so much!! xxx 

Dave managed a couple of small walks over the weekend, which was good for him to get some exercise and some sun/warmth, vitamin D, on his body.  Dave also enjoyed a relaxing epsom salts bath for the first time in ages and a couple of foot massages with essential oils: Frankincense, Lavender, Peppermint, Onguard mixed together with fractionated coconut oil.  You can feel the love eh!!!!

I had a wonderful massage from our dearest darling friend Yvie... my back & neck were so tight and knotted, the worst they have ever been!!!! Thank you so much darling beautiful Yvie xxx  Love you heaps!!! 

'Love and compassion are necessities, not luxuries.

Without them humanity cannot survive.'... Dalai Lama

I'm so looking forward to this coming Thursday when my gorgeous, darling girlfriend Annie arrives... I expect there will be lots of tears on arrival!!!

Hope you all have a great week.

Chat again soon xxx 

Two Days in to Week 2 - Nausea Issues & hopefully a resolution!

So far week two hasn't been too bad, however unfortunately Dave still has constant waves of nausea, mainly in the mornings though, from the aftermath of the chemotherapy, even with the smorgasbord of medications!!

I just don't feel this is quite right!!! So this morning I telephoned the chemo ward and spoke to the nurse and pharmacist about my/our concerns.  This was really good as we got an appointment straight away to see the Medical Oncologist today!!! So we headed in for the daily radiotherapy session scheduled at 12.40pm today, then afterwards headed over to chat with the MO and the pharmacist too.

Unfortunately Dave is in the low percentage that is experiencing this constant nausea feeling!!! Trust our Dave to be special!!! Anyhow we have now re-jigged the meds.  It still could be a try it and see what happens experience though!!!

So Dave's now taking :

Prochlorperazine maleate tabs 5mg x 1 and a Nausicalm tabs 50mg (cyclizine) x 1 as soon as Dave wakes up and up to twice more during the day if required.

Then if also needed during the day he can take an Ondansetron Wafer (Zofran Zydis) 8mg x 1, up to twice a day. 

As a last resort, if the above doesn't work, he can also take a Lorazepam tab 1mg at night time. Though this one will really zonk Dave out if he takes this as well as the Prochlorperazine!! MO has recommended we wait at least three days for adding this in if needed.

Fingers crossed that the Prochlorperazine and the Nausicalm works and he only has to take one of each first thing in the morning.

I am also going to book him in for an acupuncture session as this is supposed to help with nausea issues too.  

The other side effect which has kicked in already is hearing difficulties.  Dave said he has a constant ringing (tinnitus) and a muffling feeling in both ears!! Hopefully this will improve after all the treatment.

The weekend was nice and relaxing, it was so nice not have any appointments and be able to sleep and rest - though I didn't rest much on Saturday as I did lots of chores!!

Sunday Dave had cravings for a McDonalds cheese burger so went for a drive to fill the car up with fuel and get a cheeseburger, but then he saw the KFC sign and said I want fries from there first... OK, cool.  Drove in the drive in... then he said instead of a cheese burger I fancy chicken nuggets from KFC... things are looking up I thought!!! He enjoyed them both when we got home... me too!!!

The KFC must have given him a spurt of energy as afterwards he said lets go for a little walk.  :-)  So we went around the block and back in the sun... only a 15 minutes slow stroll, stopping along the way to chat to our neighbours Sherry and Les and admire their new landscaping.  Along with taking photos of our local wildlife!!  Dave was absolutely shattered when we got back home... so ice block and feet up in the media room to watch a movie and rest.

Dave supervising me!!!
I had my orders to scoop the leaves out of the pool :-) 

Actually one thing the MO did suggest was we should maybe look at staying somewhere close by in Newcastle to save not having to drive in and out for a couple of days... this would alleviate Dave from feeling nausea in the car too!!! So going to look into finding some accommodation.  Great suggestion!!

Chat again soon xx 

End of Week 1 of Radio/Chemotherapy

Wow what a week!!!

I feel its been a relatively quick week but at the same time an extremely hard week emotionally!! And a very hard week on Dave physically, mentally and emotionally!!!! 

Dave started his radiotherapy and chemotherapy session on Monday - a double whammy!! 

We arrived at the Mater Hospital by 9.00am.  Dave drove us this morning as he was feeling ok to be in control of the wheel!! Plus its nice for him to have the feeling of being in control at the moment too :-)

On our first day we had to get an access key from the oncology reception so I hopped out to collect our key to get in to the car park.  Going forward we get our own access key, its great that we get free parking too during the next six weeks!! One less thing to have to worry about.  Once inside we checked in and went through the paperwork.  We also found out that because we are travelling over 500km/week for treatment we are able to claim mileage back at the end of Dave's treatment too, which was a nice surprise!

We then met with the Nurse who weighed and took a few of Dave's particulars down.  Then met with Michelle the Oncology Radiotherapist who gave us Dave's scheduled timetable of treatments for the next seven weeks... some appointments are combined with seeing the nurse and radiation oncologist too.  Dave will be reviewed regularly throughout the process.  The scheduled appointment times are all over the place, some very early in the morning, others mid morning and a few around lunchtimes.

Dave was then taken off for his first treatment... I unfortunately was not allowed in but Michelle said I could go in with Dave the next day to watch and take pictures.  Michelle did warn Dave that he could or may not experience a blue light, or a strange smell... others have she said!! Dave said he didn't experience either.

All up it took about 30 minutes for them to re-scan and make sure everything was aligned.  The treatment itself only took 5 - 10 minutes.

While I was waiting I did what I do best and put my PA skills to work by entering all the appointment times into our electronic shared calendar.  I'd only gotten half way through it and Dave re-appeared!!

We then met with Cathy, Dave's dietician.   Cathy talked over all the side effects again with us in regards to the chemotherapy which Dave will be administered later today.  She said that for the next two weeks Dave won't notice much from the radiotherapy.  However four days following chemotherapy she said it will hit Dave... in regards to feeling really tired... she said not to plan a big weekend!!! Not that we were anyhow!!! She said most people just want to curl up in bed and sleep.

Cathy also said that its really important for Dave to eat every 2 hours and to ensure he consumes at least 2 litres of fluid per day - 200mls every hour.

In regards to food his taste buds will start to change and to ramp up the flavour in cooked foods by adding lemon juice to try and cut through the metallic taste.  She also suggested sugar... which I thought was strange as I was on the undertaking that sugar is a killer and the cancer cells feed off sugar!!! I will be using the lemon juice option me thinks!!

Fluids can be in any form, but not alcoholic (will save this for the celebrations when its all over!!).... i.e.,

• Soups
• Flat soft drinks, e.g., ginger ale
• water, ice blocks
• Fruit juices
• 3 large scoops ice cream or 250ml yoghurt
• 1 cup jelly
• sports drinks as they also contain extra salts if not eating very well.

Cathy also said during week three she will talk about providing us with the appropriate food products to administer via the PEG.  We are not allowed to put home cooked food down the PEG as it has to be a special solution that is clinically passed and sterilised.

First session of radiotherapy down.... 34 more to go!!!  We initially thought it was going to be a six week course, but looking at the schedule its a seven week course!!!

We then hopped in the car and drove over to the Newcastle Private Hospital to check in for Dave's first session of Chemotherapy!!

The view from Dave's room... this is the nicest view..
to the right is a huge construction site & crane!!
Not noisy though, thankfully!! 

My bed for the night...
Not sure how I'm going to get into it :-)

Dave's bed for night! It doesn't look very cozy! 

Wisdom is keeping a close watch on us ...
Dave's keeping very positive & loving the attention!! 

A must do selfie!!
it took a few attempts as Dave was being picky!! Or was that me!!

Again they took all of Dave's particulars... weight, blood pressure etc.  All vitals looking good.  Then took blood samples for the Doctor to check and ensure all the relevant bloods were good before treatment started... they were :-)

There's a smorgasbord of medications, fluids etc.... First off they gave Dave a nausea tablet orally - netupitant 300mg combined with Palonosetron 500mg (we later found out Dave was the first patient they had given this to in capsule form at this hospital).  Then slowly administered via IV the following pre-meds...

• 12 mg Dexamethasone - steroid

• 1000 ml normal Saline over 60 minutes

• 10 mls Saline with magnesium

• 200 mls Mannitol 

Warming up Dave's arm to help with inserting the cannula

Dave said that he experienced a slight stinging in the arm while the Mannitol was being administered.

Then the chemotherapy drug :  cISplatin : 100 mg/m2 in 1000 ml sodium chloride 0.9% over 60 minutes.

Dave's nurse Megan taking precautions to avoid her
exposure to the chemo drugs.

The black bag is the chemo, the other five are the pre and post meds, all up 3.5 litres of fluid - plus the fluid Dave is drinking!!!

The pharmacist visited us too to discuss Dave's go home drug pack....

• Dexmethsone tabs 4mg (take 2 tabs for two days following chemo) - steroid.
• Pramin tabs 10mg (nausea & vomiting preventative)

Dave's first lot of chemo done & dusted!!! Initially he was feeling ok but then three hours after it hit him!!! Pow the nausea flowed over him and his heart was racing a bit.  More anti nausea drugs were administered and kicked in not long afterwards.

The only thing so far that is different is that Dave is peeing a reservoir!!!!

I suggested a little stroll around the ward to get his blood flowing and to stretch his legs.  This helped.  I must also remember to bring some small bottles of Dry Ginger Ale next round of chemo, along with some lollies for Dave to suck on.  Dry Ginger Ale helps with nausea.  

I made my bed up for the night, its so great that they allow partners to stay over.  It makes life for us so much easier as we live a distance away.  Plus its great company for Dave and I can make sure he's getting the care he needs. Once sorted we settled in for movie night :-) Dave treated us a little while ago to a portable Apple disk drive so we could watch movies while we were out and about. On the play list so far is the James Bond series... first up Dr No!!  Dave's ex-work colleagues in NZ very kindly sent over the box set of James Bond for us to watch... thanks so much everyone xxx

During the night Dave experienced another bout of extreme nausea feelings so they gave him a different type of anti nausea drug which seemed to help.  Both of us had a broken nights sleep, as you can imagine!!

The morning was uneventful as Dave was really uncomfortable with nausea and pains in his tummy, so he lay in bed all morning to rest up.  Plus he was zonked out on one of the pills.  It was good for him to sleep it off.

He's been prescribed lots more different drugs to help overcome with the consistent feeling of nausea... all up we now have six types of drugs.... and all very confusing!!!! What to take and when... and setting up a system to know when etc....

• Dexmethsone tab 4mg - take 2 tabs in the morning immediately after food for two days following chemo.

• Olanzapine tab 10mg - take 1 tab day for 4 days only in the evening, starting day of chemo

• Pramin tab 10mg - take 1 to 2 tabs every 4 to 6 hours

• Ondansetron Waf 8mg (yet to get script)  - place 1 wafer on teh tongue twice a day when required.

• Prochlorperazine Maleate tab 5mg - take 1 tab 3 times a day when required.

• Lorazepam tab 1mg - take 1 tab day when required.

The Dexmethsone is a must to take.   Then the order we were advised was to take Pramin first, then if this doesn't work take the Prochlorperazine Maleate then the Lorazepam.  Then the Olanzapine at night.

We could open up our own pharmacy!!!

We finally left the chemo ward around 2.45pm to head over to the radiotherapy unit at the Mater Hospital for Dave's second radiation therapy session at 3.10pm.  While waiting to go through I took a call from the Chemo Nurse advising us not to take the Pramin tabs for the next 5 days as they could contradict with the Olanzapine tabs that were prescribed!  Ok noted.   Removed from list of meds to take for the time being!

We then got called through to the PHOENIX bunker room for Dave's treatment. Prior to this though we had to wait a little while as Dave got a bad bout of the hiccups!!! He managed to get them under control just in time!!  I was allowed to go in with him today to watch them set him up and then watch behind the scenes at them meticulously lining him up.   They were so precise which is good to know.  He's in great hands.

not feeling the best after his first chemo session :-(

I got a bit overwhelmed at this point, it finally hit me!!! So hard watching the one you love have to go through all of this!!!  I had to fight away the tears!!! Once the machine was all set up the treatment only took 5 minutes! Dave got dressed then off to reception to sign out and on our way home :-)

While driving home we missed another call from the pharmacist advising us to drop another medication off the list due to possible interactions with the Olanzapine.  The one to cross off was Prochlorperazine Maleate.  When we got home I telephoned the ward to confirm this and ensure we were all on the right page of what to take and what not to take!!!  Confirmed and on to it!!  I must admit I was pretty hacked off to say the least that we had to go through the stress of organising the post meds/ I would have thought they would have all this sorted and knew which would work and which would not!!! I will certainly be having words with the medical oncologist at the next round of chemo treatment.

We had a very quiet night, our wonderful neighbour Ros bought over chilli con carne for our dinner which was so delicious... along with fresh chopped up strawberries and cream.  Thanks so much Ros we are truly blessed to have you in our circle of friends and for you to live so close by.

Our other close friends Cathy and Pete popped in to as they picked up some dry ginger ale for Dave as this also helps to settle upset tummies.  Thanks so much guys it was great to see you and briefly catch up for a chat.  Then Yvie our girlfriend dropped off the beef bones I had ordered from the butchers to make a bone broth.  

The rest of the week was just as tough!!! Dave kept experiencing constant onsets of nausea and extreme tiredness... so has slept most of it on and off, except for when he had to go in for radiotherapy treatment each day.  

Wednesday was a bad day for me!!! I got up early to go to the supermarket to stock up on things that Dave likes and do our regular shop, also picked up more drugs from the chemist for Dave.  Got home unpacked and got the beef bones ready in the crock pot.  Then had to dash off for Dave's third radiotherapy session, running slightly late but we got there on time... so hope I didn't get any speeding tickets on the way!! Treatment done and on our way home again... by this time I had a headache from hell... so took some panadol and slept on the couch while Dave went back to bed. 

While sleeping I got woken by an almighty bang/explosion!!! I dived off the couch in such a fright not knowing what the hell the noise was!!! Initially I thought it was the crock pot with the beef bones that had exploded but it wasn't, thank god... as that would've been a hell of a mess to clean up!!!  Then looked and noticed that our wine fridge glass door had totally shattered - the glass was cracked from top to bottom... thankfully the glass hadn't fallen out!! I had no idea what to do plus my head was pounding!!! I made a few phone calls to male friends that were close by and thankfully our neighbour Anthony was home so he popped around to help me. Dave was totally unaware of what was going on ... and in no fit state to help.  Anyhow Anthony knew exactly what to do and that was to put masking tape on the inside of the door to keep it in place.  Luckily we had lots of masking tape from all our relocations!!! Thanks Anthony you were a life saver to a damsel in distress!  I then phoned Delonghi to advise them what had happened and they said they had never heard of this but will follow it up with management.  I sent all the relevant particulars through to them, including pics. So waiting to hear back from them now.

Thursday Dave had a chat with the radiotherapy specialist, Dr Wratten... he checked in his mouth and just had a general catch up.  He said Dave should start to feel a bit more awake next week.  I do hope so.  Treatment session done and home again. 

Friday was the worst day for Dave as he really struggled getting ready in time to leave for his treatment in the morning.  He'd had a shower but then felt really sick again so lay down and had a wee nap.  I telephoned the radiotherapy unit to say that we were going to be late and they said not to worry just turn up when we can get there.  They are so accommodating which is great.

Its been really great to have the weekend off and not have to go anywhere for treatments etc.  Alarm clocks off and sleep for the both of us :-) 

Next week we have to be careful that Dave doesn't get sick as his immune system will be low from the chemotherapy.  

On a good note my girlfriend, Annie, who is more like a sister to me has confirmed her flights to come over from NZ to support us both for a few days. I soooooo can't wait to see her for a hug.  She arrives on Thursday 1st September till Monday 5th September.  Twelve more sleeps and counting!!! 

Then on the 8th September our son, Cameron is flying over from NZ for a couple of weeks which we are so looking forward to too.  

We are also counting down the days till our first grandchild is born - our daughter Kimberly and her partner Jono are expecting their first child.  Unfortunately they are in NZ so won't be able to see them for a little while.  Hopefully they will be able to fly over to see us at Christmas time.  Can't wait to find out what they are having so I can go shopping!! 

So one week down... six more to go!!!

Thanks again for all your messages of support and those of you sending texts checking in on us... keep them all coming as they are what is keeping us going! 

Till next week... hoping it will be a better week for Dave.  Hope you all have a great week and remember to tell those close to you that you love them.  xxx 

Calm before the Storm!!

Hi there again!!  Just touching base before the storm rolls in!!!

A friend of ours, Gillian, well our cousin in fact recently said...

'we have steep hills to climb... but the view at the top will be magical'. 

So true and such a lovely analogy :-) 

First up, Dave wanted you all to know that he has updated the original blog "Initial Findings & Diagnosis" with sample images of his PET scans.  If you know Dave.. you can now say you know him on the inside too!!

Since our last post we have been trying to stay fit and healthy, and not catch any bugs that have been doing the rounds.  So far so good!!  Though we did go to the Doctors as Dave was feeling a bit uncomfortable in his mouth and felt that he had a bit of an infection going on... the Dr said there was a slight infection so prescribed him with some antibiotics.  So far the ABs have really helped and Dave is now feeling much healthier in his mouth.

We've been out walking for an hour everyday in the fresh air... with my walking group on Saturday, Monday and Wednesdays too... its always great to catch up with the group as they are all so positive and great to be around.

It was great to catch up with Deanna & Steve again too... Deanna treated us to her delicious homemade scones, lemon butter, cream and jam... naughty I know but totally scrumptious.

I have also been creating lots of yummy green juices to try and get lots of good nutrients into us both along with making lots of delicious healthy high protein/vegetable meals.

We have also been back to our dentist and had moulds made of our teeth for mouth splints to be created.  Our next visit is in two weeks time.

We had a great chat too with my naturopath in Sydney, Elizabeth Cowley. I've had sessions with  Elizabeth in the past and found what Elizabeth has done for me has really helped.  So thought she would be great to help support Dave through his journey too.  Initially Elizabeth advised us to go and buy a really good protein powder, the one she finds most benefit from is Nuzest - clean lean protein... its comes in different flavours, so we bought the natural and chocolate ones.  The other advise was to buy a liver support supplement, the one she recommended was Legalon by Flordis, so have ordered this off our local pharmacists as no one had it stocked in our region.

We are also mentally preparing ourselves too!!

Dave's treatment starts this coming Monday, 15th August 2016.  First up we have to be a the Mater Hospital at 9.00am for Dave's first Radiotherapy treatment.  Once this has been administered we then have to drive over to Newcastle Private Hospital to check in for Dave's Chemotherapy session.  The chemo will be administered intravenously overnight.  As Dave will be in his own private room I am also able to stay with him too, to keep him company.  The team have reserved me a put me up bed so we can have a sleep over and PJ party together!!!

Thank you once again to everyone for all your messages of support, prayers, positive vibes, those of you who have made frozen meals for us and the wonderful gifts from Dave's ex work colleagues/team/friends in NZ.

Our next update will be after Week 1 of Dave's treatment.

Love n Hugs to you all.....

Quote of the day from my Love is All you Need book is...

'True love stories never have endings'...

by Richard Bach

Dave's Chemotherapy & Radiation Preparation...

Tuesday 26 July 2016

Good Morning and Happy Birthday to me!!! 

I had a full on experiential Birthday!!! We always do experiences for our Birthdays... not presents & this was no different!!!

I started by cooking a very healthy brekky for Dave & I this morning as he was nil by mouth from 11am ahead of his scans, so wanted to ensure he had the right start to the day and to keep him going for a while.  Four egg omelette filled with broccoli, red pepper, courgette, spring onion and grated cheese with a toasted crumpet.  Totally delicious!

We then popped in for a hug & to say farewell to Shannon & Brian as they are off overseas for a while, on their long awaited honeymoon!! Going to miss them so much!!! Lots of face time happening ahead!! 

Then had to whisk Dave off to meet his medical oncologist Dr Mallesar for an 11:45am appointment at Newcastle Private Hospital to discuss his chemotherapy treatment.  The meeting went well and we both had a good vibe about the Dr.  

Dr Mallesar has recommended Cisplatin (cis-plat-tin), to be administered by a drip via Dave's vein.  Each session will take 4 hours.  Dr Mallesar also suggested to administer this as an overnight patient so Dave can be monitored and be administered IV fluids prior, during and after as this type of chemo can be harmful to the kidneys if fluids are not kept up!

We were also advised about all the possible side effects of the chemo:

Immediate (onset hours to days)

• Nausea & vomiting
• Changes in Sense of Smell and Taste

Early (onset days to weeks)

• Increased risk of infection
• Low platelets and increased risk of bleeding
• Sore mouth
• Diarrhoea
• Loss of appetite
• Feeling tired
• Numbness and tingling in fingers and toes
• Impaired kidney function

Late (onset weeks to months)

• Low red blood cell count
• Hair thinning

Each person is different, some experience a few, others all and so forth!

The chemo will also be administered every three weeks.  Up to 3 times instead of a weekly dose.  Reports indicate that having chemo every three weeks with a high dose is more beneficial than having it at a lower dose weekly.

Dave's blood will be constantly monitored during this treatment to ensure that his blood count has returned to normal.  

We are also to monitor Dave's temperature closely as if his temperature rises above 37, he feels unwell, develops chills, shivers or shakes and feel short of breath we have to immediately take him into hospital so he can be checked out and possibly be provided with antibiotics to treat the infection.  

We were advised to stay away from crowds and sick people and that Dave will be most at risk of getting an infection 10 to 14 days after treatment.

After meeting with Dr Mallesar we had to dash over to the Mater Hospital which is about a 10 minute drive as Dave had a CT scan scheduled.  This CT scan session was to also have Dave's radiotherapy mask made and measured up.  You have to wear a mask to ensure your head stays extremely still and the treatment is as accurate as possible.

First up though was for Dave to get a cannula inserted into his arm, he had been fasting since before 11am and was dehydrated so they couldn't find a suitable vein to put this in his hand. We were then taken through to the area where the CT scan and mask fitting will be performed. I asked if I could watch and take photos as I said I was writing this blog.  The team were very accommodating of this.  

This is how the mask starts off, a solid piece of plastic

The above photo is how the mask starts off.  Its a very special type of plastic which is put into a warm water tank to soften it. While this is being cooked they mould a neck piece so Dave will feel comfortable each time he has his treatment.  The below is a soft squiggy bag, a bit like a hot wheaty pack... it gets sprayed with a solution, can't remember what, might even have just been water...  then moulded around and under Dave's neck.

Once its moulded it becomes very hard.

The next thing that is made is the mouth mould with a fitted air tube so Dave will be able to breath through his mouth as well as his nose.  Dave found it particularly difficult when they had to make this mould as he was worried about gagging on his saliva as he has overactive saliva glands in his mouth, with this mould being in place right up until he'd finished the CT scan's.

the mask is ready to go over Dave's face and neck

It took a few hands to get the mask in the right place and moulded

The red circle on the mask represents where the radiation will be a lot higher.  Its the location of the main lumps in Dave's neck region.  Another piece gets fitted on top of this circle to raise it away from the skin and help the radiation beam focus on the right part of Dave's neck.

I found it totally fascinating to watch.  Dave did very well as it was a bit of a fiddly procedure and he had to lay completely still throughout. He was then ready for the CT scan so I had to leave the room. An initial scan was done after which a contrast dye was put in through the cannula in Dave's arm and the final scan done.

All up it took about twenty to thirty minutes.


After the CT scan we met with the Radiotherapy Nurse to discuss how they will support us through this and all the possible side effects...

• Sore mouth and throat
• Difficulties in swallowing
• Dry mouth
• Hoarse voice
• Nausea & vomiting
• Tiredness
• Skin reaction 

Again, each person is different and some people experience a few, others all and so forth!

We then enjoyed a quick coffee & snack before Dave had his MRI scan with the made to measure mask. Unfortunately I wasn't allowed in during this session.

Dave's experience...
I was shown through to the preparation area where I got changed into a lovely white gown (made a nice change from the respective green and blue gowns I'd recently tried on!)  I was then asked the questions to confirm that I didn't have anything metal in my body so that I would be safe in the MRI machine.

While I was being asked the questions the previous patient emerged from the MRI room so I was then taken through and positioned on the bed/board that slides in and out of the machine.  After having just completed a CT scan this process felt very similar, with the same neck support, mouth piece and mask fitted to ensure that was in an identical position, allowing the MRI and CT scan images to be overlaid for the oncologist to assess.

Again an initial scan was done after which a contrast dye was put in through the cannula in my arm and the final scan done. Again I kept worrying that I might choke on my saliva due to mouthpiece, but I was okay and managed to swallow occasionally. 

After the scans were complete the cannula removed and I went to the changing room. While there the next patient arrived with the questions sounding very familiar - got your PEG? Teeth removed?, anything metal... I got changed and was free to go and help Suzie enjoy the rest of her birthday, that part of the experiential day was over at least.
...

To nicely finish off our day we enjoyed a lovely walk along the new Anzac Memorial Bridge at Bar Beach in Newcastle.  The sun was still out and it was still slightly warm but there was a bit of a cool breeze in the air.  The sun was setting over the city in the distance, which was so beautiful to watch.  The view of Bar Beach from the top is spectacular too!! 

view of Bar Beach

Hi from us! 

The bridge opened on 24 April 2015 and it commemorates the 100th anniversary of the ANZAC landing at Gallipoli in 1915 and the commencement of steel making in Newcastle.  The walk is certainly a must for all visitors and locals.

I love being by the sea, I feel, in fact we both feel such a sense of calmness about it.  Just leaning over the rail and looking out to the vastness of the ocean is breathtaking!! We also like counting how many boats, ships, yachts etc are out on the horizon.

I phoned my Mum and Dad in England to thank them for my card and present.  Also letting them know how Dave was going.  It was nice that they could speak to him too!

After our walk we enjoyed a lovely birthday dinner together at Paymasters in Bond Street, Newcastle. We had been there once before and enjoyed our meals so were happy to return to celebrate my birthday.

Dave is able to enjoy his food a bit more now but still has to choose softish types of dishes.  He enjoyed his selection of Goats Cheese Croquettes as an entree and Fish Pie for a main.  I enjoyed Salmon Sashimi as entree and Duck Supreme for my main.  We shared a dessert.  We wanted lemon cheesecake but the chef had a disaster in the kitchen with the one he had just made apparently!!! So in the end we ordered the special of the day which was Pavlova.  They offered this for free which was nice of them!!

Paymasters is a small restaurant with a lovely ambience

Wednesday 27 July 2016

Dave is feeling much better since having the PEG inserted.  Its taken him two weeks to feel this comfortable.  He can now dry himself off after having a shower, dress him self and even put his own shoes on.  He is also sleeping more comfortably in bed now too.

I'm so pleased how he is doing and how he is dealing with all of this!!

Thursday 28 July 2016

This morning we both didn't wake till 9.30am!!! Both of us having a good undisturbed 10hrs sleep :-)

We had a light breakfast of cereals and off we went as we were running late as we needed to pop into Cessnock first to fill up the car up with gas before heading out to Newcastle Private Hospital again for an educational meeting with the chemotherapy nurse.  On the way to the gas station we popped into Gundog's Cellar Door for a quickish coffee and muffin.  Just love their gundog ornaments!!

Dave's expert navigation around the back roads to get to the freeway meant we still managed to get to our appointment on time!! 

We met with Lisa our chemo educator.  She was really lovely and very informative going through everything we needed to know.  Lisa also showed us around the chemo unit, where Dave would be staying overnight and the day centre if the treatment changes to just a few hours.

Dave starts radiotherapy (9.00am) & chemotherapy (Cisplatin (cis-plat-tin)) (10.00am + overnight stay) on Monday 15 August 2016!!!  So we have two weeks to fatten Dave up and for him to get fit and strong ready for the next phase of this journey, based on what we have heard from others he is likely to lose a lot of weight through this process!!

Afterwards, to enjoy special time together we drove to the Newcastle foreshore and walked along the waterfront to the end of the Nobbyshead Lighthouse breakwater and back.  The evening was very clear, cold and breezy with a stunning sunset.  Rewarding ourselves with a Harry's Cafe de Wheels Tiger!! A Tiger (named after Harry 'Tiger' Edwards) is a beef pie topped with mashed potato, mushy peas and gravy... totally delicious.  Dave's was a Tiger with bacon and cheese filling.  

Another 'Dave', this one jamming on the drums by the waterfront.

Then a good drive home.  Changed in to comfy PJs and dressing gown and lounged in front of the TV, read our chemo literature and blogged!!

Also had to think about meals for the next few days!!! I really need to get my head around meal times going forward and what meals to cook that Dave will be able to eat.  Will study this over the weekend and plan my shopping list and menus accordingly.

Friday 29 July 2016

Gosh it's Friday already!!!! The weeks seem to be flying by at the moment!!! 

We're looking forward to a girlfriend of ours visiting from Sydney this weekend, can't wait to see you Miss Janice :-) Drive safely.

Event though we had a late start we still managed a walk up to the clubhouse and our daily coffee before heading out for lunch today to catch up with a close friend of ours, Sue.  We went to my favourite cafe, Enzo's in the Hunter.  Lunch was so delicious though I'm feeling a bit queasy now!! I had barramundi which was a bit greasy so not sure my tummy is agreeing with it!!! Dave and Sue enjoyed Linguini, Dave had prawns with his. I can't believe he ate it all as it was such a large serving!! Cause since having the PEG he's only been able to eat small meals often throughout the days.  I just love how they delivered our drinks too... on children's books, so different!!!

Sat 30 and Sun 31 July 2016

Wow its the weekend again already!!!

Saturday we walked with the walking group and Dave also went out with his golfing buddies for a few holes, not playing still but walking and holding the flag for them.

Then for the afternoon we both attended an essential oil expo about doTERRA oils.  We both found it really interesting and useful towards our wellbeing.

Our girlfriend, Janice wasn't able to come visit on Sunday in the end as she had car troubles :-(  We were so disappointed!!!  There will be other times Janice. 

The rest of the weekend was very quiet and relaxing.

Monday 1 - Friday 5 August 2016

Wow!! Can't believe we're into August already!!! Five months to Christmas!!!

We've had a relatively quiet week.  The only appointment this week was with the Dentist.  We finally got around to registering with a local practice.  The Happy Tooth.  We had Dr Andrew Murphy who was fantastic.  We both hadn't been to the dentist for a couple of years!!! Bad I know!!! Anyhow we have been now and that's the main thing!!  My teeth were really good, but with a slight wear on the top two front teeth, as I apparently grind my teeth a bit!! But nothing major.  I might have to wear a protective splint down the track.  Dave on the other hand needs a little work done to protect his remaining teeth down the track - initially a protective splint (which we will both get measured up for next week), full crowns on his bottom molars and partial crowns on a few of his other teeth. Thank goodness for medical insurance!!!!

I've also been doing some research on doTERRA oils in regards to which are the best to diffuse and and apply for our wellbeing.  I'm finding it so intriguing and becoming quite obsessed a little with it!! In a good way of course!!

It was really important to have this dentist appointment prior to Dave starting radiotherapy & chemotherapy.  It now gives our dentist a starting point towards any damage occurring to Dave's teeth during treatment.  Hopefully there won't be any!!

I also managed to get into our garden one day between the rain showers to do some weeding and planting of some agapantha plants that Maree kindly gifted to us from a friend of theirs who had removed them from their garden.  Great day to plant as its rained ever since!!!

Our doTERRA home essentials pack also turned up which was very exciting :-) I couldn't wait to get our diffuser started with Frankinsence and Lavender. Our home smells divine!!

When we were out and about a week ago at the organic cafe Momo we bought an Acid/Alkaline Food Balancing & Food Combining chart so we have both been studying this to understand what foods are best to eat and avoid now and in the future in order to make our diets more alkaline and healthier.

So far we are both doing good, just a waiting game before Dave starts treatment!!! The calm before the storm we say! Talk again soon xxx