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