Dancing with the Stars

Love is..... Being able to dance together (better than 1/2 the DWTS contestants) 

Sunday—05
Colin is doing really well.  Spent the afternoon at home today. 2 lots of chemotherapy and awaiting another now while we watch Dancing with the Stars.  The next dose is Busulphane and so far not to many side effects but they usually kick in by day 3 or 4. He had a drunken episode last night where the sedating drug made him whoosey and wobbly.  He was falling over and tripping up.  Getting him in the shower was interesting. Not sure how tonight will go in hospital. 

Monday —04

Colin is still managing his chemotherapy well.  I am amazed that there are so far no side effects except that he has slowed down a little and his mind is working more slowly too.  Awaiting other side effects like nausea,  diarrhoea,  weakness,  rashes,  headache,  loss of appetite,  fever,  chills,  sore throat etc. We were woken  by the phone at 4.30am, wrong number and 5.30am nurse taking obs.  Then 7 by the water jug lady.  Feeling bit tired now.   Pam Corkery dances like a drunk lady.  She better be first to leave dancing with the stars as we  can't bear to watch her stumbling around the floor.  Had a restful day at home while I cleaned the laundry and cooked.  Colin presently finishing  more chemo.  Then off to sleep for the night. 

Thanks to  Aunty Nellie 's friend  Linda who ran her marathon for leukemia patients and dedicated miles to Colin. .  She herself over came leukemia 18 months ago to be able to do this.  Amazing.  

Tuesday —03

Chemo this  morning   then off home for the night.  Colin is still managing well. We Went for a 2 km walk this afternoon before the weather closed in. So nice to feel the sun and sniff fresh air.  Same tomorrow.  Once Friday  hits he starts a different cocktail of drugs which will make him uncomfortable by day 3 post BMT. I am working hard on the ice therapy during chemo to off set the mucocitis. Resurrected my ice shaver which was good for Margueritas for ice to suck on.  He has to  brush his teeth 3-4 times a day and do mouthwashs regularly. Blood results are starting to change and to drop. All going as expected. No surprises. He washed the dishes after dinner and not feeling tired or  any different.  Friend David D who is due his donor cells tomorrow is feeling nauseated today.  Hope he feels better by Wednesday. 

Back on the rollercoaster, that I didnt want to ride

Love is..... Riding the roller-coaster together

Thursday
A persistent visitor insisted on coming at 9 am after ringing and waking us.  When he said he had campylobacter and a bladder infection I wasn't impressed.
We declined a hand shake. Though it was good to catch up with him.  Colin has to be vigilant with exposure to germs now.

Friday
Our last day at home before chemo tomorrow. He may be able to return home during the day between doses.  Past experience doesnt support that but we will see.  Nurses who have been brilliant had charted extra anti nausea.
Have had some time out today for myself and then shopped for food over the weekend.
I feel strong right now.  Sometimes I am a mess as I think about the future. What you see on the outside belies what is inside.  Not a moment goes by without the diagnosis ruling our lives.  It is all encompassing and encapsulates us.  Life after 19 January is a different world.
We are both starting this stage of BMT in better health and strength of mind

Visiting
Visiting  for relatives and close friends only.
We may not be at hospital so ring first.  You may visit me if Colin is not wanting visitors but the restrictions  may put you off
-shower and clean clothes before you visit
-no one with cold,  flu or infections or exposure to childhood diseases or recent vaccinations
-dont come if you feel unwell
-only 2 people at one time.  Transplant is exhausting.
-no flowers or plants
-if you have been gardening don't come
-on entering the ward you must wash and sanitize hands
-don't  touch Colin

Colin will have no defense mechanism as the toxic chemicals will obliterate his bone marrow. This makes him susceptible to catching anything.
An infection can kill him

SATURDAY Chemo day
Minus-6
Countdown to day 0 - BMT day
All went well for a short dose of fludarobine this morning and we are home by 1pm.  All going well we are home to stay tonight
Back to hospital for the next 2 days for  morning and evening chemo doses.  Yayy we can go home during the day and will stay overnight from tomorrow
Lovely to come home for a break.

Blessings
Thanks so much to everyone for
-good wishes /chats /a listening ear/nourishing food /kind texts /thoughtful emails /regular phone calls /yummy biscuits
I cant get back to you all personally but am really thankful for the support.  It makes us feel like we are not alone.

All plugged in

His hotel room for a month.  Only single ply toilet paper though. 

Photos from engagement

Thanks Diana for making this fabulous sweetheart cake

Waiting and waiting, and waiting.....

Love is.... Trying to be patient

Hospital
We are waiting for the picc line to be put into Colin's arm,  all prep for the following  week.  Then off for ecg and xrays. The PICC line is making life harder as he has one arm out of action and needing help with showering again.  Wrapping it in gladwrap is a nuisance.
Tomorrow we are at day stay for blood work and a script.
He then takes anti seizure meds till admission
Admission is on Saturday 30th to start chemo before the donor cells on the 5 June.

 We have waited  an hour before being seen.  Usually there isn't too long a wait but the whole day will be gone by the time I get home. 

Pantry Pride
Went to Sandra and Kevin's and checked out the new kitchen.  What a transformation!  Lovely job.
Though the fancy fridge which spits out water and ice in 2 versions was spitting the dummy and spewing water onto the floor and refusing to give ice.
The joys of technology
In my efforts to make my kitchen look better as there will be no improvements to be done for a year here,   (too dangerous for transplant patients)
I have had a good clean out and a tidy up.  Makes me feel much better.  Amazing how you accumulate junk and too much food.
Something to focus on.  Just want to get home to continue.  Perfect job for distraction in this nasty weather. 

Packing
We are packing our bags and sorting all my dishes and cooking containers and food to take to hospital.  The  kitchenette is good for simple meals and I will walk to Newmarket for supplies if I am staying over.

Boys and their toys. 

Reading the manual didnt help

4 months and counting

Love is...... A helpful son

Busy week
Last week was super busy as we went away for the weekend but I forgot that there is a lot more to do when you come home.  Hence a big stress out for me as we had an engagement party for Nick and Julie on Saturday. So cooking all week and tidying house and arranging furniture. Sister and brother in law helped out with the catering.  Couldn't do without them. Son Cameron was amazing.  He cleaned toilets,  shifted furniture,  filled pineapple tarts,  iced eclairs and filled them,  and fried the spring rolls.  Nick and Julie's friends loved the food and kept taking photos of the desserts. Diana made 2 amazing cakes.  Nearly all the huge sponge was eaten and the heart cake got big oohs and arrhs.

Thinking about Colin's transplant and all the jobs for the party besides the usual work load caused a lack of sleep. That made me want to cry.  But  I wasn't alone as friend Sandra D also said she had a week of crying.  So then I realised I wasn't losing it. Went off and bought 2 bamboo pillows.  Not sure if they are helping but I  was tired anyway.

Transplant begins soon
Colin goes into Auckland Hospital on the 27 May to begin chemotherapy to knock out his own bone marrow. Some of the toxic drugs cause side effects like seizures so drugs for anti seizures are given before hand.  He has an 8 day program before transplant. The number and type of drugs are scary. The day of the transplant is day 0 and we begin counting forward from that day. The anti rejection drugs begin and aren't pleasant.  He wont be on these forever, if all goes well.

The transplant food
Just one of the items discussed with the nurse but I have to be super careful with hygiene and choices now.
-no pepper,  or uncooked spices,
-no nuts or hummus
-no take aways especially sushi,  salads,  ice cream
-no raw meat or seafood
-no uncooked egg or mayonnaise
-only fruit that can be peeled or stewed
- no processed meats like bacon and ham (our choice)
Most of the food above can carry bacteria or fungi or salmonella or campylobacteria.
Colin wont be eating much from 5 June when the donor cells are given
I stick to home cooked soups. The hospital caterer is changing so let's hope there is an improvement

Cleanliness
I have to step up. I have slacked off a bit.
Much more washing of linen and cleaning is needed round home. Colin will be in hospital for 4-6 weeks so I just need to keep up while he is not home.  He Maybe longer depending on how the transplant takes.
Even visitors need to shower and wear clean clothes to hospital. Initially it would be best to limit visiting. People can meet me on the ward though.
Anyone in contact with or has an infection or cold or flu can not visit.  If you have had contact with children who have had childhood diseases stay away.
If you have been gardening you shouldn't come.  Hands must be washed well and sanitised.  Any thing that will compromise Colin's health is dangerous.  He will have NO defense mechanism.
Back to touching him with sanitsed hands or gloves. 

Friend Wendy kindly dropped of these fruit and  veges for me 

Will be cooking soup 

Quick lunch before his next appointment at Greenlane hospital. 

Eating out while he can. 

Working up to BMT

Love is.... The ring the bachelor gave Matilda.  3 carats of diamonds yum!

Biopsy
1 hour to hospital for an early appt for bone marrow biopsy this morning. Checking status so hope he is still in remission.

Going to the sea (not overseas)

Love is....  Travelling to Omaha which is still possible

After 2 days of solid appointments and driving in the worst Auckland traffic we have decided to go away for the weekend.
We saw the transplant nurse yesterday. Will fill you in later
Going off line 

Feeling really stressed today after a lovely weekend away. BMT is booked for 27 May. I am finding it hard to sleep with all the things I have to complete. BM Biopsy booked this week so hope it is good enough to progress. It is overwhelming.  

Wont be able to post much this week as super busy till week end. 

Autumn Leaves

Love is....... Being able to go places

Autumn
A beautiful walk this morning as I see Autumn birthing..  The sun is gentle as we crunch copper Fallen carpet under foot.  The view is orange and browny.
The air is sweet as the light breeze flutters the leaves around us like a cocoon. I falter up the hill but Colin is consistent and I rush to catch up.

Busy doing nothing.
If we get a invite out we go.  The daily 3km walk is great but I will make any excuse to avoid it. Colin is disciplined.  Whenever he has a plan he sticks to it. No deviation.  Trouble is he loses weight quickly so has to eat and eat and eat.  Wish I had that problem.  Mine is opposite.

Excuses for not walking:
- can we have a rest day
-I have to cook
-the kitchen is a mess
-have to wash the floors
-it's going to rain (this works as he hates getting wet)
-it's really sunny (this also works as he is sun phobic )
-I have phone calls to make
-I have to do the accounts !  This doesn't work as he knows I haven't done them since last year.

   I spent the afternoon attacking the garden as  tons to do.  Foiled the rubbish men again by shoving the garden greens into the bags.

Tuesday
A catch up lunch which is lovely in a little group.  Diana makes an amazing heart cake which we get Colin to cut because he turns 65 in June but will be in hospital for his birthday. Probably eating via a tube.

Wednesday
Spirometry appointment this morning and bloods this afternoon. So busy driving around Auckland
Tomorrow is a double appointment too.  Seeing the transplant nurse.

Sandra and Kevin's on sunday 

Her cleared out kitchen

Early birthday cake

Sweetheart 

Moving along

Love is..... Eating pure peanut butter ( from Binn Inn)

Wednesday
Consultant visit and an introduction to the transplant nurse.  The weeks are flying but it is almost if we don't want it to come too quickly because Colin is amazingly well and almost 100% presently.  All that will change dramatically once chemo starts in preparation for the stem cells from his donor. The chemo must obliterate his own stem cells.  Unfortunately he is going to have a reduced intensity transplant which means reduced effectiveness.  I feel quite devastated that it may not be a cure but am praying that it will be successful regardless. There is much information to take in and we await the testing to be done at the superclinic. Carrying on as normally as possible.  Great to see friends at clinic.

Thursday
I have discovered we are only walking 2 km but doing well .  Because the weather is wet I have conned Colin into my yoga class for 2 this morning.  I am amazed again at the range of movement he gains from a basic class.  He is so stiff,  from a previous back operation but loosens up heaps by the end of the class.  Decided to go to dance class again,  2nd this week to keep active.  It feels fabulous to dance and socialise with our friends again.
Mary Y has kindly popped round with a food delivery.  She is a legendary cook producing peanut brownies, that I have to confess I have demolished fairly quickly.  The meat pie was a timely lunch and vegetable soup for tomorrow. It is nice to have a day where I don't have to think about cooking and just do the reheating.

Friday
We have had a number of visitors this week and many long phone calls.  It is helpful to talk and read emails.  I feel guilty I am behind with the garden and housework jobs.  Should catch up this weekend though.  The exercise and daily routine flows into the next day. Have increased distance to 3 km walk today.   It's nice to cosy up in bed after a busy day and keep each other warm as the temperatures slowly decline. He is tired tonight. 
I still have to finish my  Accounts this weekend but do this under duress.  Some of you will know what I mean. I'm nearly there though!
Donor Anne has completed testing and orientation and all is nearly ready on her end.