Enjoying the lull

Love is....enjoying touching him while I can

Colin's hair is beginning to take shape.  I can't stop rubbing his head.  It has taken so long for his hair to grow back.  I am surprised at how slow it is growing  and how sparse it is.  There is some colour appearing and his hair is downy and soft. I am touching and hugging him in anticipation of his return for treatment. Because when chemo starts and his white cells deplete and the numbers drop to zero we have to return to the "no touch" policy, barrier nursing regime.  Then He looks like he is scared for you to touch him. Not looking forward to the intense cleaning as I have totally slacked off. Not impressed that the toilet cleaner splashed on my leggings and bleached them either.

Like the calm before the storm, we  are basking in being home together. Sadly I have trained him to watch  Dr Phil, and daytime TV, which I switch on while we are eating lunch or cooking. The cooking programmes haven't taken his interest yet!
Gosh Colin worked hard on the 6 velux  windows,  as the foam needs replacing. He is doing amazing. Up ladders,  doing his walks and general house maintenance.  He has stopped his afternoon sleeps for 2 weeks now.  Still watching his weight but due to all his activity, lost weight yesterday. Back to taking the fortisip

Ekk. I got a fright when he came in from outside after chopping down half of the huge prickly cactus outside.  Was pleased he was around to smack the rat on the head with a hammer too. It's beady eyes were staring at me,  over the lawnmower.  It caught it's nose in the rat trap and was jumping around.  Those suckers  take a lot of hammering to die.  Hey.  I am not into letting them go either.  But I did scream from fright when I nearly stood on it but  Cam said "calm down its dead"  I said "are you sure?"  he said "well it's brains are hanging out.". At least it won't be feeding on my feijoa now. 

Making me look bad and feel lazy. "putting sick husband to work"  NOT. 

Nepal 

Praying for 3 friends from Glenda's group who are stuck at the airport. Luckily,  have all survived but not sure if they have food and water or when they can get home. Also Sandra and Kevin's nephew over there but is safe. My son saw his post on Facebook. Must be really scary for them all. 

Photos 

Pics of Colin's family at Farewell dinner  for Aaron and Joyce with their return to Canada on Saturday. 

Driving Off

Love is.... Feeling funny when he went off on his own

Driving in my car
Wednesday
Colin drove off by himself to a medical meeting today.  He really wants to keep up with his education.  Nice to see he got in the car and drove on his own.  First time.  Showing how far he has come with his independence. Only in February he could not feed himself or toilet himself. Couldn't walk with out support and was asleep most of the day and unable to speak much. That time seems like another world.  We can't believe it happened to him.
Now we are waiting to go back. I am praying it won't be so bad this time but we have heard the other stories.  It is going to be really really tough going.
As our friends from the ward said  "if you read the information you wouldn't do transplant"

I am wondering how long this blog will continue.  What will be the time to stop? Don't worry my avid readers,  there is a long way for us to go with all the treatment ahead.  Thanks for all the positive support and good wishes from you all for the transplant. The emails really help to carry on.
Life at the moment seems so normal. I wish we could bottle it and put it on Hold. 

Thursday
Clinic day and all is well.  Blood tests are fine. The chemistry results are better as his liver function is improving.
We trip around after clinic. Lunch at  Selera and off to look at a wedding venue for Nick. WE have to get out and about as much as we can as I have no idea how long Colin will be admitted for. We run into another neighbour Sue,  at clinic with her reoccurring cancer . Her boyfriend is also attending the clinic. Friend Steve is also there. He is so disappointed that he has no donor match from 4 siblings as they can't get a donor of the registry due to his weakened health. We feel so blessed. They both ask me about  Salvestrol. I hope it can help them.  Sue said the doctors don't mind her taking it.  It doesn't interfere with treatment but enhances chemo.

Beautiful flowers from  Mary H

My dishwasher is back on deck 

Don't tell Cam but this dishwasher cleans benches and hobs too! 

Family Time

Love is.... A newly engaged couple

Nick and Julie

There is going to be a wedding We are adding to the family so I will no longer be the odd girl out in this  family.  Oldest son is engaged to Julie. We are pleased and happy they are making this step in their lives.  So have been busy trying to help with a venue and date for next year.  Can't find the perfect place yet. Anyone really happy with a recent wedding venue,  email me. 

Sunday
Finally the sun shone through on this perfect day.  A birthday get together at Bonnie and Phil's place for a yummy lunch and lots of laughs courtesy cousin Tim. Great to see cousin Teresa visiting from  LA too.  My family finally get to  have our photo with Colin in it too. 

Enforced retirement 

Colin is missing his patients and GP work. Can't imagine how it must feel because it was so sudden. Not missing the clerical and business side of it though.  He has had letters and cards  from patients and it blew me away.  I see a side of him I never thought about.  A lady said Colin saved her life and another man said he had been a patient for over 30 years. They are all willing him to come back to the  practice one day and if he is able he will locum  part time.  That won't be for a long time as his immune system is compromised and dealing with coughs colds and infections would be dangerous. 

Tuesday

Colin is really well and we are like a retired couple. He is doing dishes,  fixing my car light and some mouldy paint in the toilet. I am cooking and cleaning mostly and we go out shopping for groceries together between feeding time. On Sunday he said his jeans were too tight.  Not to worry as there will be weight loss with more chemotherapy shortly.  There is way less pressure on food and he has knocked back to 1 fortisip daily  from 3. We still work round the meals which I am trying to make nutricious and vegetarian but there is less stress.  A 3 kilometre  walk this morning to build stamina and muscle strength. And get some fresh air as we try to implement a healthy daily routine and programme. We are getting on with it. 

I 

Nick and  Julie 

Count ourselves lucky

Love is.... Feeling blessed

Aren't we lucky:

-to have time to spent with each other
-to be healthy  enough to enjoy life again
-to get a sibling donor
-to be able to look forward to a year ahead and a future
-to be pain-free
-to not have financial issues
- to have choices
-to have access to free medical care which is top class
-to have remarkable friends and family who keep an eye on us and want to help
-to be able to dance again
-to enjoy the sound of music
-to  love each other
-to have 3 great boys
-to have a wonderful comfortable home
-to live in  New Zealand
- to be able to smell the roses
-to have some time

TRANSPLANT
This is going to be tough going for Colin and difficult for me to watch.  Colin actually had 2 sisters match but they use the youngest so this is ideal. 
The chemotherapy is high dose.  We have been told this can kill you as with no defence it is open slather for infection. No white blood cells to fight it.  The intense drugs blister your mouth and gut so they cannot eat.  Once the bone marrow is delivered via a drip,  the body is given anti rejection drugs.  These cause lots of nasty side effects. His quality of life after stem cell transplant may be affected. I won't be able to hug and touch him like I have been.  Might find myself a moon suit to hold the germs back.

Donor
The donor does not need to have any invasive procedure. They take drugs previous to harvesting to increase bone marrow so they are present in the circulating blood. A needle in  each arm. As the blood pumps from one side it is passed through a  cell separator machine and then returned to the other arm. It can be harvested from the pelvis under anaesthetic but not that common.

Friday
Julie and Pete have visited and brought goodies for us to eat.  Sad to say I have scoffed all the yummy raisin biscuits and blown my resolve to eat healthy. A moment of weakness. OK,  many moments of weakness. The  gow gees are good for lunch the next day. Thanks so much.  WE had a great chat and catch up.
Thanks everyone for the good wishes for the transplant to.

Saturday
I discover a neighbour has a bone marrow cancer so we meet and compare notes.  We feel like we are sitting in the same boat and can't get off.
We will support each other. We have both done much research on food and supplements and the conclusion is similar.  Funny we have ended up taking the same supplements and salvestrol.  It is good to talk as there is an understanding of what we are going through. The trepidation of what is ahead. 

The big companies who created the food on the shelves at the supermarket are feeding us crap . This is classed as healthy eating too. They have a lot to answer for.
http://tvnz.co.nz/national-news/filmmaker-ate-average-sugar-intake-60-days-got-fatty-liver-disease-6291371/video?vid=6291015

Fabulous news - We HAVE LIFT OFF

*******Colin has a donor match********

Love is..... Sisters willing to test and be a donor

Thanks for all the hope and prayers
We have just found out Colin has a sibling match for Bone Marrow TRANSPLANT!  We have won the lottery.
I am tearful and emotional as we hear the news after struggling with Colin's mobile phone to try and get the missed call from the hospital.  He has to set up an answer phone message before he can access it.  Not as easy as it sounds when the screen keeps going blank.
So many others on the ward have not had a match. I have been holding onto hope with every phone call.
Kind of wish we were up there doing it now because I see Ed Sheeran visited the ward yesterday but on the other hand they had a bout of whooping cough.  A patient's baby caught it so antibiotics have been given out freely to those in contact.  Not us luckily.

End of May
It will be happening.

Colin is Really well at the moment.  No one would think his body has been given a " use by date".  By gosh we walked through the domain today on a 3/4 hour walk.  He did so well and the weather was gorgeous.  Forced into retirement we are enjoying our wonderful time together.  Every day is now a bonus.  We will enjoy the time before hospital admission.  Any friends wanting to see him should get in touch soon. I am so excited but anxious as well after watching other patients go through the transplant.  We have caught up with close friends David and Sandra D after running into them at day stay. A bonus. 
Today is Brendon birthday and such wonderful news to remember that we heard it today.

Just might be improving on taking the selfy .  Ha

Can we win (the transplant) lottery

Love is..... Sharing our wait together

Tuesday

Lottery

We are waiting every day to hear about the sibling donor.  Tests were done on the 9 March and it is over a month wait now.  Not sure if it is too long.  At least there is no negative news.  It is like waiting for the lottery.  We have only 25-30 % chance of a sibling match.  We have heard of someone with 8 siblings and no match. We are in anticipation about the outcome. A sibling donor is by far the optimum choice.  The phone went this morning and it was the transplant nurse.  We had to go off this morning to hospital for more blood tests.  Not sure but they may be needing more information to make a match. In hope of some positive news shortly.

A quick blood test today.  As you can see Colin has gained weight but not back to normal.  Doesn't matter how much he gains now.  He will lose weight with the next chemo or if he goes to transplant. More information on transplant later.  It is not the same as a kidney or liver transplant.  There is no operation needed as the bone marrow enters  through a drip with in 1/2 an hour. 

3 months & counting

Love is.... Huggling up and you can feel your husbands groshong (intravenous catheter)

3 months
And counting.  Can you believe that it is 3 months from diagnosis. We have a long way to go.  When the doctors said that Colin would be in hospital for 6 weeks and under going treatment for a minimum of 6 months,  we got such a shock.  Time is irrelevant now.  We are together at home for now.  There is a daily routine that we are managing well. I don't get out of the kitchen before lunch though.

Progress
Colin has done the evening dishes 3 times now.  Gosh that makes such a difference to me. He is managing so well.  Exercise didn't happen today due to the cold rainy weather but we plan to keep going to dance class for now.    Main blood tests are spot on.  Variations in liver function mean he has stopped one of the drugs.  Will see if that helps.
I see he is wearing his wooly hat due to the cold.

Lucy
Just as we were drifting of to sleep last night I heard Cameron yell through the intercom.  I rushed downstairs to find him pointing to a big fat hairy rat by the bathroom.  Good little Lucy killed another one so now we can get to the feijoas first.  I didn't get too close as they are gross!  I knew it was a good idea having sons.  They have to deal to the nasties. 

Friends
Have kept us going with support and continued contact.  Glad so many are interested in the blog.  I know we have friends watching from Australia,  Ireland and USA.  Those on travels to Japan and Korea are showing on the world audience.  Not sure who is watching from RUSSIA AND HONG KONG though.
We are so happy Sandra D and husband David have gone home last week and he is doing well.  We check in with each other regularly and swap notes. They are closer to transplant than us. Mainly because of a delay in putting the siblings on the list which was the hospitals slip. WE should hear any day soon.
Please,  please can we have a match.

Our new alkalizing water filter

Water is so much nicer

Bald is beautiful

Love is.... Rocking being bald 

Couple of friends have said Colin really suits bald and I agree.  His head kind of resembles a kiwifruit for hair growth now.  Keep threatening to get the hair clippers out to even it out but really it is too sparse.  He saves time not having to wash or cut his hair. No need for shampoo or combs either. Never realised how sweaty the bald head gets.  Bonus of having hair is it tracks the sweat from your head so it doesn't run down your head to your neck. Glad it is not me being bald but I was thinking I wanted to swap places with him at times so he didn't have to go through all this. I'm a bad patient though.

I am not achieving much as keep getting distracted and son is round for dinner.  Bed late again. 
Been told we have to eat organic.  Lucky I am growing veges well sort of trying.  We have  potential big crop of chokos and are feed ING well off the feijoas presently.  Fighting with a super mouse over the feijoas as we come out each morning to a feijoa massacre.  Not they won't eat poison when  feijoas are around.  Lucky Lucy cat decided to kill one to night.  Also lucky she didn't decide to bring it to me to show off.  Don't you hate it when you have to say "good girl"  when you just think yuk yuck yucky!

Dove update     
For those of you joining the blog recently refer back to " coo coo ca choo , shoo"
Just when I said yesterday that I couldn't hear the dove and I wondered if that was good or not,  yes this morning it has come back this way.
Dang nabbit. 
And  Cameron sold his air soft gun.  Do doves fly off in winter???

Woke to find Cameron cooking yummy pancakes for breakfast 

Unusual design though  

Homegrown and not too many holes

On Hold


Wednesday
Colin's mum came round with her weekly soup, Chinese style for him.  He loves that soup and it is perfect for in-between meals.
I am organised and Cameron is cooking burgers for dinner with Colin so I can have a night off.  That is my plan so I can race off to take my yoga class again.  Friend Mary  H  is doing a great job keeping the class going. Just loved teaching yoga again as it truly energizes you.  I have lost so much flexibility and was a bit achy last night but feels wonderful.  Must find time to keep going.

Thursday
Appointment day but we had to leave home early to do jobs.  We have purchased a water alkalizer as cancer doesn't like an alkaline body.  Going to have to look at the food we are eating as well. Traffic is heavy all day.  We  have  a 4 pm appointment at Colin's bloods, are good and still improving for now.  Because the donor testing has not been completed  he has been put on hold for a few more weeks. If a sibling donor eventuates then Colin will go to transplant.  It's NOT going to be a walk in the park!  WE are hoping it will happen and sooner better than later.  We have a couple of weeks up our sleeve. Colin will go back to hospital with in the month for some form of treatment be it more chemo or bone marrow transplant.  Pray for a sibling match for us as finding another donor is hard and time consuming and more difficult for the body to handle. I have been driving all day and it even takes us an hour to get home at 4.30 pm
Home at 5.30pm to cook and I am tired now but nothing a good sleep won't fix

Today I had my 3rd request this year to present my speech again on the Ah Chee history.  I love giving the speech as it brings my father alive again and  people love listening to the family background and genuinely are surprised about the small beginnings.  I unfortunately have had to decline but may be able to do them later in the year. 

Colin and his mother 

Day stay waiting for bloods to be taken

Can I have this dance?

Love is........ Being able to dance with Colin again.

Tuesday
When Colin got sick I never thought we would dance again and it made me feel so sad because we had such a great time with the dance crowd.  I knew we would still see the group again but not being able to dance together was something I never thought of before.  In fact the dance friends have really kept us going strong. Tonight I encouraged Colin to go back to Albert's class.  Even just for the exercise and he did so well.  His memory is way better than mine.  It felt so right to dance again after so long. Since New Year's Eve actually.  After a few stuff ups we went quite well.  Learnt a new rumba move and a recap on the New Vogue.  Kevin kept us entertained with lots of laughs and Albert kept teasing June.  Nothing has changed but we really missed it.  It brought a tear to my eye dancing with Colin again.  So I whispered " I love you"  as we rumba danced across the studio.  Simple pleasures. 
I honestly can't believe how far he has progressed. Amazing.

Well now he has an enforced retirement we might make the Thursday class as well.  It is so much more fun dancing than plodding the pavement for exercise.

Life is much more relaxed for us at the moment.  There is still lots to do but no pressure now.  Colin can manage almost normally,  golly he didn't have his regular afternoon kip the last 2 days. I cleaned the kitchen before lunch and spent the whole afternoon planting out the garden.  Once it is sorted it will only need watering and a little weeding. I am picking green vegetables already which is my aim for healthy eating.  Colin is flat out sorting his accounts and stuck in the man cave. He has managed some minor repairs round here and has gained back his independence.  His weight is good and still gaining slowly even with the relaxed food intake. His bloods are mostly  normal

Heard you all had a fabulous Easter weekend dancing and we were thinking of you all at the events. 

Hop along bunny

Must be Easter! 

Love is.... A quiet Easter at home

Week 11 

Friday
A quiet day at home.  Where does the day fly too.  I am still buoyed by the feedback I am getting from friends who had just joined the blog and am able to play catch up. Not only is the blog my diary but also my writing outlet and my communication to friends.  At over 10,000 views there is a lot of watching.

Saturday
I have left Colin home with Cameron and taken a day off kitchen,  cleaning and gardening duty.  Friend Mary H  and I have followed our usual haunt at the Howick market. I need organic seedlings from the clevedon growers.  Their produce is superior and resists pest and disease and are high croppers .  Perpetual spinach,  sugarsnaps,  lettuce and celery.  Now just more blitzem for the slugs and snails.  I put it in cream bottles so it is not contaminating the soil.  The butcher there sells gluten free low allergy sausages with less preservatives, so will taste them.
What a great day out,  buying some jewellery and clothes and another lemon tree.  Need lemons to alkalize but I keep killing my trees.

I don't need to cook as we join the dance crowd at the Crown for an amazingly superior dinner for a bargain price. They say nothing beats it.  We head home with the leftovers as the others carry on to the  Cossie club for their usual night of dancing.  Colin can't join them yet as too many people means to many germs to catch.

Sunday

Where has the day gone.  We went off to see FAST AND FURIOUS 7. Great movie.                                       Raced home to dig over my planter in preparation for the green veges.  Will have to plant out tomorrow. Removing all the strawberry plants and runners took ages.  Anyone wanting strawberry plants  can come and gets some. My pak  choi did us for dinner and harvested the last two capsicum.  Bumper crop of chillies this year which I will turn into chilli sauce.  

Rabbits everywhere.  I want a chocolate bunny 

Winter melon soup

Limbo

Love is.... Encouragement

Wednesday
Yesterday Glenda said he was domesticated.  Colin has his own new wash up gloves so he could put his dishes in the dish washer. Every little bit helps me and gives him more exercise too.  Just look how far Colin has come.  In January he couldn't eat or feed himself and could hardly mobilise.  Today I encouraged him to drive home in light traffic.  All trying to get back to normal  as we don't know when he is due back  into hospital. Small gains. 

Look who we ran into by chance on our walk Round the mall. Little Mary.  We are careful about going into supermarkets  though and he doesn't touch anything and we are still using lots of the hand sanitizer. 

Thursday

Clinic day stay and Colin's bloods are stable and white cells looking great so off home after an hour.  Nurses appreciated my orange and date muffins.  Ran into a friend Maria who's husband had a transplant.  She said he sleeps hours during the day but still unable to drive or do much round home.  They have been doing this for 14 months!               Ran into neighbour Sue in clinic with her partner.  Both having Chemotherapy. The appointment  on Monday was like a meeting of the ward,  catching up with 4 other patients who we met when admitted.  Everyone doing well now. 

Achievements this week for me

Bottled home grown beetroot,     started sorting the office,      cooked rice noodle sheets for the first time from scratch,       made egg tofu myself,        baked muffins for the nurses,    planted more veges and picked spinach yummy,          repotted  spring bulbs,         did a big linen wash,      had boys for dinner and again tonight,      trimmed the trees,   still got lots to do but feeling good.