Back to hospital

Love is......  Never lost

Readmit to ward 11
Helen the charge nurse rang just before I went off to get my Hair cut again.  Yes it has been 5 1/2 weeks. 
Colin is going back to the ward for chemo on Monday.  She told me he s getting two lots of 6 hour infusions over 6 days.  See how long he has to stay depending on side effects.  Golly on Tuesday we had 3 different scenarios for day stay chemo.  Then she rang back and said he was just getting the treatment over 3 consecutive days.  We can handle that.
Hard to plan when they keep chopping and  changing. So  admit to the hospital ward next week.
Hoping Colin doesn't get so sick this time

The table
Phil my brother in law has kindly polished and varnished our table which was long overdue.
Doesn't it look fab.  Thanks so much Phil

Off to work.... Just visiting!

Love is......visiting work and feeling the love back at you. 

Visiting work
Staff were really wanting to see Colin so we arranged a drop in at lunch time.

Will pop back again to see others he missed.  The sentiment from staff who have talked about the boss who has been so good and lovely to them is very moving. 

I think he would love to come back to work if he is fit and able.  He certainly thinks about the staff and work often,  after all he has been at the centre for over 34 years! 

Colin gained more weight now 61.4 kg.  It's working. 

Busy day

Full on day,  enjoying friends

Guess who?   Ate Mary's yummy chiffon cake. 

The smallest ukelele

Harry Colin's flatmate from the 70's

Cruising

Love is...... Never having to say your sorry

Day stay
Off to Auckland Hospital to get results and talk with Doctors  to see when next chemo starts
Update this afternoon.

Weight
Colin's weight has stabilised and not increased which is what I thought would happen. Slight drop but nothing major.
Still feeding often.  Weighing at hospital showed a 2 kilo gain but different scales and with more clothes and shoes on.

Treatment
Colin's bone marrow biopsy shows he is in remission after the intensive Chemotherapy.
He begins consolidation chemo on Monday next week and it will be done as an out patient.  He will go in for day stay 3 times a week and there was some discussion about treatment time and dosage.  The consultant Nigel Paton decided to halve the dose probably  due to results and seeing Colin who has lost so much weight.  Only one of the drugs he had before will be given for about an hour.  He should not be so sick hopefully this time round.
The difficulty is that chemotherapy  is not a cure.
Transplant is more positive  but Colin falls into a difficult age bracket where the level of chemo needed is too aggressive.  A decision on how many rounds of chemo at this stage and if he would go for Transplant will not be made yet.

So we go forward with positivity and hope that there will be success and that he can deal with each step as it confronts him. At least this chemo will not be so hard to deal with.

The Dove Factor

Love is..........what warms your heart

The Dove

My brother in law Phil said the Dove (see post Coo Coo Ca choo Shoo) had a fight with another bird and has moved slightly away. I see it is perching on his roof  each morning. I am surprised about the Dove Factor.  I went to the hospital and heard the Dove cooing in the Domain. I walked to Newmarket and heard another dove. Heard one in Remuera,  then in Northcote. Why is it following me. Someone said it is my father reminding me he is there. The cancer support group is called Dove House.

Feeding time

There doesn't seem to be a time which isn't feeding time because I am doing 6 feeds a day. I told you it was like having the baby home. Last night the late feed finished by 9.30.which was stewed apricot and custard. Food has to be homemade,  preferably heated and fresh. I have set his phone alarm for morning and afternoon tea as I want him to do some himself now. He forgets and if I am out I have to phone Cameron to help. Then I vacuumed and washed the floor with my steam mop to kill bugs. So pleased I defrosted the freezer before dinner and made a basket for frozen food you guys supplied. 

Phil L is kindly revarnishing our wooden table, hence the plastic one. The wooden one was unhygienic and a job I have put off so thanks a million Phil. Nice job too.

Weight

Colin gained 100g yesterday. Golly I could do that in 5 minutes. Weight today is .......60.8 so a huge gain of 1 kilo. So the eating plan and rest plan is working. Now I can step up the exercise plan. Don't worry, it is a little bit often to build some muscle back. Actually might put him on the bench with no weights. Haha                                                          Finally he is into the 60 kilo bracket a big milestone.  Fantastic. Of course there will be a drop when he goes to the bathroom but let's keep hoping it goes up. 

 

Eating Sandras mushrooms and mum's fish dish.

Bone Marrow Biopsy

Love is....  When the other persons happiness is more important than yours.

Colin is back in Auckland hospital for a bone marrow biopsy to see how the chemo went.  Say your prayers for a good result.  He will still have more chemo but this determines the next round.  This taking of bone marrow is quick and simple as there is no bone taken just the fluid which looks like thick blood.
He is sleeping after the drugs,  nothing  to eat this morning for the procedure so this is going to set him back on his weight gain program.
It took us just under an hour to get into Auckland,  that traffic is a bitch and had a straight slow run through.


The news about the new rhino at Orana Park is that the baby rhino drinks its mothers milk and gains 2kg daily. I need me some of that rhino milk for Colin.

Bone marrow slides for testing

Dr Sui An who is like a size 6, she's tiny.

Enjoying the day

Love is....... doing physio exercises together

  Colin's weight is still 59 kilos.  MARY Y  very kindly brought round heaps of food today as I whizzed around to do chores.  Colin ate continually and Mary was witness to that.  Unfortunately with such a drastic weigh loss and such a short time for him to make gains, we are fighting a battle we can't win.  With chemo starting  again and a usual weight loss, there is a problem. 
I rang a friend last night in desperation for some more advice.  He needs more fortisip which the hospital dietitian didn't recommend.  So I rushed out to buy some before we can get a medical authority.  Every  day counts as we aren't exactly sure when they will decide to continue treatment.
I am more focused on the food front with some more ideas to make meals that count.

colin is spending a lot of time on the computer catching up. He is quite mobile but finds it hard if we go out as his walking tolerance is low. 
He hasnt slept during the day since Friday and is sleeping well at night. really doing well.


Thursday

I have decided to change tack with the eating programme and my cooking programme is quite intensive. I set Colin's alarm for morning and afternoon tea because he forgets to eat. (i have never had that problem)

Trying to get him to take more responsibility for  his own food. Also made him have an afternoon sleep and restricted computer time. 
Weigh in tomorrow will tell.

Family Time

 Molly 85 years old with her family and grandchildren

Last Thursday we had a family get together for a photo opportunity as you never know what will happen next.  I missed the opportunity at Xmas time last year so when nephew Daniel came back this week from Melbourne we tried to get everyone together.  Son Nick was flying to china the next day so we only had one night to make it happen.  Unfortunately Colin and Martin aren't in the photo but we can try again some time.

A friend who lost a close friend said she takes a photo every day.  Thought that was a good idea but I'm angling for a new tablet to use.  Will get shortly but like me always want a discounted price.

 Love is.... falling asleep holding hands

Colin is  improving daily but with the return for more of the same looming  over head.  but we know it will work so he has to do the treatments.  Can't believe that last month was so traumatic and now it is like it never happened because he came home.

Benefits
No hair means no washing, styling, combing
No shaving , saves time.
Weight loss means clothes are loose
(unfortunately I am comfort eating with him and have gained back weight, and he went to the toilet and is back to 59 kilos)
Can eat like a trooper and not worry about cholesterol etc.
People bring you yummy cakes and food
You can sit around and no one tells you off
You can order people around and they do it for you.

Feeling great

Love is.... Sitting on the couch grinning at each other

Colins miraculous bounce back from chemo had me caught out But it came at the right time.  Having him home for the night was so special I couldn't sleep as I kept checking if he was okay.  Bit like bringing the new baby home. The hematologist took pity on us and said we didn't need to come back last night. So we returned this morning for the discharge which took 3 hours.  It was odd leaving his room which he had lived in for 31/2 weeks.

He hasn't let me kiss him but I would steal kisses placed on his neck or bald head because the passing of bugs is too dangerous.  I can now give him hugs seeing he is upright and I can get my arms around his frail body.  Feeding him all day so his stomach is always full. Aim to fatten him up just so he is strong enough for more chemo. He kissed me on the cheek yesterday so we are getting closer.

He manged to shower unaided yesterday,  is able to walk by himself small distances,  stays awake all day now

He still has clinic appointments in Auckland but he is home for two weeks to recuperate.  That can change any time though.  Biopsy this Friday will determine how soon he goes back.

Thanks everyone for all the messages of support and offers of help. Little messages kept me strong and positive when I was waning .  The food has been amazing and a real support and the transporting came just at the right time.  I think we will be needing help during round 2 but hoping it won't be as bad. 
Thanks friends and family.

Colin is HOME

Love is...... Being at home at last

4 weeks since diagnosis
Colin is home and allowed to stay now because his blood work is so good.
We go back tomorrow morning for proper discharge.
Yayyyy
Home for 10 days with continuing tests but this feels so much better and just when I was seriously flagging in energy.

Great Escape

Love is...... Rushing to hospital to  bring husband home for a day.
Breaking out of hospital and home by lunch time for the day.
Back to hospital tonight but looking good to come home maybe by Tuesday

I have cooked and cleaned all day and now am shattered. 
Colin ate all day and i swear he has a pot belly my goodness.

Taking off

happy Valentines honey
is there a reason the blue one is smaller than the pink one?

neighbour getting married today.
flew off in helicopter to the temple

Treatment

Treatment to date
14 February 2015
Diagnosis: 19 January 2015
Acute myeloid leukemia
21 Jan :
transfer to Auckland hospital
22 Jan :
chemo started 7 days Rx 22hours a day
Dynarubin,  cytarabine 
Delivered via IV  groshung line in chest via superior vena cava
29 Jan :
chemo stopped
Recovery involves waiting for the blood cells to recover and begin production again
This whole round 1 of treatment takes 4-6 weeks depending on individual recovery
Neutrophils
Normal range 1.9—7.5
Colin is at…0.17
These cells are needed to fight infection
Plan:
He can go home when blood results reach a level that he can cope back home
He will go home for a short stay,  I gather anywhere between 3-14 days
Return for round 2 of chemo
Total time of Treatment:
Probably 6 months
How many chemotherapy treatments?
We don't know.  Some people here have had 4 rounds before bone marrow transplant
Every chemo treatment is tailored to the patient and their results.  No two treatment regimes are the same.
We don't know if he will have a bone marrow transplant.
Answer to most questions is: we don't know yet!

Burst out of his bubble

Love is.....  Forever and ever
Bubbles
He has burst out of his room being the bubble and all.  Infinity and beyond.  With intrepidly skin legs he has cautiously, with my prodding, ventured out the door. The nurses look shocked and pleased and encourage his little adventure. Keep it up honey.  Race you round the ward.
Clean,  cleaner cleanest
I am not daunted by the germs.  I have to do it bit by bit.  The entirety would drown me.  I can't  make our house antiseptic or sterilize it.  But I damn well will do my best so that when Colin returns home he can stay a while.  If he spikes a temperature then we have to head back to hospital. Have bought a fair whack of wipes and chemicals from the supermarket to start this sanitizing. 
PM
Wow I have arrived and he has been told he could go out for 2 hours. Bit hard to go home as his walking is still limited with distance but he may be able to go home tomorrow for the day.  May even get discharged mid week.  I can't wait.  Just trying to think about how he can get down to the lifts and how  I can do the pickup.  We had a little picnic for an hour in the Domain.  I can tell you it is not easy pushing a wheelchair with flat tyres up the hill.  My work out for the day.
Planning on leaving mid morning from hospital and returning after dinner.  Can't wait.

we escaped

next time i need help pushing him up the hill

 

Yes I know it is summer 

What a difference a day makes...

The
Love is.... Being alive and well

I can't believe that in one day I feel like Colin is back with me.  A skinny version.  Returned from somewhere.  Eating and drinking and talking.

The dietitian.
When she came because he lost 8 kilos she leaned in and said "what's happening?"
I thought,  hello there,  chemo,  sick,  throwing  up,  doh !!
She said " forget about cholesterol!  Eat  cream  on your weetbix ,  chocolate  biscuits,  energy drinks and meal supplements.  Eat 5 times a day"  watch TV while you eat to distract you too.
Good grief wouldn't you love someone to say it is okay to eat like that.
He now lost 9 kilos but is fighting back by basically eating till he might burst.
Everything I offer him he says, "okay I'll try it. 
For goodness sakes after the last 2 weeks of spoon feeding and coaxing and difficult choices who would believe it? I laughed at him.  It was like food discovery. 
He enjoyed the chocolate bars.  I had to go shopping for them and the chocky biscuits because I just don't have them at home.  I would eat them!

Pm
He gained 500 gm yippee.
Well I am the expert on how to gain weight. Just don't know how to reverse it.  And chemo is the most drastic way to rid yourself of excess kilos.
Lunch was fish and chips and I should have taken a video of him eating.  He so enjoyed it.  Added chocolate bar which Lisa was witness to him scoffing and said she could give him good tips on gaining weight.
I was late after mum and I went to acupuncture.  Sony said I wasn't too bad after all that has happened as I last saw him in December.
He muttered,  " yes kidney,  liver okay,  worry mmmm ,  my you are so tough,  so tough"  he laughed.
This man can tell by pulse if I have eaten bananas,  yoghurt or coffee or not had enough sleep.  Don't ask how?
COLIN walked the whole ward,  160 M but the staff laughed when I announced we weren't taking home the walker for him. The physio put him through his paces this morning and stair Climbing and the occupational therapist gave him a fatigue chart.  I really think he knows when he is fatigued!

I have rushed around and stewed his fruit,  put together his won ton diner for tonight and had a quick Nana nap.  Got to get home especially early for family get together with nephew Dan back from Melbourne. So pleased I can leave Colin early today. He has gained heaps of independence already. Not long now.
My new friend Sandra D and husband are going home,  will miss them.

view from bedroom at home

Climbing out of the bath

Love is....... A life necessity
There is nothing with out it.

Nurse Sharyn
She has been Colin's nurse for many days.  She said to us yesterday how gentle and kind he is and can understand why his patients like him. He is very undemanding.  The staff tell him off for not calling them to take him to the toilet as it was dangerous on his own. He doesn't like to trouble people. 
Well he got a tiny bit demanding with me.  "you pushed the straw too hard"  he said when I  gave him a drink
I said "no more than usual,  would you rather do it yourself?"  no comment from him but I said sorry. 

Yesterday he sat up for a long time twice and could manage most things by himself.  I am not sure if he could walk if a strong wind was blowing though.
He is nearly falling over as it is and his legs and arms are like sticks.  Wish I was like a stick.  Bit of comfort eating was happening here.
Bit less for me to do but hand him his food and drink when heated now. 
Not sure how he will gain weight when he has to go nil per mouth and then they don't bring him any food after a procedure?  Every little bit counts at the moment.  Eat 5 times a day or more. He was so good I was able to leave hospital by 6.40 last night.  Needed to buy chocolate biscuits supplies!

The Bath
There was the sudden slide into the bath.  A long traverse of the bottom with lots of valleys.  Now it feels he is on his way climbing up the other side of the bath.
Let's hope.

PM
Have arrived to find Colin is sleepy but in good spirits.  When I talk he answers me back now which is better.  Got to be careful what I say in front of him.  Unfortunately his weight has dropped  again 59 kg after such a good day of eating your gifted food.  Today with 2 tests and nil per mouth will be hopeless as well.  Part of it is lack of fluids as he is off the drip.  Most of it is lack of movement.  Golly I am trying and doing less for him but plan is to get him to walk a distance every day.  Plan is not working.  Yet! All the nurses have said he was so sick.  Other patients  are so mobile it is frustrating  for me. 
As soon as he comes back from his scan  I am on food duty.  Mars bars and all.


Night

OMG Colin has been eating dinner for 2 hours non stop. i cant believe a person can fit in so much food. 
He is making up for it as feeling so much less nauseous. Now he realises he over did it. 
Honestly every time I turned around he was stuffing his face. 
Busy afternoon. 
Feeling good as he talked to Ray and Carol and managed so well. blood results unchanged though.

A great day with massive improvement.

Oncology massage with Linda

Home sweet home

Love is...... Being able to come home to my house (which I love)
I'm so lucky I can walk out of hospital,  smell the fresh air,  feel the sun on my skin,  look around me and come home to my sanctuary.
Very soon I hope Colin can do so too.
Well evidently the chemo sensitises their skin and the sun makes them fry so no sun.  OK.
I 'M not going to say I wasn't scared on Sunday night.  I was.  But I knew the staff had it under control.
Son Nick turned up in time to keep me company.  I am next to Colin but most of the time he cannot converse.
I am amazed that you guys turn up with food,  give me a ride,  phone me,  advise,  do a job for me or visit just when it is needed.  My head is a bit scrambled to try and plan.
Unconsciously thinking all night about the jobs and the next most important thing on the list.  But I am going with the flow.
IRD are the only ones who aren't lenient.  Still have to submit GST even if you are comatosed or die .  No extension.  Stupid.
See what today brings up.
Mostly boring hospital food and hospital routine.  Have to change Colin's bed sheets as they are covered in his hair! Not bald yet and he was pretty thin on top anyway.
Amazing
Must have had another premonition  moment because have arrived in hospital and Colin is way better.  Just getting the right antibiotics and time for the neutrophils to develop.  He said the registrar mentioned maybe HOME next week if things keep improving.  Have to be really careful at home though and just talking to other patients they are home for 3-10 days and then back again for round 2 of chemo.  Patient this morning said she just got back from 11 days at home and that was heaven.  I can imagine as that is how I felt going home last night and that was only 1 night staying away.
Fantastico


Dietician

Because Colins weight is 60.4 kg she said to eat chocolate biscuits.
Blimey no wonder i can't lose weight.

o

He just ate half a specialty pie and sweet corn soup, biscuit

Golly What Next moment

3 weeks - yesterday

Love is...... Just being here for him

Night:
What a difference 1 hour can make.  Colin is now on specific drugs for the lung infection which he could have developed  before.  Unfortunately the reaction to the AB's is,  it may affect his heart so he had ECG before and at 2am. His blood pressure dropped significantly low enough to warrant continued monitoring and back on drip for fluids.  78/56 is way too low and it came up a bit but still very low.  The nurses are great with action here.  Now he is on a cardiac monitor and being tracked downstairs continually. Make toileting interesting with plugs and trolleys and lines.  Had to temporarily stop the drugs till doctors assess again.

Blog
I see over 4600 hits so far so keep watching.  I may not be able  to update as the battery is going and looking at it on  my phone makes me cross-eyed at the small print. Sorry about spelling mistakes but the predictive text is a pain and the blog site glitches.  Thanks for the messages which we read  but can't reply to.

Going to be a long  day
PM
Doctors round think that the results my be wrong for the lung infection  but will continue with another drug orally due to the effects.  Another team will call to discuss but we have  not seen them today.  This week he will also have another C T scan on lungs and US scan on liver as a precaution but could be cocktail of drugs upsetting things. Colin is still very tired but improved from yesterday when he was very uncomfortable.  I notice  that his coughing is a little less violent so hope treatment is working.  We have both slept side by side today as there was little sleep happening last night.  I plan to head home after dinner as he seems better and I need a rest.

Night:
What an improvement.  Colin is more alert and not so nauseous.  Mary Y has brought  corn soup and noodles and he can have some soup.  Debbie and Rick bring fresh caught schnapper and rice and veges and he also eats some. I'm so pleased and can leave him for the night in the great hands of the nursing staff.
Crisis averted.  Lovely food will  be consumed tomorrow. So pleased I don't have to think about cooking as it is just too hard.

Up & Go - not today

Love is......... Togetherness

I asked Colin if he liked me staying and just sitting next to him and he said yes with a little smile.
That's okay with me.  Don't want him to be lonely.  Only I am wanting to spring clean and disinfect at home.  Bonnie made a wow job of the kitchen so that is a big relief.  Shouldn't get too dirty as I am not home to cook.
He is a bit low with tiredness today so has been asleep most of the time.  The marathon  obviously was to much yesterday. Managed the macaroni lunch but late.  Sister Anne and nieces were here and brought up and go and juices for supplies. 

Kevin,  Carol and Faye dropped in later and restock our supplies of up & go and some blueberries which have the good stuff for fighting the nasties.  Had 2 mini afternoon teas to try and bolster weight as he has dropped a little.  Having trouble keeping up fluids.

Dr Anna (cant pronounce her Polish surname- just stopped in and said the bronchoscopy has isolated the infection in his lungs so they can start specific antibiotics. 
This is probably partly why he is not bouncing back so hopefully there will be an improvement soon. 
Back on drip for now. plus an ecg.

Night:

I have decided to stay overnight. lucky i have an overnight bag packed. Colin has not been good today and is feeling unwell all the time and struggling to move. 
It is probably the lung infection so he needs help and company. It was good Nick bought a nice dinner of beef brisket and noodles for him but he could hardly eat.
Hardly any battery life left on the tablet so signing off for hopefully a little sleep tonight.

Cooking up a storm In my little rice cooker.  Going to try stew and pasta some time.

Dressed up and ready to rumble.

Love is........   Watching our sons grow up into lovely boys
Dressed
Colin thinks the Forisip is making him sick so he stopped it.
He is a bit better and ate my macaroni cheese and the small potatoes bacon dish for lunch.
So a cat nap while I stew portions of fruit and now we are off for a walk. Walked  40 metres a big milestone leaving the room.

No dancing yet but
I did a practice across his room the other day and he was
N
O
T
interested.
Hmmmm
Dr has been and it is carry on as usual so that is good news.  Nothing unusual today
Changed pillowcases as little hairs all over them. Not much to lose though.


Glenda has bought us a yummy chiffon cake and macaroni which will do tomorrow.

The walk has tired him out but what a difference a day makes. He is way more responsive and now
I can talk to him. He is still finding it hard to think and talk back but
I see my Colin returning to me.

Doesnt he look good on his marathon walk of 40 meters

Back to bed I'm knackered

Bonnie did an amazing clean/disinfect of my kitchen.
O
O

Give me normal?

Love is...... Oblivious
To what is going on around us.
Like the stink weather,  his illness,  daily routines

The bubble
Colin's room is his bubble.  I plan to get him out the door today. The daily routine,  plus meals which take 1 to 1 1/2 hours to complete and the interruptions from staff,  visitors,  phones etc
And his falling fast asleep funnily leave little else time for physio and mobilizing.  Golly only about 5 days ago I had to feed him and do everything as he was too weak to use his arms.  I thought to myself then,  I have to get his independence back.  Well he can shave and brush teeth,  wash face, , eat his meal,  walk unaided and sit in a chair for meals, put on his own slippers, help with showering.  Today the plan is to get dressed in his own clothes and attempt a walk out of the room.  Also see if I can trim his hair which he hasn't agreed to.
I am really determined but so is he and being really sick he can't be pushed.

I want normal.  Can we go back to before leukemia?
When life was trundling along happily? Someone flicked a switch and in an instant I landed in the world of hospitals,  with drips and drugs and taking temperatures,  blood pressure,  weight,  blood tests and oxygen readings. We have the benefit of understanding the medical jargon which is a bonus. All those procedures like the lumbar puncture and bone marrow biopsy don't phase me.  I like watching it.  We are trusting in the doctors and not reading too much but just going with the flow.  Reading or googling doesn't help or change the outcome.  Each patient is so different and this is a top notch ward and now is just a waiting game.

PM
Lunch didn't work today.  Sandra and Kevin dropped in mushroom for dinner.  They watched him eat his shepards pie and fruit  but just after they left it all came up.  Such a bummer as his weight is stable.  I cut his hair because it was so long and then showered him.  While drying his hair the towel was still hairy and as I rubbed more and plucked some I realised his hair was actually falling out.  I have managed to get him into clothes, a big step forward.
There was no protest this time.
Still not out the room door but the nurse is encouraging him to.

Sandra made us laugh

Give a little Blood

Day 18

Love is ......enduring

This feels like an endurance race and I am just starting it. But the LOVE IS getting me through the first post. I hope I can last the distance. 8 hours a day I spend up there and don't mind at all, just if Colin was more awake I could talk to him. It is like a nice job though and I look forward to stepping in the door now to see how the night went. Then carry on with all the prep. The partners of patients talk a ilot and that helps to get more information, support others and be on the same level of understanding. Of course they are still jealous of my Dial A Dinners and want a good look each meal time. I could have had a takeaway store at the door the other night as food was falling out of the little fridge. Cameron enjoyed his meal that night!

Blood
The life force being pumped into Colin daily
If you wish to help further please consider giving blood.  The ward go through heaps of it here and I am thankful for the donors who are so giving. You can really help to keep someone alive with this donation. Plus apart from a small discomfort it cost you nothing.
Your body is a blood factory and in  these patients the factory went kaputz!
I will go back when I get stronger but don't be put off by the questionnaire you must fill in.
It is weird but has to cover all bases. Just hacks me off when the lady asks about your medical health out loud in front of all the other donors and they all stare at you.
Going to ask her if she wants to announce my high blood pressure any louder?

PM
Colin is looking better in colour and more responsive and awake a little more today.I am tired and need a sleep. Jenny Wong has taken me for a nice lunch down the road and I have come back to see Daphne and Colin visiting. Gosh my Colin is perky compared with recent days and eat a scone and his meal replacement.  Good news his weight is up 1.5 kilos.Cant believe what we are doing is making a difference. Finally.
Night
Dinner doesnt go so well. not interested and feeling sickie again. oh dear. makes your heart sink. I decide to try an ice block.Coming up with ideas is draining.
Now we also have a social worker who i sent packing because we would rather have the visitors.Later is fine. Bonnie does pickup again to my car as I am exhausted today.

Same same

Love is... looking in to each other's eyes and reading it right.
Colin and I can always read what we are thinking by the look in our eyes
He says he is the same today. Bother.  Weight has dropped again even through he ate 2 small bowls for dinner of Mary Gin's great food .  Lunch today of Mary Youngs lovely minestrone soup was 2 helpings which he enjoyed.  You guys are so clever at doing impromptu food.  I have no ideas to even start cooking or shopping. Have emailed Nadia Lim for some help. Slowly Colin should recover from the chemo but it is not going to happen any time soon.
He has been infused with more blood which is common
Unfortunately I have just enjoyed Mary Youngs date loaf and biscuits with a cuppa.  Just needed the sugar.
As one of the partners here says we look strong but when we are alone and driving home we have our moments of tears. 
Telling us that other people with AML are alive and well is okay but there are so many types and I am learning that not one two  people are the same and every part of the treatment and resultant recovery will be different.  Onset late age is not so good. There are several types in the branch of AML.
We still appreciate the prayers and support so much.  We are so lucky to have friends as some of the people here have very little support.
Bad Card deal
I can't believe I am doing the hospital deal again. Some of you will know when Cameron was born at 32 weeks premature he was in SCBU where I visited daily for a month.  Still trying to maintain a life for 2 other young children was hard. 2 days after coming home he stopped breathing and ended up at Starship.  He continued to Apnoea for 6 months and resuscitation was necessary along with other issues.  Luckily we got through it with family and friends. Cameron is now 21. Here I am again

Visiting on hold till Colin gets better. Less people the better as another infection could kill him.
I have contacted those we need to see.

PM
Anita just stopped in to take me for a walk and a talk.
Talking is good.. Was a breath of fresh air in the domain and wintergarden.
Flowers were pretty but realised I shouldn't be there incase I infect Colin.
Lots of small meals, so a fortisip meal replacement , 1/2 slice date loaf and off to sleep again!
Damn his temperatue is up again. not enough white cells to fight infection yet.

Night
Colin ate part of the stew and the rest of some of Mary G's meal.  Never thought but the veges would be so nice for him. He is determined to get to a better weight but the problem is he is sleeping so much and so tired that he is losing muscle bulk.  A small stint of Physio but I am too soft as I see in his eyes he doesn't want to do the simplest of exercises.  Not even the cush balls for his hands.
I raced around and finished doing the dishes and gave him a shower.  We got it down to 6 minutes now. Bonnie picked me up to drop me down to my car stowed at Mary Youngs. $18 a day parking will mount up in 6 months and it goes against the grain to pay that.  I need the exercise and it will be only 20 minutes walk to and fro.  Just the rain is a bother and the darkness if it is not going well and I need to leave late. Nice to come home and cook for tomorrow and get on with the chores here.

Catching a lift in Sandra's B M W

Thinking all the time =headache

ODay 16

Love is..... In his every smile
And mine

Yes more smiles yesterday. :-)   Little less frowns.  He frowns when he sleeps so I can tell he is uncomfortable but he won't tell me. If the nurse askes he tells her everything.
Hence my raised eyebrows!
I keep my mouth shut and smile .  You know that is hard for me.

Dial a dinner
The partners of patients congregate in the small kitchen. Sandra cooks up a storm.  I tell them I have  "dial a dinner"  (I have lots of goodies to reheat to the max)
Sandra laughs and says "good on you"
One lady said  "really where do you get that,  I have never heard of them"
I tell her we have wonderful friends who can really cook and I need them
We  all giggle.
They wish they had the same. Lol

Lucky I got plenty of fat reserves.  Wish I could give it to Colin but he looks fine,  just can't afford to get any thinner.  People will think I am starving my husband, otherwise.
Complete opposite as I feed him 3-4 times a day and he is getting cross with me asking what he would like.  He says " I just don't know"

Blog
Keep watching the latest posts as I update late at night and through the day.
I have had over 3000 hits and traffic from Ireland,  UK and Aussie and USA where family and friends are too.

Shhhhhhhhh.
Don't tell him but after the physio called I have a plan to get him dressed and out his room door.  Golly it is only a few metres.  He is resistant.  Very stubborn sometimes.  He has gotten very good at ordering me around and getting me to hold his cup! Things are going to change shortly.

Dove update:
That's funny no cooing at all this morning.  Where did he go or is it the rain that made him move? 
Bummer,  he is still here

Today:
Colins weight has dropped and he needs to concentrate on food.  George and Mary visited with his dinner so with your better quality delicious food he may improve quickly.  Haemoglobin dropped a bit so if it goes below 90 he will need a transfusion. Susie has also dropped some food to me and had quick visit out to get supplies with Susie and Claire makes a  big  difference.  Uncle Alan,  Uncle David and Colin's mum come for a Visit while I am out.
He is tired out and just feeling so so.  I will get some more lunch and rest up too
So frustrating that this progress is sooooo  slow but we eye warned.
Now the temperature is up again so see why the night is like

There are so many stories here especially how rapidly this disease takes over the body.
Met a lady Christine who's daughter is 20 and really struggling.  Mother is staying In here constantly.  We are so lucky that we have so many friends and that Colin is so ameniable.  The supporters are talking and helping each other just by chatting.  So pleased that I can go home for a break eat bad food while watching TV and just chill out.

Wake Up..... Smell the roses

Love is..... Enjoying being together.

A good day.  Rushing around in the morning to prepare and look forward to seeing Colin at lunchtime.
Got to briscoes to buy a rice pot for the hospital.  EVEY'S Good idea of cooking in the pot is going to happen shortly.  Got one to make soup, steam,  do yow mei farn .  Bought a nutribullet this morning.  Get free magic bullet which I can use here for fruit smoothies.  Can't wait.
New chair arrived for patient when he gets home.  Looks cool and wasn't cheap but so comfy.

Sandra arrives just in time and Kevin is my taxi.  Didn't get much sleep so by 7pm I would be  grumpy and would be a dangerous driver.
There is less to do now.  Colin is not feeling well but managed to shave and wash face,  brush teeth.  I have to wait for the meds to work.
He eats quite well courgette slice and some of his favourite lemon lime and bitters . I'm so relieved.  As leaving last night I was so stressed with unexpected visitors and 2 hours to get him to eat dinner,  a cheese toasted sandwich. Julie Q gives me a shoulder massage which I love.
Mmmmmm

Eat,  toilet,  sleep,  eat,  toilet,  sleep etc etc,   that is the day..

Treatment:
Chemo ,  recover,  chemo,  recover,  chemo,  recover
We don't know how long this will take.  Every day is monitoring and deciding.

Positives ;
Haemoglobin finally up to  100
I think he feels a tiny bit better. But when the nurse asks he says much the same.
Better mobility and the diarrhea has stopped.
Colin is a little more alert when Pete and Julie visit and bring us some food for dinner

When I ask what he wants he is getting stressed and says "I don't know"
He knows he has to eat but his mouth is sore and the chemo has deaden the taste buds.
It seems when I show him the food he can make a choice.  While I am heating food the partners in the kitchen are swapping notes.
He eats 3 won tons and noodles and keeps it down.   Phew!

The physio visits and I tell her to do the talking as he doesn't listen to me.  He feels  tired after a simple routine that you and I would have missed it was so short and easy.
Cameron picks me up and we are busy cleaning the front door area of germs.
I am so tired now, must hit the sack.


Look at our beautiful garden and smell the pretty roses. At the moment. 
Might be looking a tad sad soon.

Baby Steps

Love is..... Spending special time together

The fat dove is cooing again but a little further away.  About 6 days ago it moved a distance as if to say
"I am here but know you need some space "
I kind of wait for him to sing and hope he finds a mate  and perches somewhere else
Cameron is lying in wait with the air soft gun.  Maybe that is why he is keeping away.
Don't worry they are only plastic balls not bullets.
Any way I'm not sure if he can aim straight at 6 am.
(heard them in Newmarket too)

My friend said her ex husband had been trying to kill himself for years and not succeeded.
She is so angry he wasn't the one to get this instead. 
He smokes heavily, is obese and eats badly.  Did  lots of drugs which naffed his brain.  Has diabetes.  Doesn't exercise. Lives on a benefit so we are supporting him!
We chuckle about it. I wish it wasn't us to. Sometimes I think,  it isn't happening

Colin  has been asleep so much I have things to say but must wait. The chemo fog they call it seems to be wearing off and he could think a bit more and speak a bit more clearly.  Plan for a shower and start mobilizing him with a view to get back independence.  He was still running a temperature but not getting the shakes or delirium yesterday.  Can come on so quickly though.  We partners are sharing information and stories and feelings but keep our physical distance because off germs.

AM
I have arrived to find him asleep because he has done a normal routine and even shaved himself,  brushed teeth and mouth wash completed.
Believe it or not that what comes easily is now tough going. 

PM
Lunch went really well and Cameron  and I think he should tick Large portions from now on.  Got to porky him up if possible.
Two Unexpected visitors but it is too hard even though he looks good,  you can not see what lies beneath.
Little blood cells trying to regenerate and do their job for the body. Asleep again
Whoops a sudden nausea moment.  Waiting for tablets to work so he can eat yummy shepherds pie my sister Debbie made.
just didnt happen

See the cute picture drawn by Denise and Jason kids Cameron and Zac.
The goodies killing the bad cells.  Love it.