Go home, stay home?

Love is.... Being able to relax at home

Weekend
What a wonderful weekend we have had.  It is like the last month was a dream for me.  Saturday I decided to join the belly dance class for their end of term lesson.  Bit hard having missed 6 months.  Funny the South African woman didn't notice I had been absent. Felt like life had returned to normal as I buzzed around shopping and prepared dinner for our family.  Later  Di and Phil joined us for dessert.  Lovely to catch up. Colin is enjoying  the sleep ins and is having an afternoon sleep for 2 hours daily.

Monday Day 24

We have spent  5 hours at Day Clinic and I am tired because I couldn't sleep last night.  Sitting around for hours doesn't help but I will go for a break when I can.   All is going well and blood tests are still improving.  Colin saw the registrar and the consultant separately and then the nurse doing a CMV study.  We take our lunch and eat while  we wait and wait.  Colin slept quite a lot  and today is the first day he has been so tired.  I am reminding him about eating and drinking and medications too. How do people on their own manage? He felt sick by the time we got home so I packed him off for a sleep. Phil is making us dinner which has worked out perfectly as I dont feel like cooking tonight. 

 It's  a bother but we have  to go to clinic 3 times a week initially.  That throws  this weeks plans out but hopefully he will progress quickly.  

He can't   mix with many people and has to be careful where he goes to for a long time.  At least next 3 months and till the  end of winter.  Going to be  a bit quiet round here for a long time. 

THANKS for all the support everyone.  I read all the emails and comments to Colin.  He smiles as he listens so it all helps,  heaps.  We  know you are all thinking  of us and wishing us well. It is comforting to know. Can't email back. Wish we could see everyone but not possible for at least 3 or more months. Maybe not till the flu season settles down. Sorry for all the long phone calls girls but it is so good to talk and touch base. Thanks for the help and the offers as well.  It is getting us through the tunnel to the light. 

The aim is to keep us all well enough and avoid another hospital admission acutely.  

Tuesday 

Colin is  not feeling so chipper today.  Not sure but it could be all the effects of the medication or less antinausea meds. After a sleep he is better and enjoys  friends visiting from Melbourne. 

 

Doug and Angela visiting from Melbourne 

This little piggy went wee wee all the way home

Love is...... Getting my Colin  back,  mind,  body and soul -  well nearly

Wednesday Day 19
Results are so good that Colin was allowed home today for the afternoon. While he slept,  I got stuck in at home. A great milestone.
Thanks everyone for all the prayers and good good wishes.  Must be working!
Keep up the positive thoughts though as we are not out of the woods.
Evidently 60% of patients return especially if  GVHD happens.
I had a big grin on my face as we trundled along the motorway home.
Julie bought us Vietnamese dinner and I cooked fried rice.  Was perfect and yummy after what I have been eating for a month

Colin has refused to shower at home though as it is too cold.   I agree. 

Thursday day 20

Dr Sophie has allowed Colin to come home and stay for  the  night tonight .  What a relief for me from driving back and forth.  Good progress so due for discharge Friday. Packing up Colin's room and bringing everything home is like shifting house. His and my  clothes and belongings and my small kitchen,  crockery and rice pot included.  I lay down in bed and loved watching him sleeping. It felt like a gift to have him home again. 

Friday Day 21

Back to hospital this morning for blood tests and a doctor checkup. A wonderful day to come home and just as I packed him into the car and hit the road it started to rain. Getting all our belongings  packed so we could carry it down the lifts and outside was a mission.  Next job was to buy a tablet dispenser to fit all the tablets and capsules into. 

 

Showing my bed which disappears into the cupboard during the day

How did we end up with all this to bring home? 

Neutrophils R A Go

By Love is...... A husband who cant talk back

Just joking,  He is having trouble speaking and when he does it sounds like someone else with a very deep voice.

Sunday   day 16
Great news Colins neutrophils bottomed at 0.09 for 2 days.  Today they are 0. 56 which is fabulous.  They need to be over 1.9 but I think if they keep climbing and all stays well he may be able to come home after another week.  It means 3 day appointments to hospital a week but just having him home and sleeping in our own bed will be so much easier. It doesn't discount being readmitted for infections or adverse reactions though. 

GRAFT VERSUS HOST DISEASE - GVHD

GVHD happens when particular types of white blood cell (T cells) in the donated bone marrow or stem cells attack your own body cells. This happens because the donated cells (the graft) see your body cells (the host) as foreign and attack them.

It is difficult to say who will develop GVHD after a transplant. We don’t know exactly, but somewhere between 1 and 4 out of every 5 people (20 to 80%) having a donor transplant will develop some degree of GVHD. Some people have a very mild form which doesn’t last long. For others, GVHD can be severe. It may even be life threatening in a few cases. Some people may have GVHD over many months, or even years.

What's scary is that Colin could develop graft versus host any time,  even after 2 years.  A serious complication.  If he can  get through the first 100 days without too many problems then he will pass the acute stage.

Wonderful to come home to;
*a shower i can stay in for as long as I like
*my beauty products
*semi washed dishes on the bench - NOT
*a warm house
*open living spaces
*my own bed
*My kitchen and pantry
*peace and quiet (no alarms going off continually)
*Cameron at home with Lucy the cat

MONDAY day 17
I feel revived after a Better nights sleep at home.  Colin is feeling better too and throat slightly less  painful as the neutrophils have risen to 0.80 fantastic. He has a dry irritating cough which kept him awake but xray is clear of the lungs.  On his walk around the ward this afternoon I noticed he was walking at a faster pace.  Last few days he was walking so slow I felt like a snail. I have managed to cook dinner at home and have arrived at 1pm all sorted for the rest of the day.

Tuesday  DAY 18
Still progressing slowly but well. Finally had the NG tube removed and ate his dinner so much more easily.  Big smile on his face when it came out. Will have to work on gaining weight.
His tiredness is from continuing nights of broken sleep.  Neutrophils are 1.4 which is amazing.

Super gold card day

Love is.......being there for him

Thursday
Happy birthday
Happy Birthday Colin
65 today and he is in hospital but lovely  staff have come in and wished him the best
They even offered to push his bed down to the ferry for his free ride to  Waiheke.
He is feeling a bit better today but bit weak.  See how the day pans out.
I did not get time to make a cake which he couldn't eat or organise the present.
Getting the boys to look into it.
Slow progress.
Pleased to announce he ate all his meals and supplements and kept it down today.
After the shower and a hair wash,  all his hair has rubbed out and it is everywhere. Have changed the pillow cases twice.  Lucky his hair is not shoulder length! It even fell into his dinner. Now looking very bald again.

Thanks everyone for the good wishes

Friday 2 weeks since donor transplant

Colin's throat is really painful but more drugs will help.  Talk of a pain pump but not quite there yet.  Consultant said that his platelets are rising and the neutrophils which are rock bottom shouldn't be far behind.  Last night  his temperature rose but just dropped back before hitting 38 degrees.  Thank goodness because it would have been blood cultures from 3 lines and his arm,  urine sample and antibiotics for a week.  If he can stay along these lines without spiking a temperature  then going home won't be too far away. But we won't be counting chickens before they hatch. I have to keep trying with food as his weight is dropping.  He hasnt given up eating my concoctions yet though.  

Pm

He cant talk and sounds like a girl if he does. Wonder if his sister' s donor cells are taking over?  How things change so quickly.  His temperature  is threatening and his nausea returned and blood pressure high.  This is due to meds on meds so more tablets.  Hoping things settle tonight.  Unfortunately our friend David is very unwell and it is quite  emotional here. I wish for a better  tomorrow.   Colin  did spike a temperature and is on a small cocktail of drugs.  He wouldn't be able to drive on these mixers. 

Saturday 

Pleased to report Colin is feeling a tiny bit better today.  Think those antibiotics are working.  He wasn't Coughing up so much phlegm.  Couldn't get a good sleep the both of us.  Nursing him 2 hourly and pumping in fluids making him go to the toilet ,  machine beeping all night and cant get back to sleep. His platelets are still climbing,  neutrophils are low but not dropping,  haemoglobin low which is making him tired.  I have just packed him off to bed again after a shower and  change of clothes and pleased  he  managed lunch 

A week on from transplant

Love is.... An uncomplaining husband

Monday
Day 10
I hear the doors slamming one by one as the breakfast is being delivered to the patients. Its only porridge.  Then menu delivery and weigh in before day starts and bloods taken then he is hooked up to his 2 x daily cyclosporin immune supressant. He will continue this drug for at least 3 months. If Colin can't swallow then he has to have tube feeding. I have had a better nights sleep as was tired and slept through most of the night disturbances including the incessant beeping of the call buttons.  This is because patients are hooked to their drips and when they run out they must call the nurse to attend. One drip needs about 3 calls over 30 minutes due to flushing lines etc. Colin often silences the machine as it is annoying if you are watching a program.
One nurse said Colin looked like a visitor except for his feeding tube as he looks so well.  I am hoping it continues.
His throat is sore and they crush the tablets in a coffee grinder and give him via the NG tube.  Some will be given IV.
When the meds kick in he is able to manage breakfast and a soggy French toast,  not crusts  though.
Last dose of  methotrexate tomorrow which is to prevent Graft versus Host disease.  He will go down hill again from that med. Lets see what happens next. 

Tuesday Day 11

Colin is tired today and the sore throat is persistent and due to worsen.  He is still eating soft foods and only slowly losing weight.  His neutrophils have dropped below 1 so have to take care incase of infection.  I am gloving up and doing extra cleaning.  Probably will need tube feeding by tomorrow but i will keep trying to make food for him. Otherwise he is in good spirits and appears well.  Ducked down to Newmarket again to get supplies for won tons which I'm so pleased he ate.  Have to be extra careful because there are so many restrictions to the food. All the nurses say he is doing really well.  Friend David has had a really sore swollen mouth and not eaten for 3 days.  I am trying to avoid that for Colin.   Unfortunately an ulcer has started on Colin's lip so i hope it isnt worse tomorrow.  I had to come home to get some sleep,  do the washing and go with Cameron to an appointment.  Great i can wash my hair,  have a decent shower and change my clothes. Another day tomorrow. 

Wednesday 

Talk about all go to custard.  Colin vomited up his breakfast and a small lunch.  Very nauseous today and nothing is able to be kept down.  Let us hope tomorrow is a better day.  Anne visited but he slept through it and Kevin Lee dropped in to say hello.  Yesterday Colin's hair started falling  out and today it is all over the pillow. 

This is the bone marrow collection and separation machine. It is set up for a platelet transfer here. 

Along the same lines

Love is...... Hoping his hair doesn't fall out too soon

Friday
Day 7
A week since BMT
All much the same and he was allowed out for a while.  Too hard to get car etc so we went for a walk in the Domain and it was a beautiful day but brisk. He was all wrapped up and I stayed the night.  Cooked 2 big lots of fried rice for friends and the staff who enjoyed it.

Saturday
Day8
Colin has woken with a sore thoat.  Just what is expected but we don't want it.  Bummer.  Weight is steady and eating well so I am pleased about that.
It is impossible to sleep here but Colin goes back to sleep after every interruption. I long for my own bedroom. He likes the company.

Im allowed to take him home for a few hours.  Fantastic. Nothing like being home. Guess who got on the computer?  

Sunday

He is not that happy.  Score throat as expected started last night and he has woken with it painful and dry.  After liquid paracetamol it is better and he managed porridge,  ice block,  iced water and juice.  I made congee in my rice pot and he enjoyed it with mashed egg as well. Have made yow mei rice tonight and will see if he can manage to eat that.  Just hope it doesn't get worse or he will have to be fed through the NG tube.  Nick and Julie visited too. 

Another day at status quo

Love is...... Missing each other at night

Wednesday
Day 5
All quiet on the home front as Colin continues on the same lines.  Another partner said it is like being in prison.  I said dont think of it like that.  We are in  a wonderful  ward and the care is exemplary. Staff and people are so friendly.  We are cocooned in our room and I clean up,  cook and watch dvds and  work on my tablet, entertain him,  read emails,  exercise together.
Today Colin had 2 visitors,  Glenda and cousin Anita and Peter.  Anita brought us some hearty soup and we had that for dinner with rice.  Late home tonight and didnt have time to help him shower.
Nurse Sharon said the bloods will drop even though they are not too bad.  Things are going to turn pear shaped.  Bugga.

Thursday

Same same but bloods are dropping slowly.  Colin still really good.  I spent most of my time talking today and not much with Colin so will stay tomorrow.night. Lunch and chat with Carol in Newmarket and a police chase and arrest outside our cafe.  Nothing to report is good,  isnt it. I looked with the torch in his mouth and  so far no ulcers. 

Yummy soup made by Anita

10 minutes on the bike

Probably a stolen car.  Daily excitement as police handcuff and arrest them. 

A Better day

Love is..... A non grumpy man

Sunday
DAY 2
There has been a slow improvement because the nausea is subsiding or the medication is working perhaps.  Colin gained back some weight as he ate yesterday. Today my boys brought up jook that mum cooked and Colin really enjoyed it and a boiled egg.  Simple pleasures.  So relieved to see him eat.  The specialist said there may be a dip on day 4 or 5. I always think that "no,  Colin will be fine"  but something always happens.  So not holding my breath.
I will go home for a sleep tonight while it is all going well.
Shortly as the graft cells take and his immune system is depleted he will go through fevers and chills.

As I drive home,  I am anticipating a night at home watching "dancing with the Stars"  and a good sleep in my own bed. It is sad to leave Colin but I know he is in excellent hands. It feels like I went on holiday for a few days,  20 minutes from home but the hotel was a open door policy with people marching in and out of our room.  TV dinners and trying to cook simple food in the microwave or sandwich griller and sanitizing everthing a million times.  Nice to get a break from that infection palarva.  Did enjoy a walk around to Parnell and back with sister Debbie this afternoon seeing it was  a lovely day. 

Monday 

Day 3

I had a blissful night at home but didnt do much.  Colin didnt have me there to negotiate a stay on the Naso gastric tube unfortunately.  I dont think he will need it but we shall see.  All going really well.  He is happy and mobile  and not so tired.  Yayyy!  

Tuesday 

Day 4

Colin is fine.  Underlying nausea is manageable so he is eating 3 small meals a day and weight is steady.  He is really comfortable and even exercising around the ward.  

I sleep much better at home and prep food in the morning,  take in lunch and stay to make dinner then home by 8 pm.  We are aware that his  bloods will  drop to rock bottom and that can change any time. 

The ward is full to the brim and there are 7 patients in out lying wards.  Scary that there is so much blood cancer around.  Everyone has a variation of the theme and the doctors and nurses are run off their feet.  Lucky Colin and David D are well and dont need much care. 

I 'm not sure if they can stick any more tubes or needles in 

Day 1 post BMT

Love is.... Seeing past the grumpy

Saturday
Colin ate his full meal of beef stroganof last night.  Yayyyy! Not so yay is the effects of the chemo.
Chemo fog  makes him hazy,  exhausted and forgetful. I am staying in hospital with him and getting him to do mouthwash,  eat,  exercise and body care.  He got so grumpy with me when I kept asking him last night to rinse his mouth.  Really important to stop the ulcers. When i told him he was grumpy he laughed. Nurse Sharon was trying to find out when he took his tablet she left.  I had ducked out for hot chocolate with Daphne and Colin and a good catch up.  We discovered he had thrown it out by mistake!
It was anti nausea so he really needed it. His legs are buckling from under him and he has lost 3 kilos already so I have my work cut out for me today. I felt like going home today but was too tired from the lack of sleep. 

Colin's sister Leonie and husband Phil came to say good bye today as returning to Wellington tomorrow. 
Walked to 277 with Sandra so we could get some groceries.  Needed the outing and was a warm day.  Lovely to get away for a break. 
Finally Colin is himself tonight.  Less sick and more alert for a short while.  We had Pokeno sausages  for lunch and he really enjoyed them. 
He is snoring now so will have a better sleep. Finally I have my Colin back,  it was like he went away and his personality had changed. 
Good night.

She is making me eat but I can hardly keep my eyes open 

DONOR DAY - 0

Love is...... A Sister giving bone marrow cells for transplant

Donor
Thanks to Anne who has had to inject herself for 4 days,  endure achy bones,  4 hours of collection,  needles in the arms.  What a massive commitment.
Colin is so lucky to have the donation. And she was so relaxed about it.

Friday
Colin had a bad day yesterday and a tough night but thanks to a nurse Becky who managed to chart another drug,  his nausea has subsided. Not gone away but the drug was sedating. That's okay as he had a good sleep but bit whoosey this morning.  Just hoping it stays good and he can eat today. On about 4 drugs for anti nausea and a egg cup full of others for prevention of side effects. 

The percentage of stem cells is high so they will take better.  Like planting seeds.  Well done Anne in producing such a good sample. 

Chemotherapy last week was given to target host tumour cells and destroy the normal blood forming cells. This leads to disappearance of red blood cells,  white  blood cells and platelets causing a risk of bacterial,  viral and fungal infection.  Blood cells recovery is dependent on the new graft taking in the body,  a process that  may take several weeks 

Cyclosporin an immunosuppression is given and continued for a while after discharge.  Side effects aren't great. 

Comes in a little red bag

Rosie nurse specialist and Sharon setting up

Bone marrow 

That came from me yesterday 

Getting the goodies to make me well

Countdown day —2 and --1

Love is... Being able to "Live life out loud" 

Saw this statement on a truck as we drove into hospital this morning and I am doing that.  Especially with this blog I couldnt be any louder.

Day —2
Wednesday
And so it begins.  Colin is really not feeling well this morning.  Feeling exhausted and nauseous.  These are some of the side effects of the chemical cocktail inside him. We are prepared but I am a little  disappointed that it has come on after such a good run.  Driving in we have struck an accident  on the motorway so exit to try and get there in time for the next chemo treatment.  I have to walk him up to the ward.  Thanks to a relative I can get a park near by. It is a blessing. The walk is good therapy.  No wonder his blood pressure is up.  Feeling so unwell he is unable to do anything himself.
He will now stay in hospital for the duration.

Was nice last night to be home together and get agood nights sleep in our own bed.

I left the hospital in the torrential rain,  jumping over streams of running water in the dark and dodging the slippery leaves under foot.  Colin ate very little today and voiced his feelings which was very unusual for him. A very sick puppy today.  I have left him feeling a bit better  after having sampled the diner.  Settled  on peaches and jelly instead.   Medication has settled in to make him a bit more comfortable.  He is in the right place and had a fabulous nurse over this week. 

Thursday —1

Colin feels better today. Not so nauseous but tired.  Ate some lunch but appetite has disappeared. I cooked up a storm lastnight and this morning and left the fallout for Cameron to tidy.  Chinese chicken and sweet corn soup for dinner and macaroni cheese for lunch.   Have carried my rice pot and food for the next few days with me.  Luckily the rain just holds off till i walk nearer the hospital. My arms were sore.  Just made a trifle for us and David and Sandra to share. 

Night 6pm and Colin has woken nauseous again.  It is taking heaps of meds to try and get him right.  No food tonight. 

Tomorrow is  D day. 

Last week out and about 

Anne the donor.  Fresh from 4 hours of bone marrow collection.  Taken from her left arm and blood returned to the right wrist. 

Hopefully enough for infusion tomorrow.