He couldn't stay ...

The love of my life died on the last day of our Summer ... 28 February 2009.

We spent three weeks in hospital together and then with the help of our Palliative Care nurse, I was able to bring my hubby home for his final few days.

He was doing it hard, but he never stopped smiling and communicating with family and friends.

Early Saturday morning, he had problem breathings, and after administering him his meds at 3 am and 4 am, I phoned our Palliative Care nurse for advice. He talked me through the next hour, and then it was all about waiting ... waiting for our kids to arrive.

My gorgeous man was doing it tough, but he wasn't ready to give up and he kept gasping for breath and doing everything in his power to stay with us. Our kids arrived just before 11 am (they'd flown in around 10 am) and we were by his side till he took his final breath 1 1/2 hours later.

He acheived his goals to be at home and to have the three people he loved the most in this world holding him tight.

Our sadness is so heavy I'm not sure how to survive the weight, but I'm pleased my hubby no longer has to live with this horrible disease!

Thanks to the many bloggers who've been giving me support over the past year ... it was truly appreciated.

Visitors

We've had family from New Zealand visit and that was good for us both. My hubbies Mum, one of his brothers and his wife came for a week. It was nice to catch up with them and hear stories from home. The hard part is when they leave ... my hubby gets very upset, coz he's left wondering if he'll ever see them again. I think that's why he's not sure if he wants any more family from New Zealand to visit.

Our kids are due back in about seven sleeps ... can't wait! It's tough for them having to leave their jobs and friends, but they both want to spend as much time with their Dad as they can. I can't begin to imagine how tough this is for them.

We're noticed that our local friends don't call as often as they used to. A couple still do ... but it's getting hard for them ... you can see it in their eyes. They love my hubby (and they've all worked for him also) and I think they're finding the sight of him suffering is just too hard ... which it is!

Heat Wave

Our state, is in the middle of a heat wave, with last weeks temps in the high 40's and this week we're expecting high 30's most days. Sadly many people are dying from this heat ... mostly the elderly, sick, with children and animals are also at risk.

My hubby can't go outside ... he's held up inside, under ceiling fans and with the air con blowing. He needs the cool air blowing on him to help him breathe ... that's even while wearing oxygen. The dry heat exhausts him and makes him gasp for breath. Our fear is a power cut. We have two cylinders of oxygen, so that's the oxygen taken care of ... it's more about how to get cool air moving. Think if that happened, I'd get him in the car ... somehow ... and just keep driving (with the air con blowing full) till the power was back on.

Our doctor has been to our house twice now ... which is so sweet of him, as my hubby wouldn't be able to go to the clinic to see him. He's been through the many pain meds my hubby is on and made adjustments. It really is a personal way to meet with your doctor, instead of in their rooms.

I've realised that a lot of the time I'm feeling numb ...
I think I'm already grieving ...
Grieving for the things my hubby can no longer do ...
Grieving for the amazing life we had ...
Other times my stomach churns till I'm sure I'll be sick ...
But I think this is also a sympton of my grieving ...
I don't like grieving ...

Life now ...

Things have changed and my hubby is now almost totally dependant on oxygen. The cancer has spread to his lungs and is making inroads into his stomach.

Life now seems to be about managing what we are facing ... damn hard.

My hubby seems to be in pain or discomfort more often than not ... although he is wearing strong 'pain patches' and having regularly doses of oral morphine.

He rarely ventures outside, as the heat upsets his breathing, so he's gone from being an outside person to being confined inside.

His feet, ankles and legs swell to almost bursting ... and this is all part of the this revolting disease, where fluid can no longer be absorbed or passed, as it is with a healthy person.

His shoulder blades poke out like he's been starved ... his arms are so thin I feel scared they might snap. He's thinner than I've ever known him ... and that makes we weep!

He keeps trying to be positive, but it's getting harder and harder.

... but as always there's positives ... and the biggest one for me is that our love is stronger than ever ... but this also makes me cry more, as I can't stand the thought that he won't be a live part of my life for much longer.

I want him

I need him

I love him ...

but cancer is taking him from me

and neither of us know how to stop this!

Happy ...

Happy 2009!

Thanks to all the people who've given support during the past 12 months. It's incredible to feel the support from so many people I've never met and probably never will! Thanks so much ... it really is appreciated!

Have an awesome 2009!

Family and visitors

Our kids have been staying for a week or two now and it's been great having them here.

A close friend of my hubbies ... a guy he made friends with while at primary school ... and his wife have been visiting from New Zealand.

Local friends, many of them Kiwi's living in this same area in Australia, visit most days to see how my hubby is doing. It's a tough time, as apart from his time in hospital and his not feeling very well, it's also the time his managers, supervisors and contractors have returned to work ... without him. I can't begin to imagine what that must feel like for a man who really enjoys his job as GM.

We're so lucky to have wonderful kids and wonderful friends.

Hubby home ...

After much discussion, it was decided that my hubby would have an endoscopy on the Monday and it showed that the tumour had narrowed his esophagus in two places. We then had a discussion with the gastro doc, who was confident that the placement of two stents was the way to go. Other discussions with our oncologoy team, raised areas of concern, but finally my hubby agreed that he would have the two stents put in. This was done on the Tuesday ... and a nervous time it was. Fortunately it all went well and he recovered with no obvious affect to his lungs.

We were still hoping for him to be released on christmas day, but the docs said he had to stay till boxing day, so that he could be guided through the ... clear fluids, full fluids and soft food choices. On christmas day the four of us went out for three hours. We found a fish and chip shop, bought a feed, then found a spot by the sea and enjoyed our dinner. It was horrible to see how quickly my hubby was exhausted by his outing, and we had to return to the hospital, so he could have pain relief.

On boxing day I left home about 7 am, so I would be at the hospital for the doctors rounds. Unfortunately my hubby's docs were on leave, but we still had a good discussion with the doc who saw him. We left with a pile of liquid morphine, morphine patches and other stuff. The letter for our pallative care team about my hubby's need for oxygen wasn't there ... but hopefully that will be followed up this week.

By the time we got home, my hubby was exhausted. Our daughter had the oxygen machine running ... so he sunk into a chair with that and liquid morphine.

That night was a horror. We didn't seem to be able to get on top of the pain, and my hubby became quite distressed. Around 9 am I phoned the emergency pallative care number and our nurse phoned the duty doctor for advice. She organised stronger liquid morphine, to be administered more frequently and a stronger pain patch. This was wonderful, as all we had to do, was collect the script, take it to the pharmacy and pay for the drugs.

The second night, my hubby had a far better rest and although I needed to massage him once through the night, his 'bones' (shoulders and back) didn't seem to ache so much. He also got out of bed and slept in the recliner for a few hours, so that pressure was being distributed differently. My hubby was amazed he'd slept so well ... and his morning was a good one. He sat in the wheelchair on our back deck for a few hours, enjoying the sun and giving our son and a friend who's visiting from NZ, instructions about what needs doing to our back area. We think he may have overdone things ... but it was great to see him enjoying the fresh air, family and friends.

Here's to tonight being similar, or better, than last night!

Hubby still in hospital

It's three week and my hubby's short visit to hospital continues to drag out. The 80+ km a day drive from home to the hospital and the 80+ km a day drive back is starting to take it's toll, but not as much as my need to have him home ... my need to get him out of that place and back to things that are more familiar to him.

The 'talc' mix was put in his lung last week and the tube removed on Friday. His x-rays showed two small areas with fluid/air in them, but the lung doc is happy with how the scaring has worked.

On Friday a doc from the Gastro department arrived and said he wanted my hubby to have an endoscopy done on Monday, as the problems he's having eating and holding food down (soft, minced food) may mean that the tumour has thickened, and he may benefit from having a stent placed in the esophagus. This all sounded scary, but good, but today my hubby's oxygen levels have dropped ... we're not sure why ... it maybe related to the infection he has at the site where the tube went into his lung ... no one seems too sure. But anyway, due to his oxygen levels being low, he may not be able to have the endoscopy done, as the risks would be too high. I'm not sure where this leaves us with regard to his eating ...

I just want to take him home!

Our daughter arrived last Wednesday and it's been great having her for company during the drives to and from the hospital and at home during the short evening, before we fall exhausted into bed. She brought her dog, Charlie (a moodle - maltese x poodle), with her, and Wilson and him are having a great time! Our son arrives on Monday ... and then our family will be together for christmas ... just gotta get hubby out of the hospital!

15 December 2008 - 29th Wedding Anniversary

Wow ... tomorrow is our 29th wedding anniversary and I love my man as much now as I did when I met him 30 1/2 years ago!

I wish everyone could have a marriage as wonderful as ours.

We've done so much together, been to many places and experienced so many things.

We have two gorgeous kids, who've grown into the most amazing adults.

We're truly blessed!

Hubby still in Hospital

Two weeks have passed, and a few things have happened, unfortunately nothing that was really planned.

Last Tuesday a large tube was put in his left lung to drain the fluid. Nearly six litres was removed and this was very painful. The lung doc was pleased with the x-rays, that showed hubbies lung was working hard to expand. My hubby was distressed with the pain, and I've got to be honest, seeing him in pain is something I deal badly with.

Hubby was also coughing a lot and bringing up phlem, which we were told was good. Then he coughed and said it felt like something had 'clicked' in his neck. His face had started to swell and by the time I got a nurse (within a minutes) his neck area was very swollen. This caused a panic and three doctors were called in. Our oncology doc said the tube had to come out, as she was concerned something bad was happening. She quickly removed the tube and then stayed and talked us through many options ... scary stuff. She was worried that my hubby's neck would continue to swell and that his breathing was compromised. She asked us about resuscitation and recommended we mark my hubby's file 'not for resuscitation' ... we had discussed this, but listening to a doctor talking like this was something neither of us coped well with ... and the tears fell. She asked if I wanted to stay the night in my hubby's room, which was nice, as I'd already decided I wasn't going anywhere.

I slept on the reclining chair ... it was comfy and I did get some sleep ... well a little sleep. My poor hubby barely closed his eyes, as he feared they'd not open again. Every time he started to doze, he'd 'jump' as his subconscious woke him agin.

The morning came and his breathing was still good ... a huge relief.

More x-rays and then more problems. It was found he had a pneumothorax, which is when a hole develops in the lung, allowing air to escape into the space between the lung and the chest wall and collapsing the lung. This had to be corrected by another tube being put into the same area to remove the air. Doctors rushed in and after three attempts the tube was in the right place. My poor hubby was exhausted, tearful and in loads of pain. He was so over this whole hospital thing, I was worried he'd discharge himself. The nurses gave him more and more morphine to help him relax and to help his pain. He was given patches and needles.

Over the past three days, his pain levels have decreased a little, and he's trying hard to keep on top of the pain, by asking for morphine rather than waiting till he's already in pain. He's still not sleeping well ... and he's rarely eating ... both worry me heaps.

Now we wait for the hole in his lung to heal. His lung doc is confident this will happen quickly and still wants to do the 'talc' in the pleural space thing, to get this area to scare and therefore prevent fluid buildup. My hubby will allow this, as long as the tube he currently has in, can do the job. Due to the pain caused by these tubes, he's not prepared to have another one ... and I don't blame him!

Week 170 - Adjustment 23

November 2008

I've been real slack taking photos ... so these are nearly a month late, but hopefully they will record some progress.

Front


Left


Right


Gap closing over impaced canine


Open Bite


The 'openness' of my bite is annoying, but I've been reassured it's part of the 'gets worse before it gets better' stuff.

Hubby still in hospital

Unfortunately what we'd hoped would only be a couple of days, has turned in to a week ... or more.

My hubby's bone scan came back almost clear. There's two marks behind one eye, but his team don't appear too concerned and have suggested it may just be marks on the scan. The CT scan shows that the tumour has grown ... which we expected, and has moved into the stomach area, but not by a lot. There are swollen glands in the stomach, but they said these weren't to bad. His team were happy to report that his liver is clear at this time. The chest x-ray showed the left lung flooding with fluid and the right lung with a smaller amount of fluid. Fluid removed from the left lung contains cancer cells, but we've not sort clarification of this yet ... will try and be brave enough to talk about this with his team tomorrow. Surgery is not an option, as my hubby's oxygen levels and breathing are not great enough for this. Instead we're to see a 'lung Doctor' on Monday and hopefully s/he will agree to put a tube in the left lung, so that it can be drained more easily.

A stressful time, but if we can achieve easier drainage, then quality of life will be easier to achieve.

I just want my hubby home! To be honest, I want much more than that, but I've got to accept that somethings we just can't have.

Family begin to arrive

One of my hubby's brother's, and his wife flew in from New Zealand on Tuesday. It's great to see them!

Our daughter flew in on Wednesday. She's exhausted, as hasn't slept since she finished night shift. Sooooooooooooo great to have her here.

We're still not totally in our new house, but Wilson and I slept here on Monday night. Two friends stayed with us, due to my hubby being in hospital. It was strange being in a new place, but I woke up feeling good, which I take to be a positive!

My hubby is breathing better, but has limited energy and seems to be sleeping more and more. It's really hard to know what to do and at times I just have to walk away, as it's breaking my heart to see him change like this.

Our son is in Perth for the next few days with one of his bands, and he flies in on Sunday. Them more relations fly in from New Zealand on Monday. It'll be tough on them, as that's the day my hubby will be admitted to hospital, but hopefully only for a couple of days.

Two litres removed

My hubby was admitted at 7.30 am on Monday and by 9 am had, had one litre of fluid removed from his left lung. The Intern who did the surgery under the guidance of our Doctor, said the fluid came easily and recommended that if the x-ray was good, my hubby should stay in hospital and have another litre removed the next day.

The x-ray showed fluid around both lungs, but the left lung is still the worst. My hubby showed almost instant improvement with his breathing and general well being, so it was decided that he should stay the night.

The following morning at 7.30 am I was back at the hospital to support my hubby through his third fluid removal surgery. Again it went well and the x-ray showed a tiny improvement.

Later that morning we spoke with our Palliative Care nurse who talked about alternatives to having fluid removed. These included using talc to 'glue' the outside layer and lung layers together or having a tube inserted into the area between the lung and the outer area, that's left in place, so that fluid can be removed more easily.

He followed this discussion with a talk to our Doctor, who phoned the Oncology Department at Queen Elizabeth Hospital and discussed options with them.

We went home that afternoon and our Doctor said he'd phone within two days to let us know what QEH though of the options.

The following day our Doctor phoned to say QEH were prepared to admit my hubby on Monday (the day of his 50th birthday), to do a scan (something we'd planned to not have, due to my hubby being diagnosised as terminal), and then to do the talc or tube ... or something. We will have many visitors from NZ and Oz here, but my hubby was feeling so much better after having two litres removed in two days, that he had no issue deciding going into hospital was his best option.

So here's hoping that the scan will allow something to go ahead! Loads of positive thoughts please!

Second Surgery on Monday

Our Doc looked worried as soon as we walked into his office on Thursday. My hubby had only walked the short distance from the waiting room to his office and his breathing was heavy. After checking his breathing and the usual 'knocking on his fingers' around his back, our Doc said there's fluid in both lungs, but the left is still the worst and he's prepared to take more fluid from it, if that's what we want. We both agreed it was! He gave us a choice of any day from the Friday, till the end of next week. We chose Monday, coz that means if he decides to take another litre off the following day, it will be all over by the Tuesday, which we think is the day our first visitors arrive from New Zealand.

We're to be at the the local hospital by 7.30 am on Monday morning and our Doc is planning to insert the needle to remove a litre of fluid, around 8 am. He asked my hubby if his Intern could do the job, assisted by himself, and my hubby agreed. Our Doc thinks this would be a good one for his Intern to do, as there's a lot of fluid, which means it's easier to find.

Our Doc said that depending on how my hubby copes with the one litre removal on Monday, he may or may not take another litre on the Tuesday. We're hoping it all goes well and that another litre is taken.

Here's to my hubby coping with the fluid over the weekend, and then finding great relief after the surgery on Monday ... and hopefully again on Tuesday!

My Hubby

At his Docs appointment last Friday, it was mostly good. His pain meds have been increased from 5mg to 25mg, and are mostly helping, but I'm noticing that now (nearly a week later), they're not taking care of all his pain.

My hubby still isn't able to go to work and I can't help feeling that he may not be able to go back again. This is heartbreaking, but he's better to stay away and feel better, than push himself to go and feel exhausted. A new GM has been appointed, and that's hard for everyone involved, but we have to accept that it's necessary.

Food intake is minimal and although he's always had a fantastic appetite for nearly all types of food, he's totally lost interest in the stuff. Our Doc said this was problem due to toxins being put out by the tumour (or tumours). He's trying to drink to keep some strength ... protein drinks like Ensure Plus and he's making fruit smoothies ... both of which I'm sure do help. I've lost my cook ... she wails in self indulgence ... but she knows that loosing her cook is nothing compared to what the future may hold.

Our doc has agreed to take more fluid from around my hubby's left lung, and may have him stay in hospital overnight, so he can take one litre of fluid on one day and one litre the next day. We're trying to delay this being done for as long as possible, as family and friends from New Zealand begin arriving next week ... and some will be here for around two weeks. Hubby's 50th birthday will be both a fun and challenging time. Great to see so many members of our family and friends, but it will be a big shock for them to see my hubby, coz when we visited them in New Zealand last July/August, he was looking so much healthier. My hubby is going to have to find the strength to disappear to our bedroom for quiet times whenever he needs them. It will be tough ... but we will get through this!

Today my darling man is looking pale, tired, and grey. Not a good look! He's also frustrated, so damn frustrated, coz he wants to be working around our place next door, but even walking over there is exhausting and requires him to sit down. Cancer is so damn cruel!

Our good friend James is still working for us everyday, but we're going to have to let him return to work, as don't want to upset the balance in any way. He's loving working around the house and would happily continue to do it for a few more weeks, but unfortunately we can't afford that luxury. We do know that after James returns to his real job, he will join our many friends who come round to offer help at nights and weekends. We are very lucky people to have so many great friends.

We go to the doc tomorrow and think it'll be time for more decisions re fluid removal. Plus another increase (or change) in pain meds.

Photos

I've loaded photos of our house and the beautiful Wilson, to an online photo storage site. Here's the addy ...

http://community.webshots.com/user/kiwikaz

Please check them out and let me know what you think.

Week 170 - Adjustment 23

My ortho is happy that my upper right gap, over the impacted canine is continuing to close.

He's not so happy that my bite is still open and appears to be catching on a back molar, right side.

Powerchains were removed and both archwires removed and more bends put in on the right side.

New purple powerchains and I'm to continue with the same elastic configeration - Size 3/16".

• Left side - a triangle, from upper canine to lower canine and lower premolar
• Right side - a triangle from upper first molar to lower canine and lower premolar

My ortho brought up the subject of retainers ... wow ... does this mean he can see a light at the end of the tunnel for me ... I'm excited, but I'm still not prepared to ask about time frames. Anyway he said that the cost of my 'plates' has been covered in my original payment, but that he'd also recommend I get upper and lower fixed retainers. He uses a gold wire and they cost $250.00 each. He said in general the fixed retainers do hold the teeth in place more definitely, although you have to be careful with them, as it means never eating very chewy lollies. He said my oral hygiene is excellent and that he'd never recommend a fixed retainer to anyone who didn't have very good oral hygiene.

My right side has a few aches, but in general this was a much easier adjustment than my last one. Here's to my gap being closed when I have more chair time in February 2009 ... it sure is strange typing that!

Friday - Hubby is feeling better!

A new day and my hubby is feeling better. :-)

It's so good to see him smiling and happy. He's able to walk to our new house (which we built next door to the one we currently live in), without having to stop for breath. He's been worrying terribly that our new house won't be finished before he dies ... I wish I could convince him not to, but I realise he's doing this for me.

We have awesome friends who've spent every weekend (and some evenings after work), this past month, working on the boundaries, preparing retaining walls and the like. Today we 'employed' a friend ... who does work for the business my hubby is GM of, but he's taken two weeks leave to work for us on our new place, preparing the outside so we can move in. We're going to pay him his weekly wage, but it's still such a kind act, as I know he'll achieve heaps and my hubby will feel loads better while that's happening.

This weekend there's more digging (bobcat) needed to 'cut' the land for more retaining walls and getting ready to order the fences and gates. We're going to have to have a meeting with our neighbours who we share boundaries with to organise fences. Our neighbours over the back are close friends and there house is nearly at the 'roof on' stage. They visit most days, so we just have to make a decision with them. The other neighbour, whom we both share a boundary with appears to 'hide' away all weekend when we're out working around our land. Not sure why, but we're going to have to talk to him, coz we need to get these fences organised asap. He's been in his house a few months now, it was built earlier this year, so hope he's allowed money for fencing in his budget. Sadly he's not had any work done around his house, which I'm sure would look really nice with some gardens, paths etc.

Post fluid removal surgery - the following day

My hubby has not felt well today. His side is bothering him, but we're hoping that's due to where the needle was put in. He still looks a better colour and has a little more energy, but the huge improvement that was obvious yesterday is not so great today.

We are hoping that tomorrow (Friday) will have him feeling better.

He's off to our pharmacy in the morning to get his script for a slow acting endone pain relief med. Hopefully with the use of 'slow release' he will get more pain relief over a longer period of time, without the extreme need to sleep after having meds. I can tell he's not happy about the thought of wasting precious time sleeping due to taking pain meds, but he's also realising that he needs this med. So many conflicting issues!

While we were at the hospital both our doc and a nurse spoke to us about the need to include Yuri (our palliative care nurse) in what's happening. Unfortunatley he's away till Monday, or they'd have organised him to see us while we're still at the hospital. We need to get our head around the idea that palliative care is about 'quality of life while you're living' and not about 'dying' ... this is a tough one for us both! We've only seen Yuri once, when he came to interview us at home. My hubby told him then that he didn't want anything to do with him ... well not him personally, but with palliative care. It really is tough, coz as our doc explained, all he's doing now is palliative ... so there's no real difference. Neither of us had looked at it this way before.

We've been told that Yuri will be able to help us with food to help my hubby when he's not wanting to eat ... which apparantly the toxins released by the cancer often cause. Also if the fluid on my hubby's lungs requires the need for him to have oxygen, Yuri can arrange for us to have a machine that he can use at home, to get the oxygen levels in his blood up, and hopefully to help with his energy levels.

This journey is one I hope none of you evere have to experience!