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!

Surgery went well

We arrived at the hospital just before 8 am and our doctor was waiting for us.

My hubby was admitted and then the work began to get all equipment ready to removed the fluid from around his lung. This was done in a 'normal' hospital room, so it was important to have everything as sterile as possible.

I was sitting by the bed, and was never asked to leave, so I stayed for the procedure.

Firstly they gave my hubby some meds to relax him, and since he still doesn't take much for his pain, only a few endone here and there, he kinda went cross-eyed for a bit, but luckly he came good.

Next the doc did his sterilisation routine, scrubbed, was growned, gloved etc. There was a nurse, an medical intern and a student present, so quite a busy little room. Numbing stuff was put in the area they were planning to put the needle in, and then a larger needle was put in. They work 'blind', which is kinda scary when you realise they working around the lungs and ribs. After a bit of moving the needle, and considerable discomfort on my poor hubby's face, a good flow was established.

Our doc removed 60 mls at a time, and then it was released, by a separate tap into a container. Two containers were taken to send away for examination. A litre of clear brown fluid was removed and then the needle was removed. An hour or so later we walked to the x-ray section, and he had another x-ray. After that he rested on the hospital bed, until our doc returned from his general practice around 1 pm. He checked the x-rays, and unfortunately they show little improvement, which possibly indicates more fluid had accummulated since the previous x-ray, the day before. Our doc said that depending on how my hubby recovers from this surgery, will help with the decision as to what to do next. They may take more fluid off, but will neveer take more than 1 litre, as it can have a negative affect to take more. It was soooooooooooo disappointing to see so much of the lung still surrounded by fluid, and also a couple of small patches have shown on his right lung.

Hubby is feeling better and is breathing better.

Our doc said to go home, but to take care. He asked to see us in a week. My hubby mentioned he was flying to Brisbane next week for business and was swiftly told that 'no he wasn't'. Then our doc explained that although the x-rays show no air hole in his lungs, he cannot risk going at altitude. Good thing the subject came up before we left.

The improvement in my hubby is incredible! All fingers crossed! :-)

Surgery tomorrow morning

My hubby is having surgery tomorrow morning to remove fluid from around his left lung.

This past week has been horrid, with his energy levels getting lower and lower. He's been so frustrated by this, as he's not even been able to go to work for any time. His directors are amazing, as they've told him not to worry ... but still he does.

Our doctor is doing the surgery and has been honest with us about what may happen. Best case senario is that the fluid will remove easily, there won't be any 'hole' left in the lung, or infection, and the fluid will not return for a long time. Next best ... same as above, but the fluid will return in a few months/weeks. Next ... same as above, but the fluid will return in days. After that it just gets progressively less desirable ... which includes lung problems from the needle used to drain the fluid, and the risks of infection.

We're aiming for the best, which includes my hubby being able to stay on his feet for an hour or more and being able to breathe with ease. Plus an improvement in appetite would be welcomed.

All positive healing energy is welcome ... thanks!