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!

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!

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!

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.

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!

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.

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! :-)

We continue ...

My hubby now has fluid on one lung and it's definitely a negative when it comes to energy levels and everything seems to be affected by that. Our doc didn't want to do anything about it at his last appointment, but think we'll be putting more pressure on him at our next appointment, as this is really tough on everyone connected to us.

My hubby continues to be sooooooooooooo brave, but he's not eating like he did a few weeks ago, and his continuing weight loss is making how he looks a major concern.

We've received word that at least eight members of his family are coming from New Zealand to spend his 50th birthday with him. Wow ... that will be huge, considering we were planning to spend the time in Sydney with our kids. It will be fun ... so now we focus on 1 December 2008!

A Tough Week

My hubby has been tired and feeling generally unwell this week. This is scary, as he has been looking so good since we were told he has terminal cancer, that at times it is possible to forget what lies ahead.

He was very upset on Tuesday, as he felt he could no longer go to work, even for a few hours. We talked and cried together for a while, and he's decided to not try and go to work every day, and on the days he does go, he'll go for maybe only four hours.

The trip through the centre of Australia to Darwin was an awesome holiday, but when we got to Darwin, my hubby spent long hours fishing ... so I think it's to be expected that he's feeling tired.

This week we will organise bloods and a visit to our GP, who the palliative care team, have said we can keep as our primary care giver for now. Important for my hubby, as this is the first doctor he's felt good about.

Here's to next week being better!

Planning trip to Darwin

My hubby is feeling good and is eating well ... very important with the type of cancer he has.

So now we're planning our train trip to Darwin, plus organising our kids to fly to Darwin to spend some time with us!

Can't wait to see them both, and as they've not been to Darwin before, I'm sure this will be a fun time for them also.

My hubby is planning to take them fishing and we'll all do the Market thing ...which Darwin is so great at. Plus we'll take them to see the crocodile's jumping ... which is a great trip on the Adelaide River.

We are back

We had a great five days in Sydney with our kids, then it was off to New Zealand.

We arrived at the same time as a storm 'hit' the North Island and there was plenty of 'fat' NZ rain landing on our island ... the South Island.

We flew into Christchurch and spent a night with my hubby's bro and step bro. Then to Ashburton for lunch with an Aunty and Uncle of my hubby. Spent two nights in Waimate visiting my parents, bro and sis. Then to Moeraki to my girlfriends for the night, plus a stop in Oamaru to catch up with a couple of my hubby's Aunties. Next to Mosgiel for four nights with my hubby's Mum.

We had many gatherings with family and friends, including a 'live wake' with around 50 people. Friends organised this, and invited between 20-30 of my hubby's past work and hockey friends. Seems like the news got out and many more made the effort to call in. It was an emotional time, but exciting to see so many friends in one place.

Next we flew from Dunedin to Wellington and spent a night with an awesome couple we met when we lived in Fiji. Then a friend picked us up and drove us to his home in Hastings. Then a day trip to Wairoa to have lunch with the Mum's of two special friends. This was a great time, plus my hubby and I shared our first 'boil up pie' ... and it was good!

Next our friend drove us to Auckland, where a girlfriend of mine from Fiji joined us for tea, for our last night in New Zealand.

Flying Business Class was fun ... loads of leg room, good drinks, food and service!

Planning our Trip Home

It's been 25 days since we were told that my hubby's cancer is terminal. It's consuming and I'm finding that difficult to cope with.

Our daughter has been staying, while she recovers from her back surgery. She's returning home, when we fly to Sydney this Wednesday. I know already that I will miss her something wicked, when we return from NZ.

We have a HUGE few days planned before we fly to New Zealand.

We're flying to Sydney on Wednesday and my hubby is going to a Trade Show on the Thursday. He wasn't going to bother, but he's been getting phone calls from people he's worked with over the years, who want to see him, and this is a good opportunity to do that. Friday and Saturday will be spent with our kids, and that includes going to the Bledisloe Cup Rugby Union game on Saturday to watch our much loved All Blacks play Australia at our favourite sport!

We're staying at our favourite spot, overlooking the harbour ... so hopefully that will allow us time to refuel before our flight across the ocean.

My main wishes at this time are ... that my hubby will enjoy his time back in New Zealand, and that I will become strong and be able to support him better!

Trip to New Zealand

We are booked to fly Sydney to Christchurch on Monday, 28 July 2008.

We will then drive to Dunedin/Mosgiel over four nights. Spending four nights with my hubby's Mum in Mosgiel, before flying to Wellington. We'll be spending one night in Wellington and then a friend will drive us to his place for three nights. We'll then fly to Auckland for one night, before flying back to South Aussie.

We're not looking forward to this trip, but we know it's necessary to visit family and friends while my hubby is still feeling strong.

I loathe having to be practical ...

Today we visited a lawyer and wrote new wills, including the Power of Attorney stuff. I'm finding this being practical really tough ... but I know we need to do this and my hope is that when the practical stuff is over, we will live a full and happy life!

In my dreams, life is as it was always going to be ... and now I have to work to get my awake mind feeling this way also! My hubby is being so strong and so positive ... I really don't know where he get's his goodness from!

I love him today, I loved him yesterday and I know I will love him even more tomorrow!

Visited our kids ...

Last weekend we both flew to be with our kids in Sydney.

Our daughter was having back surgery, so I was already booked to go over and spend time helping her. Now with the dreadful news we had just been given, we felt it was important for the four of us to be together, as this was a time of great sadness, but also of support for each other.

We had a sad but wonderful time together.

Our daughter's surgery went well and she's now joined us in South Aussie.

Our son had two days off work and didn't play or sing in any bands while we were visiting, so we were able to be together as much as possible.

Much grieving was started. Hard, but important.

Those words ...

Last week my hubby had his first post chemo/radiation appointment. It was worse than we could have imagined. The doc had to tell us that after six weeks of treatment, the tumour showed no improvement and was therefore inoperable. His advice to my hubby is to do whatever he wants, whenever he wants, as his chances of survival are not good. He said that with the type of cancer he has, there's a survival rate of 20% at one year, and he wouldn't comment about after that.

He said the cancer will spread ... lungs, liver, kidney, bones etc.

To say we were both shattered, would be a massive understatement!

We're to continue seeing this doc at the end of each month.


What now ...

We're planning a trip home to New Zealand to visit family and friends. My hubby wants to fly business class.

We'll meeting with our real estate agent, as we think we'd be best to sell the house we're currently building.

We've cancelled our trip to Europe.
We're taking the Ghan to Darwin.
Hubby will go barramundi fishing in the Northern Territory.
... and any thing else that he wants to do.

We're both continuing to work ... but my hubby is only doing part days and having his second and third in charge, do much of the work. The directors of the company he runs have been excellent so far.