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.