Journal History

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Friday, December 21, 2001 at 10:15PM

A new member of the household arrived on Friday. She is a poodle/maltese cross called Ellie, and a very active little dog. She loves chasing and retrieving things, especially a rubber bone and a squeaky, prickly ball. However she also likes burying the ball, and her little face gets rather dirty when she investigates some areas around the back yard.
Janet's VCE results arrived this week. Her ENTER was 78.8 which we think was great. Janet was a bit disappointed, but has accepted that she did her best, and under the circumstances of the last two years, she has done really well.
Kathryn is getting her resume together, and hoping to find a job in the new year. She has matured so much in the last twelve months, and now needs a job to keep her busy.
I have been offered a place at Deakin next year to complete my teaching degree. I feel a bit old, but if I am to support myself in the future, I need the piece of paper at the end of it. Pity that years of experience don't count!
Have been trying to weave my way through all the legalities of wills, bank accounts, insurance etc. Of course this is the worst time of year to be doing it, as everything shuts down. I find it hard too, having been ½ of a couple for so long, I now find it difficult to have to make decisions by myself.
Am also getting through the thank-you letters, and have started to think about Christmas - a bit late for the Christmas cards! They probably will not arrive on time.
Christmas without Laurie looks bleak, but friends and relatives will help us get through the day. Tears are starting again, so time to stop and let Kathryn get on the net.

Wednesday, December 12, 2001 at 11:45PM

Our first big milestone without Laurie tonight - Janet's graduation from secondary school. She has had such a good year, and came dux of Phys. Ed. and Biology, as well as getting awards for participation in sport, and a senior citizenship award. Laurie was always there for the girls to share their triumphs, and I know he was there in spirit tonight, but I missed his physical presence so much.

Monday, December 10, 2001 at 10:10PM

I miss Laurie dreadfully, and today was one of those days I wished he was here to ask advice. I had to pick Janet up to take her to school for band practice during her lunch break, and the key would not turn in the ignition. Called the RACV, and they got me started, sent me to a locksmith. He said he couldn't do anything until tomorrow. Managed to get to Blackburn Square, did some shopping, and was going to pick Janet up after work, but, you guessed it, the key would not turn in the lock! That is when I would really love to have been able to ask Laurie for advice. Anyway, rang the locksmith back, and the RACV, got mobile, and the locksmith fixed it this time.

Also got the CCJC newsletter, with a tribute to Laurie, and that started the tears again.

I have had a busy week, with cortisone injection in my foot to help the pain of a heel spur, and all my top teeth out and replaced by a denture. I still can't bite or chew, so am living on pasta, yoghurt etc. Not very filling!

Janet has had her hair cut - very short - which looks great, and is much easier to look after. She is rapt.

Time to go to bed, as Janet starts work at seven in the morning, and needs a ride.

Sunday, December 2 2001, 12:25PM

Today is 3 weeks since Laurie died, and 7 years since my father died. It is a hard day, and miserable weather as well. I'm finding it difficult to cope a lot of the time, and found yesterday especially difficult, as I spent most of the day at Koonung (our basketball club) and so many people didn't know. It is so hard explaining to people time and again. Guess I'll have to get used to it though, and nail a smile to my face.

Janet got her driving licence on Friday, and so now we are a fully licensed family. We have an odd and even dates system to determine which of the girls gets the car, but so far no system which lets me drive! Things may have to change. After all, it's MY car!

Wednesday, November 21, 2001 at 10:38PM

At Laurie's funeral, a lovely verse was read which I would like to share with you. While our family do not have religious beliefs, this verse seemed to say what we do believe.

It is a deep mystery, this matter of life and death
That the same person who brought us a thousand joys
Can one day leave us shedding a thousand tears
So suddenly, sometimes that we grope blindly
For words left unspoken
For the hug we needed to give to say goodbye
And we wonder how this thread that holds us all to life
Can be so thin and fragile
Until one day we find the courage to accept
That the living aren't meant to understand death
Only to celebrate life
And to remember that the only real death
Is forgetting.


Every day, some new memory resurfaces, and the tears flow again, but also the laughter as we remember the good times.

I am back in the midst of Centrelink, filling out forms again, and with an appointment with a social worker next week. Today when I went in, the young lady who spoke to me could not have been more helpful, and she even volunteered information and advice! I was so impressed.

We are slowly getting back to some semblance of normality in the house - dishes done, even some cooking, basketball training and playing and refereeing. It is just strange to be doing things for three instead of four.

Thursday, November 15, 2001 at 9:50PM

What an emotional few days! All the details that have to be considered when planning a funeral, and not all directly involved in the funeral. Choosing coffin, flowers, writing the death notice, meeting with a celebrant and trying to make Laurie's life meaningful through someone who has never met him. Then there was the matter of suitable clothing for Kathryn, Janet and me.

The celebrant was fantastic, able to relax us and relate well. He drew out stories which really were able to tell so much of Laurie's life. Rod and I also prepared some bits of life stories to read. An interpreter of Auslan was also arranged so my sister and brother-in-law could participate equally in the service.

So many flowers and cards have arrived, and the perfume fills the house. All the caring has made the week a little easier.

Today, for the funeral, the weather was kind. It was fine and sunny, with almost no breeze. Arriving at the chapel and seeing so many friends and relations was awesome.

The service went without a hitch, with some beautiful organ music played by our friend and neighbour, Max Manuell. John, the celebrant, had put together a lovely tribute using so many of the reminiscences we had shared with him. I managed to read my tribute without cracking, although I almost lost it in the last few lines. Rod's tribute brought some smiles, as he remembered so many trips and family experiences. The Auslan interpretation added another dimension, even for those who could hear. Auslan signs are so expressive.

There were so many relatives, friends from Jeep Club, school, and Koonung Comets Basketball Club present. Their support was fantastic. One special surprise was the presence of one of the nurses from Box Hill Accident and Emergency. She had looked after me earlier in the year, then cared for Laurie during his two brief stays in the last few weeks.

Many thanks to all who left messages, or who emailed us. I will try to answer personally later.

Tuesday, November 13, 2001 at 11:30PM

Today I got my hair cut - it has needed it for some time, but it was too hard to get away for long enough.

We met with the funeral celebrant tonight - a really great man called John Byrne. He will help us to give Laurie a fitting send off I am sure. There will also be an Auslan interpreter (for the benefit of my sister and brother in law). He will be worth watching as the sign language is very expressive.

A reminder - the funeral is at Lilydale Memorial Park Chapel on Thursday at 12 noon.

Monday, November 12, 2001 at 7:55PM

Today was so different - little pressure once the first few phone calls were made. A stream of visitors has helped, and we thank you all.

Janet had to get up this morning and front up at a maths exam at 9:00! She found it difficult, but the support of friends made it bearable. Then she came home and got changed for work. Hope she is doing OK, but her boss said she could come home if not coping.

We have arranged Laurie's funeral for 12 noon on Thursday at Lilydale Memorial Park in the Chapel. Laurie and I had recently been to 2 funerals there, and he had suggested that it was a beautiful place.

Sunday, November 11, 2001 at 11:55PM

Laurie's journey ended tonight at 11:00PM. His breathing had been laboured for some time, then he just stopped and left us quietly.

He is now at peace, and our hearts are broken.

Sunday, November 11, 2001 at 9:10PM

Little change today. Laurie's breathing is laboured, but otherwise he is just lying there, not responding to voice or touch. Even moving him for washing or changing continence changes draws no response at all. Just a couple of days ago those manoeuvres would have drawn a protest, and he would have struggled to hang on to the sides of the bed.

Visit from Sue, Craig, Emily and family. Phone calls from my Mum, Vicki, and Graham. Calls and visits are welcome, they keep us in touch with the outside world.

Saturday, November 10, 4:40PM

Laurie is now in a coma, not responding even to being rolled to wash. His breathing was laboured last night, and he is back on oxygen just to make things easier for him.

Thank-you for the messages - it really helps to sit here and read them and know that we are not alone.

Friday, November 09, 2001 at 9:30PM

Last night was not as good as I had hoped - nurse knew I needed to sleep, but woke me with a question about midnight, then to help wash Laurie at 6:30AM! Not conducive to a good night's sleep to help make up for a sleep deficit.

Laurie less easy to rouse today, ate very little (maybe 4 teaspoons of food in total.) His voice is even softer and more difficult to understand.

I went to see Dr Cher (neuro-oncologist) today to discuss any concerns. He had been talking to GP as well, and they have made some changes to Laurie's medication as swallowing becomes harder. Apparently the most likely outcome is that Laurie will slip into a coma, and then just go quietly. It's hard to contemplate an end, but Laurie is just existing at the moment, with no quality of life.

We did discuss the 12 months in the middle of this journey too, when Laurie was doing well, and was able to enjoy outings and pottering around in his shed.

At the moment I am grateful to our medical system which allowed Laurie access to the top specialists, medications at affordable levels, and the best of care at home through EPC. Despite all the media hype about hospitals, he has been cared for well throughout.

Thursday, November 08, 2001 at 8:35PM

A bit earlier with my update tonight, as a nurse is coming to relieve me for the night. She will arrive about 10:00PM and stay till 8:00AM. Will be a chance to catch up on some sleep for me, while knowing that Laurie will be in safe hands.

It is amazing what resources are available in the community to help families like ours to cope. The nurses come in every day to wash Laurie and change his drugs in the driver, and reassure me about any problems.

Phone call from Beryl, visits from Marge and Rod, Marion and Emily and Kerri.

Wednesday, November 07, 2001 at 10:00PM

Laurie is fairly peaceful, except when he has to be turned. The biggest problem at present is communication. Laurie just whispers, and I feel like I am playing "Chinese Whispers" without knowing the original message. So I have to guess what he wants and see if he can give a yes/no answer.

Discussion with the doctor about Laurie's drugs, and alternatives when swallowing becomes impossible. For the moment, those being given orally are OK, and can be given in very small amounts during the day.

Tonight he ate a little yoghurt, and had a couple of mouthfuls of orange juice. Just enough to give a taste really.

Thanks to all who have signed the guest book, or e-mailed us. The communication really helps.

Tuesday, November 06, 2001 at 10:30PM

A busy day for all but Laurie. Visits from my sister and brother and their spouses, Marge and Rod, Alan and Claire. Also from two nurses to give Laurie his wash today - meant I could give up the nursing role entirely for a short time.

Laurie has barely moved, has eaten and drunk nothing except his medicine. Even some of that dribbled out. He does try to whisper a few words, but I can't understand anymore.

Phone calls from Graham and Lorna, Laurie's brother and sister. Graham's new grandson finally has a name - Ethan.

Monday, November 05, 2001 at 8:05PM

I fear that Laurie's Journey is nearing an end. Two teaspoons of yoghurt this morning, about 25ml of water for the day, and 21ml of medication. I have only understood a very few words that he has whispered today. He has barely moved in bed, except to feel his head. He denies headache, and appears comfortable.

Sunday, November 04, 2001 at 9:55PM

Confusion is more, food intake is less, Laurie is now objecting to any pills. He is drifting in and out of awareness.

Visits from Barry and Chris, Marge and Rod probably meant little to Laurie at this stage, but meant lots to me. Just having a break from the caring for a few minutes, and a chat with friends is enormously helpful.

Saturday, November 03, 2001 at 10:25PM

Laurie's pills are now cut back somewhat - chest pump for the morphine, liquid for the dilantin. Dex can be given as injection when it becomes too hard to get them down. Others I prioritise and see how many Laurie can swallow using apple sauce or yoghurt to assist.

Liquids are now mostly taken via syringe, as sucking through a straw is exhausting. Laurie is still interested in small amounts of food, mostly pureed fruit or yoghurt, custard, jelly, ice cream etc. The much smaller quantities of food mean that he is loosing weight rapidly. The cushingoid effect has gone from his face, and it looks far more normal now.

Today was a fairly restless day, with a lot of confusion from Laurie. He seems unsure where he is at times, (not surprising I suppose when he has been to hospital twice in the last week.) He is searching for a green button which someone told him to find.

Friday, November 02, 2001 at 10:30PM

Laurie was slightly less settled last night, and this morning started a bit earlier, so pills were finished by about 10:00 Nurse arrived about 11:00 for Laurie's wash, and was still here when GP arrived. They were able to discuss options for helping Laurie. Result is he now has a small pump in his chest to deliver the morphine, which means two less pills. Dilantin will also be given that way, so that will be four less.

Laurie now eating very little, some fruit puree, yoghurt and half a boiled egg today. (Plus the pills!) He spends most of the day asleep, but has a few lucid moments, which are treasured.

Doctor at Box Hill Hospital had organised an appointment for Laurie to see Dr Cher at Repat. That would have meant ambulance trips each way, and been totally exhausting for Laurie, so made efforts to cancel the appointment. Dr Cher's receptionist agreed, and offered me the chance to make an appointment if I want to discuss any issues. Am undecided at the moment. Feel our GP and the palliative care team are taking great care of Laurie, don't know if anyone else could add to the care.

Thursday, November 01, 2001 at 8:00PM

A fairly peaceful day. It took ages to get pills down, as Laurie really doesn't want to swallow them. He is only semi-conscious most of the time, except when having a wash. It is just so hard seeing him like this. Marge and Rod came over to sit with him while I did the shopping - much appreciated - and Sandra called in with a bent pillow to see if it would help Laurie feel more comfortable. Kerri called in with a few things from the chemist. Thank-you all.

Wednesday, October 31, 2001 at 11:20PM

Laurie had quite a bad night last night, but I didn't hear a thing. And I wasn't being heartless, we had a night nurse, and she coped, with help from the on-call EPC nurse (who just happens to live across the street!) to change Laurie's catheter, which had blocked. There was quite a bit of activity,and Laurie was much more comfortable afterwards. I was much happier after 9 hours sleep too!

Today also ended up being eventful, as the catheter blocked again, and as there was also some bleeding, it had to be changed in hospital. The doctor there decided to leave it out, and Laurie is now on antibiotics to clear the infection which probably caused the blockages.

Another ambulance ride home, and hopefully a good night's sleep coming up, as Laurie gets very tired with all these excursions to hospital!

Tuesday, October 30, 2001 at 9:20PM

Another hard night last night, with Laurie awake with a sore throat that precluded swallowing. We were both awake for about two hours, with Laurie distressed and me worried and helpless.

Nurse arrived this morning, for his wash. She gave him a morphine injection, as he couldn't swallow the capsule form. The doctor also called in, and suggested crushing his pills and mixing them in jam or honey (like we did when we were kids). It worked, and most of the pills are doing their job.

Have a night nurse coming tonight, so I can get some sleep.

visit from Gail - thanks ! Also Marge and Rod.

Monday, October 29, 2001 at 11:00PM

When I rang the hospital this morning, they said Laurie had had a good night, but the doctors hadn't seen him yet, so they would ring me later. When I got there at 12, he was about to have lunch, and the plan was to get him a bed at the Austin. Laurie had a bit of lunch, then we had another discussion with the doctor. Eventual decision was that he would be just as well off , and much happier, at home. Eventually that is what happened, and he is now in bed at home, with the radio going and all the appropriate drugs taken. Now hope he has a good night tonight so that we all get to sleep again.

Will try to answer the phone calls I missed in the morning, as the phone ran hot tonight and it was 9 PM before we finished tea.

Sunday, October 28, 2001 at 11:20PM

I am just back from Box Hill Hospital. Laurie had a seizure this afternoon which did not respond to the measures we have available, so I had to ring the ambulance. It was one of the hardest things I have had to do, as Laurie really didn't want to go back to hospital. They managed to control the seizure in 1 hour and 20 minutes, quite a good effort. Then Laurie slept, and when I left they had moved him to a short stay area, and I guess he will sleep again.

They did a lot of blood tests, a CT scan, and urine tests and a chest X-ray to see if there were any infections which had caused the seizure. So far can find no reason, but will either send him to the Austin tomorrow or at least consult with them to see what's next. Hopefully it will be home, with perhaps fewer drugs or injections for some of them. Certainly getting around 30 pills a day down has become a major effort, and seems to take most of the day.

Saturday, October 27, 2001 at 9:15PM

It has been a hard day. Laurie ate very little breakfast, couldn't manage all his pills, and was confused as to what was happening. Nurse came for his wash, showed me how to change the Kylie, then Marge and Rod arrived so I could go to basketball.

When I got home, Laurie was upset that I had been out, hadn't let any one else help him. So it was full on. He is still confused, moaning most of the time, though he says he is not in pain. His eyes are really grey, most of the time his eyes are closed, and he wants small sips of water, but finds it hard to drink them.

Tonight he only had a couple of mouthfuls of tea, and only 5 of his pills before he had had enough. Will try the rest a little later, but at the moment I am trying to give him the most important(?) ones first.

Thanks to David, Marge, Rod, and Max M. who visited today.

Friday, October 26, 2001 at 9:15 PM

Quite a learning curve for me today. Nurse Dianne arrived this morning for Laurie's wash, and showed me how to use a slippery sam to help him turn over easily. It is two plastic sheets that fit under a Kylie on his bed, and you grab one and the Kylie and pull to help Laurie roll over. It works easily, until the aim is to change the Kylie. Then the weight of Laurie who can't help makes it very difficult. Will have to ask for help with that tomorrow.

The bed has also moved out from the wall, as Lauries whole body is now tilted to the left, and that side is easier for feeding etc. Will have to push the bed back to the wall when I go to bed to give me room to move around.

Visit today from Shane, gave Laurie a few laughs.

Think an early night might be in order tonight, as tomorrow will be busy with basketball as well as caring for Laurie.

Thursday, October 25, 2001 at 9:45PM

Another fairly full day. Wash for Laurie, left him feeling more comfortable. Marge and Rod came over in the morning, and had a chat. I rearranged a few things in the bedroom to make it a bit easier to dispense medication, and yet have room to sit and chat.

The whole place looks aa bit different as we try to keep things in order, and a hospital bed takes up quite a bit of room. But it does make things so much easier for Laurie.

He had quite a good day until this evening when he became a bit confused when I asked him to turn his head towards me to make it easier to feed him. He tried to turn his whole body, and that is a problem.

Kathy and Casey called in during the afternoon, and a good laugh ensued. then I was off for a bit of shopping so we have food in the cupboard. That left the girls in charge for an hour, and Kathryn got to operate the bed to make Laurie more comfortable.

Wednesday, October 24, 2001 at 10:40PM

Yet another full day. Breakfast followed by arrival of EPC nurse with a few more goodies, and prepared to shave and bathe Laurie. A cradle to keep the blankets off his feet was much appreciated, as was a "kylie" to help move him up and down the bed, as well as being a mattress protector. He has been much more settled today. Think the shave and wash helped too. Certainly the tidy up under his beard looks much smarter.

Marge came over this afternoon while I went and did a few chores - visit to Centrelink (and I got in and out in less than 5 minutes), return wheelchair, bed pole etc to the Austin (they were going to charge for the hire, where EPC can provide without charge), and paid accounts. While I was out, the doctor called in and left a prescription for the larger dose of morphine, so I went and got that too.

The larger dose of morphine seems to be right, certainly no need for top up today.

Several visitors during the day were most welcome, giving Laurie a laugh, and interest in other people. Thanks to those who have called in or rung up. It means so much to us all.

Kathryn has been lucky, and is doing some work experience in a pharmacy. She seems to be enjoying it, and it is giving her more of a reason to get up in the morning.

Janet is celebrating winning a Pierre de Coubertin Award. It is given to students who have represented their school in many sporting fields, and who embody some of the Olympic ideals. Only 1 student can be nominated from each Secondary School in the State, and the winners are invited to a presentation in November where they will be presented with their awards by an Olympian. Janet is hoping for Ian Thorpe!

Tuesday, October 23, 2001 at 9:00PM

Another busy day. Got up early to help Laurie, then went back to bed for a lie-in. The phone woke us again about 9:30, then it was breakfast for Laurie. He had just finished when the bed arrived, so there was some quick rearrangement of furniture to make room. Were in the middle of that when EPC nurse arrived, just in time to help Laurie make the move. The bed is pretty good, electrically controlled, and even has a vibrating massage. Even Shadow (one of our cats) approves and is at the moment keeping Laurie company.

We have had to increase the dose of morphine to cope with Laurie's headaches. His leg was also sore, and we have removed the compression stocking which was tending to roll down and make a tight garter round his shin. He is a bit more comfortable tonight.

Food intake has decreased somewhat, and getting pills down could become a problem before too long.

Meanwhile we just have to make the most of the time we have left. Visitors welcome, probably in afternoon or early evening.

Monday, October 22, 2001 at 9:50PM

Medical visitors today - EPC nurse, Scott, who had seen Laurie last about a month ago, and was floored by the change. He came to give Laurie a shower, and as Laurie can no longer walk, even with a walker, it was a big job. Laurie was so tired afterwards, he slept for 2 hours! Scott is organising a hospital bed for us here, which will make so many tasks easier for nursing Laurie, and will let us both sleep a bit better.

Next was our GP, and he too noticed a big change in the last week. He left us with prescriptions for morphine in different forms so that Laurie will not be left in pain. He has also upped the dose of Dexamethasone which should help with any swelling in Laurie's brain. The combination should make him more comfortable.

We also had some social fun tonight. Janet and 4 of her friends gathered here before their Formal, so Laurie was able to be involved in the photos. Janet had planned some nibbles to get them all off to a gourmet start to the night, then they left in a stretched limo, complete with non-alcoholic champagne, a TV, etc. etc. They should have a good night.

Another visitor tonight was Kathy from over the road. She is in the EPC team, and has offered to help if needed. It is comforting to know that she is so close.

Kerri also came over for a chat, and that was lovely and relaxing. To not have to think for awhile - well not about too much. Emotional overload is a problem at the moment.

Phone calls from three of Laurie's siblings were welcome, as we can share what is happening,plus a phone call from my mother and a visit from my sister too. What a busy day it has been!

Sunday, October 21, 2001 at 4:25PM

As Laurie's journey nears its end, things are becoming more difficult. The headaches of the last few days got worse today and were not responding to the painkillers we have at home. A doctor was called, and arrived nearly 5 hours later with some morphine. He is now sleeping, and hasn't been out of bed all day. Has eaten a couple of pieces of chocolate, and his medication, but that is all. Craig and Emily came round this afternoon, and were able to have an intelligible conversation with him, which is a bit more than Marge and Rod got last night.

Shadow, our cat, has kept Laurie company most of the day, but finally gave up and moved out when Laurie turned over on top of her! Says something for a cat's understanding that she didn't give him a nasty scratch! She would have for anyone else.

Saturday, October 20, 2001 at 9:30PM

Another hard day. Again Laurie has stayed in bed, and had difficulty turning over. He now takes up the whole bed. Guess I'll have to look elsewhere! He's not eating much now, and is increasingly confused. Each day gets a little harder.

The girls and I enjoyed our day of basketball. Thanks Marge and Rod who stayed with Laurie while I refereed. That couple of hours of reffing are great therapy - keeps the mind on 10 kids running round the court, and a bit of exercise too.

Friday, October 19, 2001 at 11:15PM

A long day for Laurie. He woke with a headache, then had breakfast. Nurse gave him a shower, then he elected to go back to bed. There he stayed all day until a late tea. He is having difficulty turning over, and at one stage had turned over so that his head was at the foot of the bed! Helped him to get round the right way, and back under the doona as he really does feel the cold. He finds that his left leg lacks much feeling, and is a dead weight. Makes it difficult to get comfortable, and impedes movement.

He is also showing signs of confusion, even to not being sure where he is in the house, and we've only lived here for 21 years. The nurse who came this morning was quite concerned about the swelling in his legs, which is not responding to being elevated and having compression stockings. She was also concerned about what we wanted for Laurie - whether to have him at home or in a hospice. Laurie and I had already discussed that, and decided he will stay at home if at all possible. These are hard decisions to make, and it is also difficult to strike a balance between wife and carer, more so now that he is needing so much more care, and patience as he gets more frustrated by what this tumour has done to him.
Sorry if I sound depressed too - it is getting harder for all of us at the moment, but we all appreciate visits and phone calls. Please don't be afraid to ring - the phone is a life line to the world outside.

Thursday, October 18, 2001 at 10:05PM

What a day! Constipation struck! Thanks to all the drugs. We got up late, just getting into the shower when Stuart called around. Then I had just had a shower when Jill arrived. Next step was some shopping, and then home to tidy up a bit before Jeff and Sue, Sandra and Conway arrived. All the visitors helped keep us all entertained, made the day seem much shorter.

Was cooking tea, when the girls informed me that Janet had to leave for training in 10 minutes, so Laurie and I had tea by ourselves, and the girls will eat when they get home after basketball. (They had a match at 9:00PM, after Janet's training, and have just arrived home now.)

Laurie went to bed early, hope he sleeps well all night. We could both do with it.

Wednesday, October 17, 2001 at 9:40PM

A better day today. Rod came to visit this morning, then EPC nurse came to help with showering Laurie. She was much more efficient than I am, being used to working in cramped bathrooms. (And until I had to help shower someone else, I thought our bathroom was reasonable!) She also brought replacement equipment for some of the things lent by the hospital. The hospital lot was going to cost $120 a month to hire, where EPC can lend it at no charge. So that is one less thing for Laurie to worry about. I will get help now 3 days a week, which will be good.

This afternoon I went down the back garden and did a bit of weeding, and pulled up the potatoes I had been growing (well, had allowed to grow, but hadn't done anything to help them.) Got half a bucket of spuds, and we had some for tea. Have a whole lot of bits which are shooting which I will plant tomorrow, and try to take more care of.

Once again can I appeal for any memories of Laurie - trips, family get togethers, funny happenings etc.

Tuesday, October 16, 2001 at 11:55PM

Just a brief note tonight as it really is time to get to bed. By the time we get Laurie to the bathroom, and into bed, and get the oxygen machine there too, it will be very late.

He is "don't tell me I'm depressed"! because he is just sitting or lying on the couch - just existing. We really would appreciate any memories to share, and try and give him something to think about and elaborate on.

Monday, October 15, 2001 at 11:20PM

Our house is starting to look a bit like a medical equipment store - bed pole, commode, walking frame, wheel chair, chair with higher seat and solid arms, over toilet seat with arms, shower stool and oxygen converter. The wedge pillow has gone back, as it was more trouble than it was worth. Laurie is able to walk and stand a bit more than when he was in hospital, but really needs the walker to help him.

He is getting increasingly frustrated, as lack of strength and visual problems make so many things difficult. He is bored, and even watching slides of his old 4WD trips did not gain his attention. Thought if he could reminisce it might help pass the time.

We had three visitors today - EPC nurse to check on how he's going, occupational therapist to check equipment, and doctor to fill in form for insurance, check an ingrown toenail (just another problem he could do without) and help with a prescription. That lot stopped Laurie having a long sleep during the day, but he should sleep well tonight.

If anyone who reads this could send any reminiscences by email, I would be most grateful. I would like to start a memory book, with things that Laurie can talk about with family and visitors. Photos would be great too, but it's the written memories I would really like.

Sunday, October 14, 2001 at 10:40PM

Up late, and Laurie had a shower and breakfast before our visitors arrived - my mother, brother and sister in law. It was very special to see Mum, as I haven't seen her for months, and it was nice for her to have a day out from the nursing home. Thanks Ted and Vicki for making it possible.

After their visit, Laurie had a snooze, then a visit from Chris, a neighbour and good friend. A bit more snoozing in front of the TV was followed by tea, a bit more TV and bed.

Laurie is able to walk a little further than he could, but with the walking frame. He finds his state a bit of a pain, but still enjoys being home.

A busy day planned for tomorrow, with occupational therapist and EPC nurse to visit. Might have to fit the GP in somewhere along the line too.

Saturday, October 13, 2001 at 9:55PM

Laurie woke early with a back ache this morning, probably from straining to sit up the last few days. A massage with liniment and a couple of panadol let him get back to sleep, and he slept for a couple of hours while I did some housework.

Marge and Rod arrived to be here while I did some refereeing. I managed a tumble, and suspect I have a few nice bruises. I am a bit big to roll on the floor! Girls went and did coaching and refereeing this morning, and they are playing and spectating tonight. I expect them home in the next ½ hour. It is lovely that Kathryn can now drive, so although I miss spectating, it is easier to be with Laurie while the girls look after themselves.

Laurie had another good sleep this afternoon. Hope that will not affect his sleep tonight.

Had a phone call from EPC this afternoon, just checking up that Laurie is OK. It is one of our neighbours who is on duty today, and she was concerned that we might not want a neighbour involved. We were able to set her mind at rest.

Two visitors during the afternoon from neighbours - Max from 2 doors up and Kerri from over the road. Made a difference to have the company.

Friday, October 12, 2001 at 11:11PM

HE'S HOME! ! ! Eastern Palliative Care (EPC) rang and asked when he could come home, and the answer was today. EPC will keep in touch over the weekend, and provide any support we need.

Laurie was so pleased that "if" had turned to "when". He had really begun to think he would not get home.

Anyway he is home, complete with walking frame, oxygen converter, wedge pillow for the bed, and an incredible range of drugs. It is great to see, but we are going to have to get used to the tube for the oxygen trailing round the house.

A celebratory tea, three courses, was eaten with gusto. Pumpkin soup, chicken and mushroom risotto, and lemon delicious pudding. Then it was off to the computer, once the walker had been manoeuvered through the doorway. But getting to bed was even better, as there is less room there to turn the walker. Anyway, now safely in bed, and happy to be home.

Thursday, October 11, 2001 at 8:55PM

Laurie still worried about "if" he will get home, hospital is working hard to make it "when" - maybe on the weekend.

Today he was a bit more coordinated, was able to eat his tea with minimum assistance. Didn't see him walk, but he stil gets very short of breath when he does walk.

Palliative care nurse let me know that he does not need the oxygen enough for the hospital to provide it, but it will come from our local palliative care organisation while he needs it.

The whole idea of nursing Laurie is a bit daunting, but then 2 years ago, I don't think I would have known what to expect through all that has happened so far. It is amazing what we can learn to do for someone we love.

The outlook now is fairly bleak, but getting Laurie home where he can enjoy familiar things is a priority. Just being able to have a cup of tea together! will be lovely after 2 weeks in hospital. And being able to do things when it suits us instead of having to wait for a nurse to be free to help. (The nurses have been wonderful, but they are so busy!)

Wednesday, October 10, 2001 at 8:05PM

Today when I arrived the palliative care nurse was talking to Laurie, so I had arrived at just the right time. The OT assessment will be tomorrow, and we should be fully briefed tomorrow. Laurie will certainly need a walking frame and a wheelchair, probably oxygen, certainly a bed pole. He will probably get help showering a couple of times a week, and I will help him the rest of the time. Our volunteer will, hopefully, still come in for a couple of hours to give me time to do the banking and shopping.

Laurie is still cocerned that it will be "if" he gets home, I am certain it will be "when"!

Tonight the Thalidomide had caused constipation, and he was asking for and about to receive relief when I left. Think they will be prescribing some sort of laxative to prevent it becoming such a problem.

Alice and her dog were not there today. Alice was away having her hip replaced. A major job for a lady of 98.

Tuesday, October 09, 2001 at 10:25PM

When I went in today, Laurie was just getting ready for a walk. Oxygen tank on walking frame, and off he went. Took several minutes to shuffle maybe 10 metres, then he was exhausted. He had another walk later, with similar results.

Doctor came in during the afternoon, wanting to discuss possibility of coming home. He will still need oxygen, and a walking frame. Meeting will be organised to educate me, and discuss options for home care, and I hope to have him home soon. Laurie says he will believe it when he sees it, but is really looking forward to sitting on the sofa in the family room with the sun streaming through the window onto his back, and one of the cats beside him.

Guess it will mean some adjustments for us all, but it will be easier than going to the hospital for half the day!

Sue and Shane brought tea round tonight, a much appreciated idea. It was so nice to come home and relax with friends, and not have to think about preparing a meal.

Here's hoping there will be more positive news tomorrow.

PS Alice's dog sang several times last night, woke up the ward. Alice was hungry, and couldn't catch anyone's attention, so the dog sang for his supper!

Monday, October 08, 2001 at 9:05PM

Knowing that Laurie was supposed to be coming home today, I rang the hospital to see if that was the case. But it wasn't. He had been breathless, and had been sent for xrays and scan. Got a phone call from the doctor a bit later - there were some things which needed discussion, so could I come in. I went.

Laurie has clots in his lungs, a more severe problem than usual because of swelling and bleeding in his brain. (That had caused the seizure.) Because of that, the normal drug therapy was not on option. That left 2 options - do nothing, or put a filter in a vein to stop any more clots reaching his lungs. There are no guarantees with the filter, and there is always the risk of infection, but that was the option Laurie chose. We also had discussion with the doctor about what to do in the event of him needing life support, or his heart stopping in surgery. Laurie refused to be revived, and doesn't want life support. Although we had discussed these issues before, it was a fairly emotional time discussing them with the doctor!

It seems Laurie's options are getting fewer with every step, and for all of us this journey is becoming more harrowing.

Anyway, as soon as I had met with Laurie and the dr. things were set in motion, and he was soon in surgery. He was told that he would only have a local anaesthetic, and would be able to watch what was happening on a video screen. But he nodded off anyway, and had to wait till afterwards when he was shown part of the videotape. When the girls and I went in afterwards, he was able to sit up a bit and eat tea. (The dexamunchies are still in action!)

So although the future does not look too rosy at present, Laurie is a bit more positive about coming home now and letting me care for him here. Visitors will certainly be welcome when he makes it home, or in ward 7B from 12 to 2, or 4 to 8. If you do get in, ask Alice to show you her dog! She will be only too willing.

Sunday, October 07, 2001 at 9:35PM

I arrived later at the hospital today (did some chores at home first) and found Laurie fretting because he thought I'd had car trouble. Will have to be earlier tomorrow. May hear from the hospital about him coming home, as that was the plan on Friday. He is still having problems with mobility, but I'm sure we can cope together.

He seemed more alert again today, but the deficits seem worse than the major seizures last year.
*vision gone on left side
*some double vision
*muscles atrophied in legs and arms
*memory lapses and some confusion
*lack of coordination on left side
*lack of awareness of position of left arm and leg
*skin thinning, and showing many small bruises
*"shakes" in hands
*walking, standing up difficult

Despite all of the above, there is some improvement each day. Drug dosages are changing, and he has started on the Thalidomide (which will, hopefully, cut off the blood supply to the tumour, and so stop it growing.)

Saturday, October 06, 2001 at 9:20PM

Laurie was looking even more alert today, and more willing to talk. However, still having difficulty standing up and walking. Feel that a walking frame may be in order for some time. I know Laurie won't like it, but if it helps his mobility, it may be necessary.

He must have been feeling a bit more positive because he consented to wear his wedding ring and watch again. I have been wearing his ring since he thought it was a bit of rubbish and struggled to get it off on Tuesday. Now feel kind of naked without it, but am so glad it is back where it belongs.

Friday, October 05, 2001 at 10:40PM

Laurie finally made it to a neurology ward today! And the canulas are a thing of the past! that is really great, as his veins don't respond well and collapse, so a new one has to be inserted. And Laurie's veins have decided on a long vacation in a very private place - where they cannot be invaded by needles. It has caused a problem in monitoring dilantin levels etc. Tonight three nurses had a look, then decided to leave it until tomorrow morning. Poor Laurie has a wonderful array of bruises, and not much to show for them.

Although he still finds walking difficult, he is doing a bit better today, and was able to turn over in bed. These are achievements. Eating with tools is still a problem, and we may have to adapt his food to suit his skills. He can still master chocolate!

At present the thought is that he will come home on Monday, probably with a walking frame for support for as long as necessary. Other aids such as bathroom rails are in place, and Laurie says we do better than the hospital as we have rails either side of the toilet, while they only have them on the right.

Thursday, October 04, 2001 at 11:55PM

Yesterday, Laurie, who was wearing a hospital gown, said he was too cold, and could we get him some long flanelette pjs. So this morning Janet and I chose two pairs, and this afternoon, I took them in to the hospital. With help from a nurse, he got one pair on, and looked very smart. They are fine while he is in the chair, but in bed, they are too hot, and twist when he moves. Now he thinks short ones would be better!

However, he is looking a bit better, and has been going for a walk with a walking frame, and a physio at each arm. Hard to believe that a week ago he could walk (slowly) around the local shopping centre. The physio thinks he should be able to come home early next week, probably with a frame, and we may need another assessment of the house to see if we need any further adaptations.

Looks as though I may really earn my keep, as at present Laurie needs help getting up from a chair, and with eating, dressing and washing. Hopefully these will improve with time.

Wednesday, October 03, 2001 at 9:55PM

when we arrived at the hospital today, Laurie was sitting in a chair finishing his lunch! That was great to see. He had had some problems of coordination, but had managed by himself. The seizure is now resolved, and the tremors in his hands were less than I have seen them for ages.

His only problem, apart from mobility, is now that the canula keeps blocking, which is making intravenous hydration and medication difficult. And where he used to have great veins, they now have to find specialists to get blood for a test or to insert a canula. Hopefully he will be able to do without soon, as the human pin cushion is not too happy about that status!

He has also decided he needs new pyjamas - long ones for warmth. And that from a man who never wore pjs unless he had too, and then only shorts.

Now that he is sitting up, Laurie is also more alert, and more coherent. Hopefully those will also improve further. He should be able to come home once he can get mobile, maybe with a frame, but at least confident enough to walk to the bathroom etc.

Tuesday, October 02, 2001 at 10:35 PM

Another long day. Rang the hospital at 8:00 and Laurie was still spasming, but they were hoping to move him to a ward. When I got there, he was in a respiratory ward, along with a group of orthopaedic ladies. He still had some muscular spasm (at 1:30) and his arm was swollen where the drip was. The next medication through the drip made it obvious that the canula was blocked, so a nurse looked for a new site. No luck so she called in a specialist nurse, and he had no luck either. Still no medication, and eventually the neurologist turned up and demanded to know why his patient had not received his medication. Got no satisfactory response, read the riot act to the staff, then came and found a vein and started the medication himself.

The spasms eventually stopped, leaving Laurie exhausted, but not able to sleep for more than a few minutes. He is mentally confused, and quite unreasonable in some of his demands, and convinced that his catheter is leaking.

During the afternoon he was tested by a speech pathologist to make sure he was alert and able to swallow, then he was finally allowed food. His diet however is "soft food" which he is a bit cross about. that's a bit too invalidish for his liking. When tea arrived, though, he enjoyed it. "Soft" meant soup, casserole with potato, peas and carrots followed by a sort of lemon mousse and a slice of bread and a cup of tea. His coordination was such that I had a job to do - feed him. But the whole lot got eaten, so he should have a bit more energy tomorrow.

Just before tea, the powers that be decided most of the patients from the room Laurie was in would move to another ward. It was only a couple of metres away, so now he is in an orthopaedic ward! Maybe eventually he will get to something neurological!

When I got home I made a couple of phone calls, and the second one I could hardly speak for the tears. Jill came round, and after a good cry and some discussion of Laurie's problems, i was able to calm down and the chat became more general. Thanks Jill.

The girls cooked tea, so it was great not to have to worry about that. Seems I have taught them something! The tuna casserole was delicious.

Monday, October 01, 2001 at 11:55PM

What a day! Laurie had problems eating his toast this morning, that is once he managed to pull the chair into the table. Then his left arm began to shake uncontrollably. He swore it was just "the shakes", but it got worse, to a seizure. Rang the ambulance, and a MICA paramedic arrived very quickly, followed soon after and tried some treatment to try and stabilize him. Not a lot of success, so a trip to the Austin came next.

They tried every anti seizure medicine they could, but nothing seemed to help, and Laurie couldn't sleep either so he was fairly distressed. 12 hours later, his arm was still spasming, so he will probably have an uncomfortable night. He is still in emergency, on a trolley in his own cubicle, as there are no beds in the hospital. He will be admitted in neurology until the seizure stabilizes, and will be unable to start the Thalidomide until he is stable.

Sunday, September 30, 2001 at 8:55PM

Last night, the smoke alarm and the phone started at the same time. I swiped with a blanket as I picked up the phone. It stopped the alarm, knocked a shade off the light fitting, broke the globe, but miraculously, the shade landed in one piece. Today Laurie sat and watched while I figured out how to fix it all. He was worried about the broken globe, though that turned out to be the easy bit. Much harder was reattaching the shade to the fitting. It was hard for Laurie to sit and watch me struggle with something he would have done in a few seconds when he was fit.

He spent most of the rest of the day sitting in front of the TV, something he does a lot these days. He complained about the cold too, even though it was 28°C! Tonight, though, the jacket has come off, and he has just a T-shirt.

Saturday, September 29, 2001 at 9:25PM

Another lovely sunny day, so Laurie and I packed a picnic again, and this time went to Beckett Park in Balwyn. We had hoped for a walk around the Maranoa Gardens which are attached to the park, but they were locked. A shame, as the gardens are all native plants, which would have been beautiful at this time of year.

After that we went in search of a bread maker as the one we had had joined the long list of appliances which have given up on us in the last few weeks. Found what we wanted, and made a fruit loaf when we got home. The quietness of its operation showed us just how noisy the old one had become.

With the warm weather, Laurie even took off his wind cheater, and just had a T-shirt. Amazing! Tonight though, he is back in the track suit while the rest of us are just in T-shirts.

Thursday, September 27, 2001 at 9:40PM

A better day today. Marge and Rod came to visit this morning, and Marge's ankle is a bit better, although it could be 6 months before she will be walking properly. Then the girls went shopping, while Laurie and I packed a picnic lunch and went to Banksia Park, a lovely park along the Yarra River at Bulleen. We sat in the sun, watched the birds and the some kids playing soccer, and enjoyed the break from home.

Came home and finished off some chores, then had tea, which included the last bits of Janet's party! Now we can start to eat more normally.

Wednesday, September 26, 2001 at 10:30PM

The visit to the neuro-oncologist was bad news, as expected. Laurie's tumour has increased from about 4 cm across to 6 cm. That's not rampant, but enough for him to suggest that there were choices: stop treatment, or try Thalidomide. Thalidomide helps stop the blood supply to the tumour, can be taken as pills at home, and is what Laurie will do. We have to wait for all the paper work to be done (because of its chequered past, Thalidomide has to be applied for through government departments.) We should be OK by the end of the month.

With that bad news, it was, I suppose, natural to think about all thechanges of the last couple of years.

Two years ago we were both working, financially stable, excited about a new kitchen which Laurie did a lot of the initial work for, Kathryn finishing school, and involved in the Jeep Club and basketball. Laurie was able to score at basketball, work a full day, and enjoy driving.

Then came changes. Laurie noticed a lack of coordination on his left side. He couldn't just "find" the gear stick in the car, or the brake or clutch. He tripped over tools on the floor, and couldn't work properly.

The diagnosis was swift, and he hasn't worked since. Nor has he driven the car. The Land Cruiser has gone, and with it the 4WD and camping lifestyle. Nor have I worked since, so finances have become strained. Trips to Centrelink have added to the stress.

Now we organise activities so there is always someone with Laurie, which he finds very stifling. But after a few seizures it is necessary. Any outing has to be organised so that we plan to leave earlier than we need to so that last minute things (a coat, or check the TV is off, or clean teeth or any other possible tasks) can be done and we can still get away on time.

Schedules are arranged around Laurie's appointments, basketball training or games, Janet's work at the Reject Shop, or Kathryn's baby sitting. Sometimes it is nice to have a time wqhen we are all at home for a meal at a reasonable time, and the car can just sit in the garage.

We are home most afternoons, and welcome visitors.

Tuesday, September 25, 2001 at 10:55PM

The big clean up of the garage after the party - and Laurie was able to help a bit, which was great. The car is back in its home, and there is room in the garage to move around. Amazing!

Tomorrow is the visit to the neuro-oncologist. We will get results of the last MRI, and Laurie is expecting the news to be bad. He feels that he has gone down hill the last few weeks, and is very frustrated by it.

Despite reducing dexamethasone dosage, his face and body are getting fatter, and limbs thinner. He now shuffles rather than walking, and has difficulty getting up the back steps. He can't look up and get things off high shelves, and can't turn around easily. Inability to see the left side of anything makes eating difficult as it is difficult to estimate what is on the fork.
Some memory is affected, as is logic. Some things have to be explained several different ways before they make sense, and then get told to others in a mixed up way. How frustrating for Laurie, and for us.

Anyway, will find out the results tomorrow, and update tomorrow evening.

Monday, September 24, 2001 at 9:20PM

Well, the birthday party is over, and despite Laurie's fears, there were no problems with the gas bottle or gate crashers. In fact it was a lovely evening, and the young people seemed to have a good time. Janet certainly enjoyed it, and surprised us with a thank-you gift and card. In fact the only down-side is that we over-catered, and will be eating sausages and salad and cakes for some time!

Laurie is tired tonight, and already on his way to bed. Very early for him these days, more usual is about 11:30. Still, if he can stay asleep it will do him the world of good.

Sunday, September 23, 2001 at 5:55PM

Janet is 18 today. As we prepare for her party tonight, we are grateful that Laurie is able to be here to celebrate her birthday, especially this milestone. The girls have decorared the garage most creatively. It's amazing what a few old curtains stapled to the shelves hide, and then a few balloons, streamers and Christmas lights add to the atmosphere.

Laurie has been worrying about the BBQ and the gas bottle fittings for it. He can't remember whether he has the correct fittings, or where they are if we do. Thank goodness for good friends and relatives who came to the rescue with the gas and with a couple of other small chores that needed doing.

During the last few weeks, so many things have given up the ghost at our place - the dishwasher, washing machine, clothes dryer, and now the lawn mower. We've replaced the first 2, decided to live without the dryer, and will replace the mower "one day". Max came to our rescue this weekend with the lawns, and they look great.

All these problems have upset Laurie, and he stews about them, and gets frustrated as he can't do anything about them. He feels that he has gone backwards fast over the last few weeks, and is not confident that the news will be good on Wednesday when he gets results from the last MRI.

At least the weather looks promising for tonight, and the 40 or so guests should enjoy themselves.

Friday, September 21, 2001 at 9:55PM

Laurie had a wonderful drive with our neighbour and good friend, Max today. They went to Healesville and Warburton and had lunch by the river in Warburton. Max had prepared lunch - soup, ham rolls and coffee - and Laurie thoroughly enjoyed himself.

While Laurie was out, I took Kathryn shopping. She bought new sneakers, and also learned how to fill out a medicare claim form. Then we went and picked Janet up from school, as the buses were on strike just as the holidays start. (Not really the buses on strike - just their drivers, but it meant no buses.)

The girls gave me the night off from cooking, as it is my birthday, and cooked tea. Laurie found it really difficult to manage his meal, found the fork in the potato, couldn't cut the meat at all. It is really hard to know how much to help, and when to let him go on by himself.

Wednesday, September 19, 2001 at 9:50PM

Laurie is spending most of the day sitting on the sofa in the family room, often with his eyes closed. And says he is just frustrated by the things he can't do, not depressed. He does cheer up however when anyone visits, and any visitors are very welcome.

There were just the 2 of us for tea tonight, as Janet was working and Kathryn had a break-up for her team. It was nice to only have to consider two lots of likes when preparing tea. Kathryn drove herself to her break-up, and was able to pick Janet up from work as well, so it was a break for me. Wonder how long the independent driving novelty will last?

Monday, September 17, 2001 at 11:01PM

Today was shopping day, and again Laurie sat on the seat outside Safeway, and found that he had people to talk to for much of the time. He spends a lot of each day just sitting, and occasionally nodding off. It is terribly frustrating for him. When he walks around the house now, he "furniture surfs" - holding on to the furniture to keep his balance and sense of place. Outside, he often uses a walking stick. It is hard to watch him finding his way, when only a few weeks ago he was walking freely, and filling in the days with odd jobs, done very slowly, but done independently.

Sunday, September 16, 2001 at 11:40PM

Today we cleared the garage so Janet's 18th birthday celebration can make use of the covered space. Next step is to staple up old curtains to hide some of the tools, and give a surface to which decorations can be pinned. It was quite a big undertaking, especially as Laurie wanted to sort out a lot of his spanners before putting them on shelves.

Kathryn was able to drive Janet to her refereeing tonight, which was a great break for me. Janet found the games interesting - grand finals for over 30 ladies, and some of the ladies became a bit excited and scored tech or unsportsmanlike fouls. And one of the unsportsmanlike fouls was her fellow referee's mother!

The weather has started to warm up, but Laurie still feeling cold. Maybe he'll feel the cold a bit less if the wind drops, as it has been very windy the last few days.

Saturday, September 15, 2001 at 10:30PM

The last Saturday of basketball until the middle of October. Both girls coached their teams in grand finals, and both came home with red flags. Kathryn's boys played especially well, and a team which beat them by 50 points in the semi-final only won by 3 points this time.

Laurie went to Margery's for tea while we did the basketball thing, and enjoyed himself away from the drafty halls. He has gone to bed now, earlier than our usual bed time. Says it is warmer in bed, and there is nothing on TV worth watching.

Thursday, September 13, 2001 at 10:00PM

Kathryn got her driver's licence today! She is thrilled and so are we. She has had her first solo drive, and returned in one piece.

The girls played basketball again tonight, and despite the team's best efforts, were soundly beaten.

Laurie continues to feel the cold, and spends lots of time trying to adjust the central heating thermostat. He hasn't suceeded yet in getting the whole house warm enough for him, so we often end up in the lounge which has a space heater which heats the room up very quickly. He also is having difficulty navigating round coffee tables and other furniture, especially if the table is on his left where it can't be seen. Don't quite know how to help with that problem.

We went for a walk this morning, which was nice. Walked about 4 blocks near home, then dozed in front of the TV.

Wednesday, September 12, 2001 at 11:50PM

Laurie has been coughing a fair bit, and was worried because there was blood in his sputum. So off to the doctor in case it was a problem. Fortunately it does not seem to be - just a blood nose that he swallows and then coughs up. No nose blowing or clearing for a few days should stop it, but tests are being done just in case.

Tonight was the final school concert that Janet will be involved in. After 7 years of attending their concerts it was sad to think this was the last. Her last ever performance for the school will be on presentation night in early December. It will be the end of an era for us.

Tuesday, September 11, 2001 at 10:10PM

Margery and Rodney called over this morning on their way to the hospital where Marge expected to get her plaster off. Another step in her recovery from a broken ankle which shortened their trip round Australia.

Today was MRI day. We got to the hospital early, and they wereable to do Laurie's MRI straight away. It takes about ¾ hour, so we were home fairly quickly. Laurie said they had a bit of trouble getting the dye in as his veins are objecting to all the piercings they have endured over the last 2 years, but got there. Now we wait for a couple of weeks for the results - and that's the hard part. Meanwhile things will go on as normal, with school, uni, basketball (Grand Finals this Saturday), and general chores.

Sunday, September 09, 2001 at 11:00PM

We went to Margery's for lunch (Laurie's sister). Her husband, Rod, cut Laurie's hair and beard to no 2 all over, so he looks better, and feels better. The mo especially is better, as I just cant trim that properly, and Laurie's vision and tremors make it almost impossible for him to do. Now his mo will not act as a sieve for everything he eats! It was nice to have the time with them, and Margery is just as frustrated as Laurie as she is pretty well housebound at the moment, with a broken ankle.

Kathryn's boys won their preliminary final last night. They did not really expect the win, but were very pleased with themselves.

Saturday, September 08, 2001 at 6:40PM

Another Saturday with a lot of basketball, refereeing and coaching preliminary finals. The girls are also working on the door at Koonung this afternoon, and watching whatever games are scheduled there. We will pick Kathryn up soon to take her to coach her boys. Janet's boys had a surprise win this morning, so they are through to the grand final next week.

Laurie has spent most of the day watching TV, getting square eyes. It was too cold and windy to do much outside, so inside was the place to be.

Thursday, September 06, 2001 at 10:00PM

A couple of fairly quiet days. Today Laurie's sister, Lorna, and her husband Clive came to visit. Haven't seen them for ages, and Laurie really enjoyed their visit.
He has seen all his family in the last month and has enjoyed the visits greatly. Finished up the day with the girls playing basketball (and losing again). That is a good social time for us as well as most of the parents attend the games, and chat in between cheering their daughters on.

It was warmer today out of the wind, and quite mild at the basketball tonight which was a pleasant change.

Monday, September 03, 2001 at 9:50PM

Laurie had been complaining about not getting out and about, so we went for a walk which started out to be just around the block, but ended up a bit over a kilometre. It was very pleasant in the sunshine, and so many spring flowers are out, with all the scents on the breeze. Then shopping in the afternoon, and again Laurie sat on the seat outside Safeway and talked to anyone else who sat there too. It got him out of the house, and he quite enjoyed it.

Sunday, September 02, 2001 at 11:25PM

What a great Fathers Day for Laurie. Beryl rejoined us this morning, before returning to McCarthur this afternoon. It was a great chance for the two of them to do a lot of catching up.

Then tonight the girls took over the kitchen, and with ingredients they had bought themselves, prepared a special tea and set the table and DID MOST OF THE CLEANING UP! It was most appreciated by their Dad, and by Mum too! In between times Janet went to work for 5 hours and spent all her time behind a cash register. She is tired tonight.

Saturday, September 01, 2001 at 9:50PM

Laurie's rib much better today, does the deep breathing without really thinking about it.

Had a visit from Laurie's sister, Beryl, two of her daughters, her son-in-law, and her grandaughter(2). Was a lovely afternoon, especially as they are from McCarthur in the Western district and we don't see them very often. Laura, the 2 year old is at that delightful stage where she is beginning to really use language and is full of life and mischief.

Basketball semi-finals took up much of the day too. Some refereeing, some coaching, and the girls played. They lost, and are out now for the season. Kathryn's boys lost too, but have the double chance next week.

Friday, August 31, 2001 at 9:35PM

The pain killers for Laurie's ribs are working, and he is practising deep breathing. That would have been impossible yesterday.

Had a visit from palliative care nurse today - and the visit was welcome, not from medical reasons but social. Laurie seems to really buck up when anyone visits, and anyone medical seems to make him feel so much better just by their presence!

Thursday, August 30, 2001 at 9:45PM

An easy morning at home, rising late, and doing little. Then this afternoon, picked up our brother-in-law from Box Hill Hospital and took him home, spent time there, then took Laurie to the doctor. He has pain in his ribs on one side, doctor thinks he may have broken one rib, but little that can be done, so he gave Laurie pain killers and suggested deep breathing to prevent pneumonia developing. The pain killers should make the breathing easier - we hope!

Kathryn went for a driving lesson today, and is booked in for a licence test on 13th September. Should be good to have another licensed driver in the family.

Wednesday, August 29, 2001 at 10:45PM

This afternoon a volunteer visitor sat with Laurie for 2 hours, and I was able to go out with Kathryn and wander around the shops. It was lovely to have the time with her, and although we didn't buy much, it was a chance to talk and relax. Geraldine will be coming most weeks, to allow the girls and me a break. Laurie seemed to get on OK with her, they played drafts and had a cuppa, which filled in their time fairly well.

Monday, August 27, 2001 at 11:10PM

Seem to have spent most of the day out and about today. First it was the shopping, and Laurie felt OK to come today. He made it round the supermarket without too many problems, then decided to wait for me to finish the rest. He found a bench in the centre, and seemed to attract people to talk to, some he knew, some he didn't. It filled in the waiting time very pleasantly.

Then this afternoon it was out to get a new globe for the headlight. Laurie came along for the ride. We bought the globe, and some wiper blades at spare parts, and they installed them at no charge! Guess one of the advantages in having learner drivers in the family is that if they are backing into the garage, I can get out to unlock the garage, and see things like blown globes.

Then it was home to some chores and cooking tea, and a committee meeting for basketball tonight.

Sunday, August 26, 2001 at 9:40PM

Laurie is really feeling the cold. He complained of feeling cold in bed last night, and despite two pairs of socks, thick track pants, flanelette shirt and 2 windcheaters, plus the heater, was cold all day, especially his legs. We have the pot belly fire lit at night too, and everyone else is stripping off because they are too hot.

Not much doing today - a lesson on how to use the internet for Laurie, and some baking by me.

Friday, August 24, 2001 at 9:20PM

Well, we made it to the hospital in plenty of time. Laurie had a few problems getting the chemo flowing, but was finished in 4 hours. Came home and started to eat - as always he was hungry. The dex (drug which reduces swelling in the brain) seems to cause an incredible hunger, and Laurie often has to force himself to stop eating.

He is still feeling the cold, and wears multiple layers of clothing, then turns the heater up in the evening.

Thursday, August 23, 2001 at 11:50PM

A productive morning on the telephone, sorting out possibilities for insurance when our daughters get their driving licences. The first will be in a couple of weeks, so it was important to find out now.

Also managed to get in touch with Laurie's sister, who is on her way home from Wyndham and Darwin, where she was treated for a broken ankle. Pity it cut short their holiday, but home is the best place to recuperate.

Laurie went to see the opthalmologist this afternoon, and was told nothing he didn't already know. He also had a blood test to check that it is OK to go ahead with the chemo tomorrow - it is OK, so we'll be over at the Austin by 9:00AM. That means early rising for us.

Wednesday, August 22, 2001 at 4:55PM

Today we had 2 visitors. First was Doug who called in as he was in the area, then Laurie's cousin, Russell. It is really nice to catch up with friends, and makes the day much more interesting.
I went and got a hair cut - lovely to just relax and be pampered for a short while.

Mondat, August 20, at 1:00PM

A difficult couple of days. Laurie finding that he has nothing to do, as most chores and hobbies are beyond him, so he is looking for outlets. A visit to his nephew's family yesterday helped, but this morning he didn't feel up to going shopping. I did find it much quicker by myself, but missed his company dreadfully. He seems to spend a lot of time now just sitting and thinking.

Friday, August 17, 2001 at 11:20PM

A couple of days ago I was standing in the bathroom, and thought that we could improve on the towel rail situation. Made a suggestion to Laurie, and as a result, have spent much of the last 2 days helping to instal a long towel rail and two towel rings. It has made a huge difference to the bathroom and has kept Laurie busy doing and instructing.
These days Laurie really feels the cold. Last night we went to basketball, and he wore 2 pairs of socks, long johns and 2 tracksuit pants, a singlet, flanelette shirt, windcheater and coat. And he was still cold! He wears multi layers during the day too, and while the rest of us are stripping, he is still complaining of the cold.

Wednesday, August 15, 2001 at 8:20PM

A visit to the neuro-oncologist today. Not much to report, as there was no MRI scan to report on. But the comment was made that the BCNU is a second choice form of chemo. Tests showed slightly less strength than in the past, and more exercise needed to try and rebuild muscles. The re-building may also be helped if Dexamethasone can be successfully weaned this time. The dose is to be reduced slightly for 2 weeks, then a bit more in 2 weeks. Last time there were problems, so we are hoping for the best this time.
The rest of the day, Laurie supervised me putting up a towel rail in the bathroom. Still more skills I am learning. Anyway, the girls are happy with the result, as they will be using it.

Tuesday, August 14, 2001 at 10:50PM

Laurie getting depressed, feeling worthless.
I guess it is hard for him when there is so little he can do now. Most of the day now is likely to be spent inside, doing not much. There's not much on TV, so the radio is on all day on talkback radio, so his mind is stimulated.
Beautiful weather today, even got some washing dry!

Monday, August 13, 2001 at 9:30PM

Laurie seems to be increasingly tired. He has started using the walking stick again for support, and is finding the shopping more of a struggle. There is a load off his mind now the rubbish is gone, but so has the challenge to get something finished.

Today included a trip to the GP to get the insurance form filled out for our next month's income. Then home for lunch and a few chores before tackling the supermarket.

Sunday, August 12, 2001 at 10:40PM

Laurie has spent more time out and about with his brother. It has been a wonderful 4 days for him - family being important, and the opportunity to get out and see people he would not normally see has been great. Graham went home today, so now it's back to normal.

A visit to the neuro-oncologist is scheduled for Wednesday this week. It will probably not tell us much, as there is no MRI scan until next month. But it will be a prelude to the next round of chemo which will be on Friday week.

Friday, August 10, 2001 at 9:50PM

An early start, with Laurie, his brother, nephew and a friend, and all the rubbish was loaded into the skip in just over an hour. Thank goodness Laurie had ordered a 4metre bin rather than the 3 he had thought of. The bin was FULL. Could possibly have used a bigger one. The bonding session afterwards was good too, a time for "boy talk".

Then it was off for some more visiting for the afternoon, while I waited at home for a call from Centrelink, which of course, did not come. Social worker has been on to them on our behalf, and is hoping that she has stirred up some action.

Thursday, August 09, 2001 at 10:25PM

Graham finally arrived, and he and Laurie spent today out visiting. They both enjoyed the day, and I enjoyed my day of freedom! It was lovely to know Laurie was enjoying himself, and a day apart was refreshing for us both.

Tomorrow we have a visit from a social worker, and the boys will get rid of the rubbish into the skip which arrived this morning. That will be a load off Laurie's mind - the rubbish has been really bugging him.

Sometimes it is difficult to cope with Laurie's moods, as he worries about his future, and about ours. I would enjoy a bit more time to "smell the roses", but Laurie seems to feel guilty if he is not working. Now that he is finding himself not quite so mobile, it is harder to just go for a walk. Still, we get by, and Laurie does get a few things done.

Wednesday, August 08, 2001 at 11:00PM

Laurie's brother, Graham, will be arriving any minute to spend a couple of days with us. That will be great for Laurie, as the brothers get on so well. They have a couple of visits lined up, and will catch up on some chat as well.

Some movement on the Centrelink front I hope. Our local member's assistant was on the phone today, and will see what she can find out for us. And a social worker from palliative care is going to see what she can do too - will have a meeting with her on Friday. And a friend has given us a contact at Centrelink to ring, so hopefully we will get some action. And help.

Laurie struggling to stay awake until Graham gets here, after a fairly easy day.

Tuesday, August 07, 2001 at 11:00PM

A visit to the GP this morning for more Dexamethasone for Laurie. That led to a discussion of Dex effects - cushingoid (sp?) effect: chubby cheeks and torso, no muscles left on arms and legs. Laurie had been concerned about the weight gain on his torso, but was told not to worry too much - it is the dex effect. So a balanced diet is what is needed, and keep up the protein to help build some muscle.
Also results of blood tests for me: only iron deficiency which was only to be expected. May take weeks, even months to get my energy back after the last few weeks plus the stress of the last 2 years.
This morning I managed to get on talk back radio, discussing Centrelink. Laurie didn't realise it was me, and when I came back into the kitchen, he was quite excited about the woman on the radio talking about the same problems we were having! The compere's advice was to contact our local member, which I was already doing.

Monday, August 06, 2001 at 11:15PM

What a day. I had read that if the family income is under $48K then disability support pension and carers payment is possible. So rang Centrelink. "Sorry, your payments at the moment (income protection insurance) are considered as compensation, so you are not eligible!" If it was not compensation, we would have been eligible for at least $200 a fortnight. So we are penalised for looking after ourselves.Of course this information does not help when finances are an issue.

We did the weeks shopping this afternoon, and paid a few bills. Then it was home to a bit of TV and cooking. Laurie had his snooze in front of the TV.

Sunday, August 05, 2001 at 9:20PM

There are times on this journey that we are very alone. Today was one of those days. Laurie was puddling in the shed, I spent time doing chores inside, then did some gardening. These are solitary chores, the kind that would be great if they were interrupted by a visitor or a phone call, to change the hum-drum into something more exciting.

Meanwhile the pile of stuff for the skip is growing fast. Where does one family find so much rubbish? We will add to it with prunings and weeds, so the pile should be considerable.

Laurie continues much the same - no vision in the left field, the shakes which make many chores difficult, and very thin, and feeling the cold (I rarely need more than one light layer inside! but he is wearing 2 or 3.)

Friday, August 03, 2001 at 10:00PM

More clearing out of junk ready for a skip. probably next week. It is a huge job, much too big really for Laurie, but he is determined! It leaves him really tired at the end of the day, but doesn't help him to sleep any longer at night - still only 4 or 5 hours a night.

Wednesday, August 01, 2001 at 11:30PM

Laurie had a better day, with a visit to a friend's (Les) workshop. Les's brother, Jeff, was also there, so a chance to catch up. This was one of those times when i am "just a driver" and Laurie can enjoy the shed thing with his mates while I listen to the radio or catch up with some reading.

Then he got some time on the computer, and I was able to do some baking, with some assistance from Janet.

The one sad spot in the day was news that my aunt had died in Hobart. I know she was 85, and had been ailing for some time, but it still came as a shock.

Tuesday, July 31, 2001 at 10:15PM

Laurie had a good day until late this afternoon. Then he had been working in the shed and when it came time to lock up and come in, his left hand had the tremors worse than usual, and he couldn't find his pocket or the hand rail to come up the steps. Fortunately a rest seemed to be all he needed, but it was a worry for awhile.

He's really looking forward to seeing his brother next week. Has had news that his sister is now in Darwin hospital with her ankle pinned - not a great holiday experience for Marge!

Monday, July 30, 2001 at 11:20PM

Laurie has become terribly thin, arms and legs are skin and bone. However his face looks fatter, and he is heavier round the torso. This seems to be, in part at least, due to one of his drugs which helps prevent swelling in his brain, but makes him extremely hungry and affects his muscles. He feels now that he is losing some strength too. It is so hard to watch these changes, but to try and stay positive.

On a happier note, his brother is coming from Queensland to visit for a couple of days. They will enjoy getting out together to catch up with friends, and just to share some quality time together.

Sunday, July 29, 2001 at 9:45PM

We did the week's shopping this afternoon, with Laurie able to find a few things independently (with the aid of a walking stick.) It is great that he is still able to do things which add to his value to the family.

Saturday, July 28, 2001 at 10:45PM

The washing machine hasn't expired! Laurie pulled it out and had a look, found the problem was a split in the outlet hose! Easily replaced, and a lot less than a new machine.

Laurie still tired, sleeping a lot these days, and still frustrated by vision deficits. He is now furniture "surfing" more for a sense of location than for true support. Otherwise well.

Friday, July 27, 2001 at 9:15PM

Our washing machine is on its last legs, so we spent time yesterday looking for a replacement. Seems all the appliances are expiring at once - the dishwasher went a couple of months ago, and the clothes dryer is making horrible noises too.

Today was spent quietly at home, with Laurie on the computer and me in the kitchen. It was cold and miserable outside, much nicer inside.

Tonight Laurie is pretending that I can wake him as he dozes in front of the TV, but he is very difficult to rouse until he decides it is time to wake up.

Had a phone call from his sister tonight - she and her husband are doing the round-Australia trip, and have had an interruption. She slipped and broke her ankle, is currently in Wyndham and will be sent to Darwin tomorrow to get it pinned. Seems our family just can't keep well!

Wednesday, July 25, 2001 at 3:40PM

I'm back, hopefully cured this time. Laurie was cared for by my sister in law - thanks a million Vicki - so the absence was less stressful than it might have been. Laurie is back checking out his shed this afternoon, having spent the morning and the first half of the afternoon on the computer trying to make a business card. It was going fairly well, but then it vanished from the screen, and now he can't find it.

Sunday, July 22, 2001 at 10:00PM

Laurie very tired tonight, and his left ankle is swollen again. He is thinking of a compression sock which would probably be a good idea. At present he is watching(?) TV with his leg elevated, in the hope that the swelling goes down as usual.

He finally agreed today that he needs someone around the house while I am in hospital, and we have gratefully accepted an offer from my sister in law to stay for a few days. I am so grateful for her offer, as I can now concentrate on me for a day or so, and hopefully get better.

So I will not be writing for 2 or 3 days. Will get Kathryn to enter anything important.

Saturday, July 21, 2001 at 6:00PM

The deficits in vision are causing Laurie problems. Even eating is difficult because he cannot see what he has put on his fork. He finds TV watching difficult too.

We got him some long johns the other day, and they have helped enormously in the "keep warm stakes". Laurie has been feeling the cold dreadfully, and the long johns have made a difference.

Today is basketball day for the female members of the household, and has gone from 8:30AM when I started refereeing until 10:00PM when Kathryn finishes coaching.

Tomorrow will involve a bit of shopping to get ready for my absence in hospital for a couple of days. Hopefully it will be the end of my problems, and will leave me with more energy to cope with whatever is still to come.

Thursday, July 19, 2001 at 9:30PM

Our 21st wedding anniversary today, and how thankful we are that we were able to celebrate it together. We got new tyres put on the car, had lunch in the Box Hill Food Court, then went to see Moulin Rouge. It was the first movie we have seen in at least 2 years, and quite good light entertainment. The music was fantastic, and the colour and movement made up for the lack of much of a story!

Came home and cooked tea - shepherds pie followed by creamed rice and bottled cherries. Not very extravagant, but family favourites.

It is great to be able to celebrate these milestones as a family, and to build memories for a time when the celebrations are not so easy.

Yesterday we had an assessment visit from the local palliative care team, not that Laurie needs care yet, but we need support in many ways that are tied up in caring organisations.

When we stop and count the deficits, there are a few for Laurie now: vision to the left, balance, tremors, especially in his hands, voice has changed, muscles on thighs and buttocks have gone, and memory is not what it was. Thank goodness for positives: can look after himself, feed himself, walk, with gudance in crowds, talk, see to the right.

Tuesday, July 17, 2001 at 10:45PM

Thank-you to those who have signed the guest book. It really feels as though we are sharing more when we get those messages of support.

Today we got rid of all the scrap metal which Laurie has being hoarding for years. Over 90 kilograms of it went to the scrap metal yard. There should be a bit more room in the shed now.

Laurie spent a couple of hours on the phone tonight, first with his brother in Queensland, then with his sister in Tyrendarra. It is wonderful that modern technology lets us keep in touch so easily.

He seems a bit better again, but is now painfully thin in the legs, and his vision problems have severely limited his use of the computer. Don't know what he will do to amuse himself once the rest of the rubbish is cleaned up.

Sunday, July 15, 2001 at 9:00PM

Feeling philosophical tonight. Two years ago we had two incomes, and were looking forward to a future when the girls were independent and we could enjoy the four wheel driving which has been Laurie's hobby since he was old enough to drive. Then came the schock of the tumour, and our lives changed dramatically. Not only did we have to come to terms with the medical knowledge which was so important, and cope with the emotional turmoil of diagnosis, surgery , radiotherapy and chemo, but we had to cope with both being unable to work, and the severely curtailed lifestyle choices that left us with.

Somehow we have come to terms with all the changes, and have found other ways of coping financially. But neither Laurie nor I have really come to terms with not going to work. And it's not so much the financial side of work, but the social aspect that we miss most.

Laurie is still trying to sort out a lifetime's hoarding of bits and pieces which may be useful one day. Their "one day" has come and gone, and they are being sorted out, mostly to go in a dump bin some day soon (when everything is sorted, so it may be later rather than sooner, as the sorter is much slower than he used to be.)

Friday, July 13, 2001 at 10:15PM

Friday the 13th may have started badly, but has finished much better. Laurie got some rest during the chemo, which flowed beautifully this time. Whether it was the rest, or the confidence that something was being done, he looks and feels much better tonight, and is no longer groaning with pain. He has also consented to have palliative care reinstated, more for support for the girls and me than because he needs much care yet. It will be helpful for the girls to know there is someone to call on in an emergency when I am in hospital in a few days.

Friday July 13th at 11:50AM

Laurie had a very restless night, then got up about 4:00AM to go to the toilet. There was an almighty crash, and he was on the floor, unable to orientate himself at all. He couldn't find his left arm (it was under him) and it took some time to get him up again.
Didn't call an ambulance as he was going to the hospital this morning anyway for day chemo. One of the doctors there had a look at him, rang the neuro-oncologist, and they decided that the dexamethasone needs to be increased again. Sure hope that helps him, as he has been really miserable for the last 24 hours.

Thursday, July 12, 2001 at 4:00PM

This morning Laurie went for his pre-chemo blood test. He made sure he had plenty to drink before the test, but the collector still had trouble finding a vein which would flow. She recommended that Laurie have plenty to drink before the chemo tomorrow to help it flow properly.

Not one to do things by half, Laurie filled a bottle with water and drank as much as he could. Now he is really tired and bloated. He has gone to bed, and hopes to sleep so he can go out tonight to the Jeep Club meeting. Just hope that all the drinking stands him in good stead tomorrow.

Wednesday, July 11, 2001 at 9:45PM

Laurie still only sleeping 4 or 5 hours in bed, so gets up at 7:00AM, has breakfast then potters around and falls asleep any time he sits down for more than a few minutes. He's really exciting company in the evenings as he usually sleeps in front of the TV.
Tonight his left leg is elevated again, for the first time in ages, as his ankle is swollen. Here's hoping that elevation is all that is needed.
Tomorrow he goes to have a blood test prior to chemo on Friday. Blood counts have to be satisfactory for the chemo to proceed.

Monday, July 09, 2001 at 5:30PM

The monthly trip to the GP today to get a form filled in for insurance payments. Ofcourse the form does not really relate to an ongoing illness, so the doctor finds it difficult to fill in. Any way, it is done and posted for this month, and the cheque should arrive next week.

There was also some discussion about the desirability of using a wheel chair sometimes when shopping - more for the speed of movement and the probability of other people making way. Don't know whether Laurie is convinced, but at least the seed has been planted.

Saturday, July 07, 2001 at 9:25PM

Janet came back from Queensland today, so another drive out to Tullamarine (and this time we didn't lose the car in the car park.) She has just now stopped talking - to go to bed and catch up on some sleep.

Courtesy of my mother, we had tea out at a Chinese restaurant tonight. It was chosen because their food is usually cut up small, and fairly easy to manage when you have difficulty because of deficits caused by BT.

No chores for Laurie today either, so fewer frustrations than usual.

Thursday, July 05, 2001 at 10:55PM

Not a lot to report. Laurie continues to feel "wobbly" after much effort, and was pleased to have an excuse to not work today. (I had an appointment at the hospital this morning.) So we went to visit friends in the afternoon, and enjoyed a chat.

Janet rang again last night, still bubbling over with excitement, but very tired. She comes home on Saturday, and I suspect will have a long sleep Saturday night.

Tuesday, July 03, 2001 at 9:55PM

17 years ago we put a hole in the door to the back porch to allow our cat to come and go. For that 17 years, a draft has whistled through it, and Laurie has promised to make a cat flap for it. Well, it has finally happened. It has taken 2 days to cut a rectangle of perspex to size and hinge it to the hole. A job which once would have taken an hour or two, and it took two days!

Last night we got a call from Janet in Queensland. She is more excited than I have ever heard her, loved her first flight, and is enjoying a 4½ star resort. They played 3 games of netball yesterday, and won 1. 7 more games to go over the week.

Monday, July 02, 2001 at 9:00PM

We did the shopping today, and Laurie managed to push the trolley all the way round Safeway. That's quite a good effort for him, especially managing to do it without running in to anyone.

Yesterday we took Janet to the airport to catch a flight to Queensland. She is part of a school netball team playing in a tournament on the Gold Coast. Ten girls, two teachers and one parent took off. They should have a great time.

Saturday, June 30, 2001 at 9:30PM

There have been changes to dosages of Laurie's pills, and he is having fun(?) keeping up with the changes.He now regularly takes 2 drugs to help prevent seizures, one (reducing the amount now) to reduce swelling in his brain, and 1 to try and stop tremors in his hands.

We went to watch the girls play basketball this evening, and they lost by 1 point. Not bad against the top team when our girls are 7th on the ladder. Then watched the boys Kathryn coaches - and they won very convincingly.

Friday, June 29, 2001 at 9:30PM

Laurie foound another job to do today - the lounge room door came off its rollers, and broke one of them. I learned more about where to find bits in the hardware store, and how to select the right size and quality roller. Then it was home for the work to start. that involved a lot of looking up, which is hard, and turning back and forth which is harder. But persistence paid off and the door now rolls smoothly again.

Wednesday, June 27, 2001 at 9:30PM

Up and off to see Dr Cher this morning (neuro-oncologist). Blood test first. It is handy they have pathology lab there, so a few minutes early and blood is taken and results ready by the time we see Dr Cher.

He was only running just over an hour late this time (good for him, but he does give all the time you need once he sees you.)
Laurie's scans showed little change, with the swelling a bit less, tumour about the same. Dex can be reduced (that is a steroid, and for Laurie it does not build muscle, quite the opposite.) It will be reduced gradually so that hopefully there will be no ill effects from the reduction. So with appointments discussed for chemo, and next MRI scan, it was off home for lunch.

After lunch, went to visit Laurie's cousin which we both enjoyed. He and his wife head off for a holiday on Sunday, so most of our Melbourne relatives are away.

Tuesday, June 26, 2001 at 11:45PM

A less stressful day. I visited the gynaecologist at Box Hill Hospital, and will have to go in for more surgery, am on a waiting list. As the surgery is not too major, will probably only be day, so we hope it is not too far off. At least knowing makes it easier to cope.

Laurie finished the flyscreens today, and is pleased that they are done and useable.

He goes to see the oncologist tomorrow morning, so there will be more news tomorrow.

Monday, June 25, 2001 at 11:55PM

Today we both went to see the GP for a long talk about some of what has been happening, especially our moods and ways of coping. It gets harder and harder for Laurie, and the Dr confirmed that Laurie has lost all vision to the left hemisphere in both eyes. Of course that upsets his balance and coordination, which leads to frustration as he tries to do things.

Afterwards we had the best talk we have had for ages, discussing our fears and frustrations, and how we can help Kathryn and Janet. We just sat in the car, where we knew that we would not be overheard, and had time to chat. It was a shame when the phone rang for us, and we had to go inside.

Laurie's biggest frustration is that he can't be left alone for more than a few minutes, and although I try to let him go when he is outside in the shed, he really misses being able to have his complete independence. It's hard to have to wait for me to drive him anywhere, and hard to have to be "minded" if I have to go out. And while I am not well at the moment, that is made harder, as I may have to go back to hospital for a while, which puts strain on us both (and on the girls).

Enough of the miseries for tonight. Hope we can be more cheerful next time.

Saturday, June 23, 2001 at 9:20PM

Laurie very tired tonight, and had to be woken twice for tea. His deficits are causing depression, he can't cut a slice of bread, finds eating difficult, as he cant see what is going on to his fork. The vision is also making use of any tools more difficult. Muscles in his thighs are almost non-existent now, which makes sitting in stadiums watching the girls play basketball a little uncomfortable. (Think we'll have to take a cushion next week.)

We watched the girls play this evening, and despite the best efforts, they were well beaten. Their team only has 5 players, and A grade games without a sub are a bit rough.

Friday, June 22, 2001 at 5:00PM

Laurie proved today that all computer tasks are not beyond him, and finished loading Windows back on to the old computer. He had visions of networking them, but found that it was beyond our finances. At least this way there are some games on the old one, which will leave this free for more important tasks.

We also went and got hinges to finish off the fly screens. It's amazing what I am learning as I go out and buy things with Laurie. Today I learned to work out which pop rivets were made of aluminium, and how to measure them. Hope we ended up with the correct ones for the job! Guess we'll find out tomorrow.

The big clean up is still continuing, and the pile on the nature strip is growing. I will add to it with some weeds over the week-end, which should help the garden along.

Wednesday, June 20, 2001 at 10:50PM

Laurie tried to put some finances into the computer this morning, but found that he couldn't see properly either to read the receipts or to enter them. It is so frustrating for him, as the computer had become his hobby, and many times through this journey it has been his salvation as he could sit and work peacefully. It is terribly hard now that that is one less option.

When he couldn't use the computer, he went crawling under the house to where so many bits and pieces are stored. He brought out lots of old taps, door knobs, towel rail ends, etc. etc. It's amazing how much he had collected in a working lifetime.

Tonight we went to a school music concert which Janet helped to compere. She also got to perform, and it was a most enjoyable evening. We have seen many of the performers mature over their 6 years of high school, and never cease to be amazed at the talent.

Wednesday, June 20, 2001 at 3:30PM

This morning Laurie tried to enter some financial data into the computer, but couldn't read any of the receipts. He finds that so hard, so frustrating. The computer is a hobby he has developed in the last few years, and it has been his salvation during much of this difficult journey. Now that he can't see properly, the computer and TV are both less helpful. As he couldn't work on the computer he has spent much of the day crawling under the house and sorting out much of the detritus of a lifetime of hoarding. He brought so many bits and pieces here when we married, and has added to them over the last 20 years. What a collection! Plumbing fittings, towel rail ends, door knobs, etc., etc.

Monday, June 18, 2001 at 10:30PM)

A busy day today. Started with a friend's funeral this morning (our third funeral in 2 weeks). the service was moving, and a chance to catch up with many friends afterwards. Laurie and I went out to lunch afterwards. He is becoming selfconscious about his lack of coordination when eating, and wanted to go while he still can eat with tools and not make too much mess.

This afternoon it was off to the shops to visit the chemist and get the weeks supplies at the supermarket. This time Laurie chose to wait on a seat outside the supermarket while I went round and did the shopping. He finds the walking round corners, and navigating between people and goods in the aisles just too hard.

He is getting so frustrated at having to have someone with him all the time, and having to be looked after. However some thoughts get muddled, and he has difficulty doing many simple chores, although can still prepare a two-course breakfast (cereal, micro-waved egg and toast, as long as I cut the bread for his toast.)

Sunday, June 17, 2001 at 6:00PM

Another teary day as we come to terms with the way each of us is dealing with the stress of Laurie's illness. Laurie has been upset too, with no driving for so long, and no ability to do what he wants when he wants. A trip to the library and the supermarket broke the ice for a short while.

Saturday, June 16, 2001 at 6:00PM

The last couple of days have been tough. I'm still having problems, and spent much of yesterday in tears. Laurie still puddling with the garbage collection and getting depressed at how much he can't do. It really is hard. A rut that is very difficult to get out of.

Thursday, June 14, 2001 at 3:10PM

We have received notification of a hard garbage collection in a bit over a week, so Laurie is taking the opportunity to get rid of some of his collected junk. It is a slow process getting it all out to the nature strip, so we are one of the first houses in the street to start. That way, it can go out a little bit at a time.

It's freezing cold here today, the coldest day for ages and hasn't reached double figures yet. Maybe the snowfields will get a fall tonight.

Tuesday, June 12, 2001 at 4:45PM

Today was the correct day for the MRI, and also to go to the GP for the insurance form to be filled in again. (That keeps us going financially for another month, and gives Laurie a chance to air any concerns as well.)

Turned up a few minutes early for the MRI (better than the week early we tried last week!) They were on time, which was great. They had difficulty finding a vein for the dye though, three tries before success. Seems that veins don't like to be punctured frequently, and co-operate less and less. Finally got the scan done, now just wait for the results in 2 weeks.

Sunday, June 10, 2001 at 9:00PM

Laurie is having more trouble staying asleep, and was up very early this morning, watching a video and then using the computer. He finds even watching TV is getting difficult, and his sense of balance is worse too.
His muscles on his legs seem to be vanishing, so we may have to try a bit more walking.
We had a visit from his niece and two great nieces today. Niece is really our generation, Laurie being the youngest by a long way in his family.
Janet is playing her flute (her favourite instrument). It seems to be one way she copes with stress.

Friday, June 08, 2001 at 4:10PM

Two funerals in two days, and feeling a bit drained. Yesterday was a friend from the Jeep Club, who lost his battle with bowel cancer. Today was a friend and neighbour from Laurie's childhood. Both at the same chapel at Lilydale, with the same celebrant. The ceremony today brought much of Laurie's past back to him, with many people attending who he hadn't seen for years. There were a lot of "question mark" faces as memories were jogged. (Funny how people look different after 20 years!)

Exam time has started for the girls, so a stressful couple of weeks ahead before the holidays start.

Wednesday, June 06, 2001 at 3:50PM

The gremlins got into the system today. I had written the date for the MRI in the diary which organises our life. When we arrived at the hospital, it was to be met with blank looks, as Laurie's name was not on the list. Checked the appointment, and it is for next Tuesday! So the day was pretty much wasted, as there was not much Laurie chose to do before going out.

Tomorrow we go to a funeral for a friend who died on Sunday evening from bowel cancer.

Tuesday, June 05, 2001 at 11:05PM

Laurie is increasingly tired and "wobbly". He spent much of today trying to finish a fly screen, but got increasingly frustrated, so went and spent a couple of hours with a neighbour who has been a great friend through all of this journey. Max at first didn't know how to treat Laurie, like so many people, but has found that just talking about everyday things helps them both to feel normal.

His MRI scan is tomorrow, and then a three week wait for results. They will be a hard three weeks, especially as Laurie doesn't seem to think the results will be wonderful.

For the first time tonight, I noticed hand tremors, a bit more than the "shakes" which he has always had. Am hoping it means nothing, but worries do surface in my mind.

MONDAY, JUNE 4, at 11:50AM

The week-end saw Laurie trying to do a few chores,like pruning high branches from next door's trees to clear our gutters. It proved to be beyond him, and made the "Wobblies" much worse.

Today it is lovely and sunny, and he is trying to finish fly screens, with more success than the pruning.

MRI scheduled for Wednesday afternoon.

Friday, June 01, 2001 at 5:40PM

Up earlier than usual and off to the Austin for day chemo. Laurie went in at 10:00, expecting to be finished in 2-3 hours. They had trouble finding a vein, and getting the drip to run. Three tries to get started, so he was there for over 5 hours. That's a long time sitting in one place, with only sandwiches and a cuppa to relieve the boredom.

MRI next week, and results at the end of the month.

Thursday, May 31, 2001 at 10:00PM

A fairly quiet day, ready for chemo tomorrow. It will be 2-3 hours tomorrow for Laurie. We are just praying that the BCNU (chemo) will help.

Tuesday, May 29, 2001 at 9:50PM

We did get time to "smell the roses" today - well not roses exactly, as we went to the zoo. I didn't see any roses, and certainly the smells were not rosy! Still, we saw the lion cubs, the baby giraffe, and one of the young gorillas. Laurie felt pretty wobbly by the end of the morning, but says it was all the turning to look at things rather than the walking.

Monday, May 28, 2001 at 11:45PM

A stressful couple of days. Laurie is trying to "finish" things while he can, so I will cope better when he is not around. I would prefer to take time out to enjoy our time together. I told him so, and a few tears from us both helped clear the air.

Monday, May 28, 2001, at 2:45PM

A couple of stressful days, where Laurie has been trying to prepare for our future without him. I finally cracked yesterday and suggested I would rather enjoy the present than think about the future without him. Tears for us both, but I think they were healing for us both. Janet was aware of the conversation and the tears, but hasn't commented so far. Guess Laurie will continue with some of the chores he has set himself, but maybe without the same sense of urgency, and we may be able to find some time to "smell the roses".

Saturday, May 26, 2001 at 9:45PM

A busy day for all - basketball started at 8:30AM and finished at 8:30PM! Laurie only came to one game, spent the rest of the day on the computer trying to design a business card. The program just won't do what he wants.

Thursday, May 24, 2001 at 4:20PM

Yesterday was my turn - with a curette and hysteroscopy. Fairly minor, the whole procedure only took about 20 minutes, but I was out to it for a bit longer than that. i had Laurie worried, but the news seems to be good so far.

Laurie spent today trying to install a dishwasher. Hopefully it will be useable by tonight! Doing the dishes by hand is a chore, and they look untidy waiting on the sink for a reasonable sized wash-up!

The shakes seem to be Laurie's biggest problem, combined with the lack of left hand vision.

Tuesday, May 22, 2001 at 11:55PM

Laurie went for perimetry test today (testing field of vision) at the Austin. It confirmed what the local optician had said, with no peripheral vision at all on the left side. Got home at lunch time, then Laurie managed to fix the glove box in the car. The door had fallen off, and the light stayed on unless the catch was put in position. It really wasn't satisfactory having it loose in the car.
My turn for a hospital visit tomorrow, with day surgery.

Sunday, May 20, 2001 at 5:55PM

More frustrations for Laurie, with his vision making chores difficult. But then we read of other GBM IV sufferers who have done no chores at all since diagnosis. The frames for the flyscreens are being made ever so slowly, but they are getting done.

I got a letter on Friday, booking me in for minor surgery on Wednesday. Hope they don't have to change it at the last moment.

Thursday, May 17, 2001 at 10:40PM

Less busy today. Laurie got very frustrated trying to do some formerly simple workshop jobs. Took him ages to screw in one screw, and even then he had to get help. I don't know who finds it harder, Laurie trying to do the job, or me trying to let him do it himself!

Wednesday, May 16, 2001 at 11:40PM

A very busy morning, with a visit to the Respiratory Clinic at the Austin at 8:30AM to get baseline readings before chemo. Then to Repat for a blood test and visit to the neuro-oncologist.

He confirmed lack of peripheral vision in left side, as well as problems with balance. Blood tests are OK to have chemo on 1st June, although a final blood test will be done a couple of days before.

An MRI scan has been requested following the next lot of chemo, so after the next visit in 6 weeks, we should have some idea of the effectiveness of the chemo.

Tuesday, May 15, 2001 at 9:50PM

A tough day, as Judi had "female problems" and ended up in casualty at the local hospital for most of the day. I suspect I only got out tonight because Laurie has all his appointments tomorrow. It was hard for Laurie, not knowing what was happening, and I was beside myself too. Hope tomorrow is a better day.

Monday, May 14, 2001 at 8:45PM

Laurie feeling very "wobbly" today, and found the walk round the supermarket more difficult than usual. He says he can feel something in his head, and is working out lots of questions for the neuro-oncologist on Wednesday.

Wednesday will be a busy morning, with appointments at the Austin at 8:30 and Repat at 9:30.

Many thanks to those who have visited our site and left a message. The support is much appreciated.

Sunday, May 13, 2001 at 9:20PM

Not much has changed since Thursday. Laurie continues to tire easily, but continues to try to do small jobs around the place. Today it was putting rat baits in the roof, a job which previously may have taken 5 minutes, but today took over half an hour.

Thursday, May 10, 2001 at 5:15PM

Not the greatest day. Laurie went to the optician, and had a test of peripheral vision. The results, while not unexpected, were not wonderful. Laurie has lost peripheral vision on the left side of both eyes. That means he can't see on his left side, and doing things to the workings of the computer he can't see properly.

That really put a damper on our emotions, and it won't get any easier. Think there'll be a few questions for the neuro-oncologist next week.

Wednesday, May 09, 2001 at 10:30PM

Laurie went to visit the GP this morning, mainly to get his form filled in for income protection. Then it was off to the optician to see about his eyes. He has been having a lot of trouble seeing print or small objects (such as bits on the motherboard). His sight does not appear to have changed much, but another test has been arranged for tomorrow.

Tonight we went to tea with his sister and brother-in-law. They are leaving for the west on the week-end, and this was a chance to wish them well.

Tuesday, May 08, 2001 at 10:50PM

Laurie has spent the last couple of days being frustrated by a computer. A fan needed replacing, then the power box, which blew again when he tested it. Finally it is working again, and we are back on the Net.
Tonight he went to a computer users group meeting, and came home with lots of ideas, and a knowledge of the costs which are beyond us!
Tomorrow it's off to the GP then to the optician to see if his eyesight can be helped at all. At present he barely looks at the paper, and finds many tasks beyond him (including fixing the computer) because of his vision problems.

Sunday, May 06, 2001 at 9:50PM

A visit to Laurie's nephew and his family this afternoon was a welcome diversion. It was so nice to get out of the house and see other faces.

Of course we saw some yesterday at basketball too, and enjoyed that, especially when the girls won their match.

Saturday, May 05, 2001 at 10:50PM

Two more days with little change. Laurie has spent a lot of time sitting at the computer, trying to work out how to get the old one ready to network with the new one. He finds that easier than working outside, where the constant change of position upsets his balance.

Thursday, May 03, 2001 at 10:15PM

Laurie has been very "wobbly" the last few days. Today he didn't go outside much, but we spent time clearing out some of the old papers and magazines in the study. We now have a huge pile of paper ready for the recycling collection, and space on the bookshelves.

The wobbliness seems to get worse when Laurie looks around or up. His eyesight is getting worse too. Is it pressure, or the dexamethasone? He barely looks at the paper now.

Went to watch the girls play basketball tonight - they won - and had a chat to the other parents. Amazing how a social chat lifts the spirits.

Tuesday, May 01, 2001 at 11:25PM

Didn't get to the page last night as Kathryn had an assignment due in this morning. As usual it was a last minute exercise!

Laurie hasn't done anything exceptional for the last couple of days, just more pottering in the back yard and still tired in the evening,but not sleeping well. His eyesight still giving him trouble.

Sunday, April 29, 2001 at 9:30PM

Another basketball orientated day, with presentation day for last season. We all went, and quite enjoyed it.

Laurie very tired again after it. He is becoming ever slower in doing the tasks he tries, and is getting so o o o frustrated. It is particularly hard after having so long when he was fairly efficient.

Saturday, April 28, 2001 at 10:45PM

Laurie pottered again this morning, then spent the afternoon and evening watching basketball. It's hard when you can't stay home alone while your wife and daughters referee or coach. The last game saw our daughters both playing, so that was more exciting.

When he got home, it was tea time, then he fell asleep watching James Bond. Guess it's just about time to stir him and get him to bed.

What is this GBM IV that he has? It's a highly malignant tumour which only occurs in the brain. It is impossible to remove every cell of it during surgery, and the stray cells multiply remarkably rapidly. The statistical average life expectancy is months rather than years, so we have been very lucky to have Laurie spared to us for the 18 months so far.

Friday, April 27, 2001 at 11:30PM

Another day of pottering, which again has left Laurie exhausted. He has been pushing himself to the limit, and finds it difficult to admit that he can't work like he used to.

After his morning in the back yard, the rain drove him inside and he found a movie on TV then fiddled on the computer.

Thursday, April 26, 2001 at 10:05PM

A long day for Laurie - he has pottered outside all day, and is now very tired. Turning around to look at other things upsets his balance and he gets "wobbly". By the end of the day he is really tired, and has difficulty staying awake.

We took the girls to basketball this evening, and both enjoyed the outing. Most of the parents come, and have a good chat while the girls run around the court and get hot.

On the way home, stopped to get petrol and ran into a friend so had another chat there too.

Thursday, April 26, 2001 at 10:05PM

A long day for Laurie - he has pottered outside all day, and is now very tired. Turning around to look at other things upsets his balance and he gets "wobbly". By the end of the day he is really tired, and has difficulty staying awake.

We took the girls to basketball this evening, and both enjoyed the outing. Most of the parents come, and have a good chat while the girls run around the court and get hot.

On the way home, stopped to get petrol and ran into a friend so had another chat there too.

Wednesday, April 25, 2001 at 7:20PM

It was ANZAC Day today, an important day in our calendar. Laurie spent most of it outside in the garden, so is quite tired tonight.

I was thinking about Lauries diagnosis today, and how lucky we were that the GP was on the ball. Many other sufferers seem to have had much more trouble finding out what was wrong.

For Laurie, he thought he had had a stroke, with lack of coordination on the left side. He couldn't find his left hand or foot unless he was looking at them - a bit difficult to drive, change gear, apply the brakes etc. He also found that when he walked past newly laid tiles, if they were on his left side he walked on them (not very helpful as he then had to relay them!) He had been doing some plastering at home too, and found that he could not position the corner tape. That was the only time I have seen him totally lose it, so we knew something was wrong.

Tuesday, April 24, 2001 at 11:15PM

Another wet day, so nothing done outside. We did the week's shopping, and started back on the runaround for the girls' sport.

Laurie has given up on driving the car again, and just gets frustrated when his chauffeur is not ready on time! Then starts getting ready himself when I go out to the car. It takes ages to put on his shoes, find his wallet and anything else he wants to take. If patience is a virtue, Laurie is teaching me to be very virtuous!

Monday, April 23, 2001 at 5:45PM

Another wet day. Laurie's nephew, Craig called in around lunchtime to visit.

We spent the rest of the afternoon checking out bits for the computers. Laurie hopes to network them so that two students can work at once, or one person can access the internet or play games without disrupting the studies of another.

Sunday, April 22, 2001 at 11:10PM

It was a wet day, so outside was not an option. A trip to the shops for printer ink, and medications. Then Laurie spent the afternoon watching the motor bike races on TV until the weather caused them to be abandoned. Then he joined the rest of us watching the basketball.

Unfortunately he couldn't keep awake this evening, so will probably be up at all hours in the morning.

Saturday, April 21, 2001 at 5:00PM

Laurie had a good day, with no after effects from the chemo. A friend from way back came over for lunch and a good chat, then a neighbour came in to see how things were going. It is these visits which help to pass the time, and really cheer him up.

Friday, April 20, 2001 at 9:15PM

Laurie went for his first try of intra-venous chemo today. Took him quite qwhile to find the day oncology ward - I had to drop him at the front of the hospital and park at the back. The day ward was right under the oncology ward he was in twice last year, but of course I did all the visiting and knew the way - he didn't.

Once we got there, there was quite a wait before the clinical nurse, Nan, talked to us about many aspects of chemo and dealing with life with cancer. She was such a nice person, and friendly and helpful.

Then it was off to the ward. Laurie was esconced in a really comfortable recliner chair, the chemo started, and there he stayed for over 3 hours. After the chemo finished, we walked back the way he should have come in, got a drink, then walked back around the outside of the hospital to the car.

When we got home, another cuppa, then cooking and other chores for me, and computer fun for Laurie.

Thursday, April 19, 2001 at 5:00PM

It's been a hard day today. Laurie starts the new chemo tomorrow, and Seems worried. The result has been tension and we have been short with each other.

We went out to get printer ink, and a few pantry requisites, and later to the library and to drop Janet to work and Kathryn to uni. Kathryn has an assignment due in on Monday, and has, of course, left it to the last moment.

Laurie has gone visiting, a good idea, as it gives us both a short break.

Wednesday, April 18, 2001 at 8:05PM

After a better night's sleep, Laurie had more energy today. He managed to avoid falling asleep while watching TV last night, So was tired when he went to bed. That helped. So did taking the Dexamethasone at breakfast and lunch instead of breakfast and tea.

Laurie helped around the house and went out and measured up for the sleepers in the back yard. He seems to think we don't need as many as he first thought, so the job won't cost as much.

Tuesday, April 17, 2001 at 5:55PM

A better day today. We went to look at possible materials to extend the height of our fence. The aim is to grow some creepers to give us privacy, as the neighbour's verandah is the same height as our fence, and we need a base of sleepers to retain the soil beneath the fence.

After seeing what we needed, we had lunch at McDonalds, then went to look for some winter clothes while the sales are on, and found some!

The break from phsical work was good for Laurie, and will allow the blisters he has developed to heal a bit.

Monday, April 16, 2001 at 3:05PM)

Laurie getting frustrated by the things he can't do, finding that tools do not work the way they should.

The Dexamethasone seems to be affecting his sleeping patterns, and he has spent one night so far mostly in the lounge room watching TV.

We had friends for tea last night, where we provided half the meal each. Nine of us sat down at the table to vegetable soup, followed by roast pork then a choice of apple slice or chocolate pudding. It was lovely to forget about things for awhile and just enjoy good company.

Friday, April 13, 2001 at 10:43 PM (CDT)

Laurie's journey began in October 1999, when he began noticing that his coordination on his left side was not as good as it should be. His work as a floor and wall tiler suffered as he walked over new-laid tiles if they were on his left side, and couldn't use tools properly with his left hand (and he is left handed.) He decided it was time to see the doctor when he couldn't find the brake pedal and collected the front fence. He thought he had had a mild stroke, but the GP did a few neurological tests and sent him for a CTscan. The results showed a tumour in the occipital lobe, and that afternoon he was in the Austin Hospital neurosurgery ward. A series of scans and tests followed, PET scans, MRI scan and lots of blood tests. He was sent home for the weekend, and readmitted for surgery on the 25th October. Hours later he was in recovery, and the next day in the general ward. Recovery from surgery was rapid, and he was soon home to allow settling before radiation began in December.
Fortunately radiation treatment could be done locally, just a few minutes drive away. During radiation, he was very tired, and became much less coordinated. Dexamethasone doses were increased and extra MRI was done earlier than usual. The MRI showed increased activity, and it was then off ot see neuro-oncologist at the Austin. The day of Laurie's appointment he had his first seizure, a scary event for us both, and was taken by ambulance to the Austin. Neuro oncologist eventually caught up with us there, and discussed options. It was decided to go with Temodal, a form of chemo taken as capsules, at home. The first cycle started in hospital, and continued at home, with no adverse effects.
At the next check up, Laurie complained of a sore leg, swollen and hard. He was sent immediatly for an ultra-sound, and found himself back in hospital with a DVT and injections of blood thinning medication which continued when he got home.
That brought palliative care nurses into our lives, and a great team they were. It also brought support rails in the bathroom, and a shower stool ( or about 5 of them so we could decide on the most suitable one!) Eventually, the INR levels were satisfactory and the injections could cease and Warfarin was taken daily to control his blood clotting.
In March, another major seizure saw him ambulanced to Box Hill hospital for a week. They kept in contact with Dr Cher at the Austin, but were not as familiar with treating GBMs as the staff at the Austin. Laurie celebrated his 55th birthday in hospital, and came home when he could walk a little. This time a walking frame and wheel chair were added to the aids, but he gradually dispensed with them, and had little trouble from then until the last couple of weeks.
Many rounds of Temodal later, the tumour was shrinking and swelling had lessened. Laurie was able to walk long distances and participate in many activities other than driving, and that was the one he missed most of all.
By the start of April he was becoming aware that his left arm felt "funny" again, and eating was not quite as easy as it had been. The MRI revealed the reason, tumour growth moving into the parietal lobe, and swelling that was extensive. Temodal no longer an option, and rhe regrowth too deep for surgery, so new chemo starts next week - BCNU given intravenously as a day patient in hospital.
ON Thursday, the day after the news, a seizure interrupted his morning, but was controlled by Frisium, a drug put under his tongue. Although the seizure lasted a fair time, it was nowhere near as severe as others he has had, and he was tired but able to walk afterwards.
Today (actually Saturday, April 14, 2001 Australian time) he is pottering around outside in his overalls. That is how he is happiest.

Friday, April 13, 2001 at 10:35 PM (CDT)

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