End of Chemo

This morning is the morning after the last round of the six month cycle of chemo. My partner is very tired but looking forward to a long time without it. We will just have to hope that this is the beginning of something good, a view to a tranquil horizon perhaps! But its not all balls and skittles...
Getting ready for Xmas, an increased workload with an upgrade and one of my work team gone on leave, my partners birthday coming up means getting up earlier and doing as much as you can in the time you have. But I am beginning to find that this doesn't necessarily work! I am looking to a glass of cardboardonay in a calm void somewhere near Roaring Beach maybe!
Still there is not much of 2010 left. I will be very glad to thrust this year into the bin and listen to the garbage truck do its thing, take it on it's merry way to the relativity dump where it will not be recycled and end up in the exact centre of a black hole!
On another note, a semi trailer of thanks to all of you have helped us over the past year. Your friendship, correspondance and giving has helped masses. It makes you very much realise that it is the things we do for each other that clear the grime off the windows of an alpine hut and give you a fantastic view of the 2 feet of powder snow that fell during the night!
Merry Xmas and Happy New Year.

Its Been a While....

It has been quite a while since I have blogged. Hopefully this is a good thing! Touch large chunks of swamp gum. It seems like it but I better take a raincheck on that. Things have been pretty stable for us over the last month or so. Except issues with my sons exams. There does not seem to be much change in the excess fluid my partner is suffering from suffice to say that it fluctuates. I wish I could say that it is reducing but I guess we have to be patient.

As I write this my partner half way through the 5th round of Chemo. My partner had a Absence Sezuire the other night but this is apparently common with people recovering from brain surgery - according to our onc. It only lasted under a minute and she was able to swallow tablet of valium which had a good effect for that night. One more round left, then a scan and its what to do after that. Physically my partner has been getting stronger and going for longer walks. We may have overdone it the weekend before last though. Things fluctuate so much and there is little to discern definite improvement. All there is is to remain positive. People who spend time with her need to remember this. It keeps the black dog well away from us. Except for Sandy

Today my aunt is due do arrive from driving all the way from townsville as she could not fly due to her cancer and current condition. What an amazing feat. All that way. She is down for her daughters wedding which is at the weekend. I am hoping that my partner can attend the ceremony as she would like. She can't cope with the idea of going to the reception. Coping with groups of people is very exhausting for her.

My partner has taken the dog to the Dog Groomers. We just have not got around to it and she has turned into a lump of felt. Its great to see her getting out and organising things like this again!

A Good Weekend in the Snow

We have had a good weekend and are ready to start the chemo. My partners sister came for the weekend so I took the chance to take some time out down to roaring beach. It must be about 4-5 months since I have been. On the way down I went for a walk up to the lookout from firetower road. At 427 metres snow had settled! It was wild but beautiful at the same time. I caught up with most of our friends down there and came back to a happy house for lunch round 2:15 pm with all the shopping done for the week.

Daylight Savors

My partner has had a few good weeks which is great. She has improved a lot and the increased amount of Dex Meth has been enough to give her a better quality of life without being zombied out. We don't know how long this can go on but one of her doctors says that they can usually sustain these kinds of levels for a month or so without it being detrimental.

We have had a good weekend with some great blue skies meaning that I have been doing some much required chores - painting the house etc. We are getting someone in to paint the roof this week which is a long awaited job. Something that I put off back in April.

The vegie garden has started to produce and we have had the first spanokopita from the garden with snow peas on the way and a crop of broccoli.

The doctor who usually does my partners aspiration is moving on. Hopefully they will have someone in to learn how to perform the procedure to take his place this week.

My partners sister comes to visit this weekend prior to the start of the 4th Chemo week. Time is flying.

Our son is slowly recovering from the loss of his friend. Him and his peers hang around a lot together. I know its what they need to do but exams are coming up and they all need to get down and study.

We have a few voluntary carers coming in a few times a week which takes the pressure off having to find people to be with my partner.

Things seem to be going more positive at the moment! Yay!

Freaky Friday, Stalemate Saturday, Sunday Again.

My partner is halfway through the 6 months of chemo but the excess fluid will not piss off! She woke up and did some exercises to try to get some post chemo bowels going again and was so tired that she had a seziure. I called the ambos quick sticks and we got her some medication. At emergency she recovered more quickly than 2 3/4 months ago thanks to the quicker response. I was glad that this had not occurred a day later on the same night of the grand final. Being stuck in emergency at such a time would be very unlucky indeed. Fortunately it was quite that morning. Still it took from 8:00 am to 6:00 pm for us to get to the oncology ward. I think it is the atmosphere of emergency that gets you the most. Its all hype. You don't seem to see many older staff there. Is it the agility of mind, the naivity or learning the ropes that keeps them there!? All I know is that they do a fantastic job for all manner of clientelle, that is for sure.

We only just got to see my partners oncologist as we just got to the ward at 5:55 or so. I was watching the time and spurred on by my partner kept on harassing the nurse that was in charge to go to the ward. We were admitted to the oncology ward in mid afternoon but it took the best part of 3 hours for the communication between the hand and mouth to work. Emergency was getting busier and busier and humming up for a torrid Friday Nort. Patients were being found other beds outside of emergency hither and thither.

My partner was completely exhausted by not only the sezuire but all that was going on as well. Needless to say she had a good nights sleep.

I got home but did not feel like hitting the hay at a reasonable time. I think it must be the build up of adrenalin. I used to find it hard going to bed after playing sax in bands in pubs. It took a while for the adrenalin to wear off. This seemed like the same.

On Saturday we watched the Grand Final. She was recovering well. The dex meth went up and she had an aspiration in the afternoon. Unlike the weekly aspirations she has had, this was much more formal with gowns and so forth. They took of 15ml of fluid and she felt much better with her hand and speech improving almost immeadiately afterwards. I called a few of her mates to keep them up-to-date, got her some fresh clothes. I went home and the same thing happened in the night. Promised going to bed early and didn't!

Today a good bevvy of friends visited. This lifted her spirits. Her oncologist is waiting to query the radiologists to find out the status of the cancer. She could not get to see the results on Friday. It looks as if my partner will be in until at least tomorrow.

Sometimes she wants to chuck it all in and stop taking the tablets. Today, talking to the doctors she said she wanted to. I keep convincing her that she should give things a bit more time. If we can get her to a stage of managing the fluid and it eventually subsiding her quality of life may improve that she may get to feel more positive about her situation. If she can build up a tolerance to the dex meth we may be in a better position.

I get worried about her being at home and another sezuire occurring with no one around and her not being able to press the button to call the red cross.

Thats enough for now.

Chemo Meemo

Things are getting fairly stable around these parts again. Touch wood! My son is back to school today after being a bit wary of going back after what has happened. His friend who was driving and has the accident can't yet cope with the idea of going back to school, poor lad.

My partner is a bit better about chemo and seems to be managing it better than the last time. We had a great long chat to another oncologist today which brought out a few realisations. One of them was that my partner has been on a treatment programme since the time that her tumour was removed. She had not realised that this was the case and thought that the programme she was on now was related to the operation to put in the shunt. She did not realise that all had been organised from ground zero.

It is getting warmer here and spring is starting to happen. My partner does things around the house, goes for walks and has helped with meals here and there. She gets hung up about not being able to cook. I commented to her tonight, "Geez some real blokes nevers learneds tooz cooks so don't chuz worry abouts cookins yerselveses luvs!"

She gets about with friends and family during the day and is slowly getting used to the scope of what she is now capable of. Things that she once did and once had the capability of but now can't or no longer are needed seem to be fading into the past slowly. Maybe the ache of having lost those things from her life will fade too.

Improvements during Sad Times

My partner has been doing really well this week. She has been much more stable and her spirits have been much higher and she has been able to do a few more things and feel more competent. She still needs more Dex towards the end of weeks between aspirations. So good improvements there.

But a very sad thing has happened to my son last week. I can't believe the fate that we are having to endure at the moment. It has simply been unreal.

My son went down to stay at our land at Roaring Beach last week with a group of friends for a holiday surfing trip with happy times around the campsite. My partner and I had gone to stay with friends together for the first time in five months. We had a great afternoon with beautiful weather.

Around 5-6pm I got a call from a friend that a girl had died in a car accident on Roaring Beach Road. She was one of the friends that had been camping with my son. Since this happened my son and the young friends that went camping together have been staying with each other at each others places and keeping company since last Tuesday. The funeral was today. It has been a shock to us all and our hearts go out to her family.

The Dex Meth Blues

Over the past week we have put up the levels of Dex Meth, the drug that reduces fluid hoping that this will ease some symptoms. While it has done this with regards to the physical side of having too much pressure - reduced function of her right side and ability to speak, one of the side effects is that it accentuates emotions and this has caused my partner to have hi levels of anxiety and reciprocally me and our son as well!

Now we are reducing it I hope that we can get back to a level where the benefits outweigh the side effects and the side effects disappear and she can cope a bit more. From this wierd angle I feel like the evil Dr Strangelove. She is also sleeping a lot and needing to eat more often. I am hoping these things will pass and she can have some decent time between the chemo weeks. Something it seems that she has not been able to grasp for very long between the last two sessions.

Next week's a week off work for me. I am looking forward to that with 2000 percent of positivity that it will be a good week!

Activities for Visits

Here are some suggestions for visiting provided by my partners speech therapist

Sometimes talking can be very tiring. You might find it useful to do activities which do not rely heavily on talking when people come to visit.

Some ideas might be:

• Going for a walk

• Cooking together

• Spending time in the garden

• Listening to music

• Going for a drive somewhere

Communication Activities

When having conversations it might be useful to base them around some visual cues to take the pressure off the words, some examples might be:

• Looking through some photos together

• Watching small amounts of TV and pausing for breaks

• Looking through recipes and discussing them

• Reading aloud newspaper articles etc that would be of interest to Carol

• Bringing along items related to what you have been doing eg. photos of a recent trip

Good News

Hi Ho for the weekend and an RDO on Monday! A nice long break at last one would think. Not bloody likely. Last Saturday my partner again seemed like she was going down the slippery slide after reducing the Dex Meth.

On Sunday her arm was paralysed and she was having difficulty walking. It was very depressing. We upped the Dex Meth and she managed to gain some of her abilities but it was only window dressing. I was in contact with the oncologist on-call at the hospital and they agreed with upping doses.

On Monday we made inroads to get her into hospital for an aspiration of her Ommaya Shunt. It took all day. We sailed easily through the CAT scan. We thought seeing as they had gone through the procedure previously it would be all down wind this time. It was all hospital mellodramas and a 20 minute wait turned into an hour and a half of waiting with 5 phones calls to get the appropriate people. We were left totally stressed out by the end of it all and very disheartened. We felt very much at the end of it all and that the cards were getting higher and higher and being stacked against us.

On Tuesday we felt empty and weren't holding up much hope. It was much like Tony Abbott had got into power with a landslide majority. There did not seem to be much change to my partners abilities and I rang that I would be late to work because she couldn't make her own breakfast. I think this would be one of the lowest points of my existance. That evening we talked about end of life stuff
with my son and a close friend that has been a rock for us all.

On Wednesday I slept in for an hour and rose late at 6:30 am. A ray of sun was filling the house but I was oblivious to it. We lay in bed staring at the ceiling and talked about how it should end. My son stayed home because he was sick with a cold again. It was all lyrics from a Leonard Cohen song.
We had a meeting at home with the Palliative Care team. I got my partner some breakfast again and got ready for the meeting.
After three hours talk things had felt like they had suddenly come full circle. We had some support to get some things happening.

In the afternoon we had some good news. The Cat Scan that had been taken on Monday showed that the node of cancer left after the operation had not increased in size since the previous CAT scan done on the 13th of July.

1st Week Post Chemo

Last Sunday we went to see the movie South Solitary together. We both enjoyed it. It was reminiscent of some areas of Tassie.
My partner has been slowly recovering from her operation. Earlier in the week she was starting to suffer from increased difficulty with her speech and I was all ready to go and battle the neuro-surgical unit to get something done. Wehad not had word of how to manage the aspiration of any fluid that may have built up since then and it seemed like that was happening and this was becoming more and more stressful. However on Tuesday things were put right during a Haematology Clinic Appointment where the neuros took off 70 mls of fluid. It was a lot and they send some off to pathology which we have yet to get the results from.
She has had to go back on the Dex Meth. Each time she has gone off it something crazy happens so I am hoping staying on a small dose for longer may do the trick.
She seemed a lot more stable last night. Her writing and reading does not seem to have improved to the level it was before the operation and she seems to be having a harder time making a phone calls. It is getting more difficult to keep her spirits up and even though you don't want to it gets harder to maintain positivity in conversation. A good discovery has been that food and sweet things seem to help her speech and thinking and get rid of the depression she may sunk into at times duringthe day. I am looking forward to a week off from the fourth of September.
On Wednesday I shaved her hair on the side of her head that where it is still growing. She was happier, in a way, that her hair was fixed up and remarked that we should have done this before.
Things seemed a bit better today - Friday - she seemed a bit settled this evening. Needs a lot more sleep though. She has been playing Solitaire to keep occupied. Friends come around to see how she is going each day which is good.
Sometimes it feels like the working weeks are cold oceans between Macquarie Island weekends. Thanks to all who come and spend time with her.

Chemo Weeks are hard so here are the dates so that you know. She won't be up to doing much those weeks:
23/08/10 - 28/08/10
20/09/10 - 24/09/10
18/10/10 - 22/10/10
15/11/10 - 19/11/10
1312/10 - 17/12/10

Recovering

My partner is recovering well from having a shunt put in. It has, over the last week affected her emotionally but things are improving. Today I went to collect the Temazolomide to start her six months of one week chemo then three weeks off. Lets hope that this will knock off the small node of cells that has grown slightly since the initial operation to remove the tumour. The Oncologist is positive this will have a good effect. I have been telling my partner to always look on the bright side of life - echoes of Monty Python. We haven't got a Volvo so at least we won't dye of salmon moose! All things positive need to be maintained. We go from one place of hope to the next. My partner had a great session with her appointed psychologist that she knew from years ago and rang me at work sounding very clear and happy. It sure lifts your spirits to hear her in a happy place.
Tonight some friends are bringing us supper and will be with us at our place. Thanks for friends!

Birthday Blues

My partner unfortunately had a seziure last night and had to go into hospital. This was due to a build up of fluid that was likely to have been held in check by dexa methazone that she was being weaned off over the last few weeks. She has been put back on this drug which has improved her situation and she is recovering well. They say this will take up to 48 hours for her to fully recover. There are a few options that are available to alleviate this build-up of fluid which we will be learn more about tomorrow and have to make decisions about. It would be preferrable if you wish to send messages, do so by this blog as she can't cope with situations where a high amount of communication is happening and texting takes up a lot of time and headspace.

It was my sons birthday today and after all was said and done we had a nice dinner at the hospital with pizza, butter chicken and cake.

Radio & Chem Is Over

My Partner has got to the end of chemo and radio therapy very well. Her progress has shone out and even surprised her oncology doctors. She has had a few complications along the way, a sore ear and skin irritations but has recovered from these during her treatment. She has had a bit of nausea but this has been kept under control with medication. I was concerned the week before last as I had the flu and did not want to give it to her. Fortunately due to the strength of her system she did not get it.

We have had a great group of caring friends that I have rostered over the past six weeks who have taken her to and from the Clinic each day and google calendar and apps have been worth their weight in gold in managing and keeping a handle on this.

Her oncology doctors will be reviewing her progress in a couple of weeks. The amount of Dex-methazone – the steroid that reduces swelling, is being slowly reduced now that radiotherapy is over.

An MRI scan is scheduled a month from yesterday to see how things are going, then further meetings, so there are many people out there keeping their fingers crossed and touching wood for a great outcome.

Carol feels she is reaching a position from which she is able to feel stronger mentally and more able to manage and organise to see people at home.

She still finds groups of people challenging but I am hoping that this will pass with time and we can somehow organise a get together with colleagues.

Sometimes I suggest a Café and we go there for something for a little while but it can be a bit daunting.

Half Way There

Last week and this week have been rather warm down here. We didn't make any plans for the weekend and rested from the busy week. It was "hair loss week" last week. It was unusual how it occurred. I thought that it may take a while to go but it was a here one day gone the next affair. My partner did not seem to concerned about losing it.

We are past the halfway mark for radio therapy, if that is something to celebrate. We would both like to get down to the block but the nights are too cold at this stage.

It is really amazing how going for a walks knocks out the sadness that we share about the future. Of course the intensity of this lies with my partner.

On Friday last week I went to see the Palliative care staff about how the future will eventually be. It wasn't something I'd dwell on but needed to find out how things would eventuate and know how things will travel.

My partner says her situation is total crap. She has certainly been dealt a shit hand. She is so right. When she is tired she gets depressed. This happens when there is too much interaction between too many people going on. So being with one or two other people at once is best.

Second Weeks Up

The second week has gone by and we have got medications running a bit more efficiently. We are a third of the way through the first course. Which is seeing the best of that side of things. I have used google calendar to keep in touch with companions and carers - thanks so much to them. Google calendar is proving to be a great tool. I recommend it to anyone who needs to manage things like this.

When she is tired the dysphasia is worse. She was saying that when she tries to conceptualise on deep level things go blank. It's the first time she has seemed to try to analyse it. When she tries to imagine or see things that aren't related to the present surroundings it becomes harder to call things up. She says reading seems even more distant

She has been more tired and has been sleeping quite a bit. The Chemo and Radio is obviously setting in. On Saturday we went for a great walk along Cornelian bay in the warm morning sunlight. We waved to some friends who had sailed up from Nubeena and caught up with one of them later in the day.

The weeks are vast oceans between distant islands of weekends.

A book of friends and family are being put together so that it is easy for my partner to describe people that are being talked about in conversation. If you can send images of yourselves to me this would help.

Good Weekend But Little Movement

We had a good weekend. Specially Sat'dy with a walk almost to Cornelian Bay and a drive down to Sandfly to visit Mr M who wasn't there on Sunday.

Unfortunately things started to clog up down below and was contemplating another hospital visit on Monday night. The log jam was breached on Tuesday morning with a smile coming to my partners face. She is getting very tired during the day now with the R & C but managing and seemed well this morning. She has a speech therapy session this afternoon and we have had lots of friends and family send photos of themselves for her photo journal to help with her dysphasia

Had a great massage on Tuesday night - Thanks Little Buddhist! Days are busy and start at 5:30 and go to 10:30. Google calendars and docs are proving to be a a good way to keep in contact with carers. Thanks to them all.

Oncology Week One

First week of oncology treatment is completed. Had meeting with oncologist and everything is going pretty much as expected. My partner had a bit of fluid build up on the left side of her face but this has dissapated with some massage with sorbolene. She also had issues with symmetrical movements which aren't as symmetrical as they used to be last week. This is attributed to the amount of fluid built up in the brain which the Dex Meth looks after. There is the option to up the dose to counter this. We are at the typical dose of 4 mg per day at the moment.
We were going to go to our block of land at the weekend but thought the better of it. Just relax and take it easy at home.
Things seem to be more under control compared to the beginning of the week.

Day 1 Radio & Chemo Treatment

Had first day of Radio and Chemo yesterday. The 10 minute session predictably turned into and hour and a half while we searched for the pharmacology unit at the hospital. A few hours after taking the Temodal nausea and full on vomiting set in. Got home from work at six and immeadiately had to call around the hospital to get a doctor to tell casualty that we were coming in. Casualty was chockas. Had to drop my partner and go and park the car. They were pretty quick in getting the tablets to her and a rehydration icy pole. In 20 minutes we were right to go home. A friend who had cooked dinner for us had not been able to collect our son from basketball. I set off to find him bouncing in the dark at the local high school gym. We had tea and went to bed.
She is good this morning. Up early while I write this and making breakfast for herself.

Green tea facts from a 5th Year Cancer Survivor

I became interested in green tea after reading "Foods thet Fight Cancer" written by 2 Canadian cancer researchers, Richard Beliveau and Denis Gingras. According to them it is the catechins in tea which are responsible for the effect. The tea with the highest concentration of catechins is Japanese Sencha which can have up to 5 times the amount of other green teas. I buy mine online from a shop in Brisbane but I think there is a good tea shop in Hobart you could it at. The rolls royce of Sencha teas is Senca Uchiyama or Gyokuro.

The researchers recommend brewing for 8-10 minutes. Anything under 5 minutes results in only 20% of the extraction of catechins. A short brew of an inferior tea can result in 60% less catechins.

Op Recovery and Oncology Planning

The saturday after getting the results we got the ok to go home from hospital. The discharge was a bit premature and we waited for services to catch up with us. We went and saw my partners GP who helped to assist this happening. My partner was readmitted to the hospital so that she could get to see speech pathology, oncologists and so forth. Her sister who is a nurse was down that week to help care for her. My partner was being weaned off Dexamethasone. The amounts weren't enough, she needed ongoing supplies to reduce fluid around where the tumour had been. After a lot of meetings with hospital staff, not eating she returned home. My sister in law and my partner had been home for 10 minutes when my partner had a minor sezuire. My sister in law called the ambulance and my partner was back to hospital.

Post OP

The operation was successful. There was good delineation between the tumour and the surrounding brain tissue. We drew breaths of relief.

But the worst thing about Post OP is waiting for results to come back from Pathology, not the operation itself. It was like waiting for days for exam results that you know are going to be crap. We kept optimistic and positive all the way through. Living for the moment.

My son, mother, partner and I all waited on the last day for the doctors to provide results. It was a Friday and the doctors had meetings all day. They wanted to wait until I was there so that they could tell us the bad news. I just missed them by 5 minutes. We started waiting in the morning at the hospital at around 10. It wasn't until 4 that we got the results that the tumour was a malignant glioblastome multiforme grade IV.

D-Day - Diagnosis Day

We waited in casualty for around 3 hours until she was admitted. An intern checked her up and saw that something neurological was amiss. She had a CT scan and the tumour was revealed.

Final Days before Diagnosis

I had phone calls with her friend in Brisbane and her sister in Sydney. They both thought she may have had a mild stroke and that I should get her to a doctor. I had her booked in to see her GP the following Tuesday. Having a break and seeing her on Saturday night on her return really got me going. Following her sister and friends assumptions I did a bit of searching on the net and found some information about adexia which fitted with the inability she had to read. More and more symptoms seemed to point to a minor stroke the further I searched. This was early Sunday morning. It was these factors that made me decide we were going to sit in casualty until we finally got an idea of what the hell was going on.

Easter Holiday

My partner had booked to go for a holiday up the east coast of Australia. We weren't sure that in her condition she should go. In the end we decided she should. The break might do her good. She headed off with a friend up to a yoga retreat north of Sydney for a few days, then onto Brisbane to see another and back down to Sydney to stay with her sister who is a nurse.

First sezuire

On Monday 2 weeks before easter, early in the morning my wife had a mild sezuire. We did not know what it was and of course put it down to the variety of possible diagnosis that she had had. I stayed home from work to be with her and she had the rest of the week off. That friday we went to see her GP who was equally unsure about what could be going on. She was also having difficulty reading.

Lead up to diagnosis - Things not quite right

It took 4 to 5 months to finally understand what my partner had and it the typical story associated with brain tumours which is....surprise! You've got a brain tumour!

Late last year my partner was going through menopause - she was the right age for it, her periods were becoming less predictable etc. She went on a course of HRT to help. The HRT didn't seem to work that well. She was also taking a lot of alternative medicine and nothing much was happening.

Calming things like Yoga Nidra were helping.

In January she had suspected case of Blastocystis which was treated with a strong antibiotic. We were never sure that this had been completely cleared up as she continued to have bowel and gut problems. Later I read that there is a link between brain tumours and your gut.

She had also lost 10 kgs which we weren't sure what to attribute to.

These things were all creating a good deal of anxiety as a cause for them had either not been found or the treatments were having little effect. She was taking more time off work in order to cope.