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.