the beat goes on

Happy New Year to you all - may 2020 bring you happiness and love.

The last time I  blogged my nails were shorter and a mess,  my hair was boofy and wild and I weighed 10 kgs more than I do now.
The terminally curious among you might ask what's going on then? and of course I would/will tell you, cos I'm nice like that.

The second CT scan was looming the last I wrote and this is where it all came a bit unstuck.
I had been recovering nicely and my Medical/Oncology team were pleased with my progress - as was I.
Alas it was not to continue and the results of the second CT scan saw me scheduled for a PET scan, it would seem Rasputin might not be dead!!
The PET scan confirmed the worst - Rasputin lives!! Bring on the chemo - yuk. Immunotherapy is an option we have always discussed but my particular cancer is not on the PBS so it is cost prohibitive at $4,000 per month but always there if the chemo doesn't work.

So, there I am, in the oncology unit, cannula in place and almost all of the first bag of saline as well as the anti-nausea drugs have been administered when an associate of Dr Tim whisks me of to the office for a bit of a chat.

I am being offered the opportunity to participate in a Phase One Clinical Trial for a brand new Immunotherapy Drug that has been developed specifically for my kind of tumour.
The drug has never been used on humans but the lab work has been very successful! So I figure it is my time to be the guinea pig and thank whatever animals gave their little lives so I could have a shot at living. A no brainer really. I discussed with the family and they were all singing from the same hymn sheet. let's do this!!!

Essentially I will be given a drug that will boost my bodies immune system and invite it to attack the cancer and pretty much anything else that is not working to make it all better.
The best thing here is that whereas chemotherapy and radiation is indiscriminate and kills everything - the immune system just targets what wrong with the body.
Not all people will respond to the treatment but...some people will be totally cured!!
Those that respond get to win straight up and good luck to them whoever they may be, those that don't may still have avenues to pursue (I still have some chemo options to delve into). however the chips fall anyone who has participated in the trial has given valuable information to the company for future research and I kind of like that.

We do need to keep in mind here that I am in a lot of pain, can barely walk and spend most of my days sleeping and crying.

Dec 16 was 'D' day and the Boy Child decided he would be with me!
It was a good few days having him with me. He cooked and cleaned and even left re heat meals for me in the freezer.
On the day of treatment I did the driving, but it was a long day; a lot of blood tests at certain times, meant it was over 6 hours before we got out of there. The Boy Child was an absolute Brick, he found a wheelchair and 'drove' me about the place in nasty hot weather. There was a crap load more testing to be done and so we had to return the next day and again several days after that to get blood taken for the testing regime.

Many thanks to the good friend who managed to look after me until HR and co got here!

For the second lot of treatment I was joined by HR and The Beloved Baby Sister (and there's a whole other story in that!!!!!).  It was interesting to get another perspective. Again the treatment was administered and enough blood was removed from my body to fill a small lake!
HR is now in permanent residence and I firmly believe he has a lot of responsibility for how much better I am these days than when I firsts started treatment. I am still fatigued and every now and then I have a crying fit - but I can almost walk without my sticks now and my weight is now stable to rising.
My pain is relatively under control and I may be able to return to work by beginning of March - no promises.
My third treatment looms - but before that I have to have a CT scan. This scan will be compared to the first scan that was done during pre trial screening. This comparison will let us know what is happening with my tumour.

This all happens in 5 days. 5 days of waiting, wondering and worrying.

Throughout the last three months I have dealt with the pain, moving and wondering if I have done the correct thing......

Anyway we will all know in 5 days won't we?

Recovery

So, we've completed treatment.
No more chemo, no more radiation.
Except that Dr Doom says last week - did Tim talk to you about ongoing chemo treatment?
WHAT THE F*CK???????

at this stage of the game there is no way in hell I would have more chemo!

Still struggling with nausea, cramps and fall out from the radiation 'burns'.
Maybe once all this goes away I can make a better decision lol.

It's not a lot of fun this recovery.  I think maybe they could just knock me out for a week until everything heals so it wouldn't hurt.

One of the biggest issues is the emotional roller coaster leading up to getting the results after recovery.
What if the treatment hasn't worked? What then? What if it has but it is remission and it could come back any time?
How do you plan for a future you might not have? and how do you plan for a future you may have around these extra bloody chemo treatments?

So now we are 7 weeks into recovery, and I have been for a scan and seen my specialists.
The news is on the good side. There will be a need for another scan and visit to confirm the goodness.

I have learnt so much on this journey and at some stage I hope to share some of my insights.

Thank you for being with on my road.

Just Shoot Me.....

I've been labouring under a really freaking big misapprehension for all of my life.

I thought I was strong - lol

I thought I could deal with anything and everything life could throw at me - now I know better.

I have carried and delivered three kids - and brought the little darlings up - a complete doddle compared to what I have done in the last 5 weeks. There's still one more week to go.

5 Treatments
30 Chemo tablets
9+ days of constant fatigue
9+ days of constant nausea
9+ days of constant cramping
14+ days of very bad 'sun burn'

not to mention the whole toileting thing.

I feel like that flayed creature under the train station bench in the final Harry Potter book.

After a major meltdown last weekend where I swore I wasn't continuing with treatment - it didn't help I was weening myself off opioids - I determined I will finish my treatment - I hope it's all been worth the effort.

I look at the chemo tablets every morning and heave - I know I am poisoning my body to make it better.
I pray to all the presiding deities and the universe that I never have to do this again.


 As long as there is mashed potatoes and gravy I shall survive!!

Be kind, rewind

Last time I blogged I discussed my return to South Australia.
I left that blog with 'let's see what the future holds'.

let me tell you what has transpired and how that future unfolded......

It's been a very interesting time

My job is interesting and the people I work with even more so.
I have had a wonderful 18 months or so of whale watching, balloon riding, flying a plane, wonderful degustations at fabulous restaurants, yacht sailing and fishing from a tinny.
There's been regular fly in fly out to Queensland to see Mother....and a few car trips of course.

The last car trip to see Mother was for her birthday/Easter 2019. We did some stuff for her about the place. You could see life was becoming evermore a struggle for her, oxygen 24/7 and little energy for eating or doing anything - no quality of life. There was a trip to Mother's specialist here and she told the specialist she had had enough and she was tired.The specialist discussed palliative care options.
Mother seemed happy with information she was given and we had a good chat about it on the way back to her place. Shortly after HR and I returned to our respective homes. A few days later Mother rang and asked me to come back up. When I got there we discussed her options further and settled on a plan of action. Ultimately Mother passed comfortably 3 May and was cremated a week later.

On my return home I decided to seek some medical advice re some pain I was experiencing on my groin area. I had been seeing physio, chiro and Bowen therapy about it to n avail. I had spoken to m gp about  a lump in the area but she said there was no lump there and to go away. The lump was  a 10x6x4 cm tumour. A secondary tumour. Three weeks after losing my Mother I was diagnosed with Stage 3 cancer.
I am currently 4 weeks into a 6 week treatment - chemo tablets day and night and radiation therapy 5 days a week.

I know that there are people out there with worse regimes and not so bright outcomes (there is no cure for me just contain and control) but I have to say I am tired of being tired, tired of feeling nauseous every time I think of food and tired of feeling so helpless. At least I am managing to get to work each morning for now.


I have the best people in the world on my team. My oncologists, the ladies who administer my radiation, the reception ladies, my co workers, my family and friends. There are people out there who do not even know me but the positive energy they put in the world that comes my way is amazingly helpful.

Anyway, 10 more treatments and 4-6 weeks recovery and then we shall have tests to see what damage has been done to this cancer.

I shall update in the fullness of time!!!!

All my life's a circle

Kind of weird really - a touch over fifty years ago, the family disembarked the Castel Felice  in beautiful Adelaide, now I have returned to work in the Outer Harbour vicinity.

The time in between has been interesting, growing up, travelling around Australia with Father's job, leaving home and starting work.

When I was a youngster my first job was in Darwin working for Woollies as a checkout chick - then I started a managerial trainee-ship - same company different city but alas I chucked it in for love and followed my then fiancee to Adelaide. In Adelaide I started my career as a barmaid/waitress - a career that spanned 15 years and several husbands.

I enjoyed my time in Adelaide, I was young and attractive and had a lot of fun.

26 years later and I am heading back. Kids have all grown up and it is time for me to have a career.

Oddly enough not everyone is supportive of my move.
It's nothing new, I have received precious little support from family over the years when I decide to do something.

I married my first husband because my mother made the ultimatum 'it's me or it's him' come on Mum - I am 19 and certainly not spending the rest of my life with you - I lived to regret that response; firstly I got divorced 2 years later and secondly of three kids I am the only one who maintains any contact with Mother - ringing twice a week and flying in once a month and when required.

When I separated from my second husband my Mother was less than supportive asking 'who do you think you are to have any more than what you have got' my response? 'I don't know Mum but I am going to go and find out'

Then my mid life crisis decision to go to Uni. My father in law thought I would be better off learning how to use the betting machines at the local pub and when my name was not in the paper for the first round offers they thought I was not good enough to get a place. What they didn't know was that the first round offers are for school leavers and then us mature age student types get offers in the second round...and I did.
Then it was oh well a Bachelor of Arts is the lowest degree it doesn't count for shit.
I completed my degree in the minimum three years with a B grade average while looking after three kids and a husband and renovating a house. I regret not attending my graduation ceremony. My proof reader for all my papers was someone I met AFTER completing my degree- more support from a total stranger than family.
Enough of the bleating, I have made decisions and lived with their consequences.

I am enjoying the change - my job is satisfying, I love the freedom of finally living alone for the first time in my life. I worry about my future though - like a lot of women my age I do not have sufficient superannuation to live on when I retire and will have to draw an age pension but the government of the day has decreed I must be 67 before I can.

Ah well let's see what the future holds shall we?

Off season

Ok I admit it, the Brisbane Lions had another bad season. Yes we won more games than last year BUT we won the wooden spoon!!

Off season is like walking aimlessly through the wilderness until Cricket season starts.

Off season has such delights as the trade period, the Draft,  International Rules , Women's Competition and the pre season schemozzle. The media, bless their collective cotton socks, have a absolute field day trying desperately to turn dross into gold with their stupid left field predictions about what will happen with whom and where. The long suffering faithful fans angst accordingly and take to social media to vent their spleens.

The Lions:

Delisted my sponsored player, Josh Clayton - that's two I've sponsored in the number 19 jumper by the way, maybe I am the kiss of death???

We also delisted a few other good quality young men but we have picked up Luke Hodge and.....Charlie Cameron.

Both of these pickups are controversial; Hodge because he had ostensibly retired for Hawthorn and Cameron because the Crows are a bunch of Chardonnay swilling, Apricot slice consuming, Texas John knitted doll making, Webber Q toting, the opposition supporters are too loud whingeing bunch of misbegotten whelps!!!!

So when the opportunity arises to get up the noses of a Crow supporter or two one seizes it with alacrity!

I had an apricot slice delivered to a rampant Crows supporter to say thank you for Charlie Cameron.....apparently it ended up in the bin, but the point had been made. Of course if I am successful in my attempts to sponsor Charlie there will be many more opportunities to get up the collective noses of Crows supporters everywhere...

Currently the faithful are sat in the corner of the couch, holding their preferred libation, rocking gently whilst watching the calendar.

2018 looks to be a better year (hope springs eternal annually) Hodge will help young Harris Andrews down back and Cameron will add speed and depth to the midfield. I have decided a three game membership is the go as I still live interstate and I have put down Charlie Cameron as the player I want to sponsor!! Of course my second preference was whoever wears the number 19 next year........

Champagne and Footballers

Even though I now live and work in Canberra, I am still a loyal Brisbane Lions Fan, Member, Member of the Women of the Pride and Player Sponsor of Josh Clayton (19).

My Lions Membership is of the Supporter Member variety, I don't attend games being that I live 1200 km away from The Gabba.

Anyhow...one of the benefits of being a player sponsor is the Player Sponsor Function each year. Two are held; one for Victorian members and one for the Queensland members.

It's my one chance a year to catch up with my player and catch up with my footy friends.
The Normal Autistic Chickie generally attends these types of things with me which is always fun.

This year I few into Brisbane the day of the function and after an interesting cab ride - Greek chatty cabbie who had some very interesting ideas re the governing of Australia and its States - I checked into the Wellington Apartment Hotel.
I love staying here. It's clean. comfortable and the restaurant is not too shabby at all. It is also a brisk 10 minute walk to The Gabba, so ideally placed for footy and cricket!!


The Normal Autistic Chickie was stuck in traffic and she still needed to get changed - we were going to be fashionably late.
Being the sensible middle aged type I am I had brought some flat shoes for the walk to The Gabba , the footpath is crap and were were running late. Guess who tripped three times on the way? Guess who has some really pretty bruises on her legs, feet and hands?

I changed into heels at the venue before meeting with the players, I walked home in those heels incident free........

The function is held in one of The Gabba function rooms and canapes and drinks are served. It's always a convivial atmosphere. Catching up with players and friends and the champagne is nice too!

The vibe among the players is very positive - we're not winning games but the club culture has improved and our youngsters are signing on in droves. I believe the Lions can win on any given day - instead of lying down and getting smashed in games they are now fighting out 4 quarters.Each player I spoke with said that Fages ( Chris Fagan-coach) was not as dictatorial as some previous coaches - he has a more nurturing manner. Often it is more about what isn't said by the players but this time it seems there are no undertones to report.
Apparently my boy Josh was a bout ready to be called into the senior team when he did his ankle in the NEAFL. His recovery has coincided with a couple of wins and Fages wanted to keep the team together. We've had some big losses the last two games so maybe young Josh might get a shot at the big dance as Fages tests out the youngsters.
Obligatory picture:

After the function the Normal Autistic Chickie and I wandered back  to the hotel and had delicious Lamb Shanks from room service. Delicious!!! Time spent with the Normal Autistic Girl is always well spent.
Champagne, Footballers and time with the daughter - all around a lovely evening.