Tuesday, 17 February 2015

2 down and into the third and final stretch

Sunday night was dread night for me.
I had run out of my anti nausea medication and was dreading going in for my last week of full on Chemo. 5 more days of injections and drugs and feeling unwell, followed by the last 2 weeks on 1 day a piece.
I had seen my oncologist on Thursday who was impressed with my general health and gave me some stirring words to last out the next 3 weeks. He booked me in for follow up CT and Blood and reminded me that only 20% of people in my position need to have a follow up operation (to remove the two locations of spread). So it is looking good for monitoring instead of surgery and therefore being closer to the whole things being over.
Mentally however I was still dreading the last leg. I was very ill during the 2nd cycle - I actually threw up more than once and while I worked and got around I felt ill a lot of the time and it is taxing to be strong for family, work, kids, life etc. Hell even just speaking to people at the shop is struggle when you think you might throw up at any moment.
I went and checked out the local music store, to source that last part for the guitar build that has taken forever!!! I found them but need to order and find the $70. It was hard just speaking to them and being civil. I don't want to explain why I look like I'm about to throw up to a sales assistant...
Also the work gossip mill is not working... or at least it didn't for one person. He joked about my new hair style, to which I said "it will it will grow back!" His reply "I hope it's not because of chemo...". "Well actually it is..." I felt bad as I could see he was shocked and he apologized straight away. I wasn't offended he truly did not know, I felt sorry because I thought I had got the word out there so that people wouldn't feel bad and could talk to me honestly or ignore it if they couldn't.
I realise that even making it public has some issues, but I still stand by being out there and open about it. It's not something to be ashamed of or even touchy about. There are plenty of people who are touched by Cancer... and like mental illness it should be talked about more and understood more to people can survive this horrid disease.
So back to the start of this final leg.
I posted something about struggling to go back, about the mental strength it takes to go the clinic and take the drugs and my friend Darren called me the strongest person he knows. I don't see myself that way, I just see that I do what has to be done - no matter the pain no matter the costs. I WILL DO IT. It was thinking this and trying to pull a witty reply that I understand that my doing, and keeping on doing is showing strength. So Darren - I turned up on Monday, I took a deep breath and went in head held high, stomach in, shoulders back ready to rock!
Monday wasn't too bad, it was a late slow start but Anji stayed with me and Mumpa took on the kid wrangling for us... which I am sure she enjoyed! I know Kate and Tara love having her here helping us!
But I felt good... I was ill and had my script filled so I could take my pills and sleep...
Today was similar - even quicker than Monday which was good... I went for a walk after my session and felt mostly OK. we have Pizza for dinner tonight and I have managed to write this blog... so while there are still 3 days to this week (and more to come) I am feeling strong once again and happy that I am able to handle this.
What makes it a little tainted is that our friend Graham Swam lost his fight to Leukemia yesterday. I will still be fighting on in your name Graham - you had a bad hand dealt and fought all you could, I am one of the luckier ones. Good night Graham.

Saturday, 24 January 2015

Cycle one down and hair loss

So that's it. The first cycle of three weeks is over, and only another two to go!

I have mixed feelings about the end of the first third. On hand I am down three weeks and heading toward the finish line, next week is a full week (due to public holiday on Monday I only have four days with a slight increase in dose...) and after that I only will have one more full week to go. On the other hand I know it will start to get worse and my bounce back will take longer if at all between the sessions.

After Thursday I was quiet ill, I went to bed with a bucket as I wasn't sure I would not be sick. That was the worst I have felt the whole time. I don't want to feel that way again but I know I will. Knowing you are going to be sick and still going in for treatment is hard thing. You have to be mentally prepared for the situation and the aftermath. Next week will be hard, but I will get through it and I will do it. I just have to summon up the will and energy.

My parents are coming down this weekend to help out at home and for that I am very thankful. With them here I won't have to think about Anji and all the work she shoulders while I am otherwise engaged (i.e. asleep or at least lying down so I am not sick). They will help out with the girls and also some of the normal household stuff like washing up and cooking etc.

All in all it is like a band aid - rip that sucker off and the pain is only fleeting. Have the treatment feel ill for a few weeks and then it is all over. At least that is the plan!

As for the treatment - well if hair loss means that it is working, then it is working well.

This week saw drifts of hair start to fall out and this morning it reached a point where I looked like a mangy dog.

So off it had to go. It was a bit of an endeavour to get it all off. At first I tried the razor and in the ended up with the electric clippers. Anji had to come in and fix me up... 

The new streamlined me...

Good news in Anji likes the new look and to be honest it isn't that bad! Maybe a new style for me? 2015 the year I went bald!

This weekend will see our six year Anniversary and shortly we will mark 18 months in Melbourne. A lot to look back on and a lot to look forward to.

Wednesday, 14 January 2015

2 Week Update

Before starting the treatment I had plans that I would write something each day. That proved impossible.

Not only was I too tired and distracted in the hospital when I got home I either did a few hours remote working or fell asleep or spent time with the kids and wife.

Life seems to get in the way and the being tired and constantly feeling queasy even with the anti-nausea drugs I just couldn't be arsed to write a blog. Maybe I should have Vlogged instead...?

In any case here I am the night before my next instalment of treatment. Tomorrow I get the 1 day a week drug Bleomycin, I am getting 6ml in 500ml saline and it takes 3 hours to pump into my system. This stuff is strong and hopefully doing the right job and stopping the Cancer from growing, in essence I hope killing it dead.

So this week has been a lot different than last. I truly thought I would be able to go back to work for the last three days as normal. Boy was I wrong.

The weekend and indeed Friday was a killer last week, I was so tired and wrecked I mostly just slept. In fact Sunday was a perfect example of what I felt like.

It was a nice sunny day, better and one of the few we could see coming up. So we jumped at the chance and headed out to the park with the girls. Anji did ask if I wanted to just stay home but I thought "no" I wanted to spend the morning with the girls and enjoy being out in the sun and watching them play etc. Indeed it was nice.

I pushed swings and helped Tara navigate some of the obstacles, Kate climbed the rock wall with me standing behind her - it was nice. That lasted about 30 minutes before my head and tummy started to turn on me. I was weak and queasy again and sat in the shade until Anji could gather the girls and went home with promises of lunch and juice. I went to bed and slept until late afternoon.

I really can push myself anymore.

This week was the same.

Monday: Anji drove me to work after dropping Kate at day care and picked me up on her way to getting her in the afternoon. 5 hours at work
Tuesday: I took the train to work and lasted until around 3pm when a colleague drove me home.
Wednesday: Anji drove me to work after dropping Kate off, did some shopping while I had a meeting and collected me around 12.30pm - I did work form home in the afternoon after a rest.
Tomorrow is treatment day and Anji will drop Tara at her day care, me at hospital while she and Kate spends 3 hours at Doncaster Westfield getting some more school supplies and maybe some sushi for lunch.
I think I will work from home on Friday and avoid the travel (which makes me feel terrible) if I can cope.

However, there have been some positives this week.

I have eaten more and worked out that eating really does help my queasiness. In fact Monday I had hot chips from the Fish and Chip shop across from work. I ate them over an hour and the salty simple food just helped me cope so much better. It was a pity when they finally run out.

Tuesday night I cooked! Sausages, mash potato and steamed peas (from the garden) and broccoli. It wasn't much but I felt better about being able to do something and I ate a mid sized portion. Maybe my appetite was coming back.

Tonight I have even been reading through recipe books to find a perfect burger as I want to make us burgers over the weekend. At this stage I am leaning towards Jamie Oliver's Botham Burger, but that might be more then I should or could have... it might end up being a simple plain burger (cheese for the girls, and Vegan for Anji) with me having as much as I can handle... But to me thinking about food like that is a good sign.

Anyone who knows me knows I love to cook and cook inspirationally. I like to invent and use recipes as a guide in the lose sense... something to fall back on but not necessarily follow to the letter.

The other thing I want to note about this week is the work and efforts that Anji has put in and continues to put in. I do as much as I can but mostly that isn't much. I fall asleep easily and I think it was Monday night I slept from 6pm to 6am... Anji has taken up the jobs and tasks with out a beat. I love her and thank for for that.

I know that this is a fight she can't take off me, but by taking the load of what she can she has helped me more that I can say. Thank you Honey!

My beautiful girls how make me smile and be happy just by being there. Daddy will be well again soon!

I will continue to do what I can and be a body when I need to be and such, but I can't promise to always be able to do all I should while this is going on. If there is one thing this last week and half and taught me - I need to listen to my body and just give it what it needs. If that's hot chips, or sleep, water or peace and quiet.

Thank you also to all those who have checked in on me. To Jessica who has written an inspirational true story. Frank for listening, Les and Colin for the links to music. Marco and Tracy for the good vibes. Tash for her magic and wisdom. The Mothers Group for their support to Anji, and all the friends for messages and hopeful comments, offers and assistance. Nery for his real life experience, Elye for falling over and admitting that I was right!

To my work colleagues and Manager who have ferried me back from hospital when I needed it and have been generous to give me the time I need to heal and also the opportunity to get my head out of the sickness and back to work when I needed to.

Finally to our families who have supported us through this whole time and are coming down again soon to lend a hand and offer more support. To Cookie Dogs for the cuddles and snuggles.

I know I have missed people and I am sorry I hope that I managed to thank you in a comment or private message back.

I still have hair!

Friday, 9 January 2015

Day two, three and four... a quick catch-up blog

Day two.

Tuesday went uneventfully in most ways. No sign of side effects and the nurse at the end of the last lot of drugs accidentally took the cannula out. Ops! I still have three days left.

Oh well we laughed about it and I said at least I will be able to have a real shower tomorrow morning!

I went home, thanks to a lift from Nic at work. Work have kindly set up a roster to get me from hospital to home each day for the week - so kind and thoughtful of my Manager and the team to do that. It takes a big load off my mind and lets Anji get on with the kids and house stuff without having to drop everything to get me in the afternoon.

After a restful afternoon I even went to the pool for a bit and did a few very easy very light laps - mostly 25 walk 50 breast 25 walk. Which kept me moving and released some of the energy I had built up sitting around for hours on end.

The ward is brand new and very well equipped.


Day three.

On the way in in the morning I started to feel unwell. The bounces and movements in the car made my stomach turn a little and I felt queasy. I knew this would be coming however it still was not nice.

Crossing the days off

The nurse gave me some drugs to help we feel better but I really didn't feel like eating much or drinking. I made myself eat some nuts and have some water during the day but that was about the most I could handle.
The main doors
Coming home it was all I could do to have some light miso soup and fall asleep on the lounge - with Cookie dog for company. I remember Anji starting or at least watching Downton Abbey Christmas Special… I wonder if she got through it all?

Soon after Tara awoke from her nap Anji went and collected Kate from daycare and I drifted off again, after some cuddles and lots of waving goodbye and kisses from Tara. Finally I was able to get up when they returned and got the kids ready for bath, while Anji did dinner. She bathed them as I can’t get my arm wet, I did dress Tara and play with her while dinner for being finalised. Thanks Anji!

It was delicious mini quiches made with our eggs, corn and some bought asparagus and yummy pastry. The kids and adults loved them and devoured them… yum!

Day 4.

Today, yes I was amiss in writing for the last two days but I couldn't even see clearly to do much else then lie at the hospital.

I felt more unwell this morning, not sure if that was down to the storm last night which kept me awake or the side effects and drugs reacting… Either way I was not myself this morning and have been out of sorts until just a few minutes ago.

I have been told to have some medicine to help me go number 2… Apparently the anti-nausea drugs can clog you up - hopefully I will get some movement down there shortly. Enough of that delightful subject…

I had the three drugs today, which meant that I need to be here much longer than the other days. First call was 9 - 4, however as I managed to get the first two lots through quickly it looks like I will be leaving about 3pm… yay an early mark.

The nursing stuff are really great at the hospital, all of them are fun, hard working and dedicated to looking after us. There are quite a few people getting treatment for various cancers and perhaps some other ailments. I have noticed that I am one of the only ones here every day. Most it seems are on weekly or fortnightly visits and I asked today if I was on a faster or higher stream

It seems that yes for this cancer the way to hit it is hard fast and powerfully. One nurse said she felt for guys like me who are getting big doses quickly. “It’s tough” she said, “But it’s over quickly and you can move on”. I agreed and said the quicker the better! Short pain for long term gain.

I will try to get to these blogs more regularly but I can’t promise I will always feel OK to write. When I do I will be able to jump on and send these out into the air waves.

Thanks again for reading and the support I get through Facebook, Instagram and Twitter (and of course here!)

Onwards and upwards!

Monday, 5 January 2015

C-Day has arrived

So today was the first day of Chemotherapy. I wasn't sure what to expect the one thing I was certain of was that it would be a lot of waiting and sitting and learning.
Waiting to commence... pre jacked
Anji stayed with me for a while until I was settled and getting my first lot of fluid pumped into me - 1 litre of saline.

She left to get back to the kids (who were staying at home with grandparentals)
Preparing for her first day at school... Made my day to have this sent to me...
The reason I needed to have to much fluid (and there will be more to come) was that one of the drugs Cisplatin can cause damage to kidneys, the fluid helps to get them over working so that the drug is passed through quickly.

I also had some anti-nausea drugs which are supposed to last around three days - and tonight I've got to say I don't feel too bad... then again I think that the longer I am on the treatment the worse I will feel. But today is a good day and I ate dinner!!!

I hope this lasts the week... so much easier than getting new ones each day
The Cisplatin was delivered with at least another litre and some extra saline to clean the line, the Etoposide had a little less liquid but I'm sure that added to the amount flushed I ended up with 3 litres of liquid running through my system.

I also had a cup of tea and some juice as my mouth still felt dry... who'd have thought!

I did a video of the drip on high speed getting the initial saline in... soothing in a strange way!

The ward, like the rest of the oncology unit is brand new and part of the redeveloped Box Hill Hospital and I have to say it is wonderful to be treated in something so new, clean and with all that is needed. I was there for around 4 and a half hours in my section the 6 chairs (managed by two very good nurses) turned over at least twice and in at least 2 cases 3 times (mine obviously didn't!). A lot of people were there on long term monthly chemo getting just a single injection or drip for 30 mins. I felt lucky that my cancer is treatable in a very simple way. Sure it will be a hell of a ride for the next 9 weeks but all going well that will be it. Done and dusted...

Kate is worried about my sore arm and cut hair, we have told her I need medicine to get better, and it will take some time but at the end I will be OK so she doesn't have to worry. Tonight going to bed she said "You don't look like my Daddy anymore". I replied that I am still here the bandage, the hair are just like clothes they don't make me, me. I gave her a cuddle and tickle telling her that only Daddy knows how to make her laugh.

I'm concerned how she will react when I do lose hair but at least she has seen me with less hair and we will keep talking about it.

All in all today was an eye opener, I learnt the process and what to expect and how to deal... I have time to work and even got a few hundred words down today on my never ending novel. Tomorrow I have some work reports to read and maybe I will watch another IT Crowd...

Tonight I feel a little light headed and foggy (sorry if the blog reads strange) I am tired and I guess I will go to bed early.

Lastly I want to thank everyone for your comments, private messages, likes and love. I have to say I spent the most time today in that chair answering you all and reading the messages and words of inspiration. To know that so many people are out there supporting me from family, old friends and new and the crew at work.

I love youse all!

Sunday, 4 January 2015

C-Day Minus One

So tomorrow I begin my chemotherapy to rid my body of the cancer.

Yesterday I shaved my hair in preparation - I didn't want to have drifts of hair falling out. It has in some ways made all this more real. I guess up to this point it has been something happening 'next year' something not imminent not in my immediate future. Tomorrow the future arrives.

This week has been very enjoyable. After the trip back to NSW, and seeing all out family and friends which was awesome, we were treated to a week child-free thanks to my in-laws who took the girls for the New Year's week.

Anji and I got to eat out and enjoy NYE in the City, we slept-in, watched movies, ate spicy dinners and didn't watch ABC2 (until after 7pm) the whole week... In fact I think the TV was hardly on at all expect to watch movies and of course Dance Moms (Anji's vice).

I also got to play some video games on my Computer during the day!!!

It is quite though, the chickens are pecking around the garden near me and the horses sometime whinny, the birds sign and someone is gardening next door. It's missing that constant noise of children, games being invented, or toys crashing and the asking for food, drink, do this or do that and the fall back question "what are you doing?" often followed by "why?".

I miss it and I love it's absence...

I have used this time, this brief moment before the unknown to relax, enjoy life and prepare for whatever may come next.

-1 Day...

Sunday, 21 December 2014

Writing, Place, Bravery and other things - Marking 2014

I have not written anything in this blog for basically a year.
I have however, written in other places. LinkedIn for work and industry related things - including some posted on the Australian Small Business Commissioners site and even a post on www.Lifehacker.com.au. The wife started a blog about our move to a small rural acreage on the outskirts of Melbourne HillShadowHouse, to which I have contributed.
Of course I write a lot for my job and have won a few grants and written annual reports and other work related stuff which has been good. I even send an abstract to speak at s conference next year (yet to know if I will be accepted)
So in many ways 2014 was the year I wrote - but it wasn't the year I wrote anything fictional - it wasn't the year I wrote "my one great thing".
I'm not sad about that, it just wasn't the right time to do that or maybe I wasn't in the right place.
I did however read a staggering (for me and my life) 37 books this year.
2014 was the year we settled more into Melbourne.
We found a place we truly feel more at home, it's still rented but in a long term way and has some much to it that we can do more with - the landlords lets us paint interior walls and put up pictures and it had built in book shelves!!!! (not enough but enough to unpack the books... having them out means so much to me and wife). See HillShadowHouse blog for more on that aspect.
Our friendships grew and the network was able to meet up and see each other with us as the connector not us coming or tagging along to other peoples events. That one night meant so much to me - I am and forever will be the host.
2014 I found my stride at work and have a lot on the go and plans afoot to move into and beyond 2015, it's exciting to have plans that will make a difference.
2014 was also the year I found out I had cancer.

It was what I would describe as the most shit day of my life.
I had had a call from wife in the morning, she couldn't find Henry our orange miniature farm dog, breed unknown. A more loyal, kind, honest, strong, protective dog you would struggle to find.
He wouldn't return to calls and was last seen in the back paddock.
Lately he had become more and more deaf, not able to hear us when at a distance.
After checking the back paddocks and not being able to find him, wife had left to take our eldest daughter to preschool thinking he would be back when she returned - and he wasn't.
After hanging up I rang around the local vets to see if he had been dropped off and left our number.
Short time later I got a call from a Council road crew who had found him. He had been hit by a car and was deceased.

The road crew got my address and said they would return him to my wife.
It was with a heavy heart I rang through to prepare her.

I had an appointment with the doctor that afternoon to find out the results of a scan - I managed to move the appointment up so I could leave early and get home to be with family on this saddest  of days.
The news I got was bad.
I had cancer and would need to get in to see a specialist as soon as possible. I told the young doctor about the day I had already been having. He nearly cried.
I'm not sure what I said but I left trying to simply get home.
He called me later, he had arranged a booking for Wednesday with the surgeon, he wanted to know if I was alright, I wasn't, I lied.

Fast forward and after the operation to remove my cancerous left testicle I went to see the oncologist to see how things were going. An earlier scan had revealed a shadow they didn't like, the follow-up showed it had grown.
Chemotherapy was the offered solution - I was prepared, I had researched the treatments. I asked questions I arranged a date to start. I got the material, the pamphlets, the advise, I was reassured and told to prepare and relax this was a normal treatment.

I sit here now 3 days from Christmas, with planned treatment to start on 5th January for a total of 9 weeks. It's going to be 3 cycles of 3 weeks.

Week 1 - 5 days
Week 2 - 1 day
Week 3 - 1 day
rinse repeat, repeat...

I have no idea what will happen or how the treatment will affect me. I only know that I will survive, I will beat this by fighting or by letting it pass through me.
In her book "The Art of Asking" Amanda Palmer recalls the story of her mentor Anthony and his battle with cancer. He told her he wasn't going to fight it, he would let it pass through him.
The oncology nurse explained how chemotherapy will work, they will put the cocktail of drugs into my arm intravenously and I would have to wait until all the chemicals have been passed through my system. In other words until I wee'd it all out.
That quote and the explanation from the nurse has given me resolved to fight and let it pass through me. To know when to battle and know when to just let it go - let it out of me, and like Obi Wan Kinobi become one with the force. Not to die, but to live another day and another and another... on and on.

Let it pass through me...
With Christmas we traveled north to visit family and friends, I knew this trip would be a lot of people asking how I am and asking for more explanation of what is happening and what will happen.
What I didn't expect was someone to tell me they respected me for checking, for going to doctor when something was wrong.
Someone told me they thought I was brave and strong to even find out I had cancer.
I found that weird.
It wasn't brave to know you had to do something about something being wrong. My testicle felt strange, it felt heavy, it was not normal, something was wrong.
I have been thinking about this and the only answer I can come up with is that it's because it was testicular cancer, to me it wasn't about the organ that was affected, it was about living and being able to step up and say "there is something wrong and I want it fixed".
Sure there was a thought or two of getting naked and having a doctor touch my bits, but they went quickly with the thought that they were medical professionals, they had probably seen, examined and touched more balls then anyone I was ever likely to meet.
They were professional and certainly put me at ease.
Or was it that I was brave to not only be examined but to also follow through and get the operation, to stand tall and follow up and be on the path I am on.
I've got to say the medical system worked well for me, the choice was simple. To live we need to do this, the medical science tells us that by doing these things we can make sure that you live.
To quote Terminator "Come with me if you want to live"

It wasn't brave, it was the solution to a problem I had. I went with them 'cause I want to live.
What I really wanted was them to say that it was a cyst or something else minor and no worthy of the sleepless nights of worry. I didn't want to hear it was cancer, I didn't want to hear it had spread, I didn't want to hear I needed chemo. I want it to be over.
To hear those words, to hear them say "I never want to see you again, you aren't healed but you are as healthy as the next person" is by doing these things. I do these things because I have to, not because I want to, not because I am brave.
I do it because I have so much to live for.