3 Too Many

“The tooth fairy teaches children that they can sell body parts for money.” -David Richerby

“If you feel like doing some work, sit down and wait… The feeling does go away.” – Unknown

Sorry folks for the late publishing of the blog tonight. Not long home and been dealing with computer issues so had to resolve them first. Let’s start with this morning. Wake in fairly much the normal state – pain. Nothing new to report on that front, as it is always there now, in fact if I wake painfree I think I would be more worried. up and take meds, make a cuppa, you know the routine. Shave head, cut self, get ready to face the day without any further self inflicted injury. Then into car and battle off to work. We have Roh as a special guest passenger today as it is her work Xmas lunch and doing the wise thing and not driving, just incase she indulges in a couple to many. Others please heed her lead in this as I want you all here reading the blog still at Xmas.

Throw Lachie out on Lincoln Road to cross to school. Then me out by the Police Station – obviously not wanted for anything as they didn’t grab me going past. Pleasant walk into the office – bloody cold, but refreshing. Get into see my fellow inmates, sorry Caregivers, sorry Colleagues and their smiling faces. Decide that a bit of light humor is needed just so they know the old Tony is still in this messed up head. In lieu of numerous other objects that have adorned my head – including rubber gloves, inflated rubber gloves and my green wig (was destroyed in The Press building) I have brought along a rubber thing – no bloody idea what it’s called. I proceed to place said thing on to my head then watch the reaction. That is a
the fun part for me – watching people smile. It just makes you feel good! Lots of laughs, stupid looks and pics, but it worked! Fun Friday. Day proceeds on,and a call sorry, group consensus is reached that Jono and I will go and get KFC for lunch. Eat far too much, but then I’m now boasting under 80 kgs so can afford the odd bad meal days. Sue then collects me and we head home. I feeling worse for wear and overly full – I know self inflicted, so try to keep going but feeling incredibly weak like I’m going to collapse at anytime. Make sure that I’m holding on to things as I walk too to be safe. Not resorting to my walking stick yet, but it does cross my mind. So go and sit, then lay in the sun in the bay window. Sleep grabs me quickly and manage to bake for about 40 our so minutes before waking again. Feeling a lot better after that. Over did it this morning and do going to pay. Oh what the hell I’ve had a great morning.

The boys get home and Jacob is brimming as he has achieved a 4.09 average for the part week, so deal on with him and he can choose his reward. Bloody KFC! Won’t be today though. We head off to indoor footy for Lachie, as I am feeling that I shouldn’t be left alone. He scored 2 goals in their 7-2 win. Well done matey. Then off to visit Nutty and Fridge and families. End up staying for dinner as well F&C’s – I’m having a real bad food day. So bloody what. I not exactly worried about it going to kill me as we know I’ve got other things working on that. An enjoyable fun evening with lots of laughs. Thanks guys, as nice to end the day as it stated. Mark this as a good day – check!

Last night on TV there was an article about the wigs they have made for cancer patients mainly Women whom loose their hair. And how they are looking for donations of hair – now before you go yeah baldy here is going to give some of his hair (minimum they need is 20cm) I do have my Platt of my hair which I had in my 20’s, which is about 30cms long.Yes I did actually have hair and a lot of it too. So I’m seriously thinking I’ll donate it if they want. Would be neat to give something to the fighters that need some help. As one of the ladies said, to have a wig and hair brings such a morale boost to your self confidence as cancer is such a public illness in the physical form of it (hair loss, weight loss, tied look) in that you can pick a cancer patient out easily. And with a wig it helps recover the dignity that gets stripped from you for fighting for your life. I can relate with that, as I have mentioned early on. It was one of my biggest gripes with treatment when I lost my hair that I would look like a cancer patient and get that stupid pitifullook from people. If you ever do it then stop it now! I know I don’t want pity, I want normality as I am still part of the human race like you. And I didn’t choose this ending. It has happened and it is happening and I can deal with it, but save the pity look for the sick child as I don’t want it. There, grumble over with.

Well it’s late – thanks steroids for the food today,and keeping me awake enough to write this. Now push off as I’m going to try to sleep. Hopeall have had a very good Friday, and have a wonderful weekend planned. First day of summer here and meant to get to 25 Saturday though it is currently sitting on 2 degrees. Be good, be careful, and have some fun. Till tomorrow

Here’s a little parting picture from Friday mornings antics. Enjoy!

I had my thinking cap on at work this morning so a pic was in order.

Kia Kaha.

“Bad things do happen; how I respond to them defines my character and the quality of my life. I can choose to sit in perpetual sadness, immobilized by the gravity of my loss, or I can choose to rise from the pain and treasure the most precious gift I have – life itself.” – Walter Anderson

Hard time getting to sleep last night – thanks to the steroids.  Though I woke feeling average.  Little did I know what a cunning plan my body has against the steroids.  Get up about 6:30 and make a cuppa and have morning meds.  Get ready for the day.  Jacob returns home as he got nudged by a car pulling out a driveway and it hit him and didn’t stop.  Stupid cow.  The kind man behind her stopped to check on Jacob as she drove off.  He has a bruised knee and was shaken – but thankfully nothing worse.  Head off then to drop him at school and me at work. 

Feeling average still, as I arrive at work.  Feel hungry thanks to my steriod mates, so have a bite to eat, then it starts – the reaching and then vomiting.  See this is my bodies cunning plan – to evict out all the food that the steroids are wanting to put in.  Then the pain kicks in – all over but mainly stomach and back pain. And the random act of falling asleep is back too – but has been there since this morning.  Make the call for help from Sue, and head home as I can’t function like this.

Call the Hospital Oncology dept, and go over the symptoms with them, and they tell me to stay home and to just up the pain killer meds and rest up.  I do exactly that and feel a bit better – not sure if it’s because of the rest or increased pain meds.  Get up later on and have some dinner.  Jenny then calls over for a visit.  Sorry I wasn’t much company as not to well.

I spend the next 3 hours throwing up and in agony – to put it bluntly.  Pain finally start to ease up a bit, so try to blog quickly between visits o the small room to vomit.  So really short and sweet (or is that sickly sweet ) tonight.  About to do M&D time then bed, as I am absolutely flattened today.  Hope all have had a good day.  Take care stay well.

Kia Kaha.

“Maybe a person’s world can grow bigger in all the right ways, not too wide that it becomes shallow, just large enough to preserve its depth.” ― Deb Caletti

Yep – pain again welcomes me on waking.  Well it had actually been with me all night and kept me from having a completely restful sleep.  Usual start to the day – meds and a cuppa.  Have breakfast then get ready for the day and head off via Jacob and Lachie schools. 

Walk in to the office – a cool one, when is summer going to arrive?  Get into the office and pleased to see my chair as stuffed from the walk.  Go get a coffee and then have a chat with Cath about the weekend.  Starting to feel really crappy, sick and head hurting and eventually have to go and throw up.  Feel a lot better for evicting my stomach contents, and rally again.  Keep wanting to drift off to sleep – not normal   Manage to have some lunch and keep it down.  Then head off about 1pm.

Make it home and have some quiet time dozing off on the bed.  Sue collects the Jacob from school, then Lachie arrives home.  We then head off to the hospital for my appointment with the Chemo Doctor.  Have a good meeting and get put back on the steroids to try to ease the pain and other symptoms.  Start Chemo next Monday as planned – last round.  Then meet with the Doctor again within 2 weeks to go over treatment and test results that I have to have.

Home then via the Chemist to get scripts filled. Then have dinner.  And a restless night as sore and sleepy.  Do the blog as a real struggle to stop nodding off.  Not liking where I’m at, at the moment.  Have a great day/arvo/evening.  Take care and all going well I’ll be here tomorrow. Sorry it’s short and sweet, but I’m just not able to do much tonight.

Kia Kaha.

“It is during our darkest moments that we must focus to see the light.” – Aristotle Onassis

Another bloody terrible sleep. Woke every time I turned over due to the pain. Also woke several times with my left arm numb or tingling. That is something new to deal with and watch how frequently it is occurring. Eventually wake at 6 am and get some meds on board then back to bed as feeling shattered due to creepy sleep. Lay there thinking about things for a bit before giving into sleep again. Wake then at 8. Have a nice cuppa tea brought to me and I lay in bed reading a bit before getting up and getting ready to face the day.

Have some breakfast and and watch Kayla open her birthday present.  Start to pack up the house and car and as need to leave about midday. All packed and ready to leave with plenty of time to spare so head off to the tennis courts and have a bit of a hit around there.  I don’t last to long as it is hurting to much so sit in the shade and watch.  We then head off for home.  Stop at Little River to get an ice cream as it is bloody hot today!!  Say bye to the Booth family – thanks for a great weekend, then hit the road for home. Nice to be home again, have some lunch and get unpacked, and have a breather for an hour before heading off to see Craig as he is having his house warming today.  He couldn’t have picked better weather for it. Catch up with Fish, AUBERY, Dutch, Kev, Fridge and Craig and have a couple of drinks and laughs.  I hope Aubery saw his name in the blog this time as I would hate to be nagged more about it  Don’t stay to late as boys have school tomorrow and I’m still hurting quite a bit so need to be home to take my meds.

Home for dinner, Blog and some relaxing staring at the TV  Thanks to those that have got in touch as they’re concerned about be.  Sorry about the slow replying as been in a cell blackout spot.  But thanks for the concern – nice to know you’re there. I’m OK – bloody hurting all over a lot but I’m fine otherwise.  Hopefully they’ll take a better look tomorrow with the Doc and come up with a better plan of attack.  I managed to hold off the hospital locking me up, though they did have a bed put aside for me in case I needed it, and to save me going through A&E. M&D time and bed – a time I am now starting to dread really as I tend to wake up and the brain goes into overtime, and after I get some restless sleep I then wake to agony – it is just shitty. Hope all have had a brilliant weekend and done lots of bad things  I won’t tell.

See Aub I did mention you on the blog. I don’t care if you or Fish saw it the first time I mentioned you. I hope that you see it this time!!!  And yes I still owe you a warm beer.

 Take care mate.

“Sometimes we expect more from others because we would be willing to do that much for them.” – Unknown

Once again it took bloody ages to get to sleep, then had a restless time, but feel I’ve had a solid sleep.  Wake about 6 in real pain and head down to get meds on board.  Then back to bed for an hour to let them do their thing on me.  Up then at 7 and not much improvement on the pain – in for a day like this – f’ it!! Get ready for the day, have a piece of toast for brekkie, then out the door.

Drop Lachie at school, then me in town.  A pleasant shuffle into the office – it was definitely slower than normal.  Get in and spend most of the time there closing my eyes wishing the pain would just die away.  But it doesn’t.  I keep on taking as many pain killers as I am allowed to trying to get this under control.  Head home about 1pm and call the hospital on the way to get their advice on whether I go to se them (I don’t want to do that) or if I can up my meds a bit more.  They go away to get the doc’s opinion of what to do, but they don’t want to see me – Yay!!  They get me to up my meds instead as I see the Doc on Monday arvo anyway so will get some proper real meds then.

In case you are wondering the pain is called Neuropathic pain and is caused by the cancer and Chemo.  SoI’m stuffed either way.  It is just the way it is.  Pleae don’t worry as there is nothing anyone can do about it really.  But the whole day has been about a 5-7 on the pain scale.

Quiet arvo and evening then as still hurting lots even with the upped meds.  Hopefully I’ll just sleep it off.  So very short and sweet blog today , ass it is even hurting to type.  Have a good weekend.  Take care.

A bit of a laugh that somes up most nights for me ….

How true – every night.

Kia Kaha.

“In its early stages, insomnia is almost an oasis in which those who have to think or suffer darkly take refuge.” – Sidonie Gabrielle Colette

 You know the story – didn’t get to sleep until about 1:30.  Got plenty of reading done though.  Wake at 6:30 take meds then back to bed to doze as to sore to get up that early.  Up at 7 then and make a cuppa, then get ready to face the day.  Head off to work via St. Thomas’s as Lachie has his entry assessment exams today.  Leave them both there and head off to work via the Vampires, sorry blood test lab.  Then stop at the Coffee House and have coffee and a chat about what we need to ask the Doc at Monday’s appointment.  Make sure we have all our questions down ready to roll.  I know it is still 4 days away but that will come around far to quickly, and while they are fresh in our  minds.

I’ve been reading about Radio Gamma knife surgery.  But unfortunately it turns out that this won’t be an option for me as the tumor type is so complicated around it that they risk doing more harm than good.  I found a posting from a person though that has the eact same type of tumors too – the first one I’ve found. Got quite excited, but the posting is from mid last year and I can’t find anything else on the web from him so only can presume that he lost his fight.  Still I am going to do some more research about this surgery.

Also I’ve been thinking about facing this last round of Chemo.  I guess to be blunt I am worried/scared that when it stops these MoFo’s are going to light up straight away and continue on their merry growth.  Reality is they could do that, or they could wait for several months before anything happens.  But when it does happen, I will have to find a new strenght and fight as it is going to be so much more harder to do without the assistance of the Chemo.  This could be where the stubborn attitude will come to the fore.  I will be needing all the support possible as well as I can only imagine how bad the mental fight will be as well as holding on emotionally to all I have.  If they can get my pain managed better then I will be able to stay focussed on the task at hand.  I will have top also work hard to stay out of the dark places that you go to sometimes.  So the fight will be a constant 24/7 battle that is going to test the endurance of me.

I read a letter a wife had written about what it is like from the Caregivers perspective, and there was a paragraph which I thought was very good describing how looking at the patient (her Husband) from the outside and imagining what it was like for him.  This is that paragraph. ‘I try to imagine what having that reminder in my skull might be like. And while I did live with fear, closely, for a long time , I’m sure that my imagining doesn’t even come close to the reality of what it was like for him. Dave looked death in the face every day.  He carried it around in his head.  What must that be like?  And then I think about what a crab I am when I have a headache or a cold.  And then I’d think about what Dave was dealing with . Wow. Humbling’  This is the best possible description I have read of what it is like living with this bloody life stealing illness.  Every time you look in the mirror you are reminded of the reality that there is 3 bombs in my skull, 1 the size of a golf ball with only one mission – invade and destroy for no purpose expect that biology and genetics has allowed to happen.  That is the real bugger with it all there is no physical purpose for biological need for the human body to grow tumors but it can and it does and it is random, and truly does not discriminate in anyway.  Also while I say that it is our journey, and everyone whom cares for me or aids me is involved at some level – yes even you reading this is becoming involved, it is in an unselfish way (please understand what I am saying here), only my journey because when I die I will stop, but you will all continue on your own journeys and they will be yours, and only yours.  While it will involve so many others it won’t be their journey.  You will learn from it though.

Head off to the office then.  Have a great day, everyone is in a good mood and having a laugh so it makes the day go quickly.  Head off about 2pm, home and have a quiet time as feeling very tired and drawn out.  Others arrive back home about 6:15 in time for dinner, no big meal, just nibble on a couple of things – bloody nausea.  Start blog early as a few things to say and fading on and off.  My head has being giving me hell today.  Watch some TV and then M&D time.  Figured if I go to bed earlier then by the time my brain and the pain winds down a bit, I will be drifting off before midnight.  But tried this before and it doesn’t work.  Hope you have had a good day.  Take care.

Kia Kaha.