Shiney happy peeple

It's been a busy few days. Had an extensive appointment with the Haematology doctor and coordinator on Monday. They are the people who will manage the high dose chemo & stem cell replacement stage of my treatment. As this phase of treatment could be pretty challenging I am pleased to say that I am very confidant that they are the right people for me.
They gave me a heap of information about what is coming up and what I can expect. I won't go into all that info here, I'll just describe the process through this blog as we go along.
There is one bit of the discussion I must share though. When I asked if there is anything I could do over the next week in preparation for the upcoming treatment, they told me to eat more and try to put on weight... awesome. These are my type of people... except that they didn't give me a prescription for pizza.

I have had several tests and check overs in the last few days to ensure I am in good enough shape to cope with what is coming, these include:

• A lung function test. I'm pleased to say that there has actually been a small improvement in my lung function since the issues I had in 2008, this is a very good result given all the treatment I have had since then and puts me in good stead for the coming months.
• Heart scan (echo), and review with cardiologist. Another good result here, all normal, all good.
• Dental review, the treatment I am about to have is pretty hard on the mouth and digestive tract, so a healthy mouth that has no hidden sources of infection is pretty important. They also gave me a 'megasoft' toothbrush and some special mouth wash. Robyn pinched a second toothbrush for her collection! All was good here too.
• Renal scan. It is important to to determine the actual level of my kidney function. This is because the kidneys are responsible for removing the chemo drugs from my body, but we don't want them to do so too quickly or too slowly, the drugs need enough time to do their work but we don't want them to hang around too long because they could cause problems (especially to the kidneys). The chemo dose I get will be determined by my kidney function. I will get the results of this test early next week.

The Kidney test itself was pretty funky, I was injected with a radioactive tracer that would be removed by my kidneys during the course of the next four hours, hourly blood during that period were taken to determine how quickly the tracer was being removed by my kidneys. In the second part of the test I was again injected with a radioactive tracer, but this time I just lay down in front of a gamma camera. This camera would pick up the radiation from the tracer as it moved through my body, was processed by my kidneys, and then travelled from my kidneys to my bladder via my ureter. We could watch this on a screen in real time, the little dots of radiation appeared on the black screen like stars in the night sky, it was such a nice moment that Robyn started singing Don McLeans Starry Starry Night, I'm sure I could see the planet Uranus too...
Now when I go to the toilet at night I don't have to turn on the light, lol, sorry for the pic:

Shine on you crazy diamond

The results of the tests are great and give me extra confidence that I can get through the next phase of treatment without any unnecessary complications. I am very pleased that I have looked after my body over the years.
I also see a pschologyst next week again to make sure I have everything in place to get through the next few months. I wonder if I have been as good at looking after mind as I have at looking after my body, maybe they will have to use the crazy stamp on my forehead:

Cheers, Pete.

Day 11 of the 2nd chemo cycle

Well it's been a couple of days without an update, sorry about that, we have been a bit busy with appointments, and napping as need be. I tend to run out of energy in the late afternoon.
We also had some very sad news from some people dear to us, so we felt even more deflated over the last couple of days.
I'm very, very happy with where I am at in terms of recovery from the last dose of chemo. Day 11 means I am still at a point where my blood counts are low but they are now entering the recovery phase. My blood test today indicated that:

• haemoglobin was at 101which is low but holding up ok, normal levels are between 130 and 170
• my platelet levels were 55, this was a slight fall from Monday, but platelets often lag behind the other counts, so the small fall indicates that they are about to turn the corner, normal levels are between 100 and 450.
• white blood cell count was 0.9, still very low but climbing, normal levels are 4.0 to 10.0
• neutrophils were at 0.66, still very low but climbing, normal levels are 2.0 to 7.0

They measure a bunch of other stuff too but the above are the key numbers, I will need the counts to be above a certain level before we can go ahead with the next round of chemo...so that we can trash them  all over again (safely) in a few days time...hmmm. Not sure if I feel like this guy:

ancient Greek hero undertaking an epic task

Or maybe more like this guy:

Dung beetle rolling a turd up a hill

As my platelet level is the slowest responder, it is the one that will determine when the next round of chemo can start.
What the safe level is can be the subject of some discussion between the teams that manage my treatment.
The medical oncology team is keen to push the program through as originally laid and without delay because evidence shows that doing so gives us the best chance of a cure. Perfectly understandable.
Meanwhile the team that actually has to manage me through the process (haematology) want to mitigate the risks as much as possible. Perfectly understandable.
I want both.Perfectly understandable.
Cheers, Pete.

The big Movement

Feeling reasonable again today, much like yesterday, no new problems so I can't complain.
We moved apartments yesterday, going from a 1st floor apartment to one on the ground floor directly below where we were. That's ideal as it means I don't have to worry about the potential problems of  getting up and down stairs latter on in the treatment when the legs get a bit wobbly. We are here for the rest of my treatment, however long that turns out to be.
The place is turning out to be just about ideal, located in a nice leafy area, I am currently sitting in the very pleasant dappled light of a sunny Melbourne autumn afternoon, shadow and light dancing around the room as I write, two counterpoints that can only exist with reference to each other. If I have to be away from Tassie then I must admit that there are a lot of  places way worse than Melbourne in autumn. We are only a 15 minute walk away from the hospital, and most of that is through the park, other services/facilities/public transport are also within close walking distance. The owners/staff here are friendly and very helpful, I think they might have accommodated plenty of Peter Mac patients over the years. Given that we had no idea where we were going to stay when we arrived in Melbourne, things have worked out nicely. Once again, no small thanks goes to Peter mac's social work dept for their help.
If I had to complain (and I don't- but I will anyway just for the hell of it), it is a tad noisy around here. That's probably just due to the fact that we have got used to the quite of Tassie, after having learnt to ignore Tassie's combo of dualing chainsaws and dualing bangos... and people squealing like a pig (I've seen Deliverance -shiver-)... ahhh we love it, it's got character! The real truth about Tassie is that virtually everyone down there has been fantastic to us from day one. Particularly our wonderful neighbours.
For those who saw the upstairs apartment, the downstairs one is similar but with a much more substantial kitchen. More importantly, it has a much more substantial fridge... with a freezer that has plenty of room for icecream. We know what matters.
Cheers, Pete

Day seven of cycle 2.

Today is day seven of the chemo cycle. After a couple of pretty flat days on Friday/Saturday I started to pick up nicely on Sunday and I'm feeling pretty good today, all systems are in reasonable shape for this stage of the cycle. That is perfect as it puts me in good shape to get through days seven to twelve, which is the period when my white blood cell, red blood cells, platelets and other blood counts drop off to levels that can be problematic. The big trick during this period is to avoid infection as that is the thing that will put me back in hospital. My energy levels also yo-yo all over the place during this period, I can't predict it or do much about it except be aware of the need to accommodate a nap attack anywhere, anytime, as a matter of fact I feel like one nowzzzzzzzzz, zzz zzzz, snort, fart, dribble, (eww) zzzzz.
Back again!.
The other big thing for me to avoid at the moment is anything pointy or sharp. That's because I am still on twice daily clexane injections to thin my blood so the clot in my neck breaks down and disperses. When you add in the fact that my low platelet levels means that my blood doesn't clot readily then the answer to the question "If you prick us, do we not also bleed?" is hell yeah, like a stuck pig. I'm not sure how anyone could stick a pig, they're adorable, but also delicious.... damn life is complicated.

I'm also not sure that quoting The Jewish Speech from the Merchant of Venice in combination with a reference to stuck pigs is entirely appropriate either... life really is complicated!

My upcoming chemo has been rescheduled slightly to make sure I am in the best possible shape to cope with the first high dose cycle. It will now start on the 3rd of April. I see the team that will manage me through that process this Wednesday, so I might have more to say about it all then, at the moment it is all a bit unknown. Over the years that I have been fighting this it has often been the waiting period, the times of unknowns, that are the scariest and hardest to cope with. Inspite of my best efforts, sometimes my brain can't help making shit up to fill the void (please, no jokes about there being a big void to fill, unless you have a gem to share). Having something to fight back against helps. Of course having nothing at all to worry about or fight against would be even better, but not all of us are that lucky. As I said, life's complicated, those complication are just another small part of the wonder and the mystery that makes it so incredible.
Cheers, Pete.

Home!

Out of hospital this morning, I can't even describe how awesome that feels!
Very tired/fatigued today, the tiredness is hard to describe too, a small part of me is so happy to be out of hospital that I feel like an over excited dog who wants to go to the park and chase sticks, the rest of me is to tired to be bothered typing anymore. Sleep offers no relief from the fatigue at this point, indeed, sleep can be very hard to come by. The combination of extreme fatigue and insomnia is not one I recommend.
Should be over it in a day or two.
Cheers, Pete.

Day 3 of second chemo cycle

Ding ding, 6pm and all is well, I'm pretty tired now, but that's to be expected at this stage, all the other possible complications are well under control.
I just started my last bag of Ifosfamide for this cycle, yay, another step down the road.
And that's how I climb this mountain of crap, 'one step at a time', it might be a dumb cliche overused by overpaid meathead sports people facing petty problems, but for me it works. There are probably a couple of reasons for that. Firstly, the whole treatment program is just to big to chew, let alone swallow; and it's just too unknowable, there are too many possibilities on the table, if I gave each possibility it's due I wouldn't have the time to deal with what needs to be dealt with right now. And managing the here and now, the daily issues that cancer and chemo throw up, really matters. If I lose control of those daily issues then something small can easily blow out of control and start affecting the next step of the process... and so on. So one step at a time it is.
The next step is to get through the rough patch that occurs after the chemo for the next week and a bit, and then we will start preparing for the high dose chemo.
Cheers, Pete.

Day 2 of second cycle

It was a bit of a long night last night due to various factors, mostly because my chemo regime didn't start until about 7:30 due to the picc line installation. The chemo routine went as follows:

• 7:30 to 9:30pm: pre chemo hydration (1 litre of saline solution)
• 9:30 to 10:00pm: various pre chemo medications
• 10:00 to 2:00am: chemo (ifosfamide, mixed into 1 litre of saline solution)
• 2:00 to 2:15am: post chemo medications
• 2:15 to 3:15 am: post chemo hydration (1 litre of saline solution)
• rest of night: wake up every half hour and go to the toilet in an attempt to pass the three plus litres of fluid I have just been given!

The usual sleep interuptions for regular observations and nurses attending to the needs of other patients in the room also occurred. Add in to that the fact that one of the other patients in my room needed an intervention from the medical emergency team and it all adds up to not much sleep (fortunately the guy was ok after a bit of work).I got through today surprisingly well though, managed a nice walk through the park this afternoon with Robyn.
Still feeling pretty good and eating well so I am very happy about that. I am doing better at this stage of the chemo than what I was at a similar stage back in 2011. The chemo routine above repeats every 24 hours for the next couple of nights, but they can bring the start time forward 2 hours every night so that will help with sleep a bit. Should be out of hospital on Saturday morning
In what I assume was meant as nice gesture, polly grew a second head overnight after finding out that I now live in Tasmania, either that or the nurses are playing tricks on me! Nice to be reminded of home, I think!

Treatment update

Chemo started again late yesterday after the four day delay caused by the permacath issues. So that makes this day 1 of the 14 day cycle. The drugs I am being given are exactly the same as for the first cycle, paclitaxel on day one, then ifosfamide for the next three days, neither of which you would want to spill on your lawn, or a concrete driveway for that matter! I am also given a bunch of other drugs to control the immediate side effects from the chemo drugs, they seemed to do the trick last time, so fingers crossed. Robyn also has her toes crossed, she can do that now that she has got here freaky new gorilla shoes (see pic), I reckon she doesn't walk through the park anymore, now she just swings through the trees! All being well I should be out of here on Saturday morning.

I am also off all antibiotics now as the temperature spikes have settled down and no source of infection was ever found even after lots of testing, the thinking now is that the temperature spikes were just part of my bodies response to the blood clot. The other symptoms from the blood clot have also settled down, my neck is much less stiff puffy or sore, I put it down to my skill in giving myself the twice daily injections.
So all in all I am feeling quite well, and ready to get through the ups and downs of this cycle of chemo.
Thank you all for your continued support and best wishes!
Cheers, Pete.

I made the paper!!

From todays Age

Phonecalls from the Age to the Peter MacCallum Cancer Centre today have confirmed some surprising
information. This paper learnt that the hospital was in shock after patient H gave himself an injection.
Nurses at the scene were heard to utter 'about $%*#% time', or words to that effect, others fainted in shock.
Circumstances surrounding the event are becoming clearer, famed chemo specialist Dr F. Arkin-Weedkiller
uttered "he only did it after being threatened". Urologist Dr Seymour Weiner, whilst holding a bag of nuts,
said "sometimes it is our woosiest patients that surprise us the most". The doctor closet to the event was
Howard Hertz, he describes the incident and the key exchange between Nurse and Patient below:
"It appears the catalyst for this remarkable event were words uttered by the famous Nurse Ratched,
of One Flew Over the Cuckoos Nest fame, we bought her out of retirement just to look after Patient H.
Nurse Ratched: "If Mr. H doesn't want to inject his medication, I'm sure we can arrange that he can have it
some other way. But I don't think that he would like it."
Patient H replied: "Gimme the damn needle!"
Events continue to unfold, the Age believes that Patient H's haste to give himself the injection after the terse
threat from Nurse Ratched led to his first attempted jab just bouncing off his now rubbery skin, this
event led to merest hint of a smirk appearing on nurse Ratcheds face, his next attempt is said to have been
rated as more successful.

Pretty amazing work by the Age, if you read the words formed by the first letter of each line of the article then they have really captured how I feel... (hope this works on everyones device, otherwise you will just get gobbledygook).
And for those of you who have not seen it I reckon the film One Flew Over the Cuckoo Nest is worth a look.
Cheers, Pete.

Treatment update

It's Monday night as I type this, I'm still in hospital being treated for the blood clot and the odd spikes in temperature that I have been getting intermittently. The temperature spikes were being treated with intra-venous antibiotics, which meant lots of time attached to polly and fairly interrupted sleep as the antibiotics ran overnight (due to lots of beeping and farting from polly, and the night nurse for that matter). Today my temperatures have settled down a bit so we have moved to oral antibiotics, and polly has been detached and shoved in the corner.
Hopefully that means I will get a reasonable nights sleep tonight as tomorrow I am likely to have the new CVAD (central venous access device) installed. If that happens then chemo will restart either tomorrow or Wednesday.
This time the CVAD I am getting is known as a PICC line (peripherally inserted central catheter). It's basically a tube that gets inserted into a vein in my arm and travels along that vein until it is just near my heart (see pic below). I had one of these back in 2011, it is not as easy to live with as the permacath as it is always getting in the way, but on the upside it lasted the full three months it was needed for without any serious issues, so I will be very happy if this one does the same.

The blood clot is being treated with twice daily injections that are likely to go on for months.The symptoms from the clot have settled down, regular paracetamol is enough to control the pain in my shoulder/neck.

All in all the worst I can say about my current stay in hospital is that it is a bit dull, but, given the alternatives, I'll put up with dull without any complaints at all. We even went for a short walk in the park today after I was released from polly, getting out of the building for a bit is always a huge relief, even on a 36 degree day.
Cheers, Pete