A Confession

I can't deny it any longer, it's time to fess up. There is another woman in my life.
Everyone, meet Polly, Polly, meet everyone:

Sure she's not pretty, she could definitely use a feed and she is not what you would call huggable. She is also cold, temperamental and very demanding in that shrill voice that often wakes me at night. She definitely lacks motivation, I have to push her all the time and when she does get going she lacks direction and requires constant input from others. Polly is also about as clingy as it is possible to be, she really gets under my skin sometimes.
On the upside, through the haze of hospital sleep I do hear her sing to me sometimes, even if it is something repetitive and annoying like:
the night nurse has squeaky shoes
the night nurse has squeaky shoes
the night nurse has squeaky shoes
the night nurse has squeaky shoes
the night nurse has squeaky shoes
And on and on she goes in her not so dulcet mechanical beeping and farting tones for the next five hours.
She has also supplied me with some truly wicked drugs over the years, let's not talk about the side effects.
Come to think of it, the sooner I get out of this crappy relationship the better!
Cheers, Pete

It can't be true can it?

Robyn offered an addendum to my earlier post about hair. Given my current predicament I'm not sure that I should share it, I doubt it's accuracy but here it is anyway:

Men who go bald from their forehead are great thinkers,
Men who go bald from the top of their head are great lovers,
Men who are totally bald only think they are great lovers.

I'm not sure how she knows this, and I am not sure where it leaves me!

Cheers, Pete

Hair

"There's many a man hath more hair than wit" William Shakespeare, A Comedy Of Errors.

So if Shakespeare was right I should be getting wittier by the second, cos my hair is coming out by the handful at the moment.
Hair loss does not occur in all chemo patients, some chemo drugs cause hair loss, others don't.
It is an event in a chemo patients life seems to draw one of two responses, for some patients it is a a big deal, irregardless of whether they are male or female. I fall firmly in the other camp, the one that really doesn't give a rats razoo. However, I will admit that the first time I noticed it starting to happen while enjoying a meal in a pub back in January 2008 I was a little taken aback even though I had been expecting it, I think it suddenly made things real.
The other thing about 2008 was that even though the docs tell you that hair loss is likely to happen, they don't tell you that it is best if you shave your hair very short as soon as it starts to happen if you want to avoid waking up one morning with a mouth full of hair and then spending the next three months hacking up hairballs.
All together now:
Give me a head with hair-hack-, long beautiful hair-cough-, shining gleaming steaming flaxen waxen,-hack-.
Give me it down to-choke-there, hair, shoulder length or longer, here, baby, there, mamma, everywhere, daddy daddy haaa-cough, hack-aaaair!
Flow it, show it, long as God can grow it, my hair" Hack Haaaak Haaaaak, Sputooy.

Cheers, Pete.

God I Hate Surprise No.3

I went home after my last apheresis session on Thursday morning feeling pretty good. About mid afternoon I fell in a hole, I was hit by sudden fatigue and elevated and rising temperatures.
As I was out of the risky neutropenic phase it made no sense, especially the speed at which the fatigue and elevated temperatures occurred, it was like someone had flicked a switch.
As chemo patients often lack the ability to fight infection the standard procedure for high temperatures is to call the hospital immediately, however, as my blood counts were now good their advice was to just monitor the symptoms because my body should be able to fight back, which it did, a couple of hours later the symptoms were gone (someone flicked the switch again).
All good until late evening when the neck and shoulder pain I'd had a few days earlier returned with a vengeance, this was the first real discomfort I have had during my latest treatment, fortunately the right combination of pills allowed some sleep.
Fronting up for chemo the next day I had the opportunity to explain what was going on to 15 different doctors and nurses on 15 separate occasions... (15 is possibly an exaggeration on my part).
More blood cultures, more samples, more swabs, more tests, more prodding, thankfully no probing.
This time around the ultrasound found a small bloodclot in my neck at the permacath site. This means it had to come out.
Removal of the permacath involved the doctor grabbing it in both hands, placing his foot in the middle of my chest and pulling for all his worth. No success. So, as he was a little on the small side, a couple of the better fed nurses grabbed him around the waste and... I'll shut up now.
The unplanned removal of the permacath has some ramifications:

• The chemo I have can only be delivered via a permacath or similar CVAD (or Central Venous Access Device for those of you who can't be bothered looking it up).

• As it is now after 5pm on the Friday of a long weekend, the chances of having another CVAD installed before Tuesday are zero.

•  That means my chemo will be delayed (this is no big deal in terms of the overall treatment plan).

• The delay in chemo start does not mean that I get to go home now and come back on Tuesday as the blood clot still needs treatment, so instead of a three night stay it is probably going to become an eight night stay. Bummer.

I hope the above does not come across as 'poor me' as that is not how I feel. The upside is that the permacath hung in there just long enough to complete the stem cell collection, if it hadn't we would have been starting the whole process from scratch with less chance of a successful collection, and without a good stem cell collection it would be a case of 'no high dose chemo, sorry, better luck next time, next patient please'.
This post is just an attempt to share with you a bit about what can occur for a some of chemo patients, especially those whose bodies have suffered through multiple relapses. Its the rollercoaster ride to end all rollercoaster rides.
I am a little bemused about it all though.
Cheers, Pete

Stem Cell Collection

I'm pleased to say that I had a call after Thursdays session on the Apheresis machine (aka the fisher & paykel on spin cycle) advising that we have now collected about 11.8 million stem cells. That number is right at the top end of the range that we needed so it is a great result for the three days. I put the success down to Nurse Robyn's fine skills in delivering the two nightly injections (with a smile...), sadly for her I don't need any more jabs for a couple of weeks.
The stem cells will be put on ice until I need them during the high dose chemo phase of my treatment. At least that's what I have been told, I still think a few might be sent to an evil lab to breed mutant clones for the coming zombie apocalypse. Remember to tell people that you heard about it here first next time a zombie that looks a little like me is trying to beat down your door and eat your brains!

Visitors

Visitors are great, especially if I know them...
In what must be a new record, I received my first visitor today only two minutes after sitting on the chair in my room.
Unfortunately the visitor who entered my room to the protests of his attending nurse turned out to be a somewhat confused and elderly Croatian fellow patient who decided he wanted to sit on my bed (at least I hope that is what he wanted as he was dropping his pants at the time).
His nurse managed to direct him to a vacant chair successfully, so successfully in fact that he then decided he going nowhere. Fine by me, but as he didn't know where he was and I don't speak much Croatian there wasn't much conversation to be had. The staff had decided that this was all inappropriate anyway, and a crew of them managed to move him on... only for the whole process to be repeated 5minutes later (my room has no door).
The third time around things were a bit more of a concern as he was acting more aggressively toward the staff, so the next thing I hear is over the hospital intercom: "Code grey, ward 9, room 8, repeat, Code grey, ward 9, room 8 (security call). Now my reputation within the hospital for attracting trouble was being broadcast...
On the forth occasion (that I know of as I had to go downstairs for a while for an ultrasound) the old boy actually swiped a nurse with his cane (without any real force). I haven't seen him in the couple of hours since so I assume he has been sedated, strapped to the bed or removed from the ward. It still might be an interesting night.
Could have been worse, we saw a guy up here in handcuffs the other week...
I know I have praised the staff before but this is an opportunity to point how wide their skill set is. This is a public hospital and it is the public in all it's glorious contradictions that walks in through the door, for good or bad. It's certainly far from the first time I have seen them deal with confused, drugged up, angry or abusive patients (or visitors...). As usual, the staff just get the job done.
Cheers, Pete

At home, yay!

Got out of hospital this afternoon. I will be going back in again tomorrow, but just for another stemcell collection session and an appointment with the oncologist. We have collected about 7 million stem cells from the two sessions so far. We need a minimum of 9 million, so tomorrows session should put us well over the minimum, and we will put another step behind us. Feeling a bit tired but otherwise ok.
Cheers, Pete.

The past few days.

God I hate surprises no.2

So much for getting through the first chemo cycle unscathed and the stem cell collection being uneventful, it has been a busy couple of days, so here is a quick summary:

• Started to get a stiff neck near the permacath site on Saturday, got a bit worse during Sunday.
• Woke up on Monday morning after a pretty rough night with a stiff neck, swollen right arm with protruding veins, a bit of a fever, a couple of small boils and generally feeling pretty crap
• Went in to Peter Mac at 8am for stem cell appoint and to get checked out, Apheresis people took one look at me and decision was made to not go ahead with stem cell collection before a thorough check out due to possible infection or clot (cue lots of gags about Mondays).
• Various tests and checks were done to try to discover what was going on including: ultra sound to rule out possibility of blood clot, chest xray to rule out chest infection, lots blood cultures and swabs were done to try to figure out if it was an infection. Various other prodding, poking and pulling of concerned faces also occurred. (inspite of the fact that all these tests were unscheduled the staff managed to make them happen)
• Was admitted to ward 9 Monday morning, antibiotics were started. Most of the test results came back negative: no clot, no obvious source of infection.
• Started to feel a bit better on Tuesday morning. Antibiotics continuing.
• After further checks they felt it was safe to do a stem cell collection on Tuesday afternoon, went pretty well except that I had a minor reaction to the anti-coagulant that they use (was easily fixed with a calcium drink)
• Now Wednesday morning and I am currently feeling ok, having another stem cell collection done at the moment, possibly the last if we get enough today.
• Blood counts (white blood cells, red blood cells, platelets) are starting to look good again today (Wednesday, which is day 12 of cycle, so right on target for that).
• Will probably going home some time today (Wednesday).
• Back in tomorrow (Thursday) for appointment with Oncologist.
• Admission on Friday for chemo (but that needs to be confirmed).

At this point in time the problems with neck/arm seem to be due to a possible infection at the permacath insertion site, inspite of the fact that there are no obvious signs of infection at the site itself. If there is an infection there then the permacath will need to come out as it would likely become an ongoing issue, one that would present too much of a risk during the high dose chemo phase of my treatment. It's all a bit inconclusive at the moment, we'll find out more in the next few days.

Like the issue with my leg a couple of years early I am again hearing highly experienced medical professionals say things like "well that's odd..." I think an email may have gone round the hospital telling people that if I am coming to their department for a procedure then they should not expect things to go smoothly, they should put on a brave face and treat the experience as a learning opportunity, and they should expect to do a lot of rescheduling.

I have to say once again that the calibre of the staff here at Peter Mac continues to impress me enormously. It's not just what they do, it's the way that they do it with professionalism, diligence and humour under any and all circumstances that earn my admiration. Our heartfelt thanks goes out to you all.

Cheers, Pete.

Day 10 of the chemo cycle

It is now late on day 10 of the first chemo cycle and things continue to go well. Day 10 means that that my blood counts should be about to increase. I am almost past the neutropenic period that occurs between day 7 and day 12 (this is the period in which my white blood cell count is at it lowest due to the chemo, and my immune system at its weakest). So fingers crossed that I have got through the this cycle infection free.

The reason that chemo damages blood counts is because most chemo significantly suppresses the activity of the bone marrow, and it is in the bone marrow that many key blood components are produced (such as platelets, red blood cells and white blood cells).
Therefore, reduced bone marrow activity means:

•  low platelet count (platelets are responsible for blood clotting)
•   low red blood cell count (red blood cells carry oxygen though the body, low red blood cell count, or anaemia, is a part of the reason chemo patients have a constant battle with fatigue)
• low white blood cells (white blood cells are responsible for fighting infection). 

The cycle length for my first two rounds is 14 days this time around, whereas for the previous treatments the cycles were 21 days, so it's a bit more compressed than what I have had before. This will mean my blood counts have less time to recover between cycles. The Docs will keep a close eye on my blood counts to make sure that the next cycle can begin on Friday.
Cheers, Pete.

Exercise, also, People are wierd.

Question: What Is the hardest part about learning to ride a bike?
Answer: The pavement.
One of the best ways to fight chemo fatigue in its less extreme stages is to get up and do something, irrespective of how hard it might be to get started, I usually feel better after a bit of gentle activity (with a couple of very notable exceptions- some of you already know the story about my leg). If I don't make the effort then the grip of fatigue becomes inescapable and immeasurably heavier, and that makes for a very bad day indeed.
So, having woken up feeling fairly crappy yesterday, I decided to take my own advice and get out and get some fresh air and gentle exercise, plus it was a beautiful day (as is so often the case here in Melbourne in Autumn). Things were going well, the exercise was working and I had started to feel much better- until we we got to within less than 50 metres of home. Crash, a car knocked someone else off their bike just a few metres from where we were walking... sorry if I led you along a bit there.

I'm pleased to say that the guy was perfectly ok, apart from the fact that the leg of his baggy shorts were stuck under the car wheel he would have got up without so much as a scratch.
I didn't see the actual impact but we were close enough to take in the scene immediately. Peoples reactions in these situations fascinate me, and, as I tend to do, I held off for half a second to take in the scene. The other cars just kept going, the woman crossing the road from the other direction set her eyes firmly forward and in a now more measured stride she just kept walking and barking into her phone, the cyclists behind peddled on by, other pedestrians just stood, gawked then moved on. The driver of the car was hysterical and jumped out of her car to say to the poor guy pinned down by his shorts YOU SHOULD HAVE STOPPED, WHY DIDN'T YOU STOP!".
Robyn was the first to react, checking on the guy to confirm he was ok. I gently guided the woman away for a little walk so that she could compose herself before she got back into a car full of kids without causing further chaos up the road. We ensured that the car was safley moved off the guys shorts.
All in all no real harm was done, except to the bike, which is never likely to travel in a straight line again (but I'm not sure that it had for quite some time beforehand...). The cyclist was a bit bummed out about his bike but he was otherwise totally chilled about the whole event and went on his way.
We went home for lunch, I had a pretty good afternoon after my mornings exercise.

"Learn to ride a bicycle. You will not regret it, if you live." Mark Twain
Cheers, Pete.