I'm Feeling Good!

It's important to state that because last week I felt like crap!
So far I've spent most family occasions sitting on the couch, and when I did extend myself by venturing outside for a game of petanque or to socialise, I'd soon start feeling fatigued and have to return to the couch.

This week I've slowly been feeling better and better. I still fatigue easily but it takes more effort to get to that state. Today I manged to wrangle a unit of whole blood out of the good people at the Wellington Blood & Cancer Centre. I'd hoped for Two units but Travis (registrar, great bloke) pulled the plug on that request. You can't blame me for trying! I'm feeling really good as a result of the one unit and I'm hoping my counts will stabilise at the new higher level and get me through January in good stead.

I've spent the last week working to finish the car that's on my hoist (it's been there nearly all year) but the more things I fix, the more things I find wrong! The car was stolen and recovered and the mongrels that started to strip it before being caught have just ripped fittings out and butchered parts from one end of the car to the other. I think I have ventured up to "Pick-A-Part" (car dismantling yard) every day this week.
I'd have gone again today to grab a fuel pump housing but it's raining cats and dogs. The old housing having been mangled by someone with the mechanical aptitude of a chimp.

Still no contact from Dr Richard Isaacs, the man that will treating me, but that's not too surprising considering the time of year.
So no news on when treatment will start.

Tomorrow is new years eve. Sarah and I will spend it at my brother and sister in law's. Hopefully not entirely on the couch, but with this rain who knows?.
Then we are into 2012 and I'm going to hit the road running. I feel great, I have a new (hopefully "miracle") drug on the way and Sarah and I have made some awesome plans for the future.

Wishing you all the best for the coming year!  ...Ron

Merry Christmas :)

Gosh Christmas Eve already! Where did this year go? Spent sitting in a hospital bed me thinks.
2011 was not a good year for me, in fact probably not a good year for New Zealand or a good many other places in the world. Here's hoping 2012 will more than make up for it.

It's been nearly three weeks since I last posted. In that time I've been chemo free and relatively energetic.
Although my energy levels seem to be waning again now, and I cough a lot when I exert myself.
There's been no progress on a schedule for treatment with Adcetris. I would have thought that I would have heard from the oncologist by now and some sort of plan laid out.

I'll be making some phone calls once the holiday break is over and trying to get some answers.
My main concern is that I feel slightly symptomatic. There's a slight occasional ache in my lower pelvis where the lymph node biopsy was taken a few months back, I itch a lot, cough more and still run at least two low grade fevers every day. (sub 38C) So as you can imagine I'm very keen to start treatment.

My blood counts are OKish, haemaglobin is a little low at 104 (normal range 130-175) which would explain the lack of energy. I will have one more blood test next Wednesday and if my counts are stable then I'll have my PICC line removed from my arm. That will be good, means we can fire up the spa-pool and I can enjoy a long soak with a low alcohol beer or two. :)

I found a post from a woman who's son was treated with Adcetris following several unsuccessful chemo regimes. He is now in remission, although she hasn't given the full time frame it's still good to hear stories about other Hodgkin's Lymphoma patients who have had positive results on the drug.

I've been working in my workshop again for the first time since May. Only slowly and in short bursts but I've got a lot done on the car that's been there for most of this year. Slowly getting all the upgrades the customer requested. Luckily he is in no hurry to get it back and the longer it sat there the more things he thought of to get done.

There's now just a few plywood panels to install in the new garage, and a few electrical fittings to connect and it will be ready to be signed off by the council. My father in law has been helping us with that when he can, which is good because I can't man-handle the plywood sheets. :)
However I must say I am a lot more stable on my feet than I've been for some time. I no longer feel like I am at constant risk of falling over, So I must be building some new muscle. My weight is just a tad under 70kg, about 5-8kg under my ultimate goal weight. That won't be achieved until I'm cancer free and off the steroids.

I've set a goal of competing at the "Port Road Sealed Sprint" on Jan 22nd in the Evo and have purchased some new "Federal" brand race tyres to that end. There's been lots of talk lately about how good these tyres are, with them now being the official tyre for Targa competition. A friend of mines son Daniel has used his contacts to get me a set at a very good price, so I am looking forward to testing them on the tight Seaview road circuit. Hopefully I won't be as rusty behind the wheel as I've been at the last two events I've competed in. ;)

Well That's enough from me!
Wishing everyone a great Christmas and New Year Break and that 2012 brings all that you hope for.!  Take care ..Ron

A plan..

I received a phone call last night from my haematologist, Dr D'Souza.
He was still working and it was well after 8pm. He said that he had spoken to the private oncologist in Palmerston North and that he was keen to have me as a patient and to give the treatment in his clinic.
This would involve driving to Palmerston North once every three weeks for each of the cycles of Adcetris. Treatment would probably start in late January. This suits me just fine as it gives me a nice break over the Christmas period. Intitially we will go for 4 cycles and appraise the results before deciding on more.

Apparently the doctor orders his drugs through a company in Auckland, so he'll be in touch if they need payment up front. Something I'm fairly sure would be the case when you are importing over $80K worth.

It's been a bit of a weird week, up and down. Feeling well one day and horrible the next.
Some days I feel like I am climbing the walls.. almost like being a prisoner in my own body.
It's a mix of the steroids and the chemo. Today I'm not too bad.
I had two units of blood on Monday and that made me feel quite unsettled for a couple of days.
Sometimes the blood sparks you up straight away, other times it takes a few days to work.
It almost feels like you need to run it through your system for a while before it cleans up..  it's a strange thing.

Tomorrow I'm back into the day ward for a blood test. My counts are still a little low going by a test I had on Wednesday so we just need to see which way the counts are heading and give blood or platelets accordingly. Going by previous cycles I should start making new blood again by this weekend anyway. Then it's six weeks of no treatment and hopefully feeling pretty good!

I've got a tonne of stuff to catch up on both around the section and in the workshop, so I'm hoping my energy levels climb high enough. I've been a bit slack when it comes to going on the treadmill and stationary bike. I injured my achilles heal a few months back and I'm still limping.
Perhaps I'll make that a goal... to be a lot fitter for the new year.

..Ron

and up..

It's Friday afternoon December 2nd.
I've just completed my last session (day 8) of my third and now last cycle of Vinorelbine.
Dr D'Souza had suggested today when we spoke that I have a fourth. I declined.
I don't think the benefits are outweighing the results and I want to be well over Christmas/summer break. My blood counts were a little low today, but as I feel so good I suggested we put off a blood transfusion until after the weekend. So I'm back in first thing Monday for another two units.

That then lead us on to Brentuximab (Adcetris). He has given the hospital pharmacy the go ahead to order the drug, just four cycles for now at $20K-ish per cycle. We will then evaluate the results and decide on how many more cycles from there. Each cycle consists of a dose of 1.8mg per Kg of body weight (70kg), given once every three weeks. There's a possibility that we could run anything up to and beyond nine cycles.

He is applying to the Ministry of health for permission for the first cycle to be administered at Wellington Hospital on the grounds that if I have any sort of reaction to the drug they will be able to give me immediate treatment. Something not available in a private clinic.
Other subsequent cycles will be done by a private oncologist probably in Palmerston North, The only one in Wellington is currently unavailable. The reason for all this is that the NZ Govt won't pay for treatment associated with a privately imported drug. I won't even touch on the politics of how unfair that all seems. I'm just happy to have some progress.

Yesterday and today I have had a good amount of energy. Not a huge amount, anyone else would probably call an ambulance if they suddenly started feeling like I do right now. But it's enough to be able to walk around and by pacing myself I have managed to get a fair few errands sorted and things done. I even put a spanner to the car that's been on my hoist for the last six months.
I mildly bumped my arms a couple of times against things and lost a few chunks of skin, such is the damage that prednisone has done in thinning my skin. I think I'll make up some sort of sleeve arrangement to protect my forearms.

I suggested to Sarah that we buy a little run-around for her to drive so that she saves a few dollars on petrol and doesn't wear out the Subaru Impreza STi which is now getting up in the K's, but too good a car to move on. She agreed and we found a really nice low K's Toyota Vitz that by chance was being sold on Trademe by an old friend of mine from the motor-trade.

The only fault we could find was that the air-con wasn't working and I told him that my experience with air-con systems is that they seem to cost around $500 to fix every time they break down. He baulked at the figure and we negotiated a really good deal on the car based on him fixing the air-con at his cost through his work. (he just phoned to say my price was on the money as it needed a new part).
Net result is we got a nice little Toy for $3k under book value and fitted with new tyres and 16" alloy wheels. Bargain!

Up and Down

I had my first session of my third cycle of Vinorelbine on Friday. I have to admit that I really wasn't looking forward to it. I'd been feeling pretty crappy all last week and the thought of more poison wasn't doing much for my state of mind.

In the end it wasn't too bad, I managed to get through the weekend on some fairly low haemoglobin counts by mainly sitting on the couch and doing as little as I could. Standing up and moving around would bring on a coughing fit and tachycardia, so whenever possible I got Sarah to help me by bringing me snacks and drinks.

Monday I returned to the day ward for two units of whole blood. It's now Wednesday and it seems to have helped considerably with my energy and sense of well being. I'm about to make the 150M walk to the letterbox for the second day in a row. Something that would have been out of the question last week.

This Friday see's my last hit of chemo for the foreseeable future. I'm looking forward to slowly regaining a modicum of stamina as the days go by. Though it probably won't start till 10-14 days from Friday. I think 10 days seems to be the nadir for my blood counts.

Still no word on the Adcetris/Brentuximab drug. One of the haematologists, Travis, had a quick look at the stats and pricing on the drug and was able to confirm that it sells for $6200 per vial out of the UK.
We will need three vials per cycle and between six and nine cycles. It's going to be expensive but right now I'm more focused on just getting our hands on it. The two insurance pay outs more than covers the total, so as it's money I would never have seen had I not had cancer it's easier to mentally right off.

Well it's a fantastic day outside, time to make that walk to the letter box and then pop out for a haircut :)

...Ron

Back to normality.

I'm back home again, they discharged me on Friday afternoon. Twenty four hours after they first said I could go once the paperwork was sorted. You soon learn to take these things with a grain of salt.

I really didn't mind the three day stay anyway. Sure the food was still bad, but I was straight onto the dietitian's the minute I was admitted and they must have remembered me from the last few times because without even seeing me I was put on the "Extras" diet the moment I asked. Meaning I could pad my meals out with poached eggs, baked beans, cans of Diet Sprite and biscuits. This was the first time I've come out of hospital weighing the same as when I went in. I think I'm getting the hang of things ;)

I was back in the day ward today for blood tests and a catch-up with the Doctor.
My counts are all either good or good enough, so no need for anymore blood transfusions this week.
However they did admit they had gotten their chemo schedule out of kilter and I am now due back in this Friday rather that next as we all believed to be the case. A little annoying as I was looking forward to my blood counts climbing high enough to be able to do some work around the house.

My energy levels right now are minimal and I can't see me getting much done this week at all. Bother!

I spoke to a fellow patient in the day ward today, the sister of an old friend from my past.
She was in the chair beside me and asked if my surname was Scanlan, I said yes and she asked if I remembered her sister, which of course I did. We were friends some 30+ years ago.
She said her sister had told her to keep and eye out for me. I asked "but how did she know I had cancer?"  ... "She reads your blog" was the reply.

It's becoming quite scary the number of people I bump into, both old friends and total strangers that read this blog. To me this has become both a record of my treatment for my future reference and a way of keeping family and friends updated on my status.
Knowing that sometimes it is read by complete strangers makes me feel like I should be putting more effort into my writing skills.. Perhaps more stories of Bob or rampaging quadriplegics to entertain a wider audience?. Ultimately that may happen from time to time but for now I stick with the boring updates. :)

I got a phone call from my Income protection insurance provider today. I finally made a claim two months ago once it became obvious that I would not be returning to physical work any time soon.
A problem immediately became apparent. I believed I had insurance cover for when I was unable to earn an income. But the policy was an indemnity cover. Basically they would cover me for two years based on what I earned the year before.

Well since I've been earning less and less since being first diagnosed back in 2005, last years income was pathetic. So on paper it looked like I was going to be paid zip.
The phone call today was to tell me that because I would have been eligible to make a claim in any of the last six years they would base the pay out on my best trading year over that time.
Net result is a very nice lump sum payment that will go towards softening the blow of the cost of Adcetris when it arrives. (when ever that will be)  Full marks to Asteron Insurance for going that extra distance.

Till next time !

Back in hospital..

Over the last couple of days my energy levels had been dropping and dropping.
Not unexpected considering I'm having chemo. However yesterday I just got weaker and weaker.

By evening I found myself unable to move around without feeling faint and dizzy, or even worse I'd start coughing and become anaerobic and completely puffed.. like I'd just run 400M flat out. All this sometimes from just standing up. Not nice.

I was due in the day ward today for a blood transfusion but I knew they'd take one look at me and admit me so Sarah packed an overnight bag for me. Sure enough the nurse took my obs (vital signs) and called the doctor over immediately. He confirmed what we all knew.. I was pretty sick.. low blood pressure, tachycardic, feverish and pale.

Good news is that eight hours later and I'm feeling a lot better. I can move around again and not collapse in a screaming heap.
I should be out of here by the end of the week. I'm not complaining.. I know when I'm sick, and I'm sick. This is the best place to be. Ultimately I'll be fine, of this I'm now sure.

However in the middle of the night last night I was not so sure. I imagined that it would have been very easy to just close me eyes and slip away, that's how weak I was. Beyond fatigue.. almost absolute zero. ..Scary

End of the 2nd cycle

On Friday I had the last of my chemo for a while.
I don't know that it's done a heck of a lot for me other than help with my blood production and counts.
It will take about another week before I see the counts start to rise again, having been knocked back by the current dose, but hopefully I will have some really good numbers after a few weeks of no chemo.

Right now I'm physically unable to do much at all. I keep making the mistake of standing up and walking to some part of the house for some item or such and then almost passing out as my blood pressure drops, my heart starts racing and I become breathless. It's really not nice.

On Friday at the blood and cancer day ward it was decided that I needed two units of whole blood, this was based on a blood test that was two days old, so who knows what the real readings were like? Ultimately I was only given one unit because there was not enough time to complete two.
I have to get a blood test on Monday morning and then on Tuesday I'll get more blood. I'm betting the counts will be through the floor!

Last weekend was a real mixed bag as far as how I was feeling went. I'd had the first session of the current cycle of chemo on the Friday. I felt awful on the Saturday and decided that I would not race the next day at a hillclimb event as planned. Then on Sunday I woke early feeling really good.
So along with my brother Mark we headed off to the Wairarapa for a few hours motor-racing.

I didn't have any problems with driving the car, but walking around the pit paddock was a real effort.
The organisers were kind enough to let me run in any order I liked. That way I could get my practice and three timed runs all done as quickly as possible and get home to rest.

I used to hold the record for the event (Admiral road) until a few years back when I was pipped by just a fraction of a second by then NZ rally champion Richard Mason. I've always managed to cover the 900 metre course in the 36 second bracket. Last Sunday I was struggling to post a low 38 second time.
Ultimately I was beaten by Ryan Stevens when he managed a 37 second run. I was a little disappointed until I was reminded by both Mark and Sarah that I'm sick and in no way on form. Second place was a very good result considering my state of health.

I'm still waiting for the new drug to be imported. In fact I'm still waiting for someone to front up and take charge of getting it. Lots of talk from the doctors when I see them face to face, but it's always like ground-hog day when I see then again next time.  ..a little frustrating. I've decided it will be at least March before anything happens... we shall see.

My broken rib seems to be settling down. It no longer pops in and out as I move, cough or breath.
It's now totally painless and I can sleep on that side without feeling like there is a lump there.
It's amazing how the body can stil heal something that is broken and constantly moving.

A few people have asked me how I'm managing to cope income-wise now that I can't do any physical work. I'm lucky in that I have my wonderful wife Sarah to support me, and on the business side of things I've been able to grow the internet sales from behind my computer keyboard with very little physical effort. I've also developed some new skills in finding car parts on the internet and procuring them for my customers at prices below what is available locally. It's work I enjoy and as I'm just sitting behind my desk and not moving around too much I don't get fatigued and end up coughing all day long.


..Ron

Another Chemo day

I've been slowly improving as of late. I had to take the long view to realise it because most days I feel like crap.
However I can now see that there's been a big improvement over the last few weeks. It's one thing to say I feel like crap and have no energy because I get tired walking to the fridge. Then it's another to say I feel like crap because I got tired walking to the letter box and back. (My letter box is 150metres away up a steep gravel driveway).

Anyway yesterday I felt pretty good and today I feel even better. However I've just returned from the hospital, having had my vinorelbine palliative chemotherapy. So tomorrow and for the next two weeks I'm expecting to feel pretty "average" as my blood counts drop and then recover.

I'm still having low-grade fevers and sweats (although no true night sweats) and my skin itches like crazy. I still cough when exerting myself or when there's a change in room temperature.

Today I spoke with another of the haematology doctors and he lamented that it was a shame that Brentuximab (Adcetris) was not an option. I quickly told him that I thought it was and that I had the money to pay for it as soon as it was available internationally. He got quite excited by that and said he would follow it up immediately.
He did then mention that because it was a drug that was being imported privately that it would need to be administered in a private clinic such as the one he ran. Hey if it gets me treated and healthy I don't care who clips their ticket along the way.

Apparently M.D Anderson clinic in Texas charges US$40K just for pretreatment tests. Now that I would object to! So I won't be rushing off to the States any time soon for treatment.

Next hit of vinorelbine is Friday next week. After that? who knows? Hopefully there will be word on the Brentuximab.

Blood counts still climbing.

The haematology nurse just phoned to tell me the results of today's blood test. They show that my counts are still improving.

Platelets are up to 37 from 11 two weeks ago. (normal range 150-400)
Haemoglobin is 124 up from less than 100 (normal 130-175)
White cells are now 3.8 up from 0.63 (normal range 4-11)
Neutrophils are now 1.5 up from 0.1 (normal range 1.9-7.5)

My platelet count will never be back in the normal range, It's hovered down around 30-45 for years now.
It's a legacy of the stem cell transplant and poor marrow.

However the other counts are rocketing up in leaps and bounds percentage-wise.
The white cells and neutrophils mean I have a better first line defence against infection and the higher haemoglobin equates to more energy as more oxygen is able to be carried to the muscles.

I still have this really debilitating cough though, kinda hoped it would go with the chemo.
Perhaps it will when I finally get on the Adcetris. When ever that will be.

I guess I'll know more after my appointment next Friday.

..Ron

We have new blood!

Finally after more than 6 months of blood transfusions I have started producing my own blood faster than it gets used up. My blood counts today are higher than they have been in ages, and all done under their own steam.

Last Wednesday I went into the Blood & Cancer day ward and was given a unit of platelets and two units of whole blood.
I'd been making no new blood of my own due to both the Hodgkin's infiltration of my bone marrow and the myelosuppressive (suppresses bone marrow and therefore production of blood)  nature of the chemotherapy.
The plan was to give me a big enough top up to get me through till today, a period of seven days, so I could visit family in Christchurch.

The doctors did not want me to travel as my neutrophil count was almost zero, at 0.1 This left me with almost no protection from infection and at risk of neutropenic sepsis and fever.
They wrote me a covering letter to give to the doctors at Christchurch hospital outlining my illness's and stating that I was traveling against their advice. They were concerned I'd pick up a rogue bug on the airplane and have no defence against it.

Well personally I've never been one for shying away from doing something just because it might kill me. Heck if I didn't do anything for fear of dying, I might as well not get off the couch.
So as you can imagine I am very, very pleased to find out that not only was I not at great risk while visiting my sister and family, I was actually producing new blood cells as I sat on said couch and watched New Zealand win the rugby world cup! Awesome :)

I did of course take precautions while away. I wore a surgical mask on the plane and avoided possible sources of infection such as raw food and contact with pets.

I next have chemo on Friday 4th November so I will have a good chance to raise my blood counts further and build up a bit of a reserve before they are wiped out again. However I'm sure that they will then return even stronger again after that.

Cheers!   ...Ron

Haematomas and more of the same.

I was kind of hoping that this palliative chemo would make an instant improvement in my level of comfort. So far I feel exactly the same, perhaps it's way too soon and perhaps I expect too much based on previous experiences with higher strength regimes.

I had a session of vinorelbine last Friday and another today.
I am still suffering from the low grade fevers, constant itch and fatigue. Perhaps things will improve once this second dose does it's job.

My haemoglobin and platelets are low so they gave me two units of whole blood today as well, That should perk me up a little over the weekend.
Sarah and I are planning a few days away next week so I'll be given a little extra blood mid-week to see me through to the week after. There is no chemo next week.

Last Thursday was the day they inserted the PICC line. It didn't go well.
I should have noticed that my right bicep, where the line was fitted, was very tight and swollen.
I didn't really think about it until the blood started pouring down my arm as I drove away from the hospital.
The line had leaked where it goes into the vein, filling the surrounding tissue with blood (a haematoma) and then ultimately pushing it's way out through the point where the line enters the arm.

I should have taken a picture it was a huge mess!
I returned to the day ward just as the team were leaving for the day. I became the centre of attention for a while, the nurses fussing over me, changing the dressing, only to have it leak again. Then one of the doctors suggested I be given another unit of platelets to help stop the bleeding. I didn't get home till quite late.

Today was much the same time-wise. Arrived at 8:30am and departed at 3:30pm. It all makes for a very long and tiring day.

I'm hoping for a relaxed weekend.. fingers crossed.

..Ron

Treatment plan for next week and the dangers of paracetamol

I orginally wrote this in the previous post but it made the whole thing just way too long. Even I fell asleep trying to read it all in one sitting.  ;)  So I've split the whole thing into two for those of use that are easily bored  :)

The treatment plan....
I have a blood test on Tuesday next week, Wednesday I will get blood and platelets if needed.
Thursday I get the PICC line fitted, and then Friday I start chemotherapy.
It's not Adcetris at this point in time, but rather a palliative drug to tide me over, remove the lymphoma from my bone marrow and improve my quality of life in the short term.

Adcetris should be on the market in a couple of months. My life insurance has paid out so I have the money to pay for it, an estimated $120K for the full treatment. But this is now all in the future and won't happen until I relapse or the current treatment is unsuccessful.

I was about to sign off when I realised I hadn't mentioned my downward spiral with paracetamol.
I've been under the care of a diabetes nurse for a couple of weeks now as we try to come to some sort of equilibrium with regards to my blood sugar counts and my medication. All a legacy of prolonged prednisone use. She phoned me to say she had reviewed my last blood test and that my liver function was very bad.

She felt that it must be one of the diabetes drugs and that I should stop taking Metformin immediately.
I said that it was more likely because I was almost living on panadol to keep my fevers at bay.
I'm aware that you should not take more than eight tablets in 24 hours and I thought I was on top of that. However when I actually kept a record of what I took It was more like 10-12 tablets.

The more I took the sicker I was getting and the higher the fevers were between doses.
So I went cold turkey for a day and started only taking one tablet at a time and stretching the gap out as long as I could, running a low grade fever before finally taking one.

In the last 24 hours I've taken just three tablets and feel great. It just goes to show you that even the most medically self aware can get caught out by not keeping records of just what they are taking and how often. Lesson learnt! :(

Re-arranging the deck chairs on the Titanic...

I went to see my GP, Kyra Jones, on Friday, with a couple of niggling things..  well actually if I was a normal, well specimen of a human being I guess they might be considered quite serious I guess. But they are still not the sort of things you can get fixed in the cancer day ward while getting chemo.

You see I have a hole in the skin on my elbow that just won't heal. When I was hospital in June I got them to biopsy it and sew it up. At that stage it was just a 3mm hole in my skin. A perfect circle, like a miniature well down into the flesh on my arm. It wasn't infected or anything. Just a spot where no skin wanted to grow.

When I took the dressing off 5 days after the biopsy I discovered much to my dismay that I now had a 10mm hole in my arm where no skin appeared to want to grow. And just to rub salt into the proverbial wound, the biopsy was inconclusive!

My GP took a pic of it and sent it off to the plastic surgeon's for his opinion. Personally I think it's a spider bite, probably White Tail.

The other problem is that I was in terrible pain from my ribs. I'd mentioned to my haematologist when I saw him last that I had pain in my right flank and that I thought I'd pulled or torn something from coughing so hard. He had a quick look but to be honest you don't go to a haematologist for rib pain.
It's like going to a neurosurgeon for an in grown toe-nail.

Then last Monday while in the middle of a coughing fit.. "POP!" and an excruciating pain hit me in the right side lower flank. Like I'd been whacked with a hammer in the ribs.
After that, when ever I moved it would pop in and out like one of those children's clicker toys. Not Fun and much pain!!

So Kyra looked at that too. She listened to my chest and had a poke around at each of my ribs.
In response to each press I'd say "yeah that hurts a little, ..that's more painful.." 
Then she found the culprit..  "Oooooh! F@&K!!!, yeah that's it" I said as the rib popped in and then out again upon being pressed.

"Yup, that's broken" she said , "Ya think!!" I replied, as the colour slowly drained from my face.

Codeine is a wonderful drug. It seems to have no side effects on me at all but is capable of completely removing the pain and discomfort from having a rib that pops in and out at whim.

There's no treatment for it. ..could take months. I'll even have to put motorsport on hold. Something that even a bone marrow transplant or high dose chemo has previously never managed to do.

You see I think I damaged that rib in the Great Dunlop Targa crash of 2009. The side of the race seat had dug into my ribs when we came to a sudden stop after crashing over a cliff and landing in a paddock below. It was the only injury I sustained, my ribs hurt for two months afterwards but there was no click-clack, so was probably just cracked. It just took two years worth of bone brittling prednisone and a few big coughs to finish it off.

If I were to race and have even a small "off" the rib could puncture my lung, and with my blood counts and lung problems I doubt I'd survive very long. However I will talk to my doctors at the Blood & Cancer centre next week and see if they will organise an X-ray just so we know exactly what we are dealing with.

..Ron

A good day.

Wow! Today is a great day! I woke feeling really good. There's a knock at the door and a courier hands me a package, in it is a stack of this month's NZV8 Magazine copies and a hand written note from the editor Todd Wylie, a long time friend of mine. In this month's editorial he has written a glowing profile on me and my ongoing battle with cancer. Apparently I'm a really nice guy! Sarah cracked up when she read that bit. Apparently living with me will dispel that myth.

Then I get a call from my buddy Glen Clemas and he asks me to review a video he's put together. The video as it turns out is a compilation of motorsport footage of me. He thought it would help keep me motivated, and it will.  http://youtu.be/XiKVWzRWuJ0



In reality I don't think it's so much that I'm a nice guy, more that I am surrounded by really sincere and caring friends who I cherish and respect.
I guess it all flows from there. Thanks heaps guys!! ..Ron Scanlan

We have a plan !

Sarah and I just got back from a long meeting with Dr D'Souza.

First thing discussed was that Adcetris is not available outside the USA at this point in time.
However the drug company is looking at releasing it to market in late October. (ish)

So in the meantime we are going to start palliative chemo with the drug Vinorelbine as soon as next week, depending on when the day clinic can squeeze me in. I'll also be fitted with a PICC ("pick") line in my arm possibly first thing Monday.

PICC lines are great,  I had one fitted when I had my stem cell transplant. No more failed cannula insertions and I can have blood samples taken and blood given all through the same line.



He decided to use just the one chemotherapy agent at this point in time is to avoid the possibility of further lung damage. If lung damage occurs we can change to another drug, probably Gemcitabine, or add others to the mix.

The hope is to gain a reasonably long period of remission with the knowledge that should/when I relapse we have Adcetris to fall back on. It having been released worldwide in the interim.

So roll on next week and let the treatment begin! I'm looking forward to waking up one morning and having no itch! Isn't it funny what you focus on.. I've been scratching non stop like a mad man for 18 months now. To have it disappear will be cause for great celebration, despite all the negativity associated with cause.

More posts as things come together..   ..Ron

Compassionate Funding declined.

My haematologist just phoned and postponed my meeting with him until next week.
The reason being that the drug company no longer will supply Adcetris on compassionate grounds.

Next step is for the medical panel to meet next Wednesday and put an application for exceptional case funding to Pharmac. Word on that should be back late next week or early the following week.

We are not too hopeful as the drug is so expensive, however they may ask for funding for only half a course to reduce costs and increase the chance of approval.

I made sure he understood that Sarah and I believe this drug to be my best hope and that if all else fails we are prepared to fund it ourselves.

Next Thursday we will touch base for an update and I'll be given another couple of units of whole blood as I seem to be slowly winding down energy-wise.

I've been flat out using what energy I do have to finish jobs around the house and workshop.
On Tuesday I did a wheel alignment and suspension setup on a Ferrari F430 Challenge race car.

I had a volunteer doing all the spanner work for me and I just pointed at things and told him what to do :)  (A big thank you to Glen Clemas for all his help.)


Today I'm running power cables and conduit out to the new garage. Although I might wait for the weekend to secure all the conduit, as I will have someone to hold the ladder.  :)

...Ron

Life in limbo

Sarah and I met with the haematologist last thursday. We were hoping for some news.
There was none. No word from the drug company at all.

We are hoping that they will supply the drug on compassionate grounds and include me in the clinical trial. My Doctor seemed less positive that this would be the outcome than he was earlier the week before.
There are other avenues.. A process whereby a team of experts on a special panel, apply to pharmac for funding (I feel this to be unlikely to be approved due to the high cost).
Another option may be to pay for the drug ourselves from my life insurance.

I have another meeting with haematology this Thursday for an update.

I've been working with a diabetes nurse to try and rein in my high blood sugar counts that are a direct result of the prednisone. We have been playing around with different  balances of the drugs metformin and gliclazide, and seem to have found a happy balance after a few failures.
Net result is I am now putting on weight slowly and have more energy.

For some reason my blood counts have also remained a lot more stable and are not dropping every week like they were. This means that although I'm still quite weak and fatigue with very little exertion, I can do a lot more than I could in previous months. I'm able to go for long walks and perform my day to day tasks without too much discomfort. I can't see me being able to work on cars again for quite some time though.

I had a thoroughly enjoyable day of motor racing last Sunday 4th at the Shelly Bay sprint.
I had made it a goal to be there a couple of months back when I was stuck in a hospital bed.
Thanks to a small team of helpers I was able to get into the car and drive over the course fairly briskly.
I did give myself a bit of a fright on the practice run as I was so unused to the power and speed.

I did two more runs after that, each one faster, before retiring for the day and going home to rest with both myself and the car still intact.
The end result was fourth over-all and 2nd in class. Not bad for a guy that's been driving a hospital bed for most of the last three months!  :)

A big "Thank You" goes out to my team of helpers and crew, John Raptis, Mark Scanlan, Jacob Boyd and of course my wife Sarah who supports me in every aspect of my life.

I'll post some video footage up as soon as I find the time to edit it. (We had three cameras mounted on the car for my last run).

..Ron

A small team of helpers was required to help me get in and out of the car
and keep things running smoothly

Lining up ready to run (about to do a "burn out" to warm the tyres)

On the start line with the clock counting down.

Repost of someone elses experience with Adcetris: "My SGN35 experience"

I found this blog post from a man that was accepted on the SGN35 (aka Adcetris, Brentuximab) clinical trial. It's pretty much the only first hand account of what the drug is capable of that I've found.

My husbands long journey with Hodgkin's: My SGN35 experience

Lines.. Both canulation and those to be read between.

I'm still here, stuck in this bed. I don't mind so much anymore, home isn't the best place for me anyway.
I've taken advantage of every opportunity or service on offer. My meals are now back to where they were last time I was here for a long stay. I can order lots of extras from the kitchen. However experience had taught me to avoid the hot-dogs, chips and chicken nuggets. I dog would probably send them back.

Tomorrow I am in surgery to have two wisdom teeth removed. This would have cost me a small fortune privately but when in hospital it's free. I just told the doctors that I would be at risk of infection if left in and that I'd need extra blood and platelets for the extraction. They agreed and presto I was booked!

I had a terrible, terrible 24 hours over the period of monday night/tuesday. The doctors had commented that my fevers were resolved and that I must have had an infection that was now gone. I said "well... nooo.. lets just say I've had a couple of convenient headaches whereby I've asked for panadol". They said they needed to know if I was still developing fevers so they could see if the medication worked.

My response to them was that after 18 months of personally monitoring my temperature I could assure them that I would still be running massive fevers if it were not for the fact that I now know the warning signs (once I get to 37C+ will always run a full fever if left unchecked). Apparently my word was not good enough and they asked that I take no panadol for 48 hours. I said they could have 24 hours max as when I run a fever I get very sick with rigor, chills and coughing.

Sure enough I ran three full fevers in that 24 hour period.
During that time my IV cannula stopped working for the third time in three days.
From experience the chances of getting a new line into me while febrile is slim in the extreme.
But still they tried. After-all I have those critical IV antibiotics to be infused (the ones to kill the bugs that are supposed to be giving me the fevers ;)

Two doctors and one senior theatre nurse all tried and failed. There were six failures over a period of nine hours. To say I was over it would be an understatement! The stress of running a fever and having a continuous line of "experts" pushing a bloody great butterfly needle into your arms in the hunt for a vein just wore me out completely.
Finally one doctor thought he had it sorted. He managed to half insert the cannula into a vein in my left arm that I know to be heavily scarred and I told him this.

He suggested that the reason it would only go in half way was because it was against a valve. I said scaring. As soon as the nurse tried to flush it with saline 20 minutes later  it hurt like hell and would not flow. I had to tell her twice to stop pushing. Why is it that the younger they are the less they are inclined to believe the patient might actually know something? I told her, once she had stopped trying to blow my elbow up like a balloon, to draw back on the syringe. It wouldn't flow that way either. It was blocked.
Another failure. Two hours later the same Doctor re-appeared and had his last attempt this time under my direction. (I pointed him to the best vein and suggested that maybe hot water in a glove held against the arm would also help. This is std practice on the cancer day ward)

There's no word on my treatment plan as yet, even though I have asked. This actually gives me some hope of getting the new drug. I don't want to get my or anyone else's hopes up because there's no firm reason to support my hunch but I do read body language very well and I've seen and heard enough to realise that there's something happening behind the scenes. They too probably don't want to get my hopes up and are probably working hard in that direction but with no firm answer. I hope they succeed in obtaining it.

I checked the proposed price of the drug online yesterday... around NZ$120,000 for the full treatment, ouch!!

How sick am I ? - They found a new drug!

I've been here just over a week now, I think I've racked up about eight weeks in hospital in the last three months. I can't even call it a second home.. it's more like my first home.

The constant monitoring of my blood pressure, saturation and heart rate, the bad food, the lack of privacy.. it has all become something I have gotten used to.

Two days ago I awoke to a massive fever, I barely had the energy to press the nurse call button. She arrived and asked what I needed. I said I'd like her to take my "obs" as I was febrile. She hooked me up to the machine that measures heart rate, oxygen saturation and blood pressure. She then reaches up to the wall above my bed and presses the "Emergency" button.

Within seconds I am surrounded by five doctors and four nurses.
My blood pressure was dangerously low and my heart rate was 145bpm.
Apparently when you run a high fever your blood vessels dilate and therefore your blood pressure drops.

Other than the fever I felt OK, I certainly didn't feel so ill that every medical practitioner on the 5th floor should be standing in my cubicle asking me questions and prodding me. Two litres of saline fixed the problem and I'm happy to say that as of tonight my stats are very good and no longer causing concern.

My sister Denise pointed out something I'd never considered.. She said to me "your problem is you don't know how sick you are" and I guess she's right. I've been here a week and other than someone who bumped the emergency button in the shower I'm the only person who has required such attention. This is the cancer ward, everyone here is very sick in one way or another.  But if I'm so sick how come I can pop down to the four square for a bottle of lemonade?

And that's the problem.. I just do not know how sick I am. I know I'm certainly not as sick as some of those around me, and for that I am grateful.

Last night I could not sleep, and when I did, I had crazy, surreal dreams. Then to top it off at 4am I had a night sweat. My first in the two and a half years since the bone marrow transplant.
I lay there in my bed soaked to the skin in drenching sweat, my bed clothes soaking wet. I thought to myself.. well this is it, I'm back into full blown Hodgkins Lymphoma.
Things only get worse from here. That bucket list is not going to get ticked off if I'm too sick to get out of hospital. I can't live from one blood transfusion to another.

I knew Dr D'Souza was planning on giving me the results of some of the tests today and I knew it was going to be bad. It was four thirty before he arrived. Sarah arrived shortly after and she was able to hear the news he had for us.

The lymphoma has invaded my bone marrow, however there is little sign of it elsewhere in my chest and abdomen. He explained that this was not entirely a bad thing as it meant that any treatment I underwent would have less to work against and that I could expect my blood production to increase, and therefore my quality of life. The lymphoma tends to hog the space in the bone, leaving little room for the marrow.
Once gone, the marrow takes back the space and blood production improves.

Then came the bombshell.. He said that there was a new drug that had only last week been fast-track approved by the American FDA, that it showed promise and he was going to ask the drug company if they would supply it on compassionate grounds. The drug "Adcetris"' is the first new treatment for Hodgkins Lymphoma in nearly 35 years and it showed promising results.

It was only after he had gone and I'd done some research that I realised just how promising it might be.

Suddenly there's a light back at the end of this tunnel. The battle now will be trying to get hold of some Adcetris.

Meanwhile I'm still on high dose iv antibiotics, antivirals and as of today they started me on an iv anti-fungal (something I had earlier suggested) just to be sure I have no other nasties growing that could kill me once treatment is started.

..Ron

More tests..

I probably should have mentioned that I'm now up on the 5th floor in the oncology ward. This time the short stay unit lived up to it's name.

Today I had hi-res CT scan of my chest taken and from that the doctors hope to work out just what is causing my cough and lung problems. Is it BOOP or Lymphoma or pneumonia?. I do think it's odd the sometimes my breathing feels completely clear. You wouldn't expect that if it were a degenerative type problem I would have thought. Anyway I should know by later in the week.

Thursday I have yet another bronchoscopy scheduled, where they put a camera up my nose and down inside my lungs and take a look around. Then following that they are going to do another pleural aspiration, where they insert a needle into my back and drain fluid from my chest cavity.

I got outside today for some fresh air and exercise. I walked for about 600M, which is a long way for me these days. Probably the most I've done in 3 months. Not a bad effort but I'm truly exhausted now. Will spend the rest of the day laying on my bed and relaxing/recovering.

...Ron

Stuck here for a wee while yet..

Well it's now Monday lunch time and I'm still stuck to this hospital bed and I'll be here for a few more days yet.

Initially I was quite frustrated and angry that they had kept me in because I ran a fever on the night I was getting my blood transfusion. They have pumped me full of antibiotics and denied me panadol unless I run a fever. Where as if I take it before my temperature rises, a fever never eventuates.
However I finally got to talk to my haematologist this morning and he has explained his concerns.

He doesn't want to risk missing an opportunist infection, as if I am to have any chemo them I would be defenceless against it and that could prove fatal.
He also agreed that the fevers could just be a symptom of the Hodgkins Lymphoma.
To try and get a better idea he has scheduled a bone marrow biopsy, CT scan and possibly another bronchoscopy for this week. So I'll be here for a few more days yet.

I've had to phone a number of customers and explain my predicament and all have been fully supportive. Still, I hate letting people down.


Ultimately I don't mind being here if it means we find some answers to my tachycardia, anemia, fever etc.. If it means a better quality of life, even short term, it's well worth it.
Mind you so far no one has been able to link any of the symptoms to one thing. That's frustrating. If it could be proved, say for instance, that my bone marrow was compromised by Lymphoma and as a result was working poorly at making red blood cells (and platelets) causing the anemia and the anemia caused the tachycardia, then I would at least have an answer and know that maybe chemotherapy would buy me some quality of life for a period of time.

However there are some serious risks of fatal infections when you have an immune system as weak as mine.

Since starting this posting I have had a bone marrow biopsy. My fourth since I started treatment over 5 years ago. Trust me it doesn't get any easier. I would call it a very intense discomfort. ! For those of you not familiar with the procedure, a device that basically looks like a cork screw but has a hollow tube rather than a spiral, is twisted and pushed into your pelvis and takes a core sample of bone, and blood/marrow.
It's pretty yukky.!!

 I'll post again once the results come back.

Xylophone in the rain.

Saw the strangest thing yesterday while driving to hospital.
Walking along in the rain, was a young man of about 19. Cradled in one arm was a wooden xylophone. In his other hand he held a single mallet which he was using to knock out what I can only guess was some sort of melody.

He seemed incredibly happy, despite the weather. The simplicity of this guy was admirable.
No i-pod for him. He bashed out his own tunes in the rain on one of the coldest days of the year and still managed a beaming smile a mile wide. What are we missing?


I had a crappy night's sleep last night, I ran a high fever all night and I'm still trying to break it now. I'm soaked in sweat. The young female doctor who's been over-seeing me now tells me that because of the fever they want to run some tests and another X-ray.
I pointed out that I had an x-ray yesterday and I run a fever every day. That didn't seem to register with her, so now I'm here for at least the rest of the day getting tests done.

You never know I could have relapsed pneumonia, it doesn't hurt to look I guess.
Well too hot and bothered to write any more.. Think I'll stare at the ceiling for a while and try to cool off.

Bad news, Good news and another night in Gepetto's workshop.

Aaaah bugger!
We got the news today. The biopsy showed lymphoma.
That means relapse and a new stage to the battle.

To me it's just another hurdle life has thrown up to get around or bulldoze through.

My haematologist, Dr D'Souza broke the news to Sarah and I this afternoon.
I immediately went into problem solving mode and to be honest, other than saying "bugger" to myself it hardly registered. Is that denial? Or is it just because I'm so focused on over-coming obstacles? Either way the result is the same.. crank up the fighting mode and make lots more plans for the future. I'll  also be drawing up a new "bucket list" as I've done all the things on the last one.

Fatigue has been an issue for about the last week as my blood counts have again plummeted. (At least we now know why).
Last week I had enough energy to install all the plumbing to a water tank that we have attached to the new garage. (The idea there is that it gives us an emergency gravity fed 1000 litres of water and a supply of water for Sarah's vege garden that won't drain the main tank.)

Today I was the most fatigued I've ever been outside of a hospital. The act of standing up and walking just a few metres had my heart racing and my breathing unable to keep up. Much the same as if anyone else had just done a 100m Olympic sprint. Hands on knees and completely exhausted. (reminds me.. must put my XAUSTD plate on the work van)

I said to Sarah on our way into hospital that I'd probably be admitted overnight as soon as Dr D'Souza took one look at me. Sure enough here I am hooked up to a pump and getting four units of whole blood. I think it was Dr D'Souza's present to me in light of having to break the bad news today. Even the nurses were surprised at four units. I usually get two. Tomorrow and for the next ten days or so I will be feeling supercharged and doing as much as I can while it lasts!

I'm in the so-called "short stay unit". I don't know why they call it that because the last time I was in this dead-end, bed-lined corridor, I was here for a week!
I jokingly said to Sarah that I was having another night in Gepetto's workshop.
Referring to the blog post I wrote in Nov 2009, the last time I was in this ward.
They wheeled me and what are odds?... straight to the same bed as last time!
So far so good, there's been no strange woodworking sounding noises from the bed diagonally opposite.

Well must go and try to sleep. I say "try" as it will take around ten hours to be transfused with four units.That means they should finish around 5am. Non-stop monitoring of my vitals, "Obs" as they call it, will make for a poor nights sleep.. but hey I'm gonna feel great this weekend! I can sense a night out for a Malaysian meal is on the cards!!

...Ron

And still no news..

I really would have thought that we would have heard what the histology results were by now.
However there's been no news. I'm seeing my haematologist on Thursday, so hopefully I'll find out then.

My blood counts must be at an all time low as I have no energy at all and even moving around the house is becoming an issue.
I had a blood test yesterday, so perhaps I'll get a call next week for a transfusion..

Will post when I get news..

..Ron

No news.. Invigorated

I saw my haematologist yesterday. Sarah came along with me.
We were expecting the histology results from my biopsy. They weren't back yet.
So I it's another week in limbo.. but to be honest I've already decided it will be good news, so I'm not stressing. Denial is a wonderful tool in these situations!

Invigorate definition, to give vigor to; fill with life and energy; energize.
Today was interesting..
I woke up feeling supercharged. I drew up a list of things I'd like to complete, people to visit etc and ploughed through it. It was great catching up with friends and customers, some I hadn't seen in months. I'm sure some of them were quite surpised to see me up and about so soon.
Earlier this week I was feeling quite down and frustrated at my lack of progress.
I think the word Invigorated best discribes how I'm feeling right now.

I'm thinking it could well be attributed to the huge reduction in the antibiotic dose that I have been on these last nine weeks. I reminded Dr D'Souza yesterday how long it had been since I started on the high dose antibiotics to fight the nocardia infection and that no one had been in touch to advise me when to reduce or to write me a new script as I was about to run out of pills.

He phoned the infectious diseases Doctor, Prof Tim Blackmore and between the two of them came to the conclusion that in light of my constantly diminishing blood counts perhaps reducing from 4 tablets, 3x a day down to 2 tablets twice a day would be a good thing. That's a huge reduction, No wonder I feel so good today!

I'm also thinking I under-estimated just how much the surgery would knock me around. I mean really..
the doctors were concerned I wasn't up to having the surgery, I insisted I was. It would have set even a healthy person back, let alone one who's been through what I have in the last three months! I expect too much of myself. But perhaps that's a good thing? It's what drives me.

On a completely different topic...
I've just landed an enormous shipment of silicone turbo charger hose and have been flat out designing new logos and marketing strategies. It's all very exciting for me. I've had the hoses built to my specs and I firmly believe that I now have the best product available off the shelf in New Zealand.

Now I just have to find the space to store it all !!  The mezzanine above my workshop is already bulging at the seams with my normal stock range, and I'm not yet strong enough to be lifting boxes (Nearly 1/2 tonne of new stock)

Fun, fun!   ..Ron

Back Home and pleased to be itchy.

Wow, I never dreamed I'd be back home so soon after surgery.
The surgical team came and visited me yesterday and said they would like to give me another unit of platelets just to make sure I didn't have any problems with the wound bleeding, Then I could go home.
Then one of them said that Dr D'Souza (my haematologist) had said I could have another unit of packed red cells if I wanted it. But I'd then have to stay the night. The choice was easy, I need all the blood I can get! Plus the energy that it gives me is amazing, it leaves me feeling completely well.

So once the platelets and red cells had been administered and the two cannula's removed from my arms..
..Oh nearly forgot.. My skin is so thin from the prednisone that when the nurse pulled the sticky tape off my right wrist a small area of the top layer of skin pulled off instead!!  She was so apologetic, it bleed a bit but really I do worse just banging into things myself.
I digress.. So once all was removed I settled in for the night, watched a movie on my laptop then took 1/2 a sleeping pill before falling soundly asleep.

Then at around midnight I was woken by a nurse and told I had to pack up all my stuff as I was being moved to another ward because they wanted my bed. To say I was unimpressed would be an understatement. I said something along the lines of "you have to be @#*&i$G joking!!" or words to that effect. But she wasn't of course and I had to pack up all my gear and wait for an orderly to wheel me down into the bowels of the hospital where a temporary ward had been set up to take on the overflow of patients.

I have to admit, once settled into a fresh bed it wasn't all that bad. One thing that did surprise me was that the nurse that was looking after the five or so patients in the open ward, couldn't actually tell me where I was. I had asked her for instructions on getting there to pass onto Sarah so I could be picked up in the morning. I've said before that the new hospital is a maze of corridors with thousands of rooms, offices and theatres etc. This was was reinforced even more this morning as Sarah and I blindly wandered around looking for doors we could open and hopefully reach the outside world.

Before I left I was once more visited by the team that had performed my biopsy surgery. They were all beaming smiles and very happy, so that's good. I've been in the situation of being given really bad news before by doctors and you can tell by their body language as soon as they enter the room that things aren't good. Today was not like that. They told me I could shower with the dressing on and that after around 5-7 days to just peel it off. I'll wait as long as I can because I heal very slowly.

I got a bit worried this morning.. I didn't feel itchy. I've had an insane itch for the last year and my biggest concern was that it was caused by Hodgkins Lymphoma as it's a known B-symptom.
I have had no other symptoms of lymphoma so that has always been reassuring and I've gone along with the idea/hope that the itch is diabetes or prednisone induced. Of course if I were to stop itching after the enlarged lymph node was removed that would mean lymphoma. So as you can imagine, when I started to itch like mad just a few hours ago I was very pleased.!

I have an appointment with the haematologist on thursday this week whereby I shall ask if we can either reduce or change the antibiotic I am on for the nocardia infection. The antibiotic (Co-Trimoxazole) is playing havoc with my blood counts, which is the primary cause of my fatigue which ultimately slows my recovery. If I felt the way I do today every day I'd be running in the hills in no time! With low blood counts I can barely get off the couch.

I'll update after the haematology appointment.  ....

Post Surgery.

Surgery today went extremely well.
I woke in the recovery ward and thought for a moment that they hadn't done the surgery.

I have no pain and can move about freely. I can even cough without any noticeable discomfort.

Even better news was that the surgeon dropped by later in the day and said everything had gone very well and that the node she removed did not look like what she would expect from lymphoma. Although it will be two weeks before we get the all clear from the histology report. I'm more than mildly excited by this news.

I'm not expecting to be here for very long, maybe a couple of days.

That's less than the "best case" scenario I'd been planning for. Recovery should be just a week or so provided there's no infection or bleeding.

My other good news was that they still had me loaded in the system as having a high energy/high protein diet, so I've been getting all the goodies delivered to me as if I'd never been away and I didn't have to wait four days for the dietitian to authorise it.

Sarah and I, are as you can imagine, are very, very excited at the strong possibility that I am still free from cancer 2 1/2 years down the track. Roll on the magic five years when my chances of relapse are as good as anyone else developing the disease in the first place.

Now on to beat this darn BOOP and reclaim a normal life!

A slight Inconvenience...

Imagine You are in the following situation..

You are laying in a hospital bed, blood is being pumped into you via tubes that are attached to a line that's been inserted into a vein in your wrist. It's the night before major abdominal surgery to remove an enlarged and possibly cancerous lymph node from your pelvis. You have a resting heart rate of 115, Your blood pressure is low and you can't stand up too quickly for fear of passing out.

Your blood counts are also extremely low and even small amounts of exertion leave you puffing and wheezing. Occasionally you break into a choking cough that lasts for several minutes. A legacy of severe lung damage and on-going pneumonia. The coughing fit leaves you completely exhausted and unable breath let alone speak.
As you lay there you realise you're feeling cold and begin to shiver as the regular evening fever starts to build. None of your illnesses are ultimately curable.

What would be going through your head?

A: My life sucks! What have I done to deserve this?

B: I'm packing myself! I might die on the operating table due to complications from my pneumonia!

C: Oh man I am so sick! I just want to curl up in ball and make the world go away.

D:  Think to yourself about just how much of an inconvenience all this is and how you don't really have time for this right now as it's getting in the way of both your work and all the cool stuff you have planned to do.

E: Open your laptop and write your blog.

If you answered D and or E, Then like me, you have either some sort of dis-associative psychological condition or you are just "Over it!"

A,B or C and you are probably the guy in the bed next to me.

I've gotten to the point where it's just "same shit, different day".
I really do consider all of this to be a slight inconvenience and once sorted I'll be straight back into my motorsport projects, working around the house and section, bush walking and enjoying quality time with my wife and friends.

Perhaps I am in denial. I certainly don't have any argument with that. But isn't it the best way to be? No stress, no worries, just forward thinking and setting goals.

This perspective is not new to me, but the conscious realisation that I held it is.
It was while sitting in a hospital bed, in just this situation, but much, much more ill than I am now that the whole concept of "I don't really have time for this right now, I've got stuff to do". Came to be.

If you've not been keeping up with my Blog I'll recap my current situation..

Since undergoing a stem cell transplant in early 2008 as part of my treatment for my ongoing battle with Hodgkins Lymphoma I developed a form of pneumonia whereby the lungs become blocked as a result of inflammation.
The treatment is high dose steroids.They wreck your body by aging it prematurely, they cause type2 diabetes and all that goes with that disease too.
You also put on weight in odd places and loose all muscle tone.
Worst of all is that they suppress and already weakened immune system, leaving me open to all sorts of opportunist bugs.

Twice since Dec 2009 I have also developed severe lung infections causing pneumonia, that has compounded the problem and also nearly killed me.
The last developing in May this year and coming to crisis point during Rally Wairarapa where I was helping out as Sweeper #2.

I knew I was pretty sick all weekend, but hey we had a trained St John Paramedic in the back seat with us. So what could go wrong!?
Admittedly I couldn't walk more than 20 metres without having to stop and rest from the fatigue but I could still drive the Nissan Terrano at pace over the stages and to me that's all that counted.

Monday morning I arrived at home having dropped Sarah, my wife, at her work.
I knew I was in deep trouble when I couldn't get out of the truck. I'd broken into uncontrollable shivering and was in a knotted ball, slumped back in the reclined seat.
I should have called an ambulance, I didn't. Instead I phoned my brother and he helped me to walk the short distance to the house and ultimately the couch. I swallowed two panadol and rode out the fever and rigors over the next two hours.

Now any normal sane person would have then gone to A&E or called their doctor for an urgent appointment. But then I've never claimed to be normal let alone sane!
Nooo.. I had customer orders to fill and a car in the workshop to finish. If I see a doctor now I'll be admitted to hospital on the spot and nothing will get done! ..was my logic.

I did however have enough common sense to make a booking for the very next morning with my GP. The idea being that she would take one look at me, ring the hospital and fast track me through the medical purgatory that is the waiting room at A&E.

It worked. Being an ashen faced, tachycardic, barely breathing patient and staggering into your GP's surgery will get you on the fast bus to hospital every time. But I suggest you don't make a habit of it.

Once there I was immediately put on a bed. My whole body went into shock and from that point on it's pretty much a blur for the next few days.
I had a collapsed lung, a potentially fatal pneumothorax (fluid in the chest cavity that prevents the lungs from inflating) and an equally potentially fatal blood and lung infection from a very rare bacteria that usually resides in soil called nocardia. In severe cases it attacks the heart valves and brain. It has a 50% mortality rate. I was lucky I'm told.

Tubes were inserted into my chest to drain fluid, experts were called in to deal with the hitch-hiking garden bug and much discussion was had as to how to treat me. With little consensus.

The end result was that I had a five week stay courtesy of our wonderful health system.
At the end of that stay I returned home 10 KG's lighter, barely able to walk and still suffering from most of my illness's.

Which brings me to where I am now. Back in a hospital bed awaiting surgery to remove an enlarged lymph node in my lower pelvis. This will be biopsied to ascertain whether it's lymphoma or not. If it is then treatment for my lung problems take a back seat. Any further treatment for lymphoma is palliative, meaning not curative. I've used up all my treatment options and my lung damage (from previous chemo) rules out another stem cell transplant.
So I won't be making too many plans for any retirement at age 65 if I have relapsed.

If the biopsy comes up clean then I can concentrate on working my way through the minefield of health issues associated with my lung condition, (That is after I stop partying!) get back into my life 100%, back into motorsport and ironically spend less time writing my blog.

I mean face it who needs this crap? Certainly not me.. too much to do.
End result is I'll continue to be out of circulation for a while, I'm not expecting to ever be 100% again, but whatever the final figure is I can work with it, and I intend to be their by Christmas. I may even do a little motorsport once my reflexes and strength improve.

In the mean time I'll try to ignore this slight inconvenience to my life.

...Ron

A quick one..

I was given two units of whole blood last Monday and within a couple of hours I was bouncing off the walls with energy!
My perceived fitness shot up from around 5-7% to 25-30% of what I consider normal.
I went from being a sloth that shuffled around the house and groaned every time I had to get up off the couch one day to jumping in my car and visiting customers in the motor trade and letting them know I'm still alive the next day.

The new blood is slowly being consumed though, I can feel my energy levels waning slightly each day.
I've been walking on the treadmill and the stationary bike every day. Leg strength is improving but I think it will take months and a lower doss of prednisone before I can build any muscle mass.

I managed to get that horrible cold that's going round too, so it's impossible to say how much this cough I currently have is from that or lung problems.

I'm back in hospital on Wednesday 27th for pre-op tests and more blood and platelets.. maybe just platelets.. depends on the counts.
I have my fingers crossed for a minor operation and being back home after a very short stay.

Next post will be from my hospital bed...

...Ron

Sorry for the long break..

I've been home since July 1st, having convinced the doctors that I was relatively stable, (well at least in physical terms. One should never attempt to define their own mental state ;)
I figured it was better that I was at home eating well and getting exercise than sitting in that hospital bed forever.

So two weeks have passed. I've spent that time very slowly recovering. It's a very, very slow process.
If I was at say .. 5% physical health when I came home, I'm probably now at about 7-8%
Yesterday I ventured outside for the first time and walked with the aid of a stick to the top of our driveway. If you have seen our drive you'd know just how much of an achievement that is! (150M and a steep climb at the end) I did that twice yesterday and once today. It completely exhausts me.

You wouldn't believe it but on the very first time I went on the treadmill after coming home, it went berzerk and stated running at random speeds from the 2kph I set it at to 16kph flat out and the stop button wouldn't work!!. Luckily my sister in-law, Becs, wasn't using her treadmill and I was able to use that.

 I must say though that I am very proud of myself. I pulled the broken treadmill apart and had a poke around, decided that it must be a voltage controller circuit problem, found an integrated circuit on the  board that looked a bit suspect as it had been getting hot. Ordered one off the internet at the huge cost of 5 for $4 soldered it in and presto! fixed!. I can only imagine what it would have cost to have it fixed by an electronics firm and it was just too good a machine to take to the tip. My school boy basic electronic skills still come in handy even after 35 years.

Anyway...I still cough a lot, mainly from exertion and changes in room temperature. Say walking from a hot to cold room etc. Worst thing is standing up too quickly. Not only do I get dizzy but my heart races then I get puffed and start coughing. If I take it slowly and let my blood pressure equalise by standing still for ten seconds or so then I'm OK. I can even walk for ten minutes on the treadmill without getting out of breath.

How much of my fatigue is from the illness and how much is from the anemia no one knows.
One thing that did come apparent from my five weeks in hospital is that the best specialist Doctors in the region/country also have no clear picture of exactly is wrong with me.

However the CT scan that was performed while I was in there did show that the lymph nodes in my pelvis had grown and to that end I am booked in on the 28th of this month for surgery to have a biopsy performed. This may be done laparoscopically or by a large incision across my stomach. They will decide on the operating table. Recovery time is four days if done laparoscopically or six weeks for full surgery.

From there any further treatment will be decided by the histology result of the biopsy. If it's Lymphoma then once fit enough and the surgery has healed it may be a round of radiation. That again will takes months to recover from. I'm not expecting to be back to reasonable health until late in the year. Hopefully Christmas.  If it's not cancerous, then fantastic, we have a party, and I can then concentrate on my lungs, exercise and weening off prednisone. Again hopefully by Christmas.

This coming Monday I'm in hospital for the day getting a blood transfusion.
The last time I had one was one of the worst days I've had. Luckily this time Sarah will be with me.

Bob

My room here at Wellington hospital is a two bed affair with a dividing curtain for privacy. I have the best bed, it's near the window that has a view over a concrete slab.
There's also more room to accommodate the small collection of chairs that I have managed to pilfer anytime I spot one unattended on the ward. Should I choose to I could just about seat a small group for a seminar.

Speaking of seminars (I'll digress from my story for a minute) The entire time I have been in hospital I have had a constant stream of mainly female medical students come to poke and prod me so they can see and listen to the chest of a man with a complex set of diseases compounded by pneumonia. To be honest I actually enjoy the attention, it's a welcome break from the monotony of staring at these four walls, and lets face it there's not too many men that would turn down the opportunity to have a bevy of attractive young med students running their hands over their body one after the other.

They have a standard appraisal test that they must complete in seven minutes. I'm not allowed to tell them anything about my illness so it's fair on everyone doing the test.
However my favorite bit is when each one checks my pulse and without exception they get this puzzled look on their face. I can't help but say "no you are not wrong"
A resting heart-rate of 120 throws them every time.

I've probably had around thirty of these appraisals now and I'm getting to be a bit of an expert if I may say so myself.
More than one or two of the interns really need to work on their technique. One young female pushed so hard on my stomach while looking for my liver I think she found my spine! another young Asian female intern was so timid that it was a wonder she even found my belly button let alone an enlarged spleen.

Anyway back to my room..
I've had three or four roommates (I hesitate to use the term "bedfellows") since arriving here four weeks ago. Some I have spoken to, others I have ignored, secluded behind my curtain. Then about ten days ago Bob arrived.
Bob is 82 and loves to talk. Bob is also deaf as a post.
He repeats himself constantly and feels the need to declare his status as a "born again Christian" at every opportunity.

Now that's OK, I can choose to ignore him, or I can break the boredom by having a conversation with him about how far down the hallway he is allowed to walk. Of course everything you say has to be said twice... deaf as a post.

Today I got dressed, put on my shoes and headed down to the atrium for a walk.
I stopped at the gift shop and purchased some sugar-free gummy bears before attempting the stairs to the third level. I managed them one at a time and very, very slowly but I made it. Plopping down into one of the big leather couches provided on the landing at the top. I was very proud of myself. I'm sure my legs will be hurting tomorrow.

After a five minute rest I headed back to my ward and my room. Bob was strolling the hallway outside our room in his dressing gown. He spied my little shopping bag of gummy bear treats and followed me into my cubicle. "Are you allowed out of the ward?" he asked sounding a little dejected.
"I don't ask and even if they said no I'd just walk out anyway" I replied. Bob has been told he can't venture past the end of the corridor.
Hindsight is a wonderful thing. I should have guessed beforehand what happened next.

I was sitting on my bed picking out the red gummy bears to be eaten first when Bob appeared around the curtain fully dressed in an old pair of jeans and a Paddington bear duffel coat, several sizes too small. His footwear a pair of well loved slippers.

"Will you show me how to get out of here"? he asked. Now I really wanted no part in this misguided escape attempt, but I'd lit the fire and now Bob was eager to follow my example. I talked him through the two left turns that he needed to get to the lifts.
This alone was no simple feat, it was now becoming clear that Bob is not playing with a full deck of cards and it's little wonder the nurses won't let him out of their sight.

My mind rushes ahead and an image of Bob wandering endlessly, lost in this maze of a hospital enters my head.  (I call it "Darth Vader's Death Star" so named because of the endless corridors that seem to run in all directions).
"Umm hangon Bob, I'll walk you to the lifts" I struggle to catch up to this determined geriatric escapee. On the way past the nurses station I tell one of them that I'm just taking Mr Bower for a short walk. The smirk on her face should have been another clue as to what was to follow.

We walked to the lift and I pointed out to Bob, twice, that we were at the orange lifts and on level 5. We entered the lift and I pushed the button for level 2, the atrium where the shops and cafe are located. Bob looked confused. I talked him through the sequence of pushing the buttons and how the floor numbers appeared on the sign above the doors.
He pulled a pen from his paddington coat pocket and wrote "5/2" on the back of his hand. What had I got myself into!

I decided that I'd better escort him on his freedom walk just in case. We get to the atrium and he asks where the cafe is. I point in the direction and he said he would be fine and that I could leave him now. Against my better judgment I returned to the fifth floor. There's a couch near the lifts that I often sit on and watch the goings on down on Riddiford street below. I sat down and pondered my predicament. I decided that if Bob wasn't back in five minutes I'd go looking for him.

I position myself on the couch so I can scan the people exiting the lifts. Five minutes pass and no Bob. Ten minutes pass and still no Bob. Now I'm not too proud to admit that about now I'm fair packing myself. How am I going to explain to the nursing staff that I lost Bob? it's not like he's a stuffed toy you leave on a park bench, despite the Paddington Bear coat he's a fully grown man.

I imagine the whole hospital locked down and teams of security staff hunting the maze of corridors for hapless Bob and finding him in a broom cupboard in the basement. I'm feeling pretty darn stupid about now for ever getting myself into this mess. Then just as I was about to get into one lift to start my search, Bob appears from the doors of another. Going by the beaming smile on his face, he seems pretty proud of himself and his new found freedom. Myself, I was just glad to have him back. He's snoring away contently in the bed next to me as I write this, Blissfully ignorant of the stress he put me through today.

Next time I go out I'll keep my big mouth shut for fear of inciting the whole ward to make a break for freedom.

Goodnight..