So what's new?

Just a quick update on where things are at, and a wee blurb about Rally Wairarapa.

Healthwise I seem to be pretty good. I feel relatively well and although I don't seem to have much stamina, I can get through the day without feeling too fatigued.

I'm still running a fever every night, and now find that it's some mornings too. It will happily climb to 39C+ if I were to let it. I've been experimenting with taking Ibuprofen at different times of the evening and whether one or two tablets works best.
I've had more than a few hot, cold and sweaty nights trying to find the best mix.

I've now stopped taking on any new work at my workshop and have just one exhaust system to hand build before I pull the door down next Thursday and start packing everything up.

I've had a constant flow of people coming in and telling me that they have no idea where they will go after I close the workshop.

Take the job I did this morning.. It was a little Lotus 7 race car with a bent rear diff housing. I straightened the housing in place by shrinking parts of it using heat and a lot of cold water. The owner gave me a hand as it's not a one person job. I got the housing to within 1mm of being dead straight. No other wheel alignment shop in the Wellington area offers such a service. I really need to pass on the skills and little tricks I've learned in the last 28 years otherwise they will be lost, and that would be a great shame.

Next weekend Sarah and I are off to help with the Wairarapa Rally. This will be the fifth year we have helped out. Our job is that of "Sweeper" one of two in the rally. What we do is after the last rally car has entered a stage, we follow it through (yes, driving flat out) in a four wheel drive (borrowed from my brother Mark) The truck is decked out with flashing amber lights and we are in constant radio contact with rally HQ at all times.

Once in the stage we stop and collect paperwork from any cars that have crashed out on the stage. We also look for any property damage such as broken fences etc. We collect chris-cross sheets from Marshalls along the way that show how many cars have gone past that point. If the sheet shows less cars than the marshal point before, then we know that a car may have gone off the road and be missing. It's quite an exciting job and all done at high speed on a closed road.

We do this about eight times over the two day event. The good thing about it is we get a room at the Copthorne Solway paid for by the organisers, where we can crash at the end of each day. It's kind of like having a motorsport holiday and helping out all in one.

On the Friday before the event we supervise the reconnaissance run (or "recce").
So what is recce? Basically all the rally drivers get to drive over the roads in a standard car in order to make pace notes. They will decide on how fast a corner can be taken, (giving it a rating from 1-6 is the usual way) and also the length of straight roads and any dangerous sections of road that may need extra care.

This will allow then to drive much faster over the road in competition than if they did it "blind". It's the co-drivers job to read these notes to the driver as they race through the stage. A mistake by a co-driver can be disastrous!

However the recce has to be done at the legal speed limit as the road is open to all traffic, so our job is to slow them down and coral them into shape. There can often be 30 or more cars all travelling in convoy. It takes a full day to drive all the roads, often clocking up over 500km's.

Again a lot of fun if you like driving, plus you get to see places that most people never get to see. That is if desolate tops of back country farms is your thing!



More pics from previous years below.

Wait and see

I've just returned from my appointment with Dr D'Souza. I wasn't expecting to see him, thought it would be Travis again, so I was really pleased when Alwyn entered the room.

He has yet to thoroughly go over my last CT scan with a radiologist but he said that it was reassuring to see the areas in my lungs had resolved to such an extent. He wasn't too concerned about the two 1cm lymph nodes in my upper abdomen, because, as I'd mentioned earlier, they were still of a size that could be attributed to infection etc.

I told him that I was massively improved over how I was feeling two weeks ago. I have gained a couple of kilos, my cough is reducing every day and I feel well, with a lot more energy than I had when I first emailed him with my concerns.
If it weren't for the nightly fever I'd be a lot happier. He's not too worried about that either, saying it could well be linked to whatever is causing the cough and lung problems. He did of course add that it may well be Hodgkins, but that he believes a "wait and see" attitude is the best approach right now in light of my improving health.

Apparently it's not uncommon for HL patients to appear symptomatic post transplant and that not all apparent relapses actually are. So the plan now is to wait, hope that the fevers fade away and no new symptoms develop. I'll have another CT scan in a couple of months and that then will dictate where we go from here.

He did repeat what we had discussed in the past. That if I relapsed now then my options and prognosis were very limited with only palliative care available. However if I stay well for a year or so then there are other treatment options available to me such as an allogeneic transplant (someone else's stem cells).

So this all still fits in with my plans. Close the workshop, work from home and focus on keeping fit and well. Build the new house and live life to the full. Don't compromise in any way to the cancer. If it does come along for the ride, so be it, but I'm hoping it won't be able to keep up and it will be left behind in the dust :-)

A Little white pill ... (Footnote added)

I've come a long way since this time two weeks ago.
I've learnt a few things that have and will make my life a lot easier..

Firstly I've learnt that appetite and eating are linked in a peculiar way...
The less you eat, the less you feel like eating and effect it has on your health and well-being is enormous. I started to force myself to eat much more food than I have been, and I stop for lunch regardless of how hungry I feel. The result is that I now find my appetite returning and I'm regaining lost weight at an amazing rate. (about 2kg a week). My energy levels are up and I feel much better.

Secondly I've put the fire out in the furnace. Burning away most nights at 38+C is not a good way to gain weight. It also made for fever and chills right through the night and was often accompanied by sweating and poor sleep. What I do now is I measure my temperature at around 5pm and if it's rising, which it usually is, I take one single Nurofen tablet.
The result is that my temperature stabilizes and I get through the night without so much as a single bead of sweat. Better still I'm not burning up all those calories.

Who would have thought that taking just one single Nurofen could make such a huge improvement to my quality of life. I used to dread going to bed because that's when I was the most uncomfortable and that in turn reminded me I was sick... and my mind would start to think of all the negative things.. Now I sleep like a baby, it's fantastic!

I've heard nothing from the hospital, so I have to assume the lung washing and scrapings showed nothing treatable. I have emailed the doctors and asked that we hit the floor running on Tuesday, rather than just a debrief on my status. I have so much stuff in my head I need answers for.. I really hope there is some progress made next week. I guess we shall see...

Footnote: I just got a phone call from Travis at the hospital. He said that the lung bronchoscopy had shown nothing. But that he was very curious about the fact that there had been some resolution in the lung when comparing the last two CT scans. He said that he would need to confer with Dr D'Souza when he returned on Monday, but that it was most unusual for there to be resolution (reduction) in the lung if it were Hodgkin's. Mind you he doesn't know that I'm eating about 18 apricot kernels a day and taking 6000mg of vitamin C, so there could be some benefit there.

Anyway, he's fairly certain that the next step is a lung biopsy to see for sure just what it is that I have. Won't that be fun!!! NOT!! ;-)

So more mixed messages and reason for hope.. he still thinks it's possible I have some sort of weird virus/bacterial infection... Personally I've had enough lymphoma in my time to know the symptoms... but I'm happy to hold reality at bay for a few more weeks.

CT Scan result..

If there's one thing I have learnt from all these medical procedures it has to be how to manipulate the system to my advantage.
I'm not due to see the hospital till next Tuesday, a full week away, But I know that my CT scan results are back and everyone knows the results but me.

So I booked in to see my GP (actually another doctor that was filling in for him) and got them that way. It makes for a confused read. The areas of concern in my lungs have resolved somewhat but there are two small 1cm nodes in my upper abdomen. 1cm is very small and would not usually ring any alarm bells, but with a history of lymphoma it's not a good thing to see on a CT.

Still no results from the lung samples... they will help fill in the complete picture as to whether it's infection or relapse. Personally I think it's looking more like relapse but I live in hope.

I started feeling quite unwell on Sunday and woke feeling like I was hung-over. I'd run a high fever during the night and woken to find my mouth and lips covered in ulcers. I've battened down the hatches for a week of pain. Does seem strange the way they just pop up like that.
It's very virus-like in the way it behaves. Even the GP I saw today couldn't recollect having seen such a case before. More medical curiosity stuff... meaningless in the big scheme of things I'm guessing.

I'll update if I hear anything new... have more blood tests today so maybe something will show.

Bronchoscopy.. Updated.

I just got back from hospital and I'm supposed to be under supervision for the next 12 hours due to the effects of the anesthetic given during the procedure. Apparently it can give you short term memory loss and cause you to be a risk to yourself by doing such things as frying food and forgetting etc..

However this time round I managed to over-power the anesthetic with sheer determination and I was lucid right through the procedure, which is what I wanted. However I did fall asleep for two hours in the recovery room afterwards!

I'm actually going to pop down to work for a while and do some paperwork, so I can finish the week with a clean slate, having lost one and half days already to tests.

I didn't manage to glean any sort of useful info from the doctors doing the procedure. I asked if they had seen my last CT scan, which they had, so I'm really hoping that it was clear and that is why the bronchoscopy went ahead as they looked for other causes of my cough and fever.
Reading between the lines is not a good thing and only leads me to jump to conclusions..
Hopefully I will have the results sometime early next week.

Apparently they took two scrapings from some areas of lung that showed inflammation and then took a "wash" of saline solution to see if they can grow anything (they inject it in and then suck it out). They did say at the end that they didn't see anything that was conclusive. So at least I don't have an obvious cancerous growth in there.

Anyway it's all conjecture right now.. next week will reveal all.

Till then!

OK, so I never made it to work today. I started to run a fever and felt very chilled. The dining room where I have my computers setup was awash with the mid afternoon sun. The daybed was drenched in the sun's radiant heat. I looked at the daybed, looked down at my car keys in my hand and thought "when will I next be home at this time of day, in these conditions, and in need of so much warmth?"

I curled up on the couch and slept like a baby for hours, basking in the bone warming sun's rays.

I just measured my temperature, it's 39.5C that's a full blown fever!
Is it because I have over-heated? I don't know. I feel ok, just chilled. How today's procedure with the camera in my lung could exacerbate my low grade fever I don't know. I could understand if I had an infection and we have somehow pissed it off, but I can't see how it could possibly make a Hodgkins fever worse? I'm no doctor but I've never had a fever this high unless I had an infection.

I'll monitor it closely over the next few hours and if it stays high or I start to feel unwell I'll have to call the hospital.. bugger.

I'll update later if anything exciting happens! ;-)

...Well nothing too exciting has happened, my fever reached 40C before I took some Ibuprofen to break it. My cough has completely disappeared this evening.. very weird. It's been months since I've gone so long without coughing... feels great. Hmm but I have this incredibly loud ringing in my ears! ..face it I'm a medical curiosity!