A trip to A&E

Yesterday morning I was awoken by the all to familiar symptoms of a fever. Shivering and a body that ached all over. A quick check of my temperature showed I was running at a very warm 38.3C.
One paracetamol, one nurofen and an hour later I was sweating my way back to a more normal figure of 36.8C.

Later in the day I emailed my oncologist and asked what he thought. My fear was that I was neutropenic, meaning no white blood cells or neutrophils.
I received his reply yesterday evening. He suggested I get a blood test done to rule out neutropenia.
However he also suggested I get it done at ED (Emergency Department) so that if I was neutropenic I could be treated straight away.

Now I absolutely hate going to A&E or ED or ER or whatever else anyone wants to call it ("hell hole" is one name that springs to mind). Whenever I walk through the doors it's either a six hour wait in an uncomfortable chair or worse as happened last time.. a seven week stay in hospital!
None the less I got up early this morning and ventured off to Lower Hutt Hospital A&E. My plan was to avoid the suffering crowds of Saturday morning sports injuries. There's nothing worse than sitting for hours beside a motocross rider with a foot that's facing the wrong way, or a mountain biker with a dislocated thumb, feeling like you should be making small-talk (or glib remarks), when all you want to do is get a blood test and to get out of there.

When I arrived I surveyed the room. Just two other patients waiting, both kids with a parent.
I filled out the required paperwork and waited for the triage nurse to call me up to the window.
I took a seat very close to the nurses station, figuring that if I had to stay here for a while I could at least entertain myself with my morbid sense of humour by listening in on the stories that the patients would be rolling out to justify their visit.

Ahead of me was a woman in her mid thirties and her ten year old daughter. They were soon called up and the nurse asked them what the problem was.
"My daughter has a problem with her achilles tendon in her left foot, we have come here several times before but it's just not getting better"

Hmm.. me thinks. Isn't that a job for a podiatrist, or at least her GP?
The triage nurse is obviously a very patient woman because in her shoes at this point I would have been showing her the door.
The nurse asks a series of questions and recieves long drawn out whining answers to each question. You know the type, they know they are pushing the boundaries but they figure if they talk long enough they just might sound convincing. Wrong!

All the while the mother's cellphone keeps ringing. Full volume and with a really annoying ring-tone.
Perhaps like the other 99% of the population she too has no idea of what silent mode is let alone when to use it. The nurse remains professional and continues on with her questions.
The ten year old girl is doing her best to look like she is in pain and miserable. However when she takes her mother's phone to answer a call from her sister, she slips back into normal mode and chats briefly before hanging up. Back to being in pain.

"On a scale of one to ten, how would you rate the pain" asks the nurse. "nine" whines the girl.
At this point I hold my head in my hands and I'm barely able to contain my mirth.
Nine on my pain scale is just below ten where mercifully you pass out.
At nine you are unable to speak, think or function at any level other than breathing. Your whole world is dominated by pain, your mouth is dry, your eyes fixed and dilated, pallor resembling that of a dead fish.
Your vision is narrowed to a single narrow tunnel of light and you are unable to process audible sounds let alone speech. You rock back and forth in a grey haze. ..I could go on.

This girl however, according to her mum has a very high pain threshold. So much so it would appear that when she sat down in the waiting room, she was able to jiggle away quite happily and tap both feet including the injured one, in time to some song playing in her head.
What is sad about this situation is not just the abuse of the Emergency clinic for what is quite clearly a long term chronic injury, but that this poor child has been denied proper specialist care by a mother who is either too stupid or too tight to seek it out.

By contrast the next patient was a young fair haired boy accompanied by his dad. He appeared to be about four or five years old. He did not speak the whole time he was there and held one hand over his right eye. Tears flowed silently from the other. I'm guessing he had scratched his eye or something similar as had it been worse I'm sure he would have been fast-tracked. Never the less, he was in pain, did not speak, certainly didn't jiggle and play about or even answer a cellphone call. The nurses gave him a lemonade ice-block to eat while he waited in silence. My heart went out to the little mite.

I had to cut short my study of the patients as the triage nurse decided I should be isolated from the other patients just in case I was neutropenic (luckily stupidity is not contagious). I was taken to a small examination room and a stream of doctors (well two) and nurses (three) came by to ask questions and take blood. I really did not want to be there but the risk from being neutropenic was just too high. In the past I've developed sepsis and been very, very sick after having low neutrophils from chemo and the stem cell transplant.

Then the first result came back, neutrophils 3.1. That's at the lower end of normal. At that point I just wanted out of there! But the doctor was concerned about my heart-rate. I've been mildly tachycardic for several years now and my normal resting rate is around 105-115BPM. Today it was 133 in triage but 114 once in the exam room. I explained this was normal for me. Then he queried my low platelet count of 30 (normal person 150-400) I explained that that too was normal for me. He left me once more and tried (and failed) to contact my oncologist to confer, leaving a voice message .

Two hours after walking through the doors I was set free and told to report back in if anything changed. I'd call that a lucky escape. I'm sure if my counts had been any lower they would have had me in for a few days hooked up to IV antibiotics and all the drama that goes with being admitted. Definitely not something I want to go through (again) right now.

As for the cause of the high fevers.. who knows? There's a stomach bug doing the rounds at the moment, I could have that. I wouldn't know as I currently have abdominal pain and diarrhea from the Adcetris and that would mask it. I've started myself on a course of antibiotics from my vast store of medicines just to be careful. ( and advised my oncologist )


...Ron

The third Cycle the first seven days.

It seems to be getting harder with each cycle.
Days 2, 3 & 4 were particularly tough with severe muscle and joint pain. I'm now on day 6 and I've been stricken with abdominal pain and diarrhea since day 4. Whether I've picked up a stomach virus or the toxicity levels are building with each cycle it's hard to say.
The joint pains are now much improved however. This at least puts me in a much better frame of mind, I was starting to feel like I was ninety. Hobbling around the house all stiff and inflexible.

Sarah and I went away for four days last week and stayed at a rented beach house. It was great! So much so that we put a cheeky offer on a little 1880 cottage that was for sale nearby and today our offer was accepted by the seller.That will keep us busy for a while with lots of hunting secondhand shops for period items to decorate it. The actual building and land are immaculate, so there's nothing to do there. (with is nice)
Here's a pic of it below.


At the rear of the cottage there is a  contemporary extension giving plenty of room for the kitchen and a large lounge with doors that open onto a private courtyard. The back lawn is huge at around a 1/4 acre, plenty of space for beach cricket, tents and caravans. The plan is to retire there in the long term and we bought now because property prices are so low, especially for second homes.


Tomorrow I have a bone density scan booked. It will be interesting to see if there has been much change from last year's scan. I hope it's not worse!  My broken ribs have stopped clicking, so hopefully they are once again on the mend. I took the stitches out of my elbow (well actually Sarah did because I don't have three arms) and all looked good until I woke yesterday morning to find I'd left a hand sized pool of blood on the bedsheets.
The wound didn't look like it had opened up to any great extent so I'm hoping that it was just a bit of the top layer of skin that had pulled away after rolling over in bed. I've held it together with stero-strips and a bandage to cushion the elbow. I'm hoping that will do the trick and I won't have a repeat of the non-healing wound from the last biopsy.

There's heaps of work on at the moment. I've been booking it all forward so I can have a few days rest with this upset stomach. The problem with bulldozing it all into the coming weeks is that eventually it will all catch up with me and I'll be super-busy! Hopefully I'll be well though, so it won't be too arduous.

...Ron

Second cycle completed.

The last three days of the second cycle were difficult. Not because of any side effects of the drug but because of the tapering off of prednisone. I got down to 12.5mg and my body starting complaining loudly. Joint and muscle pain and flu-like symptoms where everything hurt.
I've gone back up to my previous dose of 13mg and will stay at that until I normalise again. Then drop .5mg at a time. Possibly staying at each new dose for between two-three weeks. Previously I've been dropping 1mg a week.

All hooked up for the third cycle.

I have yet to experience any increased neuropathy so we are continuing on at the full dose of Adcetris/ Brentuximab. Yesterday I received my third cycle. At this stage we have only purchased enough of the drug for four cycles. I will meet with my haematologist in two weeks and discuss how many more cycles we will order from the manufacturer. Possibly after another PET/CT scan to ascertain how well the treatment is working. I'm expecting to purchase another four cycles unless the drug isn't working, but I'm fairly sure it is.

The surgery to my arm seems to have worked well and has healed nicely. Usually the stitches would be coming out around now, however I'm leaving them in till next Monday, a period of 14 days so as to give it plenty of time to knit.

I still have the ringing in my ears and a very productive cough. The latter I'm assuming is from the fibrosis in my left lung. It has been unaffected by either the prednisone or Adcetris. The other choking persistent cough I had has gone. That I believe was related to Hodgkins. The ringing in the ears I'll just have to live with.

I had an ultrasound on my left jaw, below my ear on Saturday. It was inconclusive as to what exactly it was. It could be an enlarged lymph node or a problem with the parotid (saliva) gland. I suggested to my oncologist that maybe a fine needle aspiration would help. He said it would not tell us enough to make a diagnosis. He prefers to wait and see if it changes size. At the moment it's approximately 12mm.

..Ron

Adcetris: The second cycle Day 18

I had the surgery on my elbow on Tuesday afternoon. I regret not having the forethought to video it. Dr Stu cut a large almond shaped section out, about 40mm long. There's seven or eight stitches. I'll be leaving them in as long as possible to ensure that the skin knits properly this time.

I must have stressed the wound somehow on Wednesday because it wouldn't stop bleeding until Thursday morning, soaking two lots of dressings and leaking onto the bedsheets. That reminds me... I must check my blood counts!
I got a blood test on Thursday just in case my platelets are low. I'm sure someone would have phoned if they were.  ;)


No problems with any side effects of adcetris at this stage of the cycle. It seems a shame to be going from feeling really good to feeling fairly crappy again after I get the third cycle on Tuesday afternoon, but it's a small price to pay in the scheme of things. I've been feeling so good lately that people have commented on it. There seems to be a real spring in my step. I'm no longer hobbling around like an old man.

The lump on my jaw however does bother me, it might be getting bigger it's hard to say.. I should really measure it I guess. It feels like It's about 12-15mm.
I have an ultrasound tomorrow morning, hopefully that will isolate what it is or isn't. I'll post what results I can glean from the technician.

Last night I attended the Hutt Valley Motorsport Club's annual prize-giving. I was pleasantly surprised to take away four trophies, I was expecting just one.
I won the K.M Archer Cup for fastest time of the day at Hillclimbs, The Debreceney Cup for sealed events over 2000cc, The Freeman's cup for best results at hillclimbs and the Regal Jewellery Cup for fastest time of the day at Mount Victoria hillclimb.

Not bad when you consider that I spent a great deal of last year in hospital, was pretty much an invalid and missed several events as a result! To say I'm pleased would be an understatement!  :)

..Ron

Day 15 of cycle two.

Sorry for the long break in updating.
Not a lot has happened healthwise. Here's an overview of the last five days..

The lump on my jaw is to be given an ultrasound scan on Saturday morning. Like myself, my GP had no firm idea what it might be. Could be a cyst, a reactive lymph node, a blocked saliva gland or a completely new type of tumour.. Personally I don't think an ultrasound will tell us much more than whether it's a lymph or parotid (saliva) gland. I think a biopsy might be needed to be conclusive.

I've been fairly well the last few days, however I've been plagued by diarrhea. A combination of the adcetris and antibiotics. I finish the antibiotics today.

This afternoon my other GP, Stu, will cut out the scar tissue on the "thing" on my elbow and stitch it up. I'm hoping that will be the end of it. If it doesn't heal this time things could get messy, I'll be running out of skin on my elbow to cut out! ;)

I've been busy sorting out a new layout in my workshop now that the Toyota has gone from the corner it was occupying. I've built a workbench out of left over timber from Sarah's workshop build and apart from having to buy the four posts for the legs, it's been a cheap exercise. I had a quote of $425 for a professional kit-set workbench to match the other four I have but I just couldn't justify the expense.

I've also nearly finished repairing my old drill press. It's 30 years old but in very good condition. It's been stuck on low speed for the last twenty years after someone tried to adjust the speed with the motor not turning. It's a fun thing to work on. Very "old-school" in design. It runs two pulleys that are of a variable size. By turning a knob you change the pulley size. The two halves of the vee in the pulley get closer together of further apart effectively making them bigger or smaller.

Anyway, it was totally seized up. I've stripped and cleaned it. Repaired the stripped gear and re-attached the tiny little chain that moves a big mechanical pointer that shows the rotational speed of the chuck. It's like a big meccano set. fun fun! :)

OK must go, I have a Nissan Skyline on the hoist waiting for a new rear muffler.

...Ron