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.
Friday, August 19, 2011
Thursday, August 18, 2011
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
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
Saturday, August 13, 2011
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
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
Friday, August 5, 2011
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
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
Saturday, July 30, 2011
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. ....
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. ....
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