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. ....
Saturday, July 30, 2011
Thursday, July 28, 2011
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 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!
Wednesday, July 27, 2011
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
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
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