Wednesday, December 12, 2012
I nearly spoke too soon!
After a week of pleasing haemoglobin counts Sunday night was a near fatal disaster.
I had been taking antibiotics prophylactically due to my concern about a possible chest infection that I felt might be building. It didn't eventuate even though my breathing still feels awful, like a bad case of asthma.
What did occur is a very bad case of antibiotic induced diarrhea. This really puts my whole gastrointestinal system to the test and I wasn't too surprised to discover I was bleeding internally as well.
I didn't worry too much because it usually only bleeds while you are actually sitting on the toilet. However this time it must have continued for some time afterwards because by morning I was so fatigued that I could not get out of bed or dress myself. I was incredibly weak.
We went to the Day Ward as scheduled and a blood count revealed my hemoglobin count to be just 78, the lowest I have ever been. Two units of platelets and two of red blood cells helped.
I've been told that I would be highly unlikely to survive a significant internal bleed. It must have been just a small slow one. What puzzles me is how a spontaneous bleed could start but stop when I have no platelets to make it clot? I'm just glad it did! Another bullet dodged.
It's now Wednesday and I've just returned home from another day of transfusions, again two of each of platelets and red blood. I've been feeling really good all day, I've mustered up some energy from somewhere. Certainly not my blood as the counts were again very low today. It could take a week to build up to my usual baseline count. The nurses joked that I must have received some Superman blood on Monday, I suggested more likely Lance Armstrong's !
I start GCSF today and if my neutrophils and white cell counts return to normal I will have more chemo on either Friday or Monday. I'm guessing Monday.
Update later.. Ron
Sunday, December 9, 2012
It's been a hard couple of weeks. But I'm still here!
Sorry for the long break since the last post, So much has happened that I've just not had the time or energy to write.
It started off a couple of weeks back when I blew out a couple of high grade fevers.
I also had quite severe night sweats that left the bed soaked.
I arrived at the day ward and settled into my lazy boy chair for the day, (one of the few small comforts of being in hospital three days a week.) The nurse took the usual blood sample so we could get the blood counts and decide on what we needed to transfuse that day. I suggested she take a couple of blood cultures as well to make sure my fevers weren't an infection. Something that would be fatal if left untreated in my situation.
The next day, Thursday, I got a phone call from Paul the duty doctor on the day ward. I'd grown a nasty bug on my PIC line and I needed to be admitted urgently.
Bugger! On one of my few days off I really did not want to go in but to not go in would be foolhardy.
Once again it was a long wait in a cubicle in the Emergency Dept while they found me a bed in the cancer ward. Because of my neutropenic state I was fast tracked, so at least there was no waiting in the reception area.
Four days of IV antibiotics on the ward and I was finally discharged late Sunday night. The next morning after just twelve hours at home I was back on the day ward getting more blood. Tuesday off, then back in on Wednesday. Thursday saw me in surgery have a new "Power PICC" inserted in my right arm to replace the infected one that had been removed.
I could write a whole blog on just how bad that exercise went. I never have good luck with these procedures! Three attempts were required to get the wire into a vein by which time I was stressed to the max after well over an hour of massive discomfort.
Next day it was back in to the day ward for more bloods. It's now the weekend and I'm enjoying my first break in two weeks. However you have to temper that with the fact that I'm still quite weak and fatigued so It's not exactly a holiday.
On the good news front.. Last week I required far less red blood cells than I usually do. Just two units instead of the usual four or five. If I were to be optimistic I might suggest that this may indicate some recovery in my bone marrow. Perhaps the chemo is doing some good? The coming weeks shall tell.
While on the ward I was treated by a young male doctor I hadn't met before.
Like all the other doctors he was concerned at my constant use of nurofen to keep my fevers at bay. He suggested a novel treatment. A drug, meloxicam, that is less likely to cause stomach bleeding and problems with my platelets. He wasn't sure if it would work and said it was unsubsidised so I'd have to apply for it.
It's a once a day tablet that costs $28 for a 30 day course.
I said I'd give it a go. So far I have had no night sweats and I can get through 24 hours with just two panadol to treat the low grade fevers. Very pleased as I was on five nurofen and five panadol previously and waking through the night to take them.
Sarah and I decided to purchase a wheel chair for me a couple of weeks back.
Just to end on a good note here's a list of positives I can be grateful for today.
I can still drive, we are at the cottage in Foxton Beach this weekend and I drove the entire two hour trip and felt totally capable.
My blood counts appear to be improving.
I'm not as fatigued as I usually would be. I got up and dressed myself with very little effort. Some days I can't pull my jeans on I'm so weak.
I don't have night sweats like I used to.
The lymph nodes in my groin are no longer getting bigger and I almost think they are smaller. Who knows, should have measured them ;)
We applied for a mobility parking card last week. Can't wait to see the looks on peoples faces when that's on the windscreen of the Evo 6.5 :)
Monday, November 19, 2012
A week of pain.
I mentioned in my last post that I was injecting myself with GCSF growth factor to bring my white blood cell count up. The counts got back into the safe zone last Wednesday but it was decided to defer the chemo scheduled for that day until this week to give my blood a chance to fully recover.
The back, muscle and joint pain just got worse and worse however. By mid week I was in terrible pain. I think I spent the best part of three days just laying in bed groaning. None of my usual painkillers seemed to work well enough to even take the edge off the incredible ache from my lower back, hips, thighs and knees.
It's a lot better now and a couple of panadol easily deals to the back-ache that comes and goes.
However I have chemo on Wednesday and will start on the growth factor again soon after that as my white cell counts drop again as a result. I'm really not looking forward to another three days of what could be compared to torture on the rack.
Today was a milestone, for the first time ever my platelet count read absolute zero. Sometimes the nurses would say I was at zero but when the printout arrived it would be "1" or close to it.
Apparently most doctors have never seen a patient with a zero platelet count. You know me.. like to be different ;)
I bled all weekend from my nose. It started on Friday even though I received two units of platelets that day. I was thinking of going into the emergency department on Sunday but then the constant trickle stopped and the thought of going into ED for probably six or more hours for what takes an hour in the day ward put me off a little.
It turns out that I never actually stopped bleeding: my nasal cavity had just filled up with so much congealed blood that it acted as a plug. I waited until I had received my two units of platelets today before blowing my nose. I looked down at the tissue in total disbelief. "Did all that come from me?"
Gross!
Because of my inactivity over the last week or so due to pain and generally feeling really crappy, I've lost more weight. I'm now down to just 57kg's. That's really scary. It's six kg's lower than when I got out of hospital in June. I think one of the problems is that my muscles are atrophying as a result of greatly reduced exercise. The doctor at the hospice had told me not to exercise as it would use up energy needlessly and leave me fatigued.
I think she thought I was closer to the grave than I do! The result is I'm now very week in my legs and need to get back on the treadmill for some gentle walking to get back some muscle strength and the weight that comes with it.
Well I'd better go... coughing fit.
The back, muscle and joint pain just got worse and worse however. By mid week I was in terrible pain. I think I spent the best part of three days just laying in bed groaning. None of my usual painkillers seemed to work well enough to even take the edge off the incredible ache from my lower back, hips, thighs and knees.
It's a lot better now and a couple of panadol easily deals to the back-ache that comes and goes.
However I have chemo on Wednesday and will start on the growth factor again soon after that as my white cell counts drop again as a result. I'm really not looking forward to another three days of what could be compared to torture on the rack.
Today was a milestone, for the first time ever my platelet count read absolute zero. Sometimes the nurses would say I was at zero but when the printout arrived it would be "1" or close to it.
Apparently most doctors have never seen a patient with a zero platelet count. You know me.. like to be different ;)
I bled all weekend from my nose. It started on Friday even though I received two units of platelets that day. I was thinking of going into the emergency department on Sunday but then the constant trickle stopped and the thought of going into ED for probably six or more hours for what takes an hour in the day ward put me off a little.
It turns out that I never actually stopped bleeding: my nasal cavity had just filled up with so much congealed blood that it acted as a plug. I waited until I had received my two units of platelets today before blowing my nose. I looked down at the tissue in total disbelief. "Did all that come from me?"
Gross!
Because of my inactivity over the last week or so due to pain and generally feeling really crappy, I've lost more weight. I'm now down to just 57kg's. That's really scary. It's six kg's lower than when I got out of hospital in June. I think one of the problems is that my muscles are atrophying as a result of greatly reduced exercise. The doctor at the hospice had told me not to exercise as it would use up energy needlessly and leave me fatigued.
I think she thought I was closer to the grave than I do! The result is I'm now very week in my legs and need to get back on the treadmill for some gentle walking to get back some muscle strength and the weight that comes with it.
Well I'd better go... coughing fit.
Tuesday, November 13, 2012
How am I ?
That seems to be the first question most people ask me these days.
The simplest answer is to just say "Ish".
If I'm feeling like sharing I'll say "relative to last week?" "better/worse"
There's just no way I can describe how I feel some days without going into information that people just don't to hear or deal with. Most just want me to say "good thanks" so they can get on to what it is they want to ask or talk about. Family/close friends excluded.
Tomorrow I receive my third cycle of Vinblastine. I have no idea if it's working. There's been no improvement in any area that I can see. In fact I've started having night sweats again after a break of over four years.
They are not nice and I soak the bed sheets like I've spilt a jug of water in the bed.
I don't sweat from my back much anymore since having radiation in 2008. However I sweat from my arms, legs and chest. When I woke this morning drenched, I lay there watching the beads of sweat form on my arms. Nothing I can do but dry off and put on a dry tee-shirt to isolate me from the cold wet sheets.
I'm taking GCSF growth factor to try and get my white cells back into the normal range as they have been depleted by the chemo and leave me open to infection. Side effects from that include back, muscle and joint pain.
Unfortunately a side effect of the chemo is also lower back pain. :(
My breathing swings from Okish, and then bad to worse. Sometimes in the same hour.
Fatigue levels are very high. I get fatigued and start to cough if I stand up and move around the house. I can only walk very short distances. If I sit quietly in a car for instance, I can go without my oxygen for about 2 hours without too much distress. However it's always nice to put it back on for a small increase in well-being.
I've been bleeding more lately, my arms are a mess. Twice Sarah has bumped into me in the slightest way and I've been left with a 20mm diameter blood blister. I bleed into my stomach too, from where or how we have no idea. All I can do is try and keep my platelet counts up.
Thing is I'm still here to complain about it. For that I'm grateful. I just wish that one of these days I'll get some good news, no matter how small so we can celebrate and feel like it's all been worth the suffering.
Maybe tomorrow's counts will show a improvement.. forever hopeful :)
The simplest answer is to just say "Ish".
If I'm feeling like sharing I'll say "relative to last week?" "better/worse"
There's just no way I can describe how I feel some days without going into information that people just don't to hear or deal with. Most just want me to say "good thanks" so they can get on to what it is they want to ask or talk about. Family/close friends excluded.
Tomorrow I receive my third cycle of Vinblastine. I have no idea if it's working. There's been no improvement in any area that I can see. In fact I've started having night sweats again after a break of over four years.
They are not nice and I soak the bed sheets like I've spilt a jug of water in the bed.
I don't sweat from my back much anymore since having radiation in 2008. However I sweat from my arms, legs and chest. When I woke this morning drenched, I lay there watching the beads of sweat form on my arms. Nothing I can do but dry off and put on a dry tee-shirt to isolate me from the cold wet sheets.
I'm taking GCSF growth factor to try and get my white cells back into the normal range as they have been depleted by the chemo and leave me open to infection. Side effects from that include back, muscle and joint pain.
Unfortunately a side effect of the chemo is also lower back pain. :(
My breathing swings from Okish, and then bad to worse. Sometimes in the same hour.
Fatigue levels are very high. I get fatigued and start to cough if I stand up and move around the house. I can only walk very short distances. If I sit quietly in a car for instance, I can go without my oxygen for about 2 hours without too much distress. However it's always nice to put it back on for a small increase in well-being.
I've been bleeding more lately, my arms are a mess. Twice Sarah has bumped into me in the slightest way and I've been left with a 20mm diameter blood blister. I bleed into my stomach too, from where or how we have no idea. All I can do is try and keep my platelet counts up.
Thing is I'm still here to complain about it. For that I'm grateful. I just wish that one of these days I'll get some good news, no matter how small so we can celebrate and feel like it's all been worth the suffering.
Maybe tomorrow's counts will show a improvement.. forever hopeful :)
Wednesday, October 31, 2012
Vinblastine
Just received my first cycle of Vinblastine chemotherapy today. Would be so good if this one works to remove the cancer from my bone marrow so i can start making my own blood again. At least we are trying new things, better than the "time to give up" suggestion I got last month!
There was a new Doctor covering on the day ward today and she approached me while I was having my chemo and challenged me over my request to have a unit of blood today along with a unit of platelets. This is a situation that arises nearly every time there's a new doctor on the day ward that does not know me or my situation.
I was quite annoyed at having to explain yet again why I like to try and keep my counts as high as possible and she certainly gave the impression that she was going to deny my request.
Then she pulls out a note from Paula, the doctor that is usually covering the day ward and tells me that it says that "Ron can decide on his own blood requirements". I growled at her and asked why she put me in a situation of having to justify my decisions when all the other doctors give me a free rein.
"Oh I just wanted to get to know you" she replied. "There are other ways" I said "than making me stress over something that wasn't even an issue"!
Doctors.. why do I have to bang heads every time I meet a new one?? Rant over.
So far the chemo hasn't made me nauseous, I'm not expecting it to either.
I'll update next week.
By all accounts my daughter Ashleigh and husband Michael are having a great honeymoon travelling around Taupo, Napier and everywhere in between. I look forward to seeing them again on Thursday when they return.
...Ron
There was a new Doctor covering on the day ward today and she approached me while I was having my chemo and challenged me over my request to have a unit of blood today along with a unit of platelets. This is a situation that arises nearly every time there's a new doctor on the day ward that does not know me or my situation.
I was quite annoyed at having to explain yet again why I like to try and keep my counts as high as possible and she certainly gave the impression that she was going to deny my request.
Then she pulls out a note from Paula, the doctor that is usually covering the day ward and tells me that it says that "Ron can decide on his own blood requirements". I growled at her and asked why she put me in a situation of having to justify my decisions when all the other doctors give me a free rein.
"Oh I just wanted to get to know you" she replied. "There are other ways" I said "than making me stress over something that wasn't even an issue"!
Doctors.. why do I have to bang heads every time I meet a new one?? Rant over.
So far the chemo hasn't made me nauseous, I'm not expecting it to either.
I'll update next week.
By all accounts my daughter Ashleigh and husband Michael are having a great honeymoon travelling around Taupo, Napier and everywhere in between. I look forward to seeing them again on Thursday when they return.
...Ron
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