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

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.

I don't need it all the time but some days I'm just too breathless and fatigued to walk the distance from the hospital car-park to the day ward. It also means Sarah and I can go for strolls now that the summer weather is approaching.

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 :)