Ask me on Friday, and I would have said that everything was under control. Manageable side effects of fatigue, dry mouth and night sweats. Then I ended up back in hospital the night before last with a fever... fortunately I'm out again now and not feeling too bad.. considering.

What led up to this was a casual dinner out with a couple of friends in a comfortable restaurant. I admit to it being only my second meal out since I was discharged twelve days ago. Maybe it went on a bit long, because I did start to feel a bit chilled? However, I soon recovered from my bout of the chills back in the car and felt fine walking up the two flights of stairs to my apartment. But, half an hour later, I noticed I had a temperature, despite feeling fine. I'd promised to check myself into the cancer agency or emergency if my temperature went above 38 and it was 38.2 (and very slowly dropping). In hospital, I was again treated for sepsis with all the works. I was rescued the next morning by a great young cancer agency doctor, who recognized me and my strange condition. Given a flu outbreak in the hospital wards and no beds at the cancer agency, I was allowed home (this decision was actively encouraged by a couple of friends on the scene).

The general doctors did manage to get quite a few needles in me to pull blood and administer IV antibiotics (Vancomycin & ?) Again they talked about the IV fungicide Amphotericin (known among medical professionals as "amphoterrible" because of it's side-effects) but fortunately got nowhere near administering it. Last time I was on the BCCA overnight ward, I think I said that it felt like I'd been run over by a truck. This time it's easier, more like being roughed up by a small pack of minis (see picture).

Prior to all this happening, last week, I was doing well, building relationships and learning from my home care nurses and specialists. I learned from my nutritionist that from the body mass index chart I should weigh over 133lbs. So, I'm going to aim for 135 to allow small drops. She used the Harris-Benedict scale to show that to stay alive, takes me 1400 calories of food, then we add 20% to allow everyday easy activities making 1700. To gain a pound a week, I need an extra 500 calories a day - fabulous eh? so simple.. 2000 calories intake a day is my goal. Of course, the trick's in the implementation - but I will aim for this with the help of other tips she gave me.

The sleep sweats deserve a mention. It started off once a night and progressed to 4 real t-shirt soakers a night last week. I don't experience the actual sweat, but wake up cold and wet and unhappy. Unfortunately, I seem to wake up a bit faster emotionally than intellectually. This gives rise to the frequent situation where, I'm standing beside the bed having pulled the wet covers back, staring incoherently at the wet patch in the bed. My feeling is one of indignation! Who could have done this to me? Why? and what did I do to deserve it? ...as I gaze around for someone to blame (!) I've now developed a number of strategies to make this easier and ease the transition to dry sheets and t-shirt.

I was back at the cancer agency briefly today to get another shot of G-CSF which seems to increase my blood counts by stimulating bone marrow activity. We also renegotiated when I should check in if I get another fever (very likely!) The agreement now is that I have to sustain a fever of 38.3 degrees for 3 hours, or recognize the fever as being different from my regular ones, before I call a doctor. This is a fabulous relief. Getting the pharmacy thrown at my suspected sepsis each time I get a fever and being admitted to hospital is hard on me and everyone else. My doctors are recognizing that I am exhibiting strange symptoms that aren't necessarily what they appear to be - esoteric diseases with new drugs are a challenge! I'm hoping to get a written report copy that I can present on future occasions if they seem to be barking up the wrong tree.

After being told on Friday night that there were no beds available at the cancer agency, it was strange to arrive this morning and find the place like a ghost ward. Half of it was completely closed, all the beds were made and empty, even the other half appeared to have available beds. It turns out that it's a shortage of nurses. Why? Well, probably lots of issues including poor pay, excessive qualification demands and maybe even better jobs south of the border. But, it's pretty sad to see such an efficient and excellent institution being underutilized.

Sorry about the extra mailout last week, I'm trying to get this blog sorted out technically. Bear with me and I'll even get the replies working properly soon... with some work, a bit of luck and perseverance... hope they work for my body too.

http://viewcourt.vcn.bc.ca/peter