Initially I was quite frustrated and angry that they had kept me in because I ran a fever on the night I was getting my blood transfusion. They have pumped me full of antibiotics and denied me panadol unless I run a fever. Where as if I take it before my temperature rises, a fever never eventuates.
However I finally got to talk to my haematologist this morning and he has explained his concerns.
He doesn't want to risk missing an opportunist infection, as if I am to have any chemo them I would be defenceless against it and that could prove fatal.
He also agreed that the fevers could just be a symptom of the Hodgkins Lymphoma.
To try and get a better idea he has scheduled a bone marrow biopsy, CT scan and possibly another bronchoscopy for this week. So I'll be here for a few more days yet.
I've had to phone a number of customers and explain my predicament and all have been fully supportive. Still, I hate letting people down.
Ultimately I don't mind being here if it means we find some answers to my tachycardia, anemia, fever etc.. If it means a better quality of life, even short term, it's well worth it.
Mind you so far no one has been able to link any of the symptoms to one thing. That's frustrating. If it could be proved, say for instance, that my bone marrow was compromised by Lymphoma and as a result was working poorly at making red blood cells (and platelets) causing the anemia and the anemia caused the tachycardia, then I would at least have an answer and know that maybe chemotherapy would buy me some quality of life for a period of time.
However there are some serious risks of fatal infections when you have an immune system as weak as mine.
Since starting this posting I have had a bone marrow biopsy. My fourth since I started treatment over 5 years ago. Trust me it doesn't get any easier. I would call it a very intense discomfort. ! For those of you not familiar with the procedure, a device that basically looks like a cork screw but has a hollow tube rather than a spiral, is twisted and pushed into your pelvis and takes a core sample of bone, and blood/marrow.
It's pretty yukky.!!
I'll post again once the results come back.
1 comment:
Oh wow! My daughter has had 4 bone marrow biopsies and several more lumbar punctures during her treatment, but she was always under GA never awake. That looks incredibly uncomfortable!
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