I should have written sooner. Much sooner. To leave my ongoing tale with a full body CT scan looming on the horizon and then not utter a word since is pretty bad form. It is not that there have been so many crises to deal with or that there has been news that has been simply to bad to bare. If I am honest with you I have been doing an inordinate amount of sleeping and although my fever has begun to dwindle one of the times it does flare up is the same time of night I prefer to write and of the two activities laying in bed and burning up always wins through.
The scan went ahead on Monday and my early hopes that I would not have to drink that terrible liquid again were soon dashed as two bottles of the stuff were brought to my room one for immediate use and one for a few hours time. Having scoffed as much food as possible before my 'nil by mouth' deadline I was eventually wheeled down to Radiology and having been parked in a draughty doorway for a while was led into the big room and passed through a large whirling hoop a few times before being wheeled back up to by room.
It is worth pointing out at this juncture that I have not lost the power of my legs but, when in hospital, you must be wheeled everywhere. Its the law. If necessary they may even force you to place a blanket over your knees for good measure.
I have had CT scans before but was still highly nervous about the results of this one. There is that fear that, in looking for the source of infection in such detail, that they'll find something unrelated but staggeringly serious that may have ordinarily gone unnoticed. The results came late in the day on Tuesday and, thankfully, there were no tumours or failing organs. There were also no signs of lost car keys or old coins. My spleen, it is to be noted, has shrunk back to its pre-leukaemia size, it is now a mere eleven centimetres and it is estimated that I have lost three kilograms in body weight because of it.
There was no sign of the source of any infection but as this week has progressed my anti-biotics have been changed to one that got me out of here last time. Early on in the week a number of times in the day and night I would have what I call an 'episode': A feeling of sudden coldness and utterly uncontrollable shakes. Climbing under as many blankets as I could muster over an hour or so I would warm up and the shakes would stop only to be replaced with an intense heat. My skin would be physically hot to the touch and exhaling would be like breathing in a desert. Throughout the whole thing my head would throb, not as a headache. No real pain. Just a pressure. A seemingly endless pressure. This would also last at least an hour and I would remain under my blankets throughout until I felt I could emerge into the world again.
As the week has gone on, particularly under my new drugs, things have slowly improved. I still get measurable temperature spikes, which are highly annoying and blights on my otherwise good 'obs' charts, but the symptoms of my episodes are now far, far reduced. I can still feel them coming on but the effect now doesn't get much further than "oo its a bit cold in here" for half an hour before an hour or so of "oo its quite warm, I'll have to open the window." The head throb is not as harsh or long lasting which has meant I have started listening to more music now. Something I was really missing but just did not have the inclination to do.
I would like to have been out of here by the weekend but it is clear that that is not going to happen. Even if I had a symptomless day tomorrow they would still want to keep me in for the weekend but there are rumours that they may let me go outside between drugs which could open the door to the prospect of real food. If not then I am seriously considering the various methods I may need to employ to get a Chinese takeaway delivered from my favourite oriental eatery in Richmond.
Having dreams is the only way to get by in here. Even if they will never come true.
Hello Richard,
ReplyDeleteI have been following your blog. I also have hairy cell. I am retired and was diagnosed March 13, 2009. I understand that I am a rare case as I am female. So far, I have been fortunate and have not experienced the symptoms you have upon diagnoses. However, I was to start treatment before Christmas but my neutraphil count was okay...platetels are very low...a couple of infections have not helped. Also an enlarged spleen. Due to normal neutraphil count the chemo was delayed and another bone marrow was performed. These samples have been sent to a larger centre for cytology testing which takes a number of weeks. So, I am in limbo until the later part of March.
So, I have been keenly reading about your progress, as we are in a unique club.
Sincerely hope that you are improving and you will be home with your wife, soon.
Also happy to know that no car keys were found during the cat scan. Keep smiling.
Hello Rich,
ReplyDeleteThis is your long-lost cousin(?) from the States. I can't believe it's been almost 2 years since our family visited. I've been following your blog since your aunt first told us about your condition. I'm glad you are feeling better, and that you are continuing on your journey to wellnes! Best wishes to you and your wife and soon-to-be little Heartbeat! We're pulling for you Across the Pond!
Take Care,
Your Seattle Cousins...L, P and J