I'm not going to try to write this all out again, so here's a compilation of today's posts on the Facebook Myeloma group. It took 45 minutes this morning from waking up to standing up, and only did that with help from the House Manager here who brought a walking frame up from storage downstairs. That made things much easier.
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Going to A&E in hope of x-ray as worse this morning. Ambulance wait may be 4 hours...
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Update: Have had a twelfth-degree interrogation over the phone by a "clinician". It would have helped if she knew anything about myeloma.
Eventually agreed transport to hospital but no promises about what happens then.
Six hours....
One of the questions asked was whether I was feeling agitated. You can imagine...
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Time for yet another update already. But first, sincere thanks to all those who have responded to and commented on all this. I really appreciate it.
Two ambulance men arrived, took my BP and etc.. Not surprisingly a good deal higher than usual!
Long conversation, upshot is they see no point in taking me in to lie on a trolley for hours (A&E already overwhelmed today) and they "very rarely" do x-rays for back problems anyway these days, so better to hang on for the MRI on Tuesday.
They did organise a bottle of Oramorph, which Sue is about to go and collect for me, bless her.
And to top it all, the House Manager here (who was very helpful getting me on my feet this morning) set off the fire alarm while doing some ironing. That meant the lifts automatically stopping working. Just as our weekly Tesco food delivery arrived....
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I've got the Oramorph and have just treated myself to a rather large 5ml.
The lifts are working again but the hot water and heating are both off. The fire alarm turns them off but re-ignition doesn't work as it should. Engineers are expected...
And now for an aspect of all this I haven't mentioned yet. Usually the first thing I do when I wake up is get out of bed, go to the bathroom (just a couple of non-metric yards away) and urinate. All normal. But for the last two mornings when I've eventually got to my feet - half an hour yesterday, three-quarters today) I've produced absolutely nothing. Not a drop. No sensation of wanting to go but can't, just empty-bladder nothing.
Half an hour later, all back to normal.
There are several possible explanations, one or two of them not very pleasant and with potential long-term implications. I think we can rule out prostate as no other symptoms apart from occasional urgency, and pelvic CT last May reported "Visualized parts of urinary bladder , prostate and rectum appear normal". There may be pressure on the relevant nerve roots right down at the base of spine, meaning that something has changed in that area where we know I have several small lytic lesions.
Talked about this with today's ambulance men and basically they said not our problem, keep a diary and take it to your GP. So I called the surgery and got a phone call back from a doctor inside an hour. She wants "urgent" diagnostic blood tests. I have to pick up the form Monday morning and then try to get "urgent" through the heads of the people at the blood test place "Chelmsford Health Hub". Wish me luck!
Myeloma, the gift that keeps on giving...
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Definitely an "interesting" day...
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