I have had the scan. The first, middle distance, appointment has been met. Now I have to wait to see the Dr and find out the results.
The scan went smoothly enough. My veins behaved and the radiographer found one straight away. For once, the expert listened to me when I pointed out one awkwardly placed vein. Ever since I was a child and probably due to the chemotherapy I had, my veins have been thin, winding and located deep under the skin. This has always meant that Drs, radiologists, nurses and phlebotomists have all struggled to find them. So one simple blood test often takes several attempts in different arms, at different positions and sometimes on different days, when they admit defeat. This is one reason I hate needles. Poke, poke, stabby, stabby, jab. In recent years I have, through experience learned the location of a couple of veins that are consistently accessible. They are, however in odd places, both on the underside of my ulna on each arm. This makes them awkward to get to and they’re quite painful to use. For these reasons everyone avoids them for the first four or five attempts at least.
In November last year, prior to my AS diagnosis I was quite unwell with a bone infection. As it turns out the osteomyelitis, to give it it’s proper name, was masking the cancer but that was not discovered until January of this year. I was in bed most of the time and the pain in my leg meant movement was limited. At a couple of stages I was admitted to hospital for short stays. On the second of those visits I started a regimen of intravenous antibiotics. What a nuisance that turned out to be. I was discharges from hospital and because the treatment was only for about 7-8 days in total they did not put in a PIC line. Instead nurses would visit me at home and administer the drugs via a cannula. What followed was a dread filled period whereby nurses and Drs and paramedics tried over and again to find a vein.
The record was success on the tenth attempt. This was administered at midnight by a paramedic whilst I lay in my bed. The nurses rang for a passing paramedic because they are more experienced at finding veins under difficult circumstances, so might have more luck. Even my two more reliable veins had disappeared from sight. They started using a paediatric cannula in the end because my veins are so fine.
The drugs were given three times a day, early in the morning, early afternoon and at night after the kids had gone to bed. The cannulas would fail after a day, my veins would just give up, so they would have to find a new location. On one occasion the drugs were so caustic, they caused track lines to form instantly, tracing a dark purple winding path up my arm. After a couple of days they decided to administer the drugs by drip. The drugs were diluted and it took a lot longer but it was kinder to my veins. This meant that the nurses had to sit with me for 60-90 minutes at a time (I forget how long exactly). Kelly would climb into bed beside me and try and sleep during the early morning and late night visits. Even the nurses would nod off occasionally, trying to get some shut eye before the next house call.
The nurses were brilliant and were kind, patient and persistent in pursuing their goal. The whole experience was awful and I dreaded each visit. I was too sick to complain about it though. Inside I would be praying that it worked first time.
This week’s visit for the CAT scan was fantastic in comparison.
Now I have to wait for the verdict. The appointment has already been changed twice, moved back first a week then another couple of days. Now my focus is on the 18th August. If there are any further delays I will ring them and reverse the alteration. I can take quite a lot of messing about, but there is a line beyond which I won’t be pushed. I am hoping against hope that the result is positive and the specialist will suggest further ways to positively affect my health. Whatever the result, I am going away on holiday at the end of the month. Nothing is going to stop that from happening.