Home at last from the hospital the totality of the disease is now known. At present the bladder cancer spread into lymph nodes or glands if you prefer. Swelling there has narrowed my thoracic duct causing the lymphedema. Of the hundreds of lymph nodes, why those? Of course I have learned to expect with each step in the process that I will have unintended consequences. Hero’s of my stay include all the nurses, less the one who was angry when she tried to set my IV and punched through. This was my first on arrival, and in part I’m to be held responsible for not drinking that quart of water to make the veins easier to find and penetrate. Floyd, the nurse who doesn’t look the part and runs a standing comedy routine gets the trophy for setting an IV with speed and no pain that endured. Tara, who in the face of disaster calmly brought the resources to bear. Erika who brought sunshine to the room and took such great care to assure my comfort served me every weekday. Frankly, I was so humbled by the standard and level of care given I felt obligated to do whatever I could to be a good patient and limit my need for nursing.
I converted my liquid intake to oz to cc to make it easier, and set up a system of posting on the white board. I never complained and took care not to get angry, even as a young urologist in training drew on me with my own ball point. Of the doctors I found only the urologists as rather chilled in their interactions with me. Beyond the ball point incident the failure of this group early on to react to my lymphedema and the sense that they really don’t have time for me has left me with a little trepidation every time I encounter them. At the end of the day urology is all about the surgery, and since I at present am inoperable I shouldn’t complain, so I won’t.
Megan
‘Would you like someone from physical therapy to come up?’ she asked. ‘Good idea’ I said in sing song fashion. I thought that was a great idea. True to her billing Megan showed up Friday morning prior to my release. Young and extremely driven in her career, she packs a kit of compression tricks and massage for lympedema. After looking me over and consulting with Vanessa she taped my left leg to the underwear line and my right to the knee. ‘Leave them on as long as possible, through the weekend if you can’ she instructed. As a parting gift she gave to me a knit tube of white material. Smiling up and me she opened it with her fingers and demonstrated that it would stretch to accommodate even my grapefruit of testicular fluidic mass. ‘ Make a sling and hang this over your shaft’ she instructed. That alone has made it possible for me have 100% improved mobility.
Coming home after 7 days in the hospital left me with a little jet lag. Friday was a rough day, with discomfort, feeling sorry for myself and general lack of enthusiasm to go forward. Fortunately Vanessa has the patience for it and we weathered the period.
Now at 5 A on Saturday I am again glad to be here, even with all the discomfort. I slipped in and gave her a hug and little cuddle gaining a comfort and strength that she gives to me as long as I am open to receive it.
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