What they don’t tell you….In the beginning you’re not told much - for your own good – too much knowledge would have you all running from the exam room screaming “no bloody way will I let them do that to me!” Once, however, the surgery’s been done and you’re really into the middle of the journey, you would think someone would start to tell you what was happening, what would happen and when to expect these happenings??? Nooooooooo…..they funnel you along from room to room, building to building, treatment area to treatment area, all repeating the same charming lie…all is ok….you look well today….keep your chin up. You’re doing well.
The fatigue is so, so bad the poor man can hardly stand up. The weight loss is quick and beginning to show. The look on friend’s faces when they see him says it all. For a brief second they are aghast. The radiation burns they said would not be too bad at the beginning are currently turning his skin and neck and face black. He looks like a Hiroshima ground zero patient. The ENT nurses are surprised at this. They tell us this is one of the worst cases they have seen. He can’t swallow now so we’re back total tube feedings. His neck is too painful to touch and twice as painful to look at. It reminds me of the molten lava one sees on a National Geographic program; the skin is so black you see the bright red streaks of new, tender yet burnt, skin breaking through the darkness. The office staff looks at him and cringes-the medical staff is doing the same. It’s only the doctors saying how well he’s doing. All but the chemotherapy oncologist who says “oh yeah, it will be back in 18 month-to 2 years. 100% guarantee on that.” Would it be too difficult at this point to tell us what’s around the next bend?
Whatever they are roasting and burning in the throat is also affecting the trachea and lungs. He coughs up “Aliens” – large, strange, burnt, gloppy shapes that seem to want to stay around a bit. Would’ve been nice to know that small tidbit ahead of time. Also knowing the donor site is going to hurt tremendously from waking to sleeping would have made things a wee bit easier. Knowing that we will probably never again be able to go out to a restaurant, a ball game, a formal dinner……yeah – that’s something they could have told us ahead of time.
The disfigurement is so demoralizing. People stare at him wherever he goes. The scars on his neck are like neon signs pointing straight to the gaping hole in his neck. Covering it with a white foam stickey attracts even more attention. Then they see the long patch of grafted skin on his wrist and forearm and the matching scar that runs up his entire arm. The stares are painful and insulting. Those that will speak to him talk to him like he’s mentally deficient and deaf. That only adds to the pain and despair.
He hurts so much. While others patients have become friendly with others sharing their plight, he sits alone. He is so isolated – no one in treatment has had his surgery – there is no one to share treatment stories with and draw support from. He can’t talk; can’t eat and now can’t walk without a cane. Yesterday he had to cough while in the treatment waiting room and was told by the volunteer there to “take that into the bathroom – no one wants to see that.” All he had done was cover his stoma with a handkerchief and cough – the same as anyone else does - but he has to cover his neck instead of his nose or mouth. He is miserable and depressed. He wonders if he should not have had the surgery –if he should stop treatments – if he should just give up.
I wish there was a quick-fix. I would risk life and limb to get it for him, but I know there isn’t. I know this is something he must endure and I am doing my best to make his days easier and soothe his worried mind. I’ve been around emergencies and medical difficulties all my life but nothing has prepared me for this. I keep digging deeper and deeper into myself to find strength and encouragement for him. Please, God, don’t let that well run dry.