Aug 31, 2022 – After posting the Hallmark version of my report, I think it’s necessary to add some meat to my potatoes and tell “the rest of the story” for my readers that are coming here to gain insight on how to cope when faced with the realities of cancer.
There have been no pictures lately because the sore on his nose is nasty; large enough that you fear a gremlin will crawl out of it. I’m concerned that it too might be cancerous but we have them look at it each day and they still think it will heal up. It doesn’t help that the mask rubs right on it when he has to wear one. I am supposed to mask at all times, even in the room with him but he is able to wear his only in the halls and when the doctors are in the room.
They’ve been able to get him off the morphine which seems to have been the cause of most his involuntary movements, being half awake and half asleep and talking in his sleep. He’s able to do much better with just the long acting Oxy but during the days of severe mucositis (tons of phlegm causing the mouth sores) he had to have some short acting Oxy added back. They were concerned that with his bones being so scarred that there was only room for 5% blood flow, that the pain could possibly continue after the transplant but he has not had any bone pain since transplant day. That part was an immediate improvement.
Another issue that I have also talked with others about is the patient’s heightened sense of taste and smell. Along with not thinking that anything tasted good after the transplant, Scott suffered the inability to tolerate the sounds of anyone eating or the smell of food. This started while we were still at home. When you cook for a living and eating out together has been an important part of your relationship, it’s really depressing when you find yourself unable to cook or eat in your own home. I had a couple people tell me that for them it meant taking their food into the bathroom to eat so the patient didn’t smell or see it. It sounds trivial but it makes you cry.
It is certainly a challenge to walk the halls and see each person on the ward dealing with their own version of hell. The couple we met about ten days ago is struggling. Lots of signs posted on his door made us concerned. Thankfully his wife saw us out walking last and came out to talk to us. He is not able to eat at all and like several people in the ward is suffering with C-diff. A bacterium that happens to hospital patients and is very contagious. Scott was flagged suspicious at one point but was thankfully cleared. After seeing Scott in the halls doing so well, “Steve” was feeling down with his progress but we were able to assure his wife that Scott too has had his problems throughout the journey. I was trying really hard to “cheerlead” Scott and he shut me down by asking me not to brag him up; that everyone here is trying their best; they are all superstars. Saying the right thing at the right time is an impossible challenge right now.
Scott comments that at least I don’t have to feel the pain and agony of the cancer and its side-effects and that I need to cut him some slack. In my mind, I’m just trying to make sure he does what they are asking him to do. One can’t understand what the patient feels, but being on the side-lines unable to fix it is equally difficult. He can have pain medications and drugs to help him sleep through it while you sit and watch; helpless. You find yourself waking up when the nurses come in to hear what they are seeing or finding. If you choose to take some sleep aids, then that’s the time that you find yourself needed during the night and you are too groggy. Thankfully, the mind and body are wonderful things. We wake each morning with new issues or challenges but luckily the pain and suffering of the days before are already fading.