First, I need to explain why we are moving home.
The doctors have discovered melanoma in my left chest area. It was almost under my armpit, next to my lymphs and quite large. There were many discussions amongst the doctors whether to treat the melanoma with drugs or remove by surgery in their daily meetings. The prime discussions were between my surgeon and my oncologist. I didn’t realize what was going on but my caregiver, Leah, was right on top of this. I think that she was relieved that surgery was selected – like “get the dammed thing out of there.”
Surgery day came and the surgeon reported that it was successful – he got all of the melanoma out. The melanoma was very large – 4.6 centimetres in diameter, well beyond the basic maximum. Now it was time for me to go home. The recovery process could take place at home, as well as at the hospital. What they didn’t explain to me was that Leah would take the place of the hospital nurses. This was much more than I realized, but Leah knew what was required. I suppose that she could have brought in a private nurse to look after the jobs that she undertook, but she did it all herself – way beyond the jobs required for a caregiver. The worst job was crushing and dissolving all the pills to a very small size that would get through the feed tube into my stomach. When home, the next job was to hook up the feed line to my stomach, setup the pump and get the system running
There was very little notice from the hospital that it was time to go home. The dietician had worked with Leah twice and ended up giving her 10 pages on how to set up the feeding IV, pump, etc. We had an hour’s notice that we were moving and were given pages of notes regarding contacts, medications and vitamins (19 in all) to be administered through the feeding tube into my stomach when at home.
On Dec. 16, just after noon, we left the hospital in our car with Leah driving along with the IV equipment, and the medications (pills as required). I’m sure that Leah was very happy not to have to drive to the hospital (1.25 hours) at least every other day. I’m also sure that she was nervous about doing everything right in her efforts to look after me at home. It wasn’t easy. She was ready as I was, but the supplies had not arrived.
All the vitamins, and medications had to be crushed and dissolved to be put through the syringe into the feeding tube, I was fed twice a day plus 900 ml of water twice a day. I went through one bag of feed per day. When we got home by noon, we were without IV pole, pump or meds and help from home care. Leah had a root canal scheduled (great timing, eh?) that afternoon. Supplies were delayed until 2 a.m. – not a typo. I was snoozing through much of this confusion. We had to wait for the IV pole and pump and the house call from home care.
Leah made many trips to the pharmacy in Seaforth to get supplies, as well as eight cartons of feed bags. The time to set up my feeding was our choice. All I required was being fed eight hours per day and no feeding 16 hours per day. After a few days of experience, Leah decided it is best to feed me from 8 a.m. to noon, then disconnect with no feed at noon. Then we decided to set up the feed again from 6 p.m. to 10 p.m.
At home, after 2 a.m., I was connected to my IV pole and the feed line as I sat in my most comfortable chair in front of the TV. To move anywhere, one of us (mostly Leah), had to disconnect the IV and feed line from me or help tote the IV pole with me. Thankfully, the IV was on wheels. This was a real pain, but it was nothing as bad as what Leah was going through to look after me.
Three days after leaving hospital we were given appointments to come back to three of our hospitals for IV infusion, and to see our oncologist, rheumatologist, melanoma surgeon and speech pathologist. All this in one day. There was another melanoma to be removed and after this I required a drainage tube to be emptied daily at home.
I didn’t see the food for Leah’s meals and could only smell her food. I had lost too much weight in the hospital; Leah reported my weight gain to the dietician to ensure that I was getting the proper nutrition.
More to come on our adventures with moving home and with stomach feeding. I am feeling pretty good. Leah is surviving and putting up with it all.
***
Bob Murray is retired from the graphic communication (printing) industry and has been living in Seaforth and was diagnosed with Dementia in 2013 and works hard to stop the progress of the disease. He shares his experiences in his column entitled “My Voyage with Dementia”. Follow him on his blog entitled Voyage with Dementia https://myvoyage553264702.wordpress.com.
