Where do I start? Last wednesday Ed went for his 2nd dose of herceptin but no tablets to take due to how poorly they made him. Thursday and friday Ed was able to eat very small portion of mash, brocolli and thin half slice of corned bef with gravy which was the first `meal` in about a month. Bowel working and friday pm went in the car a mile to the prom to see the sea. Pain patches not been upped for almost 2 weeks. Were we on a winner? I dared to go to sleep with a smile on my face.
Saturday..... pain , pain and more pain, through the night, sweating eating tramadol topping up with oramorph. Sunday morning he wouldnt let me phone for help and who would we phone anyway, he wont go to hospital again so I put another patch on myself and sunday pm he was doped up unable to swallow water let alone eat, I just rubbed icecubes on his lips. Monday GP was meant to phone me as usual but by 11am I phoned for emergency visit. He came at 2pm and arranged for syringe driver to be put in and recommended Hospice where he phoned to see if there was a bed. Hospice having a new roof so only operating with 14 beds, all full. District nurses got pump working 4pm. Ed was exhausted and we got him settled with a view to trying to assess situation Tuesday. Phew.
Tuesday Ed was dopey but not in pain so I sat and talked about options, hospice or home, For once I thought he accepted the fight was over. He wants to be at home and we filled in the paperwork for his preference, pain free, at home, no drips or anything. The pump stopped working and i had to call the district nurses again but soon sorted. Macmillan nurse called and said Ed could change his mind at any time but no worries they would liase with us, GP and district nurses.I felt reassured that his and my needs would be met and Ed was comfortable, another phew.
Today, Wednesday, Ed woke up and drank a full cup of tea! and ate half a slice of toast! Got up and I helped him shower and dress. Then he asked me when his next chemo is !!!!!!! At 1pm he asked for and ate a scrambled egg ! The bowels are working too in spite of no `movicol`. How can I cope with these contradictions from his body and his mind? I am going mad trying to work out what is going on. He is very hyper, following me from room to room, he will settle if I sit next to him and then he rambles over the same stuff again and again. He tells me what to do when he is gone and then talks of his next chemo. He says not to leave him alone and then tells me to go to the shops. I know the diamorphine will muddle him but cant understand the eating changes when the GP thought there was a total blockage. Guess the only thing to do is the old ` wait and see` but boy am I confused!!!!
