I've just re-read my post from July. I can't believe that it was only two months ago as it feels like a lifetime has passed already.
When Dad finally got his MRI at Oldham, they decided in conjunction with the neuro team at Salford that he did have stroke. They moved him to the stroke unit at Bury, ironically where he started this whole journey. Here they decided that no more treatment was available to him other than the truly palliative.
The stroke, combined with surgery, and the fact that he's had multiple seizures in hospital means that my Dad had fairly hefty right side paralysis and serious communication problems. He was approved for CHC (continuing health care) and I found him a place at a residential nursing home to me.
Choosing a home and agreeing to this course of action is to date the hardest thing I've ever had to do. It affected me way more than I thought it would. I felt, and still feel like I've betrayed my Dad by doing this.
The first two weeks in the home were hard, mostly because Dad was understandably upset and unhappy with his lot, but also because the hospital discharged him earlier than they should have done and without the Macmillan team/Oncology consultant being informed. He should have been sent to his new home with injectable meds and stuff to stop him seizing once one has started, preventing another visit to hospital. As he wasn't he spent less than 24 hours there before having a seizure which sent him back to hospital for a few days before we tried again.
When he went into the home he could walk just about, but the first seizure stopped that and he was made wheelchair bound. His body has been a little cruel to him since. After a couple of weeks he got shingles on his nose and one side of his face which put him in bed for a couple of day. A week after the recovery from that and he had another massive seizure, followed by a smaller one two days later.
This has put him in bed for a week now, and though they've tried to get him up, he's not focused enough, or able to stay upright enough on his own to trust him to not fall out of his chair. He hasn't asked to go for a smoke so I know he's not well enough yet. Although you can get a simple request through to him, there's not capacity for conversations, we're just dealing with base needs.
The plus side is that he's improving slowly, I don't think we've seen the last of him yet. My Dad has never given up at any point through this. He's been so lucky to be so well through his initial treatment. He tolerated the chemo and radio really well and faced it with a very level head.
Do I wish he hadn't had the operation in January? Massively. I think my Dad will die soon and it's not necessarily progression of the cancer that will do it. I feel that the operation in January shouldn't have happened, I think the operation in June did nothing to alleviate the issues cause by the previous one. That said, I am not a medical professional, I can only say what I've seen.
I hate him being in a home, but the staff there are lovely. They're getting to know him well, and with his DNR in place, the hope is that he can end his days there in relatively familiar surroundings, rather than moving him to a hospice or heaven forbid, hospital.
I keep thinking I'm ready, I keep thinking its now for the best, then I see him unresponsive and unmoving in bed and I'm the total opposite. I keep trying to remember what our last proper chat was about and when we had it. I'm sure it would have been something totally mundane and normal...there's actually some comfort in that.
So I pray to a God I don't believe in that the end is quick and that my Dad doesn't suffer. Him being unaware would be a blessing, I'll handle my side later.
Love to everyone affected by this awful disease, Marie x
