well hello, hello.
I have been incommunicado for too long, although very heartened by all your kind messages. I simply wasn’t well enough to construct a sentence and life was just so ghastly I was trying not to dwell on it.
To cut a long story short, I’m now in a hospice. I’m unlikely to get home from here as I have traded pain control for mobility. It is an odd feeling not to have any feeling in my legs. The pain is caused by a spine tumour that’s growing round the nerves coming out of my spine low down. I feel it in my hip, down my right leg and round the bottom of my back.
I arrived here on Tuesday after two weeks in Guys hospital. They were amazing in the face of staff shortages and a legionella infection that saw the ward close and relocate. I felt for the nurses who were rushed off their feet. The palliative care team, the pain team and the oncology team between them mucked about at the edges of the appalling pain I was in but I was simply going through cycles of 20 minutes knock out, being woken by pain and it gradually building until I could get knocked out again. You wouldn’t believe the drugs I was (am) on.
The move to the hospice brought with it blessed relief. A very clever pain specialist inserted a line directly into my spine and there is now a syringe driver feeding a steady cocktail of drugs. I have a second syringe driver in my arm and enough tablets to take each day to make me rattle. I’m in St Christopher’s Hospice in south London. It is the first and original set up by Dame Cicely Saunders. It’s an hours drive from home. I believe the possibility of a move to a hospice closer to home is being explored but it may not be possible. This is complex pain, there are questions as to whether the closer hospice can manage it and how well the line into my spine would survive an hour’s journey. The pain is not going to get better; it will only get more difficult as the tumour grows. It’s so unlucky! Why did it have to be there?
I am gradually coming to terms with life as she is now. I have a single room on the third floor. The stewards are able to wheel my whole bed out into the beautiful garden. I was outside for three hours yesterday. My family has rallied round in magnificent style to take care of my girls. They have been able to visit and could even bring Noodle. She had to lick my face all over, obviously. But gosh. It’s a shocker to think I won’t stoke my cats or water my plants again. My nieces and daughters will just have to slug it out between them when it comes to the jewellery. I have already given most of the nice bits away but there’s a couple left. Who has the eye to sort the wheat from the chaff, I wonder? Odd the things that play on one’s mind.
That’s it from me for now. Do let me know your news
much love
xxxx
Hi jamit
Dear ellie 73 and Gang.
This site is buggy, buggy, buggy! Macmillian needs to get their money back and hire some real coders and get it fixed. Not compatible with my iPhone or my iPAD. Boo Hiss (stole this wording from daloni I like the sound of Boo Hiss for some things!)
I found the photo you were talking about and reposted it here. Everyone looks great. and Happy. If I were allowed on a airplane I would go and claim I am her Aunt, march in and visit Daloni and I would have pockets full of her favorite chocolate.. So there. I vote for more garden parties for all. All we can do now is keep working on using the site but we need computers, not tablets it seems.. My Hugs to you all, lets enjoy what we have and Picket to get the site fixed, Millie
