My local hospice nurse came today and I had a good friend come too which helped no end.
I imagined that I could request to go into hospice, go on waiting list and when I had a date for a bed, stop my outpatients visits for blood products.
Seems I cant do it that way round. I have to stop receiving treatment, be at home on my own with possible risk of collapse or bleeding, then wait for a bed.
Fortunately there is a halfway house - go into a smaller local hospital where they will care for me but cannot give me the full treatment I have been having. Then wait for a bed in hospice.
Seems I am technically not dying as long as I am having treatment, even though that treatment isn't doing much to help me. But at least I have finally convinced them I am serious about taking next step.
Tessa
You're in my thoughts Tessa
Tvman
You will be in m thoughts.
Ellie xx
"You Never Walk A One"
Palliative care doctor had interesting take on my bag full of drugs that I brought in. She felt that most were putting a strain on my system with little benefit. As I'm no longer in the community I dont need all the preventative stuff, just the few things that treat current symptoms. So maybe I will actually feel better for a while. Lovely food so far and I can get snacks all day. That's such a relief when I cant eat big main meals.
Tessa
Dearest tessa
thinking of you today and in the future days ,hope all these snacks are delicious
positive thoughts
janet
xxxx
Hi Tessa
Good food, a doctor who looks at you as a whole person and, I bet, kind nurses too. I really hope you do feel better for a while. I imagine the sense of feeling safe and cared for will be enough to allow you to relax. I can stop worrying about you too. Phew !
xxx
Hi Tessa
I have had a lovely message via the community champs group to say your friends in the AML and SCL groups are asking after you and want to send their love. I have asked my fellow champ Mike TheHighlander to give me their names so I can pass on their thoughts and best wishes to you with some more details but please know that it's not just us incorrigibles who are holding you in our thoughts. Will you mind if I send a message back to say you're in the hospice?
I hope you are still snacking and that the change in drugs is helping you feel more comfortable.
Lots of love
xxx
Hi Tessa
Here's a message for you:
Mike Thehighlander asked me to send you a big ((hug)) from all the folks you know in both the AML and SCT groups - you know who they all are as they have walked with you during the early days of your treatment journey. They just want to send their love and prayers to you during this time xx
Dear Tessa
when the snowdrops come I shall think of you. I’m so glad that I joined this community and got to know you. Please imagine me giving you a gentle hug too. I felt like I understand you more because we live alone. I shown my mum your snowdrops, she loves them. I hope I deal with my end of time with the same dignity as you. Johnty understands your blood cancer and it was a shock to realise how quick both of you could go. But like you, I’m not having anymore treatment, I’m letting nature take its natural course. I wish I could give you one of my paintings but I can’t. Thinking of you always.
Many thanks. I have been thinking of the SCT group as they were so supportive but didnt want to post on that group in case it scared the people still on the early path of their journey. I think we should believe we can have a good outcome, while still preparing for the worst. If the worst seems likely, best to accept. Panic and stress doesnt help anyone. I often lost patience with people who were being hysterical and insisting on unrealistic reassurance. Of course we cant stay calm all the time and I was really scared of dying on my own.
A friend brought a little pot of snowdrops today so I can have on my windowsill.
Thanks for all your love, this wretched illness brings together complete strangers many miles apart.
Tessa
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