when does end of life care begin ?

Hi Jonty

thank you for the information and the link. I have looked at both. I followed earlier advice from you regarding drop in at my local hospice which has been very useful . I have completed all of the levant paperwork as I have a child at home  . I have no illusions in my case that my cancer is incurable , but at the moment I am well and looking at some options specific to my family circumstance Personally I find the information you provide very helpful and just wanted to say thank you . 

take care 

Tamencio xx

Dear

i am glad you have found my posts useful, we all have to operate at our own pace but in order to do so we need some sense of direction of where we are heading, and that is the only purpose of my posts, a sort of guide to. There are so many myths out there regarding palliative care, end of life care and the things you need to do to provide your family with the support and security they will need in the future. So thank you for your support.

Oh Tamencio

I don't think I knew you had a young child, you're so supportive of me and I am really grateful for that. Like , I have an incurable blood cancer and I have been neutropenic a couple of times lately, for me it's the start of my bone marrow failing according to the Haematologist. 

For the moment I'll read the End of life posts, I might reply but it's hard not to when someone puts up a post and I think I can help by giving support and love. I'm under no illusion about the path my cancer is going to take. I hope in that case that someone will be around to give me a shoulder to cry on. 

I am upset that some people have just had enough of hospital, of pain, of sickness and of struggling to get proper medical staff who are stretched at both ends due to insufficient numbers and failing infrastructure that leaves a very ill cancer patient in freezing temperatures with a call button that is broken. That's no way to treat anyone no matter what illness they have. 

I managed to catch the train even though the flight was delayed. I had to wheelie the front of my scooter up onto the train to stop the doors closing until the guard appeared with a ramp!. So we're on our way to Peterborough and in the morning we'll have a super super excited 3½ year old bouncing on top of us. Home in a week's time. I might not be around much this week.  

Love to everyone

Tvman xx

Have a wonderful time Tvman. I am glad you find my support helpful . I genuinely like people (probably too soft ) and care about them .

take care

Tamencio xx

Deartvman

have a lovely time on your trip, we look forward to hearing about your adventures when you return.

Hi

Thank you. That’s very helpful information. I’ve been living with incurable cancer for nearly four years now with the constant expectation that I have less than a year to live. I’ve had the “get your affairs in order” conversation with my oncologist and last autumn all she could say in response to my question as to whether I’d see my daughter through her GCSEs this summer was “I hope so”  But recently I’ve rallied again. So who knows? 

What I do know is that my need for palliative care is fluid. There have been times when I have needed input from specialists for pain and I’ve been lucky enough to find them. Other times I’ve needed psychological support. My need for emotional support has been pretty constant and I find the monthly phone calls from the hospice nurses very supportive. It’s good to check in with someone who knows your story and knows what questions to ask. 

Today I heard something that made me realise how lucky I am to have such great people on hand. A young woman I know qualified as a nurse last year and in September joined a community team in another part of the country. After two months she was visiting palliative care patients at home alone and feeling very unsafe. After four months, she was asked to visit a patient who’d recently been told she had incurable pancreatic cancer and was severely depressed to the point she had stopped talking altogether. This visit was to be made alone and was to assess the patients needs. This young nurse said she wasn’t qualified to do this visit and moreover was not prepared to do it. Her manager explained that the tesm is so short staffed there simply was no one else available. The young nurse was signed off work with stress and has now left the job.

Dear

im glad you found the information useful. I know many people read my posts who are not members of the end of life forum but want to be better informed should they feel they may need these services at some future point.

the story you tell is a very sad one but not surprising, as the number of people grow who are on life extending treatments with an uncertain prognosis like in your case, the need for a fluid approach to palliative and end of life care will only increase. 

as hospice care relies so much on charity donations I don’t think it’s currently able to cope with everyone who might benefit from its services. With the ageing  population growing it’s time to address the funding issues surrounding hospice care and start delivering patient centred care/ holistic care for everyone who needs it and supporting the staff who are trying to deliver it, as anything that reduces the need for hospital admissions is ultimately going to save money and resources, it’s a win win situation for the nhs.

i hope things are proceeding as planned on your trial, and you are enjoying having your doggy friend to motivate you to get out and about.

Enjoy yourself Tvman, it will lift you up enormously I am sure

Xx

I think a lot of people are unaware that hospices are

Dependant on donations - another reason why these conversations are so vital

Xx

Thank you for sharing this. It's very helpful. One can almost feel guilty superseding the expected time span. The journey from terminal to end of life is leaving a huge void in between. This is my biggest challenge. For a year and a half I have been trying to explain the explainable. There's no real 'support' along the way, even though I'm going there. You end up in a kind of 'no-man/woman's's land' with no real counselling/support and for people like me, having to wing it alone. Because of the current over crowding, lack of available beds, and staff, terminally ill people can find themselves lost, with no real emotional scaffolding in the interim phases. This has helped me with preparation not to mention the buffering of dignity and respect which is needed right along the journey. Many people are choosing to stay at home, to avoid infections. Having gone through treatment twice, I have a compromised immune system, which often sees me laid up sick for months on end. Even the hospitals tell me, stay out of here for as long as you can. Still, I'm deemed terminally ill, and was given a relatively short time to live. I can look at it as a blessing, a chance to review life, others might call it an awful curse, to be aware and not know the day or the hour. Now, I'm at a place inside myself, where I am naturally withdrawing from people who can't/won't educate themselves. The road is heading inward, more inward than ever, and it's an enormous relief to be able to share with like-minded others, without the worry of hurting or offending anyone. It's a joy to be honest. My energy levels on all counts (physical/mental/emotional and even spiritual for some) is depleting and I am far more careful how I invest my remaining time, and who with. For those brave enough to share the reality, thank you for being there. Kate xx