Opting to go to hospice

Dear tessa, this is why so many blood cancers patients end up dying in hospital because we can choose to have treatment very near to the end of our lives. The only way round it seems to be to stop treatment earlier than you would like and make yourself eligible for end of life care in the hospice, or this half way house option you mentioned. My situation is I will be stoping cancer treatment and my dialysis at the same time and then i won’t last more than a month due to kidney failure and the cancer will almost be irrelevant. In a very warped way I’m glad I have this card to play as I have more control than the average blood cancer patient. I see people at my clinic living off blood transfusions waisting away who should have stopped these futile treatments many months ago, it’s sad to watch and painful for their relatives, but these are the choices they are offered and they have agency so it’s up to them.

Hi Tessa 

That sounds like a really tough meeting. Are you reeling? It always helps to know your options, I think, and to understand the consequences of any decisions you might make. But sometimes knowledge is very hard won. 

Only you can make the decision about when to stop treatment. I hope you’ll know when the time is right and then find the help you need to remain comfortable through what comes next. 

Lots of love, dear Tessa 

xxx

Interesting development today. Hospice nurse spoke to specialist hospital nurse, who says that no way should I stop transfusions unless I have definite date to go into hospital/hospice. Glad she validated my feeling that it was a very risky strategy to stop treatment without the next step firmly in place. But also felt a bit scary that she thinks I wont stay functional very long without the blood support.

Tessa

dear tessa, it sounds as though they are talking about weeks rather than months without blood support, is that what you take from that conversation. If so you will need to know how long you will have to wait for a a hospice bed to become available to coordinate the two things. The whole thing sounds like a chicken and egg scenario, and very frustrating for you.

Hi Tessa 

goodness what a nightmare for you. I have no words of wisdom other than to say have you asked how long the hospice would allow you to stay? My mum was admitted to a hospice when she stopped treatment 20 years ago. Tube feeding was withdrawn and she began the slow process of starving to death.

It wasn’t immediately apparent to us (her daughters) that the hospice would offer her no more than two weeks care. I remember the shock when the social worker sat me down to say we needed to plan for her imminent discharge. As things worked out, she was there over Christmas. The doctor visited on a Wednesday to review the patients and Christmas was on a Wednesday that year. New Year’s Day ditto. So neither ward round took place. By the time the next ward round took place, she was too sick to move and did in fact pass away peacefully in the hospice at the end of January. 

The maximum length of stay might not apply where you are. But I think it’s worth asking. 

I hope you can find your way through this maze. I’m glad to hear your CNS is on the ball 

xxx

Thanks for replies. Yes I think the hospice do not like to admit you until close to death to minimise the time you are there They will liaise with hospital as to when the time is appropriate. With my condition I expect to die in three weeks max once I stop treatment.

To be honest I will now be happy if it happens at the local hospital and I never get to the hospice. My greatest fear is being on my own or being in the big district hospital. 

The hospice have 250 outreach cases on their books and only 18 inpatients beds. So very much a case of greatest need.

Tessa

dear tessa, I think on balance the half way house of the local hospital seems the option most likely to deliver the care you want, as you say you are up against competing forces in regards to admission to the hospice in a timely manner and you don’t want to take the risk of an emergency admission to the big district hospital. As a fellow blood cancer patient I feel for you very much, we’ve both been through similar experiences and I only want the very best for you. I will be here to support you in any way I can as I know you would do the same for me. You come across as a kind and caring person who just wants to find a solution that means what ever happens now you can feel a degree of peace within yourself.

Hello Johnty

Yes I have probably put myself out too much over my life to help others to detriment of myself. Now I want to make sure I have a good death even if the admin inconveniences a few people. But also don't want to burden my good friends who have been very supportive of me. I can see their concern growing so being somewhere 'safe' will ease their minds as well as my own.

Tessa

Dear tessa, just checking in on you to let you know you are in my thoughts. You can never be a burden to your real friends so don’t be afraid to let them help you on your journey, they would be sad if they thought you weren’t reaching out to them as I feel sure you would do the same for them if the tables were turned. 

Came direct into hospice after all

Tessa