Scared ...

Dear sorry to hear about your fatigue, it’s the bane of my life. I don’t have solid tumours like you, but I have left my body to the medical school after I pass away, apparently you can help up to 10 million people as it’s like throwing a pebble in a pond the ripples of the impact just keep spreading out to help others. They have a memorial service every year that relatives can go to give thanks. Below is a short bbc film if anyone is interested in doing the same. It gives me great comfort to know my life hasn’t been entirely wasted and I can die knowing I have made a contribution to research, especially as my disease is incredibly rare. It’s obviously not for everyone but it’s good to break the myths about these things for people who might consider it.

https://www.bbc.co.uk/programmes/p07rphsw

Hi Jane

Thanks for that. What a lovely film. 

The discussion with my doctor was interesting. I reported to her what my daughters had said and she said it was often the case that children were supportive but that husbands (she works with women) were often not. She said they’d had instances where people had signed up to the Peace programme but hadn’t talked to their families at all, with the result that permission was refused at the last moment. 

The other heart breaking thing she told me was the impact of people not talking about their deaths. She said it’s so hard as a doctor to see a woman, maybe with young children, refuse to accept what’s happening to them and plan for it with the result that there are no plans for what happens to the children. She said there’s only so much she can do to encourage her patients to talk about death and of course has to respect their feelings but it’s so much better for everyone if patients can be open, able to talk and plan. She said I am unusual in being so open. 

Xx

Dear tessa

having read about your hospice decision i think you sounded relieved and you now hopefully have a path mapped out , it is always difficult to make such large decisions ,but so many people and families speak so highly of my local hospice that i would definitely think about this for my end of life care

i am so sad that you feel lonely , are you able to say where you are in the country? 

I have been thinking of you and feel for your loneliness, please remember you don’t know the people on this group physically but we all understand and send the kindest most positive thoughts for peace 

janet

xxxxx

Daloni 

thank you for sharing the peace project info 

i will look into this and discuss with my family

i hope you are feeling a bit stronger and puppy walking is keeping you active ,i have a large family but my dog is myday to day walking buddy ,i just adore him 

positive thoughts

janet

x

Hello @Jonty this is mainly a reply to your post about difference in approach between haemotology and hospice. I'm finding it rather the opposite at the moment. Haemotology doctors are saying they respect my decision if I feel it's all too exhausting to continue.

Hospice contact on phone this morning seems to want me to hang on to bitter end. She said shout when I'm ready and I said I've already shouted. So she is coming to see me in a week's time. A week seems an age to get through when you are not sure if you can get through a morning. At least I've now got a few neighbours lined up to visit on certain days.

Tessa

Dear tessa, I haven’t met anyone at my hospice with blood cancer so I think there might be a level of ignorance involved about how quickly things can progress once you stop blood transfusions or platelets, so you might have to impress on the nurse who visits you so she understand your dilemma. I have kidney dialysis dependant kidney failure as well as my leukemia and when I stop dialysis I could live 1 week or four weeks by when 95% of patients will pass away peacefully. In your case I suspect it’s not that simple but from what you have described in terms of symptoms you are on the verge of crossing the rubicon. It’s sad you have to shout to get what you need but it’s what I had to do to get any kind of support. We are much more likely to die in hospital than other kinds of cancer patients, mainly because of not having palliative services integrated into our treatment plan.  

Hello @Johnty. Your experience seems so different to my limited one. I felt my palliative nurse  is fully aware of how quickly I may go down and is  trying to impress it on me. I think she feels as long as I can get hospital treatment and feel a bit better in between then I should keep going. Maybe she is right.

A gardening friend has offered to get some early flowering plants so I can see them from the window before my own bulbs come up. I have some empty containers and bags of compost. After lunch and a nap I walked down the garden. It felt a nice spring day. I found some more suitable plants at the bottom of the garden already potted, as they were waiting to go into said containers. My regular gardeners are coming Tuesday so they could set it all up. Sounds like a project that would give me pleasure over the next few months. Doesn't sound like someone planning to give up life just yet.

So I've really confused myself now. Is waiting for a pot of bulbs to flower enough motivation to get me through all the really bad days. I don't know anymore.

Tessa

If anyone still has the patience to follow my roller coaster of emotions... don't worry if not, it is helping me immensely just to write things out and clear my brain.

Yesterday I truly was in mental crisis and wanted to know things would come to a swift end. Felt like I was making a rational decision based on medical evidence. I'd lost confidence that hospital could keep me feeling well between visits.

Was upset when I felt palliative care nurse of all people didnt seem to acknowledge depth of my despair. But have got through the day feeling its physically bearable, managed to feed myself and now have something (if pretty trivial) to look forward to.

Maybe palliative nurse has done right thing giving me a week 'cooling off' period. Maybe my visitor just hit on the one thing to uplift my spirits. Maybe the weather was better.

Guess I have to see what the week brings. I don't want to reverse all my decisions based on one good day any more than I wanted to make radical decision on one bad day. It's not really a reversal just a delay as the time will come.

Reading your various comments I can see that several of you have been down this dark tunnel and out again maybe more than once. It's a new experience for me. So perhaps  have to learn that this is something that is all part of the path of the illness as much as the physical changes.

Thanks for hearing me, I think that's what I needed most.

Tessa

Dear tessa, it’s totally understandable you feel very conflicted about what road to take, it’s the survival instinct kicking in. Whatever decisions you take from now on are ok, as long as they are informed ones, which I think in your case is true. Blood cancer can be very unpredictable and you can still have good days even towards the end, but the trajectory remains the same. In my hospice the average end of life admission is usually 2 to 3 weeks, so it’s not a case of being admitted weeks ahead of time, so I understand what they are saying about you being able to leave things near to the end if you are still receiving platelet support. The most important thing is you are firmly on the radar, and every one concerned with your care understands your wishes. You can’t really do much more than you have, so my advice would be to just reassess things each week and look for a consistent pattern of decline despite the medical support from haematology and make your own decisions. I’m currently relapsing so do understand what you are going through, I’ve had 18 months in limbo land and have relapsed 3 times in that period so have had to think quite deeply about the things we are discussing, there’s no easy answers, all I’ve done is prepare for all eventualities.

Hi I’ve not been replying as I don’t really understand blood cancers & how quickly things can turn so can’t add the help that can but I am listening & here for you. I hope the advice the palliative nurse gave plus all the other thoughts burring around in your brain plus the hospice visit next week will gradually introduce some clarity into your decisions, big decisions take time and that’s ok.

hope you are doing ok and managing through the relapse, again not something we have in mine (or is it recurrence) but anyway just hoping you are ok.

wishing you both the best today ladies as we batten down the hatches for another storm

love heather xxxx