How my hospice has improved my quality of life

Hi Jane

It's a blood cancer I have too, as long as it stays just above danger level I'm ok but when it drops it'll drop like a stone. I'm having treatment EVERY week so that's over 200 weeks of consecutive treatment. My Haematologist says I'm very lucky in that I'm responding to treatment.

Maybe I'll not bother asking my GP to refer me because the little chat about cancer I've had with my wife has been really about spending my last days at home which if she really wants that, I'm happy to oblige.

I'm trying to look and plan for longer ahead such as preparing my giant vegetable patch for putting up my polytunnel and growing in it next year. My wife isn't very supportive in that because she thinks it's a step too much as I've a spinal problem that puts me in a wheelchair. I've asked her to believe in me, I'm going to achieve my goal in small daily targets.

Good luck with the low stress levels, Jane

Tvman x

Dear tvman, it’s good to hear you are still responding to your treatment, I am on continuous therapy myself but it is in pill form, unfortunately I have dialysis dependant kidney failure caused by the cancer so I have to have 3 sessions of dialysis per week, it’s not painful, just boring and time consuming. However the nurses are wonderful and take good care of me so I have no complaints. I also intend to spend my last days at home but wanted to have the option of being admitted to the hospice if things didn’t go to plan. I think it’s good to have small goals no matter what your prognosis, it’s essential for emotional wellbeing. I try to get out for fresh air everyday even if it’s in my wheelchair or using my walker.

best wishes 

Hi Jonty, I think the main problem is fear of the unknown and if only people will face the fear, they will be rewarded by meeting the kindest, friendliest doctors, nurses, physios, occupational therapists, councillors, volunteers etc as well as other patients in a similar situation to themselves! In fact quite a few times new patients assumed I was a volunteer!

We just have to get the right information out there!

Dear Annette, I agree with everything you say in your post. I always feel like a princess when I’m at the hospice, the focus is on my wellbeing. As patients we are all in the same boat so it’s not necessary to discuss our individual problems in any detail, so conversation is the same as you would have with any group of friends, in other words “normality”, which is the antidote to time spent in hospital.

best wishes, jane

Thanks for posting this. I was very recently (mid Sept) diagnosed as Stage 4, with mets in Liver at diagnosis. Started chemo early Oct. Had appointment with my GP last week and was quite shocked when he suggested referring me to the hospice. He is a lovely doctor though who I trust. He said he thought it might be good to make contact while I am relatively well, and that it would also be good for me to be 'on their radar'. I agreed to it and have an appointment coming up with the hospice nurse specialist who deals with patients from my GP surgery, although they are visiting me at home. My other half was a bit upset saying he was already 'writing me off' and how was I supposed to stay positive. I sort of felt a little that way myself if I am honest, thinking have I completely misread how much time I have left! So this has been a really useful post and thread for me to read. Many thanks to you all.       

Hi Squire78, Welcome to the community! I usually post or reply on the Living with Incurable Cancer Group and only replied in this group because of the subject. My GP said exactly the same as yours about contacting them while I'm relatively well. My husband insisted we were a long way from "needing" a hospice and my GP said its good to get to know the hospice nurse that deals with the surgeries patients to get in her radar! I agreed to a home visit and she was lovely. My husband went out as he couldn't handle it. She told me about all the services at the hospice and suggested the next time we met, for it to be there. As you've probably read, it took me a while to take that step but when I did, I wished I'd made it sooner! It was there I learned that there was a difference between terminal and incurable!    If you are terminal there is no treatment options at all, if you were incurable but offered treatment of any kind ( a Trial, chemo, RT etc) you were incurable but treatable! Meaning the treatment could give you extra time. I know it's a bit difficult to understand all the terminology at first but you will soon catch on. You say you have been offered chemo, that's great! They wouldn't offer it if they didn't think it could work, it's too expensive! The hospice will give you lots of information about how to cope with side effects etc as well as lots more! I attended the hospice weekly while I was on treatment and after I stopped which was for about four and a half years. Now I pop in for a cuppa and go to any events they have. I've just got an invitation for the Christmas Fayre and to go for a Christmas lunch, so I keep in touch but not as regularly now. However I know they are there if I need them!

If you have time and can be bothered you could maybe read some of my profile page. Also maybe start your own too!

Please don't hesitate to ask any questions you like, I am more than willing to answer what I can as I'm sure others will be too. Or call the McMillan Helpline at the bottom of the page! Good luck with your chemo, when do you start or have you already started!

Hi Tvman, I know you are visiting your daughter but thought I'd reply in case you read the posts while you are away!

Whether you decide (or your wife decides) you want to stay in your own home instead of having your end of life care in the hospice, In my opinion you would still be better getting a referral from your GP because the hospice nurses will come to your home to help and support yourself and your wife and keep your GP informed too! I would say you would definitely Benifit by contacting them. Also bear in mind that a lot of people who go to the hospice haven't yet made up their mind if they want to be looked after at home or at the hospice! They can also help with pain management which I know is an issue for you!

Dear squire, thank you so much for your post. The reason I started this thread was to dispel some of the myths surrounding what hospices do. The way I think of my position is that I have one foot in the treatment camp and my other foot in palliative care. The nature of my cancer means that should my treatment stop working I wouldn’t have time to connect with my hospice, so I see it as a kind of insurance policy. I am probably one of the most positive people you could meet but I am also realistic given my prognosis and in no way see my attendance at the hospice as giving up, infact I genuinely feel that it is helping me to live longer by helping me cope with the many stresses my body is under. As long as you have a open mind it’s possible to embrace what the hospice movement has to offer if and when the time comes you need the support. 
best wishes 

jane

Another vote for hospice and good palliative care from me too....

i had asked about the incurable/terminal conundrum.  My consultant patted my arm and said “for you they are the same thing” . Before people are too shocked by this (as I am on a trial), this was good for me as it meant I have engaged with palliative care early and been to my hospice for counselling.  If I don’t respond to the trial my timescale is not long.  It was never something I would have considered otherwise I think.

for me the hospice gives me 2 things - I know I have support if I need it and I know the form that will take and I know I will be safe.  And they will be there for my family and loved ones....and that was as important.  So although the step to engage and get through the door, is hugely tough, you do not regret it in my experience.

Jane thank you for starting a thoughtful thread, Heather xxx

I have to thank the Hospice from the bottom on my heart, for the care they gave my husband and myself in his last days, he was at home for two weeks and i cared for him, but it was getting harder each day i would have carried on, but he asked to go there 

i I became his wife again and spent every minuet with him i even had a bed in the same room and stayed there for the five days until he took his last breath.

They looked after all the family, they where my angels in disguise and took all the pressure  of us all.

We all became the family we used to be visiting 24 hours, we even took the gran kids and the family dogs in it was lovely, we where all together..

Take Care Ellie xx

"You Never Walk A  Lone"