Living with incurable cancer - incurable patients only

This group is specifically for people with an incurable or terminal diagnosis. Whether you need to talk about dying, or about making the most of your life, you can discuss your feelings openly here.

Medication and palliative care

Kenzie12
Posted by

Well what can I say as much as you hope it will all disappear at some point and you can look forward to being cancer free. It seems that for me that's not meant to be.

I have Breast cancer and now to start 8th treatment of chemo????? I have to ask myself is it worth it ? I feel at this stage, brain is still active I can still get about maybe now with a bit of support and it may take more time get to places. Pain definitely much worse but hopefully with getting the right pain medication in place it wont be too bad. I believe as long as you can get a sleep at night you can manage better during the day.

I am thinking having a palliative nurse in can help both myself and my husband through this next stage. He is very receptive to this idea whereas before he was quite reluctant. I believe we have both reached the understanding that whatever time is left we need to enjoy our time together with family and friends who have been great.

 So the battle continues not ready to give up. I will continue to be positive and reach out to others if they need someone to talk to. Life as they say is to short anyway and I am a young 65yrs old.

Good luck to everyone in the same position as me and hopefully we might have a few years yet xxx.

Kenzie12

 

daloni
Posted by

Hi

Now that I have typed a salutation I am not sure what to say next. I found your words very moving. 

The question of when to say enough is enough is one I have pondered. At the end of my most recent chemo in June I was fairly sure that I couldn’t face it again. But who knows? I’m resistant to the conventional chemo now so maybe the question won’t arise. 

You sound as though you’ve made your decision. I think the idea of having a nurse in sounds very sensible. And you are right about sleep. I just wish I could get a good night. 

Xx

tvman
Posted by

Hi Kenzie

OMG, it sounds like you are ready to throw in the towel. Then I read on and I can sense you're getting ready to fight on. (I didn't mean so many boxing phrases, that is the way it developed).Life IS too short, you, Daloni and I want to be around for a while yet, a good while. 

I have a bone marrow cancer and I have been told that I wouldn't survive a transplant, (I have other unrelated health issues,) but if or when the time comes when it looks like the end is near, I'll be fighting for that chance. All the way. 

I'm an even younger 61, when I was diagnosed in March 2015 at the age of 56 I didn't think I would be around at 60 and when my daughter announced she was pregnant I thought I wouldn't see my grandchild grow up. He had his 3rd birthday at the end of April and although I don't see him that often because they are in Peterborough and I'm in Northern Ireland, I want to see him have many more birthdays. 

Please continue to be positive and help others. We're all in a big club and rooting for one another.

Take care

Tvman x

My philosophy is simple, love life and family.
Green at heart
Posted by

Hi Kenzie,

I hear what you are saying. I'm aware after the month in hospital that I've had (where my oncologist was surprised I was up and walking around (never mind still here)), we just don't know what's around the corner. This has prompted my brain to dislike any negativity if I can possibly avoid it, and usually finding something good in most things. It has stopped me hesitating in and warm interacting with the people I meet, and every of day being quite full of a good feeling. I'm loving this - my son says it's the happiest he's ever seen me. I'm waiting to see what chemo we can try next, but I'm not 'fighting' the cancer, because that feels too negative - I'm just trying to find a better relationship with it using medication.

I'm sorry if I've waffled on about me - but I understand your need to meet this on your own terms, whatever they may be.

Warm wishes for a peaceful future x

daloni
Posted by

Hi

I love what you wrote. My strongest allies in my journey with cancer are gratitude and compassion. Have you seen the three good things thread on this forum? There’s always something to be grateful for and actively seeking it out and writing it down helps me enormously 

xx

Green at heart
Posted by

Hi Daloni,

Thank you for you kind words.

I have seen it and love reading it. I find right now I have so many wonderful nominees every day isI'd be pushed to select just three. I have spent my whole life being afraid of interacting with people, and now it is what makes my World sing. I feel extremely lucky really, in all respects, given much longer I'm here for x

anndanv
Posted by

Hi Kenzie, I've just read your post and replies to this thread. I don't get many notifications but I've found it now!

I think getting a palliative nurse to help is a good idea! They are not only there to help with end of life situations but also to help with pain management and to help you live happily for however long you have. Now this could be years, as Tvman has said, I was diagnosed in 2013 and all I could think about then was funerals etc! I'm over that now! I just live every day and enjoy it as best I can. Like everyone else here, some days are better than others but I always, like you, have lots more than three things to be grateful for so I don't contribute much to "Three Good Things" but always read them all and enjoy it! I hope they find something that works to give you many years to come as they are developing new treatments every day! Where there's life there's hope! That's one saying I like, another is        Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!

Love Annette x

anndanv
Posted by

Hi Kenzie, I've just read your post and replies to this thread. I don't get many notifications but I've found it now!

I think getting a palliative nurse to help is a good idea! They are not only there to help with end of life situations but also to help with pain management and to help you live happily for however long you have. Now this could be years, as Tvman has said, I was diagnosed in 2013 and all I could think about then was funerals etc! I'm over that now! I just live every day and enjoy it as best I can. Like everyone else here, some days are better than others but I always, like you, have lots more than three things to be grateful for so I don't contribute much to "Three Good Things" but always read them all and enjoy it! I hope they find something that works to give you many years to come as they are developing new treatments every day! Where there's life there's hope! That's one saying I like, another is        Yesterday is History, Tomorrow is a Mystery, Today is a Gift!!!

Love Annette x

bellabongo
Posted by

Thanks for posting guys, it is helpful. I am struggling with my health just now. End of August I am starting chemo again. I do appreciate the help I have - Macmillan nurse, district nurses, counsellor at the hospice. They all help in different ways.

On a different note, we have created a Japanese garden out my back, and are turning my summerhouse shed into a sanctuary. Maybe this will help my head and soul. 

Take care y'all

Lot's of love

Alison xxx 

daloni
Posted by

Hi Alison

It is so nice to hear from you! I’m so sorry your health is a struggle and that you’ll be having more chemo. 

Your Japanese garden and sanctuary sound just lovely. 

Lots of love 

xxx

anndanv
Posted by

Hi Alison (Bellabongo) It's good to see you post here again but I'm so sorry you are having to have more chemo! Let's hope it works it's magic! I agree that the hospice is a great support, my local Marie Curie Hospice has been a God send!

You will need to take and post a photo of your sanctuary and Japanese garden! They sound like just what the doctor ordered! Enjoy them!

Love Annette x

tvman
Posted by

Hi Alison

Good to hear from you again, although I am sorry to hear that you are going through chemo again and I wish you all the best for that. I agree with Annette, the help from different bodies are so helpful.

I would love a Japanese garden, some small acers,  a little bridge over a little stream. I'm not sure if I can manage to make one, the pain may be too great but I'd love to have a go. But yeah, a photo would be great. I have a man shed, my garage, and I have spent many hours out there, drilling, sanding, having a beer or two! I switch the radio on and just lie back and relax. It's good for the soul. 

Take care Alison and we're here for support for when you are going through your chemo.

Tvman xx

My philosophy is simple, love life and family.