Supporting someone with incurable cancer

For carers, friends and families of people with a terminal diagnosis to discuss their emotions about the prospect of losing their loved ones, as well as practical issues about palliative care and end of life.

A good day

NellieJ
Posted by

Funny how small things make a really good day. My partner who is realistically in his last year of life  went away with a friend on holiday in uk. Has had two good days watching boats and eating and able to taste  lobster oysters and all the seafood they can. Sounds relaxed and contented. Very different from last weeks agony opiates & despair. So I m cheerful because today they're enjoying what they are  still able to do.

We do better giving each other a bit of space and are kearning to make room in our relationship for cancer as the uninvited third party that unfortunately is going to call the shots. But in the meantime can't let it rob either of us completely, and getting taste buds back after head and neck radio is a real bonus.

I'm better for two days on my own and  have learnt to back off a bit and try and contain my worryand urge to fuss (he's lost 7 stone this year).  So today we've got cancer in third place. 

Sussex
Posted by

So pleased for you NellieJ.

I arranged friends to spend time with Julie for weekends, gave her a change of company and gave me some respite.

Hope you feel recharged and love the fact that you have slapped cancer into 3rd place!! Brilliant.

Elliekate
Posted by

8 years on Thursday I was given my incurable diagnosis. I have just had a lovely overnight away with my daughter and some dear friends. My husband who is my main carer has started playing golf once a week with friends to give him a break. I realise I am very lucky and cherish every minute of doing what I can when I can xx

Meg Mac
Posted by

Hi NellieJ

Its wonderful to hear these stories and how even small things can make such a difference.

It gives me hope for my Dad who has Pancreatic cancer, he is having palliative chemo but is doing very well despite a poor prognosis.

My daughter gets married next June and I am trying to focus on getting him there - it may be pie in the sky but it’s keeping me going for now.

Thankyou all, you’re amazing!

mm

NellieJ
Posted by

Heartening to hear others  and helps me appreciate hanging onto tiny things.  I'm also content in third place a fair bit of the time. My partner and cancer have so much to sort out with each other that I need to make sure I give space to him coming to terms with dying, probably before  the year is out.  

Today is a good day because he has a friend over talking motorbikes not cancer. 

NellieJ
Posted by

Another good day.  The end is getting closer - we now have hospice at home nurses and are doing end of life planning and he's getting weaker. However, yesterday was another good day. Having not been out for a couple of days he felt strong enough to go out on his motorbike (me on my vespa scooter). An old friend of his popped in and they rattled on about nonsense. Positive planning about getting life insurance and death in service work paperwork done, just enough to feel organised without it being too morbid, and it is helping him to know that he is trying to leave things orderly for me.  And on top of that he's building a viking long boat model which is some Nordic thing they did sending people who die out to sea in a burning boat. I am astonished and in awe at his dignity and courage in facing death square in the face. Cancer defiantly in third place yesterday and today, even though it is going to end up with in first place with the gold.  

Sussex
Posted by

Hi Nellie,

So pleased to hear about a special day you have had.

People spoke a few times about Cancer winning and beating Julie (she passed away in January) - but I disagree...

It took her life but nothing else - it tried to beat her down with awful treatment, left her little body somewhat mutilated with operations, gave her pain and all of that - but it never took her dignity, never took away from her who she was and wanted to be - the best Mum, the best Daughter, the best Partner and the best Friend.

Sounds to me like your hubby is going to deny cancer the victory it seems to crave and I for one salute him!

Every blessing to you both and use your camera all the time.

Much love.

Rob.

NellieJ
Posted by

Sussex, thank you and I have mixed feeling about the winning/loosing/battling terms.  Your posts are very touching and heartening that people can come to a point of accepting what is going to happen without giving in or feeling a Looser.  There is still anger for him and resentment towards the living and tears when he thinks about me and his boys.

There is  fear for me about how and when he is going to die.  He did joking suggest that he practices dying and pretends to be dead around the house to give me a few rehearsals -  I nearly found that funny it was such a shocking idea.  I do apologies if that upsets anyone. 

What astonished me is that he can put some of the raw emotions aside and  still be curious about what it will be like and wants to experience it  "I've never died before and I wonder what it will be like."  A big factor is that he has decided that in the last couple of days he wants to be in the hospice as we had a tour and he felt "safe to let go there when the time comes".  Plus there are people there that know what they are doing.  His job is to be good for a long as possible then let go. 

He used a phrase that he feels like hes getting ready to off a high place but it wont hurt and he wont feel the landing. 

We have been told that the most likely way is that he will go into liver failure and maybe then go fairly quickly so every day and week is  a bonus. His son is due to get married 21 Oct and they have been told it is unlikely that he'll be here then. 

I do find the anticipation tricky and  I seem to have made myself cry typing this.  

Ww123
Posted by

Hi your hubby sounds like a lovely man and so pleased he is able to do things and have a good chat with you ...like you my hubby has head and neck cancer had radiotherapy chemo got all clear came back few months latter had a lot off surgery ..came back in march now in his skull ..been on immunotherapy but not doing to well ...in and out off hospital and in hospice for pain management ..it's all so very hard Was just wondering if your husband gets a lot of secretions as mine is really bad with them ..struggling to breath at times but he says he still has a lot of fight ...x

NellieJ
Posted by

Ww123. Your situation sounds very similar. The ups and downs. Hope after the treatment seems to have worked and the crash when then told no,its terminal. Radio on throat knocked off his saliva glands to he has very dry mouth rather than lots of secretions. He is chesty and breathless but that from secondaries in lungs now.  Some days he can't get  to the end if the road. I hope your partner can get some  break from pain.

Aside from that it was a real bonus when his taste buds came back and he could enjoy food again. So good days sometimes involve food,  although with less spit he is still chewing and finding bits of food tucked in his mouth and throat hours later.  He has always enjoyed food and flashed his money about yesterday and bought himself 9 oysters. 

Making the most if each day is a good lesson I am learning. And seeing end of life care as a positive is something I am also learning. Having ga chance to make the most  of time left is something others don't get. His eldest son died 12 years ago  very suddenly abd tragically and he would have given anything for more time or a run up. 

Ww123
Posted by

Hi thanks for getting back to me so sorry to hear about sudden death of his son must of been a massive shock for all his family ...glad you are taken each day at a time ...we are a bit like that but so very hard so ment up and downs ...my husband can't eat or drink got a peg in for overnight feeds and med and his voice is so weak ...can't believe what is happening to him ...goes to hospital tomorrow and we will find out if they are going to carry on with his immunotherapy treatment x

NellieJ
Posted by

WW123 -  thinking of you today. It must be hard for you to bear witness to his situation and for him to be in it. One foot in front of another..... take care of eachother. 

lthenderson
Posted by

NellieJ,

For all my life, I always said I wanted to die at home probably mostly because that was my parent's wishes as well. So when my mother was in her final weeks of life last year, we worked to honor her wishes. We did. She died peacefully one morning with me by her side holding her hand and as the funeral home were putting her body in the hearse to take away, we stood outside and watched the most spectacular sunrise I had seen in a long time. 

But it really played a toll on the family. I spent nearly three weeks, all day ever day, with my dad and brother taking care of my mother as she lost her ability to move her body. The home hospice nurses were great, but they weren't there all day every day like we were. Later the day my mother died, we went to the funeral home to plan things and then went back home. I was so exhausted emotionally and physically that I laid down and wanted to sleep for the next few days but with all the people calling, stopping by, etc, it took me weeks to catch up to where I felt normal at least physically again. Not only did it effect me, but it effected my wife, my kids and those around me. 

This is a long way of saying, I have changed my desire to die at home and want my loved ones to let me go in a hospice house setting where they can still go home and not have to be with me all day every day. It was a extremely physically demanding experience and I don't wish to go through it again anytime soon. 

Best wishes

NellieJ
Posted by

lthenderson, Thank you for this, I found it really  helpful. I think the decision (when the time comes) to aim for end days in a hospice is something that we have both arrived at having been thinking it backwards and forwards. Your experience with your mother is very powerful and having been through that and writing about it has really helped me view him going to a hospice is part of me being able to still function and have space to come and go.

Initially I said that I wanted him at home because of my fear about not being  with him. Now I know that the dogs will be welcome at the hospice I am easier in my mind. Our house is tiny, a two up, one down terrace with  a cant  swing here kitchen and front door straight onto the pavement. The previous idea of having him at home with a bed downstairs if he goes off his feet seems tricky. I could imagine it feeling crowded and then visitors on top.

So you have really helped me see that I can be better for him and his boys if I can retreat home and he can relax. I also see that this is probably part of me having to come to terms with him dying. Like a zip coming apart from the bottom, we have to become separated and will go separate ways.

And today it all seems a little way in the future - another good day - they have given him a 'bump up' with steroids and he's been out gallivanting around on the motorbike yesterday for an hour with a Morphine chaser afterwards.  

I  can take the good times better knowing the planning is in place for when the end line gets nearer.  Every day where he can feel the sun on his face is a bonus and today he sat watching a dragonfly. For him, that is making the most of every moment. I remain in awe. 

Thank you again for posting your experience, you may never know how much it means to me, but it has changed my thinking and given me a big dose of reassurance and permission to feel OK about it.   Also he was always a sucker for a Premier Inn hotel and the hospice rooms are much more spacious than home, with staff that know what they are doing.  

Wishing others enough of A Good Day whatever that looks like.