Husband on palliative care

Hi Feelingoverwhelmed23 

So sorry to read this story, being told 3 months to live like that sounds especially hard.

We do have a guide here Talking to children and teenagers and of course it can be very helpful to talk to their school too as then they get a consistent story. There are some good books out their too. We found "The Secret C - straight talking about cancer" by Julie Stokes quite helpful and might be available through your local library.

For you too it might be helpful to look at your feelings when someone has cancer, I certainly found that my recognizing the emotion I was feeling and acknowledging that it was reasonable could help to make it feel less overwhelming.

Do post on here whenever, someone is always listening and we understand how very difficult this time is.

<<hugs>>

Steve

Hi, I'm so sorry to hear this. My husband was diagnosed with advanced liver cancer 7 weeks ago. Diagnosis came totally out of nowhere & found incidentally during a routine ultrasound scan for something else, so, I understand your feelings of your world being blown apart. We are totally devastated. My husband isn't as young as yours (63) & our children are all grown up but telling them& in future, our grandchildren is just so hard. At first everything seemed to move quickly for us but waits between appts has been agony. Now, after being told my husbands cancer is incurable he's been offered palliative chemotherapy, however, despite consultant saying it is 'urgent' to start chemo ASAP we now have a 5 week wait for a 1st appt with oncology MORE waiting & weeks passing by ! Precious weeks we might not have many of. We've been told we won't be assigned a CNS until our oncology appt so we have been totally alone with this. Our youngest son also has cancer - lymphoma & now they've discovered a small bowel tumour too so we're fighting cancer on two fronts. I empathise with your fear, I'm terrified & surviving day to day in a constant state of fear of what's to come. I just wanted you to know that you aren't alone & send you wishes for strength & ease for your family.

Hi Feelingoverwhelmed23,

I am really sorry to hear what you and your family are going through.

My partner is mid 50s and she was diagnosed in January with stomach and secondary liver cancer. We had a glimmer of hope when they said they'd operated and removed the stomach tumour, leaving chemo and a possible liver resection as the best outcome. However, further scans have shown further cancer in the stomach lining. This means a bad outcome as they cannot operate. They will not give us thus outcome until my partner completes her 4 rounds of chemo but it sounds as if we're also talking months.

We only recently told the kids, who are 10 years older than yours, and family the slightly more positive version and now have to go back with the worst news.

I think however you tell them, it's going to be really painful for all concerned. All you can do is be there for people after breaking the news. My partner seems to be more troubled by telling others and the impact on them than what it means for her. In turn, I hate that I can't do anything to ease the burden for people.

I don't know how people care for loved ones as things get worse, and I am dreading seeing her deteriorate. Having been on this terrible journey for a couple of months now, I would say do try to look after yourself too. There are times when I can't eat and I'm certainly not sleeping much at all but I realise that's not going to help my other half.

So difficult - I hope you find the strength!

Very best wishes for you all,

PS67 said:

I don't know how people care for loved ones as things get worse, and I am dreading seeing her deteriorate.

You will manage - it is both a duty, and an act of love.

My wife's deterioration was not pleasant either to witness, or to deal with. But she maintained her dignity right to the end, and we saw it through to the end together.

She died five months ago; I can still hardly believe that it's happened; and, despite her deterioration, I dearly wish I was still looking after her right now.

Best wishes to everybody.

How did you manage to look after yourself? Might help me, Feelingoverwhelmed23 and others? I'm struggling to eat (never previously an issue!)and my sleep is awful. Awake at 2am or 3am most days.

I wish I had some sage advice to give you - but I really don't.

All I can really say - and I know that it's a cliché - is that you do need to try to take care of yourself, so that you can take care of your loved one. But it is difficult. In the final two weeks of my wife's life, we were at home, and I was more-or-less up every night both reacting to events, and phoning for medical help. After my wife died, I suddenly realised that I'd lost one stone in those two weeks (and I was only a lightweight to start with ...) - and I was obviously exhausted.

During the day, my wife's symptoms were generally better - but of course it became a vicious circle because we were both so tired after the nights that it was difficult to get full value out of the days.

Look after yourself; keep eating; keep exercising so far as you can; and make the most of the good times. In addition, if you have local friends and family who can support you in any way (I unfortunately didn't), grab each and every offer that you get.

Best wishes.

PTP - that is sage enough! I think we will all absorb as much as we can as it's such a step into an unwanted unknown. Thank you.

Feelingoverwhelmed23,

Apologies for hijacking your original post but hopefully the advice from others is helpful in some way to you. I wish you the very best in such an awful situation. 

Thanks. As a PS: towards the end of my wife's life, an acquaintance mentioned to me that Marie Curie could arrange carers to sit my wife overnight, in order that I could get some rest. We ourselves never got around to organizing that - everything happened too quickly - but the facility does exist, and it could be worth looking into. See e.g. www.mariecurie.org.uk/.../what-marie-curie-nurses-do

1. I’m so sorry to read this. I think the only thing I can say is just become a pest. It’s not in our nature is it to conflict with medical professionals but for this scenario do so. Pester and pester until you get the appointments you need xx