husband has incurable stage 4 oesophageal cancer

Hi Sally, I'm sorry to hear your news. My husband also has incurable stage 4 oesophageal, with secondaries in the lung and ribs. In my (very limited) experience, it is a bit difficult to access full palliative care while also undergoing treatment.  The reason being that while you are undergoing treatment, your body has all kinds of reactions. Palliative care can advise on pain/ symptom relief, but really you need oncology to advise on whether the reactions are too strong, a different treatment should be pursued, etc. So in my experience, palliative care tend to stand back a bit while the patient is still under the care of oncology.

We had an assessment by a palliative care nurse when we were referred, which was amazing. She was able to advise on lots of drugs, get prescriptions changed (for the better) and also do things like advise on benefits and try to get us referred for mental health support. But when hubby became sick during treatment they said he needed the care of oncology team, and they couldn't really help.

We now feel we have to make a difficult decision - whether to pursue any further treatment, or go fully into end of life (palliative) care.

My advice would be to make as many happy memories while you can. Film your hubbie talking to your boy. Enjoy and cherish every moment as much as you can. Keep reaching out to us and others for support, and take care.

Creina

Hi Creina,

Many thanks for your reply. It's been a busy week and I feel I have been constantly on the phone. we have the palliative care nurse coming around next week so will see what she says but I still don't have an appointment with the oncologist for him so we still don't know if he can have any treatment it's a bit frustrating really.

Sorry to hear about your husband also, it's so tough and hard watching them suffer. yes we are trying to make as many memories as possible whilst we still can, just feel so helpless sometimes.

thank you and you take care too, we must be kind to ourselves.

Sally

Hi Sally

Apologies for the delay in responding but I have only just seen your post,

I see you had a lovely response from Creina, but I was wondering how things are now? 

Lowe

Hi Lowe,

thank you for your reply, my husband sadly passed away beginning of Jan this year, just over 2 months after diagnosis. It's been such a tough time and I am devastated. I wish we had more time with him. we managed to get away in December to a lodge with a hot tub, which he loved, he wanted one last holiday with us altogether, he even managed to cook some of the xmas dinner. my heart breaks for our son, who turns 3 next month. He shouldn't have to grow up without his Daddy but he will never be forgotten. Take care,

Sally

Dear Sally, 

I am so very sorry to read your absolutely devastating news, I hope that you know that you can still reach out to Macmillan who will be able to offer help and maybe some advice. 

Reading that you managed to get away, and have a holiday with a hot tub, which your husband loved is a heartening, it must be for you such a lovely memory, but clearly tinged with sadness.. Your Xmas spent together will be with you forever, and one that you will hopefully be able to replay to you son time and again, our ability to gather long term media now is sometimes the thing that helps us as we walk the difficult steps ahead. 

 I do not know if you already have, but there is a supportive forum HERE  I hope that you may reach out there and share with others who are experiencing life without their "Other Half", trying to complete yourself when half of you is missing is not something that you should have to do on your own. 

IF you would like to private message me and chat, feel free, we are all here for you. 

Thinking of you, and of your son, who I am sure will grow to be a proud son of a brave Dad... 

Stay strong, as best you can 

(((Hugs_)))

Lowe'

Hello sally , I’m going through the same with my partner he’s stage 4 incurable oesophageal cancer . His tumour is growing he’s had a stent put in which I’s giving him lots of pain . I feel helple I try my best . He can be very horrible and pushes me away . His moods are up and down . One day I do ok the next I don’t . God knows . Hang in there it’s so hard and frustrating knowing that they can’t eat and you can . It’s heartbreaking  

take care of yourself too x