I'm not usually one for asking for help in this way but I'm honestly at the end of my tether and would like some words of wisdom and support from anyone who has been there and worn the t-shirt. My husband was diagnosed with stage 3 throat cancer in Jan 2025, after initially being told by his GP that he had tonsillitis. He went through brutal treatment for most of the year and we thought we were coming out the other end alright. But then Feb this year he was unwell again and it seems that the cancer had metastatized to his lungs and spine. He was put forward for a clinical trial for the cancer vaccine at a hospital out of our area but after several visits and lots of lost time they told him he was too poorly for the trial. He's now been started on Immunotherapy locally. He's been told by letter from the Oncologist that his cancer is incurable and he is now on palliative care but we're not sure what that means as nothing else has been put in place. He seems to be going downhill fast with severe pain/weight loss/breathing difficulties/swollen feet/extreme constipation due to morphine/zero sleep. It came to a head today after several days of him crying with pain due to extreme constipation (despite taking max amount of laxitive). We've been in touch with the treatment helpline who told him to get a GP appointment for pain management, advised not to attend hospital due to waiting times. Saw Duty GP who said she would prescribe different laxitive and stronger pain relief, got to chemist and found that pain relief had not been prescribed, only different laxitive, resulting in more chasing up to get it prescribed. Long story short, it just seems like a constant battle to get him any help. He has an appointment with the Oncologist next week at which we will tell all about this. I've needed to practically stop working now to look after him, he's getting sick pay from his work but I'm self employed so can't claim any benefits, money is getting very tight which is adding to the problem. I just don't know what to do now. My health isn't great (treated for long term depression, high blood pressure, tricky menopause, psoriasis) which is being exacerbated by our situation. Apologies for the 'poor me' explanation but any advice would be very welcomed. Should I be asking for more help? What should he be getting when on palliative care? Thanks.
Hi ClumpofSlug
I am Steve, another of the commuity champions and my experience of cancer is via my wife who has Leiomyosarcoma. Been here over 10 years now so not just got the t-shirt but an entire 3 piece suit. Janice's cancer is not curable currently but has been stable for a long time now. Totally get that feeling of things being a battle though and have had a couple of times we have asked PALS to step in and help sort things out.
First off dealing with the benefits front, I wonder if it might help to talk to Ask a Financial Guide either online through that link of by ringing the helpline here 0808 808 0000 - the finance team work Monday to Friday from 8am to 6pm though the helpline itself is open 8am to 8pm 7 days a week. If your husband could get PIP (personal independence payment) then you might get carers allowance.
I know when I first came to cancer I assumed palative care meant end of life, there is a rather better explanation here.
Something I found that helped me was Your feelings when someone has cancer as being able to recognize there emotions and accept them as normal and valid helped me feel slightly less overwhelmed and that was important if I wanted to be the best support to my wife that I could be.
<<hugs>>
Steve
When my sister had terminal cancer pip was fast tracked and paid out pretty quickly ,she's been working,her husband had a business and critical illness insurance they had paid put instantly too but this didn't stop them claiming pip so please look into that straight away.
Just want to say that my mum has Stage 4 stomach cancer and she had a person from the 'finance' side of macmillan which i think had been referred by her doctor and after a conversation has been sent a load of forms for benefits, attendance allowance and carers allowance which i've helped fill in.
Just saying that if you look on the Macmillan 'front page' website there are a whole lot great help here. I also got in touch as we wanted to put a Lasting Power of Attorney in and they were able to direct me to the right place.
There is plenty of help out there just keep on going... its hard i know..
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