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 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 and a very warm welcome to the Macmillan Community but I am so sorry to hear about your husband’s journey to date.
I know from experience having been on my cancer journey for over 26 years with two very rare, hard to treat types of Non Hodgkin’s Lymphomas (one incurable), Asbestosis and Prostate Cancer that navigating this journey can be such a stressful and challenging time but talking with and getting support from people who have walked or are walking the ‘exact same' journey can help a lot.
The Community is actually divided into dedicated Support Groups (Discussion Rooms) and when it comes to the practical and emotional challenges of supporting your husband and indeed yourself you may benefit from joining and posting in our general cancer……
Supporting someone with incurable cancer
……. support groups where you will connect with a wide range of members navigating the exact same support challenges.
To connect with a group click on the “Bold Links” I have created above …… then once the group page opens click in the [Black - Click to Join - Banner] that appears at the bottom of the page and this will then confirm that you have joined the group.
When you are ready……. you can introduce yourself by putting up your very own post by clicking [+ Create new post] or [+] in the top right of the group page.
You can copy and paste the text from this post into your new post.
As always the Macmillan Support Line is open between 8am-8pm (timings may differ across services) 7 days a week on 0808 808 00 00…… this service provides cancer information, practical information, emotional support, benefits and financial guidance or just a listening ear.
Talking to people ‘face to face’ can be very helpful so do check to see if you have any Local Support in your area, do also check for a local Maggie's Centre as these folks are amazing.
Do get back to me if you need further help navigating the community.
