Hi all,
This is my first ever post and I'm not exactly sure what I want to ask or say. Briefly, my husband of 44 has been diagnosed with unknown primary cancer July last year. He had 3 months of chemo and 2 weeks of radio and nothing worked. His cancer is very aggressive and subsequently has spread everywhere. He has now had 2 rounds of immunotherapy which does seem to have shrunk the tumors we can see but just not sure about internally until next scan.
He has lost just under 3 stone and is all skin and bone. Mobility is just about none existent and is developing bed sores on the bottom of his back. We are treating with prescribed creams.
He is so very uncomfortable in bed and can hardly sleep with pain and coughing.
We have tried various mattresses ordered by district nurses and nothing really helps.
So I guess my question is can anyone suggest anything? Even if we have to buy on ourselves.
Thanks in advance x
Hi and welcome to the Online Community, although I am sorry to see you finding us and so sorry to hear about you husband and the issues he is facing,
Any cancer diagnosis brings a lot of stress and confusion but talking with people who are on the same journey can help a lot and will reduce the whirlwind wind that is rushing in your head.
I lost 27kgs during my treatment but did ok during my treatment but you may like to follow this link to Unknown primary cancer Forum where you will connect with people who understand the journey your husband is on. You can ask the folks questions about tests, treatments and what to expect during the months ahead.
Follow the link above and join the group by hitting the ‘Join the Group’ tab just under the main group name. At this point select how you want to receive email notifications when someone answers your posts.
You can either go to the 'Start a Discussion' tab just under the main group name. Set up your own Discussion and introduce yourself to the group - you could just copy an paste what you have in this first post. You can also have a look through the various threads by going into the ‘Discussions’ section.
We also have these forums where you can connect with others supporting family and friends through their cancer journey: Carers Forum and Friends and Family Forum
You may find our various Macmillan Support Line Services to be helpful - call them on 0808 808 00 00 This free service covers Emotional Support, Practical Information. Clinical Information, Financial Support and Work Guidance mostly open 8.00 to 8.00 but check the link.
We also have our ‘Ask an Expert’. section where you can post questions to our mostly Volunteer Experts but please allow 2 working days to get a reply.
Our Online Information and Support Section is a good place to find information covering cancer diagnosis, treatments and pages covering most types of cancers.
Talking to people face to face can help a lot so check to see if you have any Local Macmillan Support Groups in your area or a Maggie’s Centre as these folks are amazing.
When you feel up to it try putting some information in your profile. This really helps others when answering. It also means that you don't have to keep repeating yourself. Just click on YOUR username, select 'Edit Profile'. Put as much or as little in your profile and you can amend it at any time - you can see members profiles by hitting our forum names.
All the very best.
