My husband has CUP, presented by a huge mass behind his heart and compressing his oesophagus so much that he could eat or drink. Lost over 5 stone!
finally receiving treatment, mass is responding to treatment (shock) NG tube removed now and is eating! Pure miracle!
He was told he was low in magnesium and calcium and given replacements in powder form. Of course it went straight through him, for the past week this has been happening, apparently to be expected. Thing is he can't eat or drink now as everything is either coming up or down! He's like a terrified little boy just wanting someone to tell him what to take or what to do for the best. He is scared that the weight he has struggled to put back on will go back down and he will look like a bag of bones again (his words), this of course then will have a knock on effect on his treatment, leading to this mass growing again..... all of this said at 90 miles an hour! Clearly showing his distress!
Hi Conflict Arm and a very warm welcome to the Macmillan Community but sorry to hear about your husbands CUP diagnosis.
A cancer diagnosis in the family can be such a challenging and stressful time but getting support from others who are dealing with the ‘exact same' cancer type and support challenges will help a lot.
The Community is actually divided into dedicated Cancer Specific Support Groups (Discussion Rooms) so can I recommend you join and post in our dedicated Unknown primary cancer support group. This is a safe place to talk to others who may have a similar diagnosis, treatment experience, to ask questions and get support from family members who are navigating the same support journey.
It will be an emotional time supporting your husband so you might find this Macmillan information your feelings when someone has cancer helpful as well as this link getting help with your emotions, you may also benefit from joining our dedicated Carers only support group where you will connect with others navigating the same support challenges.
To connect in with a group click on the “Bold Italic Links” I have created above then once the group page opens click on “Click to Join” when the black banner appears or “Join” under “Group Tools” (this all depends on the device you are using)
When you are ready you can put up your own post by clicking “+new” or “+” in the top right next to the group title. You can copy and paste the text from this post into your new post.
The Macmillan Support Line is open 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/financial guidance or just a listening ear.
We also have our Ask an Expert section but do allow a few working days for a reply.
Talking to people face to face can be very helpful so do check to see if you have any Local Macmillan Support in your area, do also check for a local Maggie's Centre as these folks are amazing and provide support from all the family.
Do get back to me if you need further help navigating the community but in the meantime all the very best.
