Feeling helpless

Hi GemD84, I'm so sorry you're going through this. Could you have a word with your husband's CNS nurse - a phone call? - before his next appointment and tell them what's happening? Hopefully they could find a way to encourage him to take pain meds regularly. Sending love and strength. xxx

Hi GemD84 

it’s so hard isn’t it, with husbands who are stubborn! We are at the start of my husbands cancer journey - classical Hodgkin’s lymphoma, started chemotherapy today. He too won’t tell anyone anythingand gets cross with me if I bring it up. I’m taking a break in the cafeteria at the moment as he’s mad at me for telling the chemo nurse that he felt hot after one of his drugs, but at least she bacd me up

I second the above, about having a chat with the clinical nurse specialist. Or we also have a macmillan support worker that I can approach, might be one in your care team? My husband was in hosl for 2 weeks, in agony overnight with bone pain (it’s in his bone marrow in his spine) and refused to press the nurse buzzer ‍♀️so I feel you. Sending you hugs and strength xxx

Thankyou for your reply i could message his nurse but he is stubborn and I no he won't listen. He won't do anything he doesn't want to do and I no i should respect that but its so hard when he's in pain xxx sending lots of love and hugs back at you it is hard x

Thankyou for your reply and I think we're definitely in the same boat my husband had a lung resection last year and was the same about pressing the buzzer even the nurse said to him please be honest if your in pain as we need you to be able to take really deep breaths before you can go home and if your in agony you won't be able too! He gave in in the end and was out in under a week he hated it in there! It is hard when there stubborn. Sending u lots of love and hugs too think we all need a hug xxx

I’m so sorry your going through this, I’m in a very similar situation with my husband, stage 4 colon cancer that’s spread to multiple areas in his stomach, he’s on palliative chemotherapy,  he eventually told our children (teens so a bit older than yours) but tells everyone including the oncologist that he’s doing ok but in reality he’s in a lot of pain every day, I sometimes feel frustrated because it’s hard to get support when you don’t feel you can be completely honest because trying to respect their wishes, some days I feel very overwhelmed and under qualified to help him without help, he won’t tell anyone the cancer is advanced and not cure able,  I’m scared of the future but I try to take one day at a time, a nurse said to me being anxious about tomorrow just steals time from today so I try to remember that when feeling out of my depth. I’ve called the macmillan help line a couple of times and they have been extremely helpful so I’d recommend speaking to them for advice.  

First of all sending you a massive hug because it's so tough ️ thankyou for your reply and I will definitely call the macmillan help line i just no talking about things makes me break down and that can be so hard! It really is hard watching someone you love in so much pain and everyone is oblivious to it because I no my hubby puts on such a front to everyone especially the oncology team and his family and friends they all think he's doing great when in reality his cancers progressing and all he does is sleep all day and he's in so much pain its breaking my heart. Xx