My husband is refusing review CT scans. Says he’d rather not know…

Not really a helpful reply I suppose . At the moment I wish I was getting more scans. After quite a period of all ok I have had a few side effects meaning stop start immunotherapy.,my last scan a few weeks ago showed I had developed a pulmonary embolism on top of everything. Its possible I could have dropped down any moment but for that scan, now on blood thinners. I think it is always worse for our wives or husbands who have to watch and will be left eventually but I guess it has to be our choice how we handle our illness. However at the same time if my wife wanted me to have the scans so she knew what was happening and that made her feel better I would do it I think. 

Thanks for taking the trouble to reply. My worry is that my refusing the scans we might miss something like your pulmonary embolism. I’m hoping our nurse may be able to help him see that the potential benefits outweigh the negatives 

Hi again, just to add, apart from the discovery of the embolism I was also told my tumour was grossly unchanged since last scan which was good news. Of course it could have been the opposite which I assume is your husbands fear. Such a difficult one.

Thanks again - and all the best for your continuing battle with this horrid disease 

Hi, there

I can understand somewhat how your husband feels. I think its quite natural to not want to know. We each have to do what works for us. My husband wants to know and if the Immunotherapy isn't working he will try something else and cut out of it. He said he wont do anymore than the first three then see the scan and if its growing more he wont continue. 

its a worry either way and each of us has to do what feels right. You never know what could happen, he could suddenly find it stops growing as that happens sometimes. I think its good not to be a worrier as that can make matter worse. So I can understand your concerns. 

I have suggested my husband have some hypnosis as it may be calming but he says he feels calm and its likely me that needs it. So I go with whatever he wants. 

sending love and good calming energy down the internet ether to you and your husband. XS

Thanks for taking the time to respond. It’s so difficult because my way of coping is to know as much as possible about this horrific illness, which is the opposite to my husband.  I’ve suggested he continues to have the scans but ask them not to make contact about the results in terms of whether the cancer is growing and at what rate, but to let him know if there is anything else they’re concerned about (like the pulmonary embolism mentioned above) as a sort of compromise. In the meantime we try to make the most of whatever time we have left.

wishing you and your husband all the best on this nightmare journey x

Dear JMK, thank you for your reply. My heart goes out to you and wish that things go well. We never know what will happen in life and things can turn on a sixpence. I like to keep hope in my heart but know just how bad this disease is. I, like you want to be with my husband as much as possible and to take in everything about him. Notice everything that we often take for granted and be in every moment and know it. The house can go to pot and the garden and even my work. I just want to look at his lovely face and be with it. I take in everything and feel I am lucky to have it, like you do. It is so hard and I faulter and fall down at times but get up and try to be the best I can for him. We laugh and have cried together. Now we are going for a walk. I have had him for 55 years and I am still hungry for more of those years. We met when very young. I know I am lucky to have such a love and I treasure it. Always will. XS