Dear all you fabulous people,
I am feeling weak and like I will burst and cry and rail and stomp and panic and just generally not be the upbeat person and kind considerate caring CARING wife and partner I need and want to be for him now. I have been working with the palliative nurses, oncology team and anybody else who will listen to do just this. He NEEDS to go. To address his severe pain that they can't get under control at home with meds, his fatigue and then a weird stomach pain which I can't help but wonder if it's actually being caused BY the medication. He is on soooo much. He is a thin guy anyway, but now down to 10 stone 5 at 5 foot 11 that's not good. And with abdo pain it makes it so he won't eat. He has and WE have tried and done everything they have suggested and now with the immunotherapy he is deemed "stable". That's lung cancer which has metastasized to his adrenals and bones. So if he's stable- then the hospice is a good thing in my eyes, a necessary and hopeful thing for him to get some quality of life. If not, what's the point of all of this? So why do I feel like a complete wreck? He doesn't know this as I am good at hiding this- I want him to be confident and as happy as possible with this decision.
AHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHHhh
I spose it's a good thing we can't swear on here (??)
Ha. Thanks, T.
Hi MamaT
I feel your frustration. it's so hard to try to figure out what's best for them, isn't it? We're no experts. We're just wives/partners who care and just want our husbands/partners to be comfortable and pain free. No one gave us the rule book or the instructions for this, did they? I hope you can have a sensible talk with your team and your husband and weigh up all the options to work out what's best for you all. Even a few days respite care could make all the difference to you both here.
One of my biggest challenges with my husband is that he's a control freak by nature and beyond stubborn. His perception of how he is and everyone else's differs but he can't understand that. In his mind, he's fine. Trust me he's far from fine! He has a track record of trying to "play" his CNS and the doctors without realising he's putting himself at risk. As an example he decided about 14 months ago that he didn't like his steroids so stopped taking them without telling anyone. I was laying them out and he was binning them! When the CNS eventually found out she went through him. He could have caused organ failure! Now my battle is similar with him only this time its the Keppra he's resisting taking. Says he doesn't need it because he's not had a seizure for months but no longer has the mental capacity to appreciate that he's not had a seizure because he's taking the Keppra. AHHHHHHHHHH!
Hang in there. Stay strong. You're not alone here.
love n hugs
Wee Me xx
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