Really not sure how to whip up any positivity about my husband's treatment at the moment ...
He's only in discomfort rather than pain, at the moment, but cannot do any of the things he loves, just sits in front of the TV.
I went in to see his consultant yesterday with 4 main issues he's dealing with at the moment. Only the consultant wasn't there (possibly holiday - can't really blame him for that, though advance warning and an idea when he'll be back would have been nice) so just saw his Cancer Nurse Specialist.
Result was a couple more prescription items, on top of the couple of over the counter ones we were recommended the day before, and two referrals to other specialists. This just confirmed in me the feeling that his team is getting out of his depth with the number of different issues my husband now has (either as a result of the disease or the treatments). It also made my heart sink because it means none of these issues will resolve for at least 4-6 weeks, given our experience that a referral means, at the very fastest, a minimum of 2 weeks to get an appointment with the other specialist, followed by the requirement for some sort of scan a week or two later, then another appointment before treatment is chosen and starts...
It feels like we are stuck in a holding pattern. He is receiving treatment and popping pills constantly, without improvements. I am just waiting for a new emergency like a blocked bowel, heart attack or stroke to move us into a different kind of treatment - which is a dark place to be, but I really don't think I am being unduly pessimistic.
Oh Motherofboys, this journey is oh so frustrating. I hear you. I've no magic words but just wanted to reach out to let you know you're not alone. We love them and just want everything that needs done to done instantly. Sadly it doesn't happen this way.. Take a deep breath. Pause.
You commented that your husband isn't in pain. That's a key thing here. Yes he perhaps can't do the things he loves but take some small comfort from the fact he's not in pain.
We're travelling a similar but different road. My husband has a stage 4 brain tumour, and we're almost 5 months into the palliative care phase. Physically he's still doing ok but his eyesight is really poor these days due to the tumour compromising the optic nerve. Mentally/cognitively here's not great. His symptoms are more like dementia. He struggles to follow conversation and can really only watch things on tv that he's already seen as he can no longer follow a new storyline but he's not complaining of any pain and that's the key thing.
Long may that continue. I've been advised the end could come quickly due to some of the recent changes we've noticed and is likely to be a seizure or stroke but there's no point in trying to stop him doing what he wants to do. Carpe Diem. My heart is in my mouth every time he goes out or every time I'm out but worrying about what ifs isn't going to change anything and I reluctantly accept that.
I hope you get the appointments/medication that's needed sooner rather than later.
Please take time to take care of your wee self here too.
sending you love and light and hugs. Stay strong.
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
