Husband has had a 6 week delay between carboplatin treatment as his platelets were just too low. Im increasingly concerned that’s he’s very very confused at times and getting lots of things wrong. He’s also shuffling along , I think they call it drop foot. He also seems to have stopped using his right hand side and needs to use the bathroom with increased urgency and actually today he didn’t make it in time which was heart breaking ….. however when I message the nurses they say oh he seemed fine when we saw him for treatment and we don’t think he’s confused at all.
Obviously they wouldn’t see this in 1.5 hrs I was beyond irritated. I’m having to really push these symptom updates to try find out what it could mean and what stage we might be at as my husband will not accept he may not be able to beat this. And I’m trying to make sure we are as ready as we can be for a turn for the worse. We also have two small kids.
anyway if anyone has any feedback at what stage their partners seemed like this I would find it very helpful
We are due a scan in 3 weeks
thanks
HI Dek
glad you were able to vent here. That's part of the reason we're here.
To echo what Sulubee said, the urgency/incontinence is a red flag as is the lack of use of the right hand so I too would say to give the nurses a call and explain what you are seeing day to day. As you say they only see him for a small window of time and if he's anything like G was, he'll be putting on an "act" for them to hide how things really are.
I wasn't sure from your post- is it the community nursing team or the CNS that you are in touch with? If its not the community team, I'd also suggest asking your GP to loop you in with them and potentially introduce you to the local hospice community team. Those local to you are your best support network- at least they were for me. It doesn't mean that anything is imminent but it gives you time to get to know these angels so that further down the road you are not dealing with strangers.
Don't let the nursing team put you off calling out changes/symptoms that you are concerned about. If in doubt, call it out. They are the experts here and are the ones best placed to advise if it is something to be concerned about. We're carers not doctors/nurses and can only do our best here in very difficult circumstances.
Remember you're not alone. We're here for you.
Sending you love and light and hugs and lots of strength. You're doing great here.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Oh Dek, I don't know how many times I wished for a crystal ball. I feel for you.
For what its worth, being passed into the palliative care phase for us was one of the more positive aspects of the journey. It lifted a huge weight off my shoulders because I then had a number I could call 24/7 and know that someone on the other end understood and would help me. It also meant when the time came almost 8 months later that we were surrounded by people we knew and who knew us and not people who were total strangers. That made such a difference to us as a family.
One step at a time here. Take each day as it comes. It's a tough journey but you are doing great her.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
