Every time my husband has a consultant appointment I spend the whole day in a stew.
I am simultaneously hoping fervently for explanations about what is happening and a new plan (which google seems unable to deliver, despite the hours I invest searching), together with preparing myself for the disappointment of no real news or opinion with a wait for the next scans.
This is the second day in a row of such appointments this week - not a lot of work getting done!
We've been doing this for nearly 2 years now (which in a way I am grateful for, because the prognosis without treatment was less than 1 year) but the rollercoaster is not getting any easier - and I never liked rollercoasters any way!
Just putting this out there - I'm sure others will be doing the same!
Hi motherofboys...I hear you and can totally empathise here.
I dread scan and appointments days...and the couple of weeks in between isn't a barrel of laughs either.
My husband has a stage 4 brain tumour ( now tumours) and was first diagnosed in Sept 2020. Like you, I've been riding this emotional rollercoaster for a long time....
By nature, he's a control freak and right from the start he's told the kids and I that this is for him to deal with...yeah right! Our kids are now 22 and 25.
Over the months we've been referred round 10 different hospitals for scans. Kind of feels like we've done an NHS tour. On scan day, my other half gets and anxious and grumpy and it's generally just a long day where no matter what I say or do, it' wrong.
For the week or two in between the scan and oncologist appointment he swings between being anxious and down to being angry and almost spoiling for a fight. I've learned to stay quiet for the sake of the remains of my own sanity.
Appointments are usually video calls and we make a point of all 4 of us being there so we all get the same message. His tumour has impacted his speech, language and understanding so if we let him attend those alone we'd never find out what was actually said. On the odd occasion where he's had even a telephone call or on one occasion where he logged in 2hrs early to the video link and got taken 90 mins early so the three of us missed the call, all he says is "A conversation was had." and refuses or can't tell you what was said.
He hates it when the kids or I comment or ask questions on those video appointments. We've been told to stay quiet and not say anything but of late we've ignored that. He tries to "play" the medical team and says he's fine and fails to tell them of any deterioration or changes. A broken control freak is a very dangerous thing I've learned.
It's all beyond frustrating! We have no plan any longer as the last scan wasn't good so its just time. At the last appointment in Nov we were told to report any changes or concerns into the oncologist who then didn't provide any contact details. I had an email for the CNS and am still awaiting her reply. The whole NHS set up is frustrating me too.
I do sometimes feel I'd get better care for him and more honest updates if I took him to our vet!
It's not easy. It's draining emotionally and physically but you're doing an amazing job here. Hang in there. This rollercoaster ride is a bumpy one.
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
Hi
thanks. I have previously emailed the CNS but she's as much use as a chocolate teapot to be frank. She gave me the number for the triage team and said to call them if I needed anything. The one time I called them they refused to help because my husband isn't actively receiving cancer treatment. We ended up in A&E that day.
The oncologist didn't give me his contact details but when I emailed the CNS as a last resort recently I got her "out of office" which had the oncologist's PA's phone number on it. At least I now have it but haven't had to call it yet.
It really shouldn't be this hard.
take care
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
