Hi. I don’t have a firm diagnosis yet so please excuse me. I had a collapse a few weeks ago and was resuscitated, I’ve been in hospital 11 times since August so already a frequent flyer. The collapse was due to syncope and possible addisons. I had a CT as I hit my head on the way down. They found a 10mm mass in the occipital pole/ lobe according to my discharge papers and I had a MRI just before Christmas (It was booked for 28th Dec but I’m away with friends).
I rang neurology today at the hospital and they are saying that it’s 15 to 20 days for processing MRIs at the moment, the consultant will ring with the results and then book an appointment for me if necessary to discuss plan of action if needed. Surely there will be a delay to the MDTs as well (I think my hospital has them on Thursdays so one will be missed on Boxing Day )
Does that sound about right to what has happened to others ? The neurologist whilst I was an in patient said from the CT scan it looked unconcerning but the MRI was just to double check but of course this will dwell on my mind over the Christmas period.
also I’ve had to stop my arthritis autoimmune immunosuppressant infusions whilst I await the results so I’m in a lot of pain as my last one wore off quite a long time ago.
another thing I’m petrified about especially as I live in a small village with rubbish public transport and my main hobby and part of my lively hood is driving and motorcycling I’m petrified about losing my licence but I know that doesn’t happen to all people
Hi Makva
a warm welcome to the online community. Sounds as though you have a lot going on and more questions than answers. Breathe....one step at a time here.
I can only speak from the perspective of supporting my late husband through his stage 4 brain tumour journey. He didn't take the standard NHS route at the start of his journey and I suspect that may have speeded things up. He had a scan at the local private hospital initially and the consultant reviewed the images and referred him straight to the NHS hospital. This was also during Covid lockdown so things were all over the place on a good day. He had his NHS MRI on 26 Aug 2020, a week later the images were discussed at the MDT and a decision was made not to biopsy, the following week he had surgery to debulk the tumour and the week after that we got some of the pathology results back. At the time that all felt very very fast.
As we progressed through his journey, he had quarterly MRIs and with each of those the results took at least two weeks to come through sometimes longer.
Take this journey one step at a time and focus on the known facts not the what ifs. (Easier said than done I know) If you have concerns and other medical conditions to factor in, it might be worth a call to your GP or the medical team.
This is a safe and supportive space so please reach out here anytime. There's always someone about to listen who gets it, someone to hold your hand or to offer a virtual hug when its needed. You're not alone. We've got you.
It’s always good to talk so please remember that you can also call the Macmillan Support Services on 0808 808 00 00 - most services are open 8am to 8pm, 7 days a week Clicking here to see what is available. This service provides lots of cancer information, emotional support, benefit and financial guidance or just a listening ear.
For now though I'm sending you a huge virtual hug and lots of positive energy
love n hugs
Wee Me xx
Macmillan Support Line - 0808 808 00 00, 7 days a week between 8am-8pm
