Recurrence?

HI GF92

please try not to panic about this tiny change. I know that's easier said than done. 

They said something similar to us in June 2021 after a routine maintenance  MRI. We were told this new "thing" was about 5mm. When I asked after the next three monthly scan my concerns were dismissed and I was told that there was nothing to worry about . There was no further mention of re-growth in our case until October 2022. At that point we were told there was a 1cm fresh growth and things progressed from there to where we are now. 

If the team had been overly concerned they would most likely have done another scan after 6 weeks to get a defined time period to judge growth over. The fact they haven't suggested that is something I'd take as a positive. 

It's also worth remembering that the first scans after radiotherapy ends can be slightly misleading as there is still post-treatment inflammation present and the area of the brain is still recovering from the treatment itself. 

Keep an eye on him and if you see and changes that concern you, call the CNS or oncologist but otherwise try to stay calm and wait for the October scan. 

This journey is an emotional rollercoaster ride and you'll bounce from scan to scan throughout it. 

Sending you a huge virtual hug and lots of positive energy. Stay strong.

love n hugs

Wee Me xx

Hi everyone

About a month ago we started to notice my dad using wrong words in sentences and switching syllables round .. like ‘walford’ instead of ‘Waldorf’ for example… so we started thinking that something was changing. 

Over a couple of days a few weeks ago he suddenly became really confused, much like he was the first time he was diagnosed, so obviously we were scared and took him to a&e where he had a CT scan. He was really muddled, and was upset not knowing what was wrong with him. He was saying his car had been stolen and he needed his passport for his work trip to Northern Ireland (obviously concerning because he hasn’t worked in over a year or driven for 2). When my mum went out the room he was whispering to me that he thinks my mum is trying to kill him. :( Our jaws dropped to the floor when a doctor trotted in and told us the CT looked fine. They rang dads neuro team at a different hospital and they said he needed an MRI with contrast. He was in for 8 days and they ‘couldn’t get a slot’ for him, which was a huge disappointment. My mum ended up taking him off the ward to his planned MRI at the other hospital so that he didn’t miss that one too. 

In the meantime they ramped up his steroids and the confused settled back to his ‘normal’ and he came home. We were due to get his results this Friday, but yesterday morning he had a big seizure coming down the stairs. He’s got a brain bleed from the fall and a broken eye socket, and as of yesterday is incontinent… He’s really struggling for words now and everything suddenly seems quite serious. My mum rang and got his MRI report over the phone and exactly as we suspected, it’s back :(. A new 2.5cm tumour and several areas of activity elsewhere. We felt like we were going CRAZY when the CT Dr said he looked great..: we just KNEW it. 

I’m so worried to see him today because I don’t know what I’m about to walk in to. I’m worried this is it now and he might not have long left. Feel so sad for my poor dad.. this all feels so brutal. 

Not sure what I want from this update, I guess just to vent. 

xxx 

Not a vent it's just that you are understandably very scared and it's good that you have a place here you feel comfortable to share that.

It's so weird how for lots of us we see paranoia in our loved ones when things are bad. My wife on the first trip to A&E rang me at 2am as she thought the nurses were trying to kill her.

Hopefully for now the steroids can work their wonders and relieve a lot of the symptoms. Have they upped his seizure meds as well?

I think the next important checkpoint is meeting the oncologist. Do you have a date set for this? They'll then decide with you and/or your mum whether and what treatment is possible? I always except the worse but hope for the best. Who knows, maybe another surgery is possible. I just find it easier to mentally go in without getting my hopes too high so I can be strong for my wife if it isn't good news.

Wishing you and your dad all the best and sending a virtual hug,

Chris

Hey Chris 

My dad had a couple of days in the ward with them monitoring his bleed but everyone has agreed that it wasn’t the right place for him. As of this morning he’s been moved into our local Hospice, which is amazing… they’ve been amazing with him. He’s taken a serious turn, we can’t really understand at all what he is trying to say to us now which is really hard to see. He’s very much in and out of consciousness, but also periods of real agitation and worry.. it’s so brutal. He’s got a syringe driver for morphine and anti sickness at the moment. I just so want for him to relax and stop worrying about anything. 

xx