Hi all, my mum has recently been diagnosed with a Diffuse large B-cell lymphoma in her head, its a primary CNS lymphoma.
She has had her first week of intensive chemo and is now in intensive care on a ventilator with pneumonia and sepsis.
I am worried sick and I miss her so much, we are so close and we always phone each other, and I'm only a 3 minute drive to hers.
I am supposed to be going on honeymoon, delayed form last year in 3 weeks (2nd Nov), do I leave her for two weeks or don't I?
What if she dies? I know it sounds petty, but we could lose £5000 as it will be a late cancellation.
Mum would tell me to go, as she would say there's nothing I can do for her anyhow, we have such a loving family.
This has really thrown me.
Hi Sharon F and a warm welcome to this corner of the Community and I am so sorry to hear about your mum.
I am Mike and I help out around our various Lymphoma groups. I don’t have CNS Lymphoma but I was diagnosed way back in 1999 with a rare, incurable but treatable type of Non Hodgkin’s Lymphoma (Stage 4a) so although my Lymphoma ‘type’ is different from your mum's I do appreciate the challenges of this journey rather well.
Sharon, these times in the journey are very scary but it's not that unusual for someone going through treatment or even post treatment to end up in intensive/critical care with pneumonia and sepsis..... it happened to me a few times and that was over 5 years ago and I am here talking with you today.
The treatments used for CNS Lymphoma are very strong as they need to be. So in the early days it's a big hit on the body so things like this can happen - but she is in the best place to deal with this.
I do appreciate your challenges with regards to your delayed honeymoon but the only people who can give you clear indication as to where this is going is your mum's clinical team so you do need to have an open discussion.
From my experience having been in the exact same position as your mum - things can change very quickly, I went from being very poorly one day to sitting up right as rain the next.
Always around to help more or just to chat ((hugs))
Let’s look for progress to be made and things to improve soon ((hugs))
