Hi everyone, I'm not very good with tech, and I've never really done any web chats, embarrassing for a 42 year old I know but bear with me!
I have been diagnosed with a snuc during lockdown that has spread to the lymph nodes in my neck and also into the brain cavity. I have had 2 rounds of chemotherapy so far and I am due to start a combined chemo and radiotherapy treatment on the 13th July. It will be radiotherapy 5 days a week for 6weeks and chemotherapy once a week during those 6 weeks.
I'm just wondering if anyone has had a similar treatment in a similar area and could offer me a bit of advice about what to expect, I've been told it probably will be quite hard going but any helpful advice or pointers would be really appreciated.
Oh Alex I'm so so sorry to hear this, def not the news we wanted to hear for u.... Alex remember these guys know what they're doing, it must be absolutely nerve racking for u but you'll be out for the count and totally dosed up on pain relief afterwards but I know if it was me facing that I too would be terrified....
Alex ur always in my thoughts and prayers (and all the fighters on here) and u will be especially on the 22nd.
Well Alex I had tumours coming out the bridge of my nose at the top of my nose, my tumour pushed the bones all out of shape so yes my nose is now a bit wider at the top but it's not overly noticeable and yes it was painful, it was extremely sensitive, like a nervy feeling. It still is if I rub the area where the lumps were.
I'm ok Alex, had a biopsy last month as I had another lump on the roof of my mouth but it was all clear, I got my 1st ever stitch lol, but swallowed it 2 days later
Thanks Dee and thank goodness the lump was clear. Yes I am petrified, I'm usually okay with surgery but because it's opening up my skull, I'm petrified. I have 3 top surgeons with me. I'm thankful that they can operate and they feel the best procedure would be to enter through the skull to remove all or as much as possible.
My nose has widened and the bridge bone is more visible. X
Alex i think ur being incredibly brave, its a very serious op by the sounds of it, any wonder ur petrified. Alex this too will pass, I remember being so so ill at Christmas last year and I swore I'd have an amazing Christmas this year then covid happened lol but what I mean is that it feels like yday wen I was soo sick with the treatment and the potential major op but thats a year ago, so before u know it it'll be springtime and this will hopefully be a distant memory
Hello Alex, just a wee message to wish u all the luck for tomorrow, been thinking about u and will be tomorrow!
Hi everyone, Chippy, Lollie and Dee.
Just a quick update.
Phew, glad that's over....I have had a bifrontal craniotomy endoscopic excision of Neuroblastoma and repair with pericranial graft and nasoseptal flap.
It was a big operation, apparently 7 hour's. It was on 22nd December and I was battered and bruised. I lost allot of blood and currently taking iron tablets. My head is still tender and sore, black eyes and swelling has reduced considerably.
I'm resting and I get tired very quickly (understandably), they said they have removed nearly all the tumour and they are happy with surgery.but won't know till MRI scan in 8 weeks time.
So glad the operation is over, the scariest thing I had to do was walk through the Theatre doors knowing what I am just about to have done and knowing what was coming after surgery, little did I know I'd be home 3 days after.
Staying hopeful, focused and strong does go along way, Did cry just before surgery but the Nurse's picked me up and I soon found my strength again. X
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