Hello

I’ve just got home so feeling much happier already. It certainly does seem to be quite rare, my diagnosis took a few months as they thought it was lumpy lymph node from the MRI and ultrasound, took a core biopsy to prove it.

Brilliant so pleased you're home. My GP told me to go home and it would go away on it's own. Enjoy Christmas and keep in touch. Jos 

Hi, hope you had a brilliant Christmas and New Year. I hope you're doing ok. Jos

Hello,

happy new year to you too. Yes I’m getting on ok thanks. I’ve got the follow up from my surgery today to find out what’s next so a bit nervous. I currently can’t hear in my right ear or blink properly with my right eye, shoulder and jaw weak too but hopefully all that will recover. Scar seems to be healing well.

How are you? Are you still waiting for an update?

cheers

phil

Hi Phil,

Let me know how you get on, if that's ok. My left side is my issue, so between us we can make a whole face :-)

I can't hear properly in my left ear but that was through having radiotherapy. I really hope you get good news today. 

I was at consultant last week, just a waiting game. I have to go for another CT scan as I'm having pain in my ear. He doesn't think it's anything to worry about. I'm doing ok, back at work. As they say I'm living the dream. Fingers crossed for today.

Do you have a local Maggie Centre? I use mine and they have been a great help, both just to talk and for financial help etc. 

Take care,

Josie

It’s great to hear you’re back at work and getting on with life.

My follow up meeting was good. It turns out my particular form of saliva gland cancer is extremely rare, the cancer primary was in the gland itself and then the lump was a lymph node. Apparently it’s more common for the lump to be an extension off of the saliva gland. The MDT are glad that with the surgery they took out not just the lump, but the gland too.

Anyway, as it’s aggressive I’ve got radiotherapy next, which is kind of what I was expecting. I can’t say I’m looking forward to it, but I understand how important it is. 

I do have a maggies centre at the hospital so I’ll pop in. Always good to talk

cheers

phil

Hi not unlike mine. My gland got taken away and lump. Spread to lymph nodes. Got nerve in face taken away and bone. It's like top trumps. I got radiotherapy, 30 treatments. If you want to talk about it let me know. I got through it and so can you. Glad you got through today. Didn't want to message you incase you weren't ready to talk.

Jos 

Hi Phil, how are you?

Josie

Hi Josie,

hope you are well?. I’m feeling quite fatigued right now. I had two teeth taken out in hospital last week as a preventative measure pre-radiotherapy. I seem to be taking a while to get over it and finding it quite painful, I’m on some antibiotics as well.

hopefully it’ll pass soon as I have CT planning scan this week and radiotherapy starting the week after.

I’ve been in touch with McMillan support and the nurses at radiotherapy. I’m doing the right stuff, a bit of exercise here and there and not being too hard on myself, but it’s just a bit tough every now and then, especially with two small kids. I’m still thinking positively but would be great if I had some more energy.

cheers

phil