Parotid gland

Hi Jaimiee 

I think all you can do this time is to go with what the experts say. I know it’s hard to watch and wait. They are right. You can get only one radiotherapy course. 

Hiya,

Thank you so much for your reply. That's what I was thinking was a very hard decision because I'd love to be able to say that it has gone and give my family that news instead of them worrying about me for longer. Xx 

Hi Jaimiee

There will be light at the end of the tunnel

I was diagnosed with parotid cancer mid 2021. I thought I had Bells Palsey GP referred me to ENT and after CT scan,MRI scan and several biopsy the consultant said he wouldnt operate as he couldnt be sure to remove all I then had 35 sessions of radiotherapy finished in Jan 2022. I'll not say the side effects were easy but looking back they were doable I lost taste, weight, appetite, and saliva and want to forget most of 2022 

But now 17 months post treatment  life is good again. Still have the facial paralysis and little saliva but apart from that appetite is back weight going on and all is good.

I still argue with the dietitian as she wants me to take fortisip while I prefer Guinness (same calories and tastes better)

I am now 77 and looking forward to a few more years yet

As Beesuit says go with the experts  Keep the chin up

Ivan 

Hiya,

Thank you for your reply. I'm so happy to hear that all is good now . I have slight paralysis but I'm hoping will pass in time.

My first concern was a lump that was growing on the front of my neck in 2020 and after a couple of years of not being able to get an appointment with my GP I changed surgery's and the GP there git min to see the ENT December 2022 and its all gone from there, like you I've also had CT scans MRIs, I think we counted to 16 biopsies all together as I could swollow anything at all. They sent me to e Walton in Liverpool aswell to see a Neurologist. The swallowing now has gotten a but easier so at least liquids and some soft foods go down . The specialist have been amazing since the surgery and has reassured me that they are on top of it and as soon as they see fit they will start the radiotherapy.

Those fortisips aren't nice at all, I think I'd prefer the guiness to one of them also.

I'm keeping a smile on my face well kind of smile with the paralysis anyway . I have 2 little girls who need me to stay strong and keep smiling so they don't know what's going on as they think after the surgery I'm all fixed, they're too young yo understand anything else about it.

It's just a bit daunting and I think I'm still processing everything.

Jay

Hi Jay

I hope the swallowing will improve quickly so you can get some weight back on again. After my radiotherapy I had no taste and swallowing was difficult, I lived on tomato soup, custard, yogurt and fortisip for weeks and weeks.

When I started my treatment in Cancer Centre Belfast I was referred to physiotherapist, dietitian, speech & language therapist and cancer nurse specialist.

It must be very difficult with 2 little girls but children are very resilient. I think there may be leaflets available from McMillan on discussing cancer with children. My children are adults and they want to know more than I want to tell them!

My facial paralysis was there for about 9 months before treatment started and is quite severe.To me now it is just a nuisance.I can't close my right eye and lower lid was drooped. The eye people have put a stitch in the corner of my eye and it looks normal now but still doesn't close. My 4 year old grandson asked his dad why his papa had only one face and I have to explain to some people that I am not winking at them because when I blink only one eye closes.

I hope it is not too long before you start radiotherapy and you will be well on the way to recovery

Ivan

Hiya Ivan,

Thank you tomorrow soup is my enemy at the minute I've eating it for 8 months now with some extra cream in for some more fat I will be happy to never have soup again in my life after this . I also have a dietician who phones about once a month to see how I'm getting on.

It is they are a blessing though they keep me busy and keep me going though, they both have Cystic Fibrosis and I think that aswell it was pushes me because I see everything they go through and I'm a bit like we'll they have it soo much worse than I do and I give myself a kick up the backside if I start to feel a bit down or anything because they take all their meds and treatments with no fuss at all bless them.

I'm really sorry to hear about the paralysis and how much you had to do to try and rectify it. Its hard when the kids are little isn't it my 2 are 8 and my youngest will be 5 in a couple of weeks.

Thank you so much it has been really nice talking to you, and to someone who understands.

Jay