Hello Jools and welcome to the Cancer Chat community.

I'm really glad to hear you're recovering well from your parotidectomy and I'm sure any members who are due to have this surgery will definitely take you up on your very kind offer :)

Do feel free to impart your wisdom on any discussions you find about this when using the 'search forum' option in the purple bar above.

If you have any questions during the rest of your recovery, you're welcome to give our team of cancer nurses a call on 0808 800 4040. Their phone lines are open Monday - Friday between 9a.m - 5p.m.

Kind regards,

Steph, Cancer Chat Moderator

Hi

Just joined after I saw your post. I'm having a parotidectomy next week. Biopsy was uncertain so not sure whether or not I'm dealing with cancer yet. My operation will be on the side I always sleep on - impossible to sleep any other way because of a badly arthritic hip (hip replacement postponed for this operation!). Is there any kind of support/pillow available to protect the operation wound? I know most people would just sleep on the other side but someone might have had the same issue??

Hi MelJP, really glad you reached out. I'm 4.5 months down the line now & it's definitely been a journey. My recovery is about 90% there, but the small 10% is something that might be permanent & that's the numbness around my left ear & cheek, but I've decided I can live with that & it's a small price to pay. Movement in mouth took a long time to come back, but you see little improvements each week, that bit I would say was the hardest mentally though. I researched lots of things that I wanted to try, but I had to sleep sitting up for 2 weeks after the operation, which wasn't as hard as I thought because I was exhausted, so it might be easier than you think. As my tumour was incredibly deep, my scar was a lot bigger than expected, but I religiously put on Dermatix for 3 months day & not, then went to Bio Oil. I used 3 pillows to sleep on & whilst there's nothing specific out there, I would recommend just sleeping in whatever way you can get your sleep. If on your side & you're worrying about damaging the scar tissue, you could cover it at night & leave open during the day. Have you got someone that can look after you after the op? I had to use a straw to drink & could only have smoothies & soups to begin with. Have you known a while that you've got to have the op? If you have any other questions or concerns I'm happy to help. I found it quite hard to get information, I think the whole process is quite rare, but success rate is high, so stay positive x

Hi Jools

Thanks for replying. I've had the lump for years but was told it was nothing to worry about. My dentist suggested getting it looked at again and it had become something to worry about, so glad I did. It's great to hear how positive your outcome has been. My surgeon said my earlobe would always be numb so I've accepted that. What I'm most worried about is the nerve damage. My tumour is in the superficial lobe so less of a risk but I suppose it all depends on what they see under the microscope afterwards. What's dermatrix? I'm in the UK so it might have a different name. Got the bio oil in ready though! Thanks for the sleep advice. I looked for pillows with holes but they all seem to be designed for haemorrhoids! Might still work I guess. I already sleep with 4 pillows so that won't be an issue. I have my grown up kids here and lots of supportive friends, but it's really good to talk to someone who has actually had the thing done. Like you said, it's not a common procedure. Will be easier once it's done and I know what I'm dealing with. The uncertainty is difficult but I'm sure I'll get through it. Thanks again for your support Mel

Hi, I'm based just outside London & had my surgery in Wimbledon. Dermatix is on Amazon & not very expensive. My surgeon just said definitely use this for 3 months before the bio oil & I honestly believe it's made all the difference & my scar is right in the crease of my neck. I had to get my partner to put it on to begin with as couldn't feel the area. They also gave me a strong eye ointment called chloramphenicol to take away from the hospital which I believe is a hidden secret for post operative scar healing, but everyone is different so another surgeon might recommend something else. Mine came about as I  had an infection in my salivary gland last November & my face started to swell one side, so when the swelling didn't really go down that's when I had an MRI (which I hated in all honesty) & they discovered a tumour & the op was postponed in January then took place in February. I had to have 4 biopsies as they couldn't get deep enough. If you need to see photos please let me know, it's just reassuring to see what it looks like after the op (which was a bit of a shock for all of us) & the massive difference & healing stage it is at now. They had to lift up the whole one side of my facial nerve, so I know it could've been a lot worse.... even my surgeon was pleased with his handiwork lol. Glad you've got people around you though, it definitely helps. Oh one more thing, saying the alphabet in front of the mirror is a really good exercise & after a few weeks, gently massaging the area helps. Happy to keep in touch if you'd like further support x

Thanks Jools. Will definitely get the dermatix. I'll ask about the chloramphenicol. Remember it well from days of having infants with conjunctivitis! I guess it helps prevent infection? Not sure I'm ready for pictures. Last time I googled pictures I couldn't get to sleep all night although it might help to see them after the op as reassurance that it will improve. Always difficult to handle surgery on such a visible area . But trying to get to the other side of the op without worrying too much about it. Easier said than done, worrying isn't going to help but preparing will. So thank you for your suggestions and it would be lovely to have you there afterwards if you're ok with that

mel xx

Hi Mel, hopefully it won't be as visible as you think - they managed to put mine in the crease of my neck, so only visible if I have my hair up & people really know about it. Good Luck with everything, you'll be absolutely fine, deep breaths, shoulders back & nothing but positive thoughts. Thinking of you & here afterwards xx

Hi Mel, I just thought I'd check in on you & see how you're doing x

I had my surgery on Monday. I have a couple of concerns so bare with me, I'm only mentioning them to get ansers for me, not to scare anyone because my symptoms/situation might just be more rare and shouldn't worry people. They said the tumour was large and in 2 parts which the surgeron said was concerning but he then followed it up with "there's still every chance it's still pleomorphic adenoma".. Initial biopsy a year ago showed it was benign but I'm just concerned as it was only 1 part they got a test from. I'll obviously find out within 2 weeks what it comes back as now that the whole thing is out. My practical concern is I think I have Frey's syndrome because my cheek / most of the area of the scar is wet alot / sweaty. Having been told to keep the scar dry I'm just concerned that the frey's syndrome might affect the healing process? I've been out of hospital since Wednesday now. I'm also depserate to wash my hair as I think it's in my mind but it keeps itching, but again too scared to dare to get my scar more wet than it already is from the freys syndrome. I also have some irritation in my ear and I can see there's dried blood in there, it's been 5 days since my surgery and I'm not sure if I should attempt to clear my ear yet as it's so close to the scar and is mostly numb at the moment. Sorry for all these questions but I wasn't really given much factual information before I left hospital on Wednesday, it was mostly just "whatever feel's comfortable for you", and to be honest what would be comfortable for me is somebody telling me what I can factually do haha.