Hi! I’m new. Recovering from surgery for Mucoepidermoid Carcinoma.

Hello, AmberPam - my cancer was different (squamous cell carcinoma) but my surgery about 8 months ago was similar. I had a neck dissection and the cancer and some jaw bone removed and reconstruction.

Like you I had a lot of swelling and lymphoedema, the latter largely being due to removal of lymph glands. I was also sort of expecting the post op swelling to disappear after a few weeks, but it actually took a lot longer. Once the scar on my neck settled down I was able to massage and exercise my neck.

The swelling has very gradually reduced, but I still get puffiness on the cheek that side which is lymphoedema. My neck still feels stiff and uncomfortable.

Apart from massage, I find hot flannels and a hot water bottle in a cover or towel help (obviously being careful not to have it too hot, so it doesn’t burn).

I found that movement in my mouth and jaw gradually returned with exercise and time. I still have problems eating as my surgery included the removal of some teeth, but I can eat soft food without difficulty.

In short, things improve, but over months rather than weeks in my case.

I’m sorry to hear your aftercare has been lacking. I have found physiotherapy very helpful and perhaps you could inquire from the team treating you to get access to physiotherapy which I think is necessary after a neck dissection and related surgery.

Hi Amber Pam. Welcome to our community. I didn’t have any surgery so sorry can’t help there .There’s a few who have am sure they will pop,on over weekend.That’s not good that you’ve no access to a cancer nurse. Do you have a Maggies centre near you ? Or any Macmillian nurses ? I would go for a phased return to work if that’s possible it will be easier for you in the first few weeks.Hazel 

Hi AmberPam

Great news your tumour was removed with clear margins and  lymph nodes are clear. It is still very early days with your recovery after your surgery. We all find that we need time for things to settle after surgery and this can take time. I understand you feeling self conscious at the moment,  this is something I had to deal with after my surgery. Try not to get too down - you have been through a lot. The emotional and physical side of things takes time to work through.

Your follow up appointment with your medical team should give you advice on your lymphoedema and stiff jaw and any other issues you now have.  This is important for you so you can put your best self care in place to enhance your recovery. Maybe for now  eat a soft diet  so you are not causing yourself discomfort. It is good you can eat. I see you have had no contact with specialist nurse and sign posting - hopefully this will change on your follow up appointment. Support and guidance is essential.

The phased work is a good thing  when you are ready to go back to work.  Discussing the things that have changed for you and need help with for your recovery will be so important.

Joining this forum is a good lots of friendly people with good advice and support.

Best wishes

Nicky

Hi AmberPam and welcome.

I also think it's pretty poor that you don't have access to a specialist cancer nurse or any other support services.  I would definitely push to be referred to a lymphoedema clinic at your next appt and physiotherapy.

I was advised there may be nerve damage to the lip as a result of the neck dissection but that it should only be temporary while the nerve repaired itself.  I was lucky in that this was one area that was not affected.  Most of the areas that were affected have now healed and are fully functioning although I do still have numbness in and around my ear and jaw. 

If you feel you are having problems with eating/swallow do also ask to be referred to the Speech and Language Team who will be able to help.

As your employer is so supportive I think a phased return to work would be a billiant option.

Linda x

Hi CathyLovesFlowers! Thank you so much for taking the time to share your story and it is encouraging to hear that things have improved for you over time. Sometimes I do wonder if I am being rather too impatient. Do you think the physiotherapy you have had helped with the lymphoedema you also experienced? Something else I've noticed is that my skin where I'm swollen is very grainy, did you notice anything like that? 

Please also accept my apologies for the delay in replying, my husband came down with covid last week so I had to hit the ground running again with looking after 3 children and 2 dogs whilst he has been isolating so this is the first time I've managed to sit down in front of my laptop again!

Hi RadioactiveRaz! Thank you for the welcome and for taking the time to reply to me. My apologies for the delay in replying, my husband came down with covid last week so I had to hit the ground running again with looking after 3 children and 2 dogs whilst he has been isolating so this is the first time I've managed to sit down in front of my laptop again!

Thank you for sharing your blog and your experience. I spoke to Macmillan and they were lovely, and they also felt that I should have been referred to the lymphoedema clinic for some help and support. I am back to see my surgeon tomorrow so will push for this. I've never previously heard of Maggie's but have just googled them and unfortunately there isn't one in York, but the website looks to have lots of useful information so thank you for the suggestion.

Hi Sporty Nicky! Thank you for your kind and positive words of encouragement. I am back at the hospital tomorrow to see the surgeon so hopefully I might have some more answers on the issues I am experiencing.  Also, please accept my apologies for the delay in replying, my husband came down with covid last week so I had to hit the ground running again with looking after 3 children and 2 dogs whilst he has been isolating so this is the first time I've managed to sit down in front of my laptop again!

Hi LindaWT! Thank you for taking the time to reply to me, it is much appreciated. Please accept my apologies for the delay in replying, my husband came down with covid last week so I had to hit the ground running again with looking after 3 children and 2 dogs whilst he has been isolating so this is the first time I've managed to sit down in front of my laptop again!

I am back at the hospital tomorrow so will push for a referral to the lymphoedema clinic. I am also going to tell my surgeon that I am disappointed with the aftercare I have received, I really feel as though I have been abandoned. When I had my first follow up just before Christmas my surgeon said 'well, we've dealt with the cancer' and I just felt as though he felt that he'd done his job and what more did I want! 

Fantastic that you did not experience any nerve damage and I hope you continue to do well in your recovery.

Oh crikey AmberPam, no apology needed!

Good luck at the hospital tomorrow - I hope you are able to arrange some support.  And I hope your husband has recovered.

Take care.

Linda x

Hi if you are York  your nearest Maggie s is Leeds Cancer centre.  I am pontefract do not a million miles away. My best friend live din Dunnington small world. Hope  you get  some help tomorrow. Sorry hibby has had covid not what you need hope he is ok now ?

Hazel x