Salivary gland cancer

Hi Mrs AM I was diagnosed with saliva gland cancer last year. My eye doesn't close, they operated on it and not perfect but better than it was. If you had op that cut down side of ear as I had let me know. The CT scans are scary but please reach out for help. I attend Maggie Centre and it does help. Anyway I'm here for you if you need anything  

Hi Mod. Sorry I’ve just flagged your other thread by accident. There’s a reply there too. The mods should have it back on in a trice.. 

Hi 

Thank you for responding. I am so happy to hear from you.  I don't feel so all alone with this condition.  My nearest Maggie centre is in Sutton which is around 50 minutes away.  I might see if I can join the local Macmillan drop in.  My scar is on my cheek beside my right ear starting from the top running along the side of my ear going down my cheek to a little bit down by my neck where the drain was attached when I had my operation.  Did you also had nerve damage?  The eye doctor told me to go back next week as he said he might stitch my eye together temporarily.  however, I will see what the new surgeon in Oxford will tell me about the nerve damage. I assume these are all connected.  

"The CT scans are scary "- When I had my CT scans I did not find it scary but I am a little bit worried about the result. Is that what you meant?  

Did you also had facial paralysis? Numbness of the face?  Did you also feel tingle, pins and needles and sometimes shooting pains (though) bearable on your face. Just into my 5th week from operation, the numbness of my face is still there though receding and still experiencing pins and needles and pains sometimes.  

I try to massage my face and do some face exercise a little bit to help my face muscles.  Did you do that too?

Did you have treatment as well? i.e. RT? 

I found taking medication with facial paralysis is quite difficult.  I bought soluble paracetamol but it was awful.  I tried to dilute it in orange juice but still taste horrible.  I eventually made it into powder using pestle and mortar and put in mashed banana.  I am wondering if you had this experience too. Would be interested t find out if there are any drink good to use with soluble paracetamol or co-codamol.

Many thanks, 

Maria

Hi Maria, just saw your email. If OK I will contact you in the morning. Night 

Mrs AM said:

I bought soluble paracetamol but it was awful.

Hi Maria. You can get paracetamol in an effervescent tablet as well as the liquid. You should be able to get them both on prescription free from your GP

Thank you Dani. 

I met my new surgeon in Oxford Tuesday night. He said there are 2 options for me.  Radiotherapy without further surgery or further surgery plus RT. He suggested to further operate to obtain clear margins to max the chance of getting rid of cancer. Though he did say that it is possible that after this surgery there will be no cancer cells. The thing when I had the MRI scan before my first op it was all clear as well as my ultrasound. The biopsy came back very late and was inconclusive. However I decided to have it removed as I was feeling occasional discomfort and pain and hyper salivation.
I am now in my 5th week after surgery there is no movement in my face hence it is uncertain if my facial damage is permanent or not. The surgeon said that the trade off with this operation will be the removal of the facial nerve. . I will also have neck dissection. He said he will take some nodes in my neck as they are close to the node that had cancer.  I forgot to ask him how it feels like after the surgery when you have neck dissection. Does anyone know how it feels like post operation. What sort of clothes would someone wears. I found the need to wear blouses that are front opening only after my first Op.

I also met up with the plastic surgeon for the reconstructive surgery at the same time.  A flap from my thigh will be put on my face, my eyebrow raised, gold weight will be put in my eyelid to make it close, tighten the slit of my eye, put a groove from my nose to my mouth.  But he said the most important thing is my smile. The hope is once the nerve endings of the good cells from my flap started to grow it will help make me smile. He told me that he would use microsurgery.

 Operation will be simultaneously so will take 8 hours.  It feels daunting and overwhelming.  But I have trust and faith in them. They are incredible people. I just find my mind always being consumed by the thought sometimes and I feel anxious.
I wanted to prepare myself because I know it is soon. I found that with my first operation I found drinking and eating a struggle in the first few weeks. I lived in soups and using teaspoons to eat and drink. So I will be stocking myself with those. I also bought liquid paracetamol. I am not sure what other painkillers that taste ok. any ideas?

The ulcer in my eye is now healed. Taping my eye worked according to the opthalmogist yesterday.

have a lovely day all.  
maria

Hi Maria. Thank you for  the update. I didn’t have a neck dissection but people on here report that it’s not too bad and that they are feeling much better in a week or so. Others will pop on who do have that experience I’m sure. 
Losing your facial nerve is serious and I’m glad you seem to have a solid team behind you helping with post op recovery and rehabilitation 
As for pain killers you can get soluble cocodamol on prescription. You’ll need to take laxatives with that as opioids are constipating. 
Hopefully paracetamol will do the trick. 
If you need RT you might need something stronger but it will all be supplied by your hospital. 
Best of luck Maria. Xx

I've had 2 neck dissections.  For many of us they are easy to recover from.  I wear almost anything - even back to occasionally wearing a tie!   Maybe for the first few months try not to wear anything you pull on over your head.  Also, as a woman, you may have a problem reaching around to your back depending on what they do to your accessory nerve.

Overall there is rapid initial recovery followed by longer period (in my case 18 month) before you get to a final state of recovery.  That was all around the nerves settling down post op and physio helping to regain some of the limited movement I had in my arm.  What side effects I have left are more of an amusement than a limitation!  e.g. I can scratch my neck and it feels like the top of my ear...

Hi my name is Sue. I have been through exactly what you are going through. In July 2021 I had 14 hour surgery to remove my parotid salivary gland which had a tumour, unfortunately It was also wrapped around my facial nerve so I list that too. I also had a neck dissection on the left side from that to ear. I now have a titanium cheekbone and my graft along with muscle and artery came from my right thigh. I have no movement now in left side of face but they did save my eye and I had a small op to just stitch outer corner up because it was dragging down and wouldn’t close, for a while I still slept with it tapped closed but it is fully recovered now. I had 6 weeks of RT, which is pretty tough but doable. I won’t tell you my journey has been easy but I have survived. It’s like being on a rollercoaster ride, lots of ups and downs. The worst part is losing my smile and there is nothing they can do about that but all my family and friends say I smile with my eyes and they don’t notice. I notice though and this is the toughest part, trying to find me again r should I say the new me.  I am having surgery tomorrow to lift my lip which is drooping, it won’t give me my smile back but it will give my face more symmetry and hopefully make me feel better about it. People tell me how lucky I am to have survived all this and how brave and strong I have been but all I have done is be a survivor not a victim to this horrible disease. I am more than happy to send you pictures of my journey if you want to see them. Contact me anytime. All the best xxx

Hi Sue,

Thank you so much for your inspirational reply.  I am scheduled to have my next operation next saturday (5th nov). I will have an MRI this coming Friday and pre-assessment. Sometimes I struggle with my mental health. It seems this thing is all too consuming and I cannot seem to get away from it.  I am anxious and scared of the outcome but I am also grateful that there are amazing people in this world that can help me. Like you I am starting to accept that this is the new me.  If I can get rid of this disease and live life I could not ask for more.  Yes I would love to see your photos and get in touch with you. I wish you all the best for tomorrow.

take care

maria

p.s. I don’t know how to send you a private message though I have accepted your friend request.