Hi Tracey,

Just wondered how you got on with your MRI?

I had a superficial parotidectomy last month and also told no further treatment necessary. Just check ups every six week and regular scans.

Still got a lot of numbness in my face and a wonky mouth and eye.

Its very scary after surgery is over, wondering if it will come back. There aren't many people who have this type of cancer which leaves me feeling a lttle bit isolated. Have you managed to get over your fears yet?

Ally.

Hi there,

Thanks for the message.

I am still waiting for my second MRI scan, it's been delayed due to COVID. 
 

I usually get monitored every 3 months by just seeing my surgeon. He has phoned me through lock down to check in with me. 
 

The side of my face in front of my ear has never come fully back to normal but can cope with that. I have feeling in my ear lobe which they thought I wouldn't have so that's good. Your mouth will come back in time a lot of nerves would of been damaged and they take time to heal. Can take as long as 2 years to fully settle. I never had issues with my eye but I am sure it will come back too. 
 

Unfortunately, I am still struggling with ever having this.  I can't stop thinking it will come back or that's it's still there, but I am never the positive of people. 
 

Thanks,

Tracey

Hi Tracey,

nice to hear from you.

I'm doing OK at the moment. Had an MRI in December which was clear and consultant said it was very reassuring.

still numb on left side and can't move my eyebrow - looks like I've had Botox on one side of my face

Stitches feel very tight and are a bit uncomfortable but everyone says I look normal so that's a bonus haha.

Are you still struggling with thoughts of it returning? I go through stages of anxiety but I expect it's quite normal to feel like that.

Ally xx

Hi Ally

hope you don't mind me replying to you also! It's so rare to find people with the same cancer so it's nice to have people who really understand. 
I have the same as you re thoughts and anxiety, I've been ok a lot of the time but sometimes I feel so overwhelmed by it. I need to remember I only found out about all this in December 2020 after thinking for all the time prior it was a benign lump. 
I have a call with a wellbeing coach from MacMillan this week who offer 6 sessions, I'm hoping that will help me. Have you looked into doing anything like that? 
I'm due my first follow up meeting with my consultant in the next month or so and then my first MRI scan 3 months after that. Do you mind me asking how old you were at diagnosis?

hope to hear from you soon

Laura xx

Hello Laura,

Nice to hear from you.

I just wrote a great long message back to you and i seem to have lost it so here goes again haha.

Sorry to hear you are going through the same thing as Tracey and I and you are right about talking to people who understand. Its such a rare cancer and googling it is not a good idea but we are probably all guilty of doing it.

I found out about my tumour last August and had the op in September so I'm six months further on now. I do get anxious about it as times as I feel nobody (that I know) can appreciate what a traumatic experience it was. Lets face it, having your face cut open with all that entails, then the nerve damage, the knowledge that it could recurr....

I still can't feel the left side of my face or my ear. My mouth has improved but I can't move my left eye (blinking is fine) as in raising my eyebrow. It feels very bruised along the eye and brow up onto my forehead but I think that may be the nerves trying to regenerate.

At the moment I have a problem with my left eye and i worry it is somehow connected.

To be honest, i haven't really done anything about the anxiety. The first time i tried to contact the MacMillan nurse at the hospital I didn't get a response and thought maybe there were people more in need of help than me. I don't want people to get fed up with me going on about it all the time so I mostly just get on with it.

By the way, I'm 58 so most likely a good bit older than you and Tracey.

Always happy to chat if you want to get anything off your chest.

Ally xx

Hi Laura,

I'm good thanks. No problem at all, it helps to have others to talk to. I'm so pleased for you that the scans went well. MRI's are the worst.  I'm meeting with my consultant every 3 months also. I don't get another scan for 2 years supposed to be but think will ask for one a year down the line. 
 

I'll be honest it has been up and down for me.  I think I can't accept it happened to me being so young. Like why me.  I can't fault my consultant and surgeon, I have both due to covid. My surgeon is too busy with surgery for consultations but both are amazing. The only side effect I had aftwr surgery was it kept filling up with salvia which can happen apparently. That stopped a few months after. Unfortunately my MRI scan is still showing highlighted area but they are saying that is post op changes rather than cancer. I just hope they are right. 
 

I struggle hugely mentally because of it and covid is not helping. I do really think it takes time to get over the whole thing and there will always be the feelings of what if it comes back but the longer time passes with good follow up appointments and scans the thoughts will fade.

Tracey xx 

Hi Ally,

That's fantastic news. I had a MRI February and mines is still showing a highlighted area but they are saying this is more post op changes rather than cancer. I hope they are right. My scan February last year showed the same. My surgeon and consultant were very happy with the scan. 

I am still numb on the side of my face the bit that goes past the front on your ear. I don't know if that will ever come back but it doesn't bother me.  Are your stitches dissolving ones? As long as your mouth and that works I think is the most important. Your eyebrow might come back in time. 
 

I am still really struggling with it all. I just live in fear all the time of it. It has made me such an anxious person which I hate as I never used to live in fear the way I do now of everything.  I think it is normal to feel anxiety it has been a trauma we have been through. Time is a great healer. 
 

Have you had you covid vaccine out of curiosity?

Tracey xx

Hi Tracey,

I had my Covid jab last week. Was very tired and lethargic the next day but it soon passed.

Im sorry to hear you're still struggling with it all, I know it's not easy. It sounds like you are doing really well though and your medical team are looking after you.
My consultant probably dreads my appointments because I always bombard him with questions and what if's!! Haha.

It's a bit frustrating with my eyebrow, I am starting to think it won't come back but they have told me I can have Botox on the other side to make both eyes even.

I hope you start to feel better about it all soon. You are young and otherwise healthy so no reason to think it's the end for you.

As for me, my anxiety comes and goes but these days every slight twinge or lumps and bumps and I go into panic mode. So many different sensations going on with my face, don't know if they are nerves, muscles or what! xx 

Hi Ally,

Out of interest which vaccine did you get?  Glad you are feeling better now. I am still waiting for mine but not sure if I want it or not. 
 

Yeah I have days where I do really well and others not so much. I guess it will just take time. My consultant is so happy with me and says no question is a silly question. 
 

Hopefully your eyebrow will come back but least botox is an option if not. 
 

It's just can't help but always think bad thoughts a about how everything rare will happen to me but I never used to think that way pre cancer that's the thing. How it changes your life. 
 

I am the same a lot of my twinges have stopped now which helps with the anxiety of it and that's me 20 months post op now though so it certainly does take time and I have bits that are still numb which I don't think will come back. 
 

Tracey xx

I had the Astra Zeneca - my advice is to have it. The side effects only last a day or so and after hearing how sick my friend was when she caught Covid I wouldn't want to risk it.

Does your scar go down your neck? Mine is still a bit swollen and numb. My ear feels tight from the stitches and uncomfortable - also, I now have one ear lower than the other and it sticks out!! Couldn't make it up really haha.

The stitches were dissolvable but a couple of them went a bit red and inflamed so they were removed by the doctor.

Ally x

I am just so scared of this rare blood clot they are talking about. Because the cancer was rare I think the rare blood clot would happen to me if you know what I mean. 
 

Yeah my scar goes down my neck too. Mines has healed quite well but scar is still lumpy and that scares me still.  The tightness will eventually ease up but my ear has now been stitched to my face so doesn't have the flexibility the other ear does. 
 

Mines was dissolving too, ouch that sounds a bit sore. 
 

Tracey xx

I totally get what you are saying about getting a rare cancer but honestly, there have only been a handful of blood clots reported amongst millions of doses.

You can get blood clots from taking the contraceptive pill or HRT or other medications - not forgetting covid too.

My ear now has a fleshy lump underneath - maybe he had trouble going around it with his needle haha.

xx

I totally get what you are saying about getting a rare cancer but honestly, there have only been a handful of blood clots reported amongst millions of doses.

You can get blood clots from taking the contraceptive pill or HRT or other medications - not forgetting covid too.

My ear now has a fleshy lump underneath - maybe he had trouble going around it with his needle haha.

xx

I'm just so scared about getting it. I am not eligible until my age group anyway but I have never felt so scared about getting a vaccine. I think it's the unknown of long term side effects also. I'm not a anti vaxer but after going through the cancer trauma, I am terrified of getting an unknown vaccine. 
 

I know that is so true, I used to be on the combined pill many years ago and changed when there was a huge deal made about the blood clots on the news. 
 

Yeah I have a lumpy but right underneath my lobe. It's really annoying but I guess there isn't much skin there to stitch back together really. My scar is all white now, it's amazing how time heals it. 
 

Tracey xx