Recent diagnosis of adenoid cystic carcinoma of left submandibular gland

Frequent Contributor

Recent diagnosis of adenoid cystic carcinoma of left submandibular gland

Three weeks after surgery which was pretty brutal.   My surgeon used that word after surgery, not before.  I knew what was going to happen but the shock of the reality isn't something you can prepare for.   I had been assured by many excellent people that I would not be in pain.   That was completely untrue.  My worst fear was to be awake overnight and in pain.  As I'd needed a temporary tracheostomy I had to go to ICU for a few days.  It would have to have been the noisiest place ever.  I think someone needs to invent "cones of silence" that pop over the whole bed area to allow patients to sleep.  Nothing they gave me was relieving the pain.  I had a notepad where I documented the time throughout each night.  There were times I thought I would lose my mind.  I had asked my children (all adults) not to visit me in hospital because I would cry when I saw them and didn't want to cry, as well as having a swollen mouth and tracheostomy.  I didn't realise I would be crying a great deal because of the pain anyway.  My husband visited me day and night but he didn't know what he could do to help me.  They gave me a "pain machine" - you press it every 5 minutes and get a shot of morphine.  You can't click any sooner than 5 minutes as it doesn't work.  Nothing.  All day nurses would walk by and ask is it working?  I woud nod no.  Keep pushing the button.  I did.  At one point later in the day they said I had pushed the button 31 times!  They checked it.  It wasn't working.  Installed a new pain machine.  Still nothing.  In the morning they took it away with no explanation.   One evening a nurse said she would get me some pain medication.  She came back and apologised profusely.  I couldn't have any pain medication as they were counting it!  It was absolutely ludicrous.  By the 5th day I knew I had to get out of the hospital or lose my mind.  I asked the Plastic Surgeons if I could go home.  They said if the Ear, Nose and Throat Team agreed then it would be acceptable to them.  They obviously did not have children.  I told one team the other team had said I could go home and the other team the same in reverse.  I agreed to and said whatever anyone needed to hear to get out of there.  The experience was really traumatic and each time I told the story I cried.  Eventually, I had told the story enough times to get the trauma out and eventually could speak about it without crying.  I wrote to the Hospital and put in an official complaint.  Not about my surgical team who were brilliant but about the nurses.  

 

I've learned how to get through trauma many times and each time you get better at handling it.   One of the best ways is to talk to others.  Hopefully, to do something so it doesn't happen to another person.  

 

Another time, 11 years ago, my mother had a full left sided stroke and could only be cared for in a nursing home.  The first nursing home was another traumatic experience.  I had been to Tai Chi for 20 years and in the first few minutes after warm up, you meditated with eyes closed.  Every time I closed my eyes, my mother's situation would cause tears to just roll down my face.  I had to stop closing my eyes and think about other things to stop it happening.  My balance was off and my emotions were out of wack.  My Tai Chi Master told me to cut up some ginger, pour boiling water over it and allow it to steep overnight.  It would restore my ying and yang balance.  It worked really well and I've used that re-balancing many times to deal with emotions and strengthening my inner core balance.  I'm using it right now as well.  I was then able to fight for my mum, raise a legal challenge, change nursing homes to an absolutely fabulous one and care for my mother for the full 10 years.  

 

I lied about my age and started work at the Peter MacCallum Clinic when I was 15 years old.  Went to night school and became a Medical Stenographer and loved working at the Clinic and stayed there for about 6 years.  I have always been afraid of cancer and now I can stop being afraid because I've got it.  

 

I'm using juices for extra strength and resilience following surgery.  Once I was home, I could sleep at night again and I know, pain management and sleep are key to healing.  I'm using a teaspoon of honey in my mouth every day to help heal my lower gum and from all reports, healing is going extremely well.  I'm also taking olive leaf to help my immune system fight, evening primrose and fish oil.  I was wondering what other people did to help themselves.  After diagnosis my surgeon asked me how I felt.  Shocked and annoyed.  Maybe I should take up drinking and eat white bread.  He said no, keep doing whatever you're doing.  Nothing that I had done had caused this. (That's a relief!)  Go and eat whatever you want to before surgery.  The only thing I could think of was hard things like peanut brittle.  

 

As I'm starting Radiotherapy tomorrow to the head and neck area - the Surgeon said things are about to get much worse.  Now, that's a bit frightening.  Does anyone have advice on how to get through this, particularly in relation to the mouth?  

4 REPLIES 4
Regular Contributor

Re: Recent diagnosis of adenoid cystic carcinoma of left submandibular gland

Hi Lampwork

 

Sorry to hear about your hospital experience. As if it's not bad enough being a cancer patient to start with. I think the best thing is just to put it behind you and focus on the path ahead.

 

I hope the radiotherapy is off to a good start for you and it's not as bad as the surgeon described. Moments are fleeting, even the bad ones. I'm hoping it becomes a distant memory for you soon and you can just get on with living.

 

I'm sorry I can't offer you much in the way of advice or support. Hang in there. All the best for you and the family. 

 

Cheers

 

Phil

Frequent Contributor

Re: Recent diagnosis of adenoid cystic carcinoma of left submandibular gland

Hi Phil,

 

Thank you.  Have put it behind me.  Two days of Radiotherapy completed and everything is going well.  I am hoping my side effects will not be too severe but whatever happens, I'm sure I'll get through it.    I met with the radiation nurse today and talked through some of my concerns and I know there's help for most of the effects.   

 

Hope you're doing really well and continue to do so.

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Super Contributor

Re: Recent diagnosis of adenoid cystic carcinoma of left submandibular gland

How are you  going now ? 

Frequent Contributor

Re: Recent diagnosis of adenoid cystic carcinoma of left submandibular gland

Hi Silly,

 

My mouth is terrible.  Uncomfortable, dry, tingly and just not itself.  Have an appointment with dentist tomorrow so may get some advice there.   Any advice?  Have used the mouth washes for dry mouths but have to have a lolly in my mouth most of the time or it dries out completely.  I'm hoping this is an after effect of the radiation and will stop eventually.  Am using English toffees and worried about the amount of sugar.   Need something hard like a toffee so can control where it goes in my mouth so I don't lose it on the side with no feeling.   Still no appetite or taste buds.  This will be 6th week after treatment stopped so getting anxious that this might be as good as it gets.

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