131 replies and 14 pages.   Very good work people.   Phil - I forgot to say that is a lovely photo of you.  Your haircut looks great and again, you're very brave.   You look really strong and fit.  Well done.   ... View more

Hi Peter.   Not much I can say but that I'm sorry this has happened to you.  I'm glad you're a hell of a fighter because this is going to be a big battle for you.   I saw an inspiring documentary called the C word which I'd recommend.  You need things to give you hope and help right now.  Can't remember the name of the documentary on cannabis but it was very interesting and I knew it's a path I would look into more down the line if necessary.  At the moment am getting through Radiotherapy - 8 treatments left out of 30.  So far so good.     I wish you well on your journey and always happy to discuss anything you want to.  I guess we all are here for that purpose.   ... View more

Thank  you guys.  I've decided to play more dance music and possibly plan to pirouette (noun BALLET  1.  an act of spinning on one foot, typically with the raised foot touching the knee of the supporting leg) over the finish line.   I am possibly a little sick of myself today.  I have just watched a documentary about Japanese dog grooming!  I am definitely losing my mind.  I think I shall tidy up the garage for something to do and then weed the vegetable gardens ready for Spring.  The sunshine is lovely today and I'm sure no  one will mind me wearing gardening boots with my dressing gown.  Just for today at least.   Claire - as a Dutch person - can I just say that Edam, Gouda and spiced Gouda are also very good cheeses. I can't eat any as they taste like rubber right now.   Still on the chicken broths.  I did discover hard boiled eggs mashed into avocado but have eaten it so often, can no longer face it.  I never tire of the chicken broth though.  Apparently whilst having Radiotherapy you're not allowed to have soft boiled eggs.  I never knew that.  My knowledge base is increasing exponentially thanks to this new club I find myself in.                 ... View more

Sorry Chris.  It's a tough diagnosis.  The bit I haven't talked about much yet is being told that not if - but when this cancer returns - which it will.  That's what I was told originally but that it might not return for 15 years.  Afterwards, the surgeon said he thought he had managed to get me a cure because of the clear margins.  That definitely made me feel better.  Even though you didn't have clear margins, hopefully the Radiotherapy will kill any remaining cells.     I wondered if your teeth were removed because as you say, the Radiotherapy will kill them.  It's horrible to have a sore mouth.  I think my Therapy started about 2 weeks after surgery and my neck scar and mouth were still healing.  They took a muscle from my neck and used it to lay over the wound in my mouth to close the incision.  I was freaked out about having the Radiotherapy to a partially healed wound.  It's all gone really well though and the only side effect I have so far is a bit of redness to the neck area.   My surgeon warned me that not only would the Radiotherapy be bad but even worse for a few weeks after Raiotherapy stopped.   Again, not too bad so far.   I've seen some horrific open burn wounds on necks following radiation but again, has not happened to me.  Be super careful with your skin.  Keep some cream in you car to put on your neck to put it on straight afterwards on the way home.  I was told that no matter what happened to the neck, burns or open wounds - treatment would continue.  Another reason to take special care.     One way to stay positive is to think about all the ways you could have died - instantly - yesterday.  You still have time to fight today.  You still have a chance of long term survival and that's a good prognosis.     You still haven't stated your age?  Don't if you don't want to.  I was just interested.   ... View more

Good evening!  I spoke too soon.  I'm up because I couldn't get to sleep tonight.  Jinxed myself!   Phil, I don't think you need to be braver.  You are brave enough already.  I absolutely understand your feelings about going out in public.  Do whatever you are comfortable with.  I'm pleased to know the ostomy is temporary and will be removed in November.   That's pretty good!  Very strange about your hiccups.  Uncomfortable too.   I think I'm awake because I'm worried about my hair.  Vanity.  Sheer vanity.  I guess I thought it wouldn't fall out as I wasn't having chemotherapy so am a bit distressed right now.  I've been looking up wig places and for some reason that really frightens me even more.     I'm glad you're sharing the weekend with me.  To pass the time this week I have been watching a series about hoarders and am morbidly fascinated with the condition.  The mess and detritis of it makes me pull up my nose at the horror of it all and it's really good at getting my mind off other things.  There's not much else around to watch that actually takes my mind away from the reality of life.  I will hopefully work on my quilt and cook lots of chicken broth.     Speaking of abs - I have a story for you.  One of my daughters has been practising Kung Fu for the past 8 years.  She is hoping to go for her black belt at the end of this year.  She runs with her German Shepherds every morning at 6.00a.m.  She has two daughters who also run and do Kung Fu (plus ballet and music) so she's a pretty busy mum and works.  To prepare her body she trains really hard on her fitness.  She is now up to 250 sit ups every morning and she has abs of stainless steel!  Sheer determination and willpower that is.  I am in awe of her.  You too can have these abs.  Maybe just start off slowly and work your way up.     Thank you.  I have the finish line in sight and will either run to the finish line, fall over just before it or stagger over the line and collapse.  Doesn't matter.  As long as I make it through to the finish.     Goodnight and sleep as well as you possibly can.         ... View more

Hi Claire,   All excellent points.  I think I'm still at the keeping people away point.  Offers of coming around to see me send me into a panic.  No.  I'm busy.  I'm in recovery mode.  I just don't feel like seeing people.  I see my family every day and that's more than enough for me to be dealing with.  My husband is working tomorrow -- on a Saturday - he's asked our kids to call in.  Just in case I'm lonely!  FFS!  I love the weekends because there's no radiotherapy.  I'm usually sick to death of every day going in for treatment.  I really look forward to the weekend and stay in my pj's to remind myself I'm recovering.  I am really happy on weekends.  I'm nearly through it.  Eight more treatments to go.  I then want it to be over.  Done with.     Today is the first day I've ventured to the butcher.  As my mouth is askew until I get new bottom dentures which will hopefully straighten my mouth out a little, I really don't like people seeing me like this.  I wear a scarf to hide my neck but I can't hide my mouth.  I feel a bit fragile out in the world.  A bit raw.  A bit changed.  I know that in the scheme of life it's all good.  Just a minor hiccup.  I'm hoping it will get easier.     Claire - I hve to confess that I get 10 hours sleep every night and can attribute my good resilience with the treatment to that partially.  I have 50mg of Endep each night and it is bliss.  Before surgery I hated those times when I would wake in the middle of the night which is the worst time for people with this diagnosis of the big C.  It's cold, dark and makes you feel very alone.  It  is a bad time for those dark thoughts and worries.  I'm very grateful I no longer have that problem.  Endep is an anti depressant that miraculously fixes osteoarthritis, strengthens the bladder and gives you good sleep.  It is also excellent for nerve pain which is particularly important with an AAC tumour.  I don't take any other pain relief.     What else have I learned?  That we are traumatised.  The diagnosis tips our world upside down.  All our thoughts and plans go onto a diversionary path.  I think we do get to a point eventually, hopefully for most of us, that we know we have come through it.  We're not quite there yet but can now see the finish line.  That's where I think I am right now.  The worst is over.  There is hope for a future.  That's a good space to be in.     Take care.  Be well.  You're doing great! ... View more

On Radiotherapy - I've just completed 22 treatments and have 8 more to go.  What can you expect?  A strange mask being made for you to keep you in position for the treatment. The treatment itself takes about 2-3 minutes.  It's more the dressing and undresssing that takes up time so wear comfortable and easy to remove clothing.   Unfortunately, it is every day come rain or hail.  They told me that even if the skin on my neck broke open, treatment woud still continue.     I've had no nausea, vomiting, skin breakage, tiredness or any other symptom associated with the therapy.  I have taken an olive leaf tablet every morning before and after surgery, as well as throughout the radiation therapy.  If I didn't feel like taking anything else, that's the one I made sure I took every day.  It boosts the immune system.  On my neck I've used paw paw cream, my own recommendation and sorbilene, the hospital's recommendation.  The skin is quite red now but holding strong.   I've had the luxury of not having to go to work or do anything much throughout the treatment.  Just normal housework and small shopping trips to buy fresh chickens.  I have eaten a great deal of chicken broth, made with all sorts of wonderful things in it like ginger, onions, garlic, turmeric, cinnamon etc.   I find it wonderfully soothing for my mouth which seems to have suffered the worst of it.  It often feels hot and burning.  Cold things like yoghurt, jelly and icecream help too.  Lots of mouth washing, secial mouth washes and hydrating mouth washes too as the mouth can become quite dry.  Water made from ginger soaked in boiling water overnight has greatly helped too.  I juice watermelon a few times a week as it is great for getting rid of any toxins in your body.  I am worried that my hair seems to be thinning out, which is quite stressful.  I had hoped to not lose any at all.  It was also one of the first symptoms I had.  Dry, damaged and easily broken hair.     That's about all I have.  When you have your mask put on for the first treatment, speak up if it is too tight.  I made the mistake of thinking it would be alright because it was only 2-3 minutes and I could put up with it.  By the time they took the mask off about 30 minutes later, I was crying.  It was just too long.  You will be in the mask for varying lengths of time.  The 2-3 minutes is only the time that they are actually radiating you.  They put a spacer in it for the next treatment and it was fine.     Sometimes they give you a bell to ring if you need them to come back into the room for any reason.  Whenever they don't give it to me, I get frightened that I'm going to choke.  Today for the first time, I actually asked for the bell.  I haven't had to use it but it just makes me feel a little less panic.  Something awful happened yesterday.  There was a fire drill.  I had just finished my treatment and was about to leave.  We waited around for about 30 minutes or so.  When I went to the lift a lady was complaining that she had been left in her mask on the table and everyone had left her there.  That would be my worst nightmare.  The poor woman!  Always ask for the bell.   I hope that helps you Chris.  I hope it doesn't sound too preachy about the olive leaf.  It is the best thing to boost your immune system and right now your body is under attack whilst it is recovering from the surgery, stress and radiation.  I can't tell you how much this has helped me get through this.  Good luck and ask any questions you like.  I hope everything goes well for you and you come through this with flying colours.  Let us know. ... View more

Completely understand that you're depressed and terrified.  Another question - What was your biopsy report?  Were your margins clear?     My surgeon told me not to research the diagnosis.  I did anyway and you're right the diagnosis is horrible.   I've looked up where the parotid gland is.   "The parotid glands are a pair of mainly serous salivary glands located below and in front of each ear canal, draining their secretions into the vestibule of the mouth through the parotid duct. Each gland lies behind the mandibular ramus and in front of the mastoid process of the temporal bone."   I'm assuming that your tumour was taken out via the side of your face and through your gum if you had to have teeth removed.  You can expain that a bit better if you could.  As mine was taken out via the front of the neck and through the gum - surgery was pretty awful.  Luckily, I already had false teeth.  It means I can't wear my lower plate as I have a graft over the left side of my gum.  I will have new dentures made in about 2/12 time.  Soft food diet for now.     I can't point you in the direction of happy research about this tumour.  It's all pretty dire.  I looked for stories about success and survival.  I found a few that gave me hope.  I was told it was fatal, aggressive, always comes back, metastasises quickly by the surgeon.  Luckily, I had no metastases or nodal involvement.  That gives you a much better outcome with this tumour and I think you may be in the same boat.  I asked about immunotherapy treatment but was told that I wouldn't qualify as I wasn't bad enough.  Well, that was good!  The surgeon said he thought I had a cure.  6/52 of Radiotherapy would just ensure that.       ... View more

Hi Chris from the UK.   I read your email early this morning and have been thinking about it for most of the day.  I read somewhere that the average time for diagnosis of this type of cancer is 8 years so you've done well.     I have some questions for you.  T3 is size of tumour. 3mm.  Does that mean you are T3N0M0?  Nodes involved - 0.  Metastases - 0.  I'm T2N0M0.  I was dagnosed within a year so that was pretty good.  I was absolutely sure I did not have cancer as the gland was painful.  After one ultrasound I was given a high dose of antibiotics and the gland reduced in size.  Cancer does not reduce in size with antibiotics.  A fine needle biopsy said a benign cyst.  I was very happy with that diagnosis but the surgeon was not and requested a cone biopsy which unfortunately showed ACC.     How old are you?  I am 64 and had just retired so pretty annoyed that this happened at all. I keep reminding myself that this cancer happens in 15 year old girls.     I will post again but just wanted you to answer those questions if you could.   ... View more

Hi Phil,  The same thing happened to me yesterday.  Long post too (of course) but on a different thread and the maintenance fairies ate it!   Glad you're getting some respite from your treatment.  I have just finished 17th treament and only have 13 more to go - so over half way.  I am doing brilliantly well.  Staff are very impressed with my skin, no fatigue, no nausea and vomiting or mouth ulceration so far.  Cleaned the house from top to bottom today in case things get worse over last few weeks.  Put on a kilo last week which is a miracle as I am only eating broth, boiled eggs and mashed avocados.  Yoghurt, jelly, icecream.  Travelling very well.  I have never appreciated weekends as much as I do now as it is a long awaited holiday from travelling in every day to the Alfred Hospital for treatment.     Look forward to many more posts from you and Claire next week.  Have a wonderful weekend.  A bit of sunshine today has made me feel as if Spring will soon be here.  Can't wait!     ... View more