Hi Silly Diagnosed with ACC Sept 2019.  I don't worry but that.  I have also found that I have decreased kidney function and my blood pressure is high even though I am on medication for that.  I have been healthy all my life.  Hoping things sort themselves out.   ... View more

I thought that I had got through the removal of my parotid gland and subsequent Radiation Therapy relatively unscathed, however I still have a lot of swelling under my jaw and it is painful in places including up near my temples.  It is hard to open my mouth fully.  MRI has shown no infection only a small cyst near my pituitary gland.  So ENT Dr wants to keep an eye on this and said that he could refer me to a neurosurgeon if I wanted.  I declined because neither of us thought that it was really important.   I had been feeling a bit odd/unwell, and went to see my GP.  A blood test has revealed Hashimoto’s Decease which is decreased thyroid function and I am suffering from all the symptoms, including my worst fear of gaining weight and unable to shift it.  I have researched this and apparently 50% of patients who have had head and neck RT end up with thyroid problems.  Anyone here experiencing this?  ... View more

Hi Steph May I suggest that you try to eat some cooked salmon.  It’s such a nice soft fish, easy to get down in small pieces as at seems to melt in your mouth.  Also try to eat some of those custard puddings which should slide down easy.  Crème broulee, tiramisu, chocolate mousse, etc.   Believe it or not, but I also found I could eat small bites of bbq pork spare ribs, particularly the fatty bits that seemed to melt in my mouth and tasted great.  I could also eat Coles & Woolies potato salad.  I didn’t lose much in the way of  taste, but my taste buds were different so that any food that had ‘store’ marinade, was awful.  I also couldn’t face the thought of eating chicken.  I found that I could eat various types of cream cheese on soft white bread, minus the crust.  Same with toast. Even though the staff say 10 days, it’s more like 3 to 4 weeks.  My mouth fully cleared up by about by about week 6 but I still wake up with dry mouth and I need to have lots of drinks through the day, and water by my bed at night.  Can drink tea and coffee but not if it’s too hot. Now that I’m 2 ½ months post treatment I can eat just about everything except lettuce and green vegetables, except for beans.  A roast dinner is heavenly. A steak divine. It will get better for you.  Cheers Lorraine ... View more

Hi Wombat You have had such a hard time with your treatment.  If I had to endure what you went through, I would have pulled out.  In fact I was close to doing that until I got treatment for oral thrush and was told to keep up the pain meds.  I am really a bit of a squib. I found Lucas Paw Paw Ointment (red tube) to be fabulous for burns.  I only had a tiny one where my neck met my shoulder.  Perhaps my skin is so tough from years and years at the beach. I wish you all the best as you recover.  Cheers Lorraine ... View more

Hi Archie Good to be finished, but the radiation still continues to cause problems for the next 2 to 4 weeks.  For my sore mouth, the speech therapist told me to keep the pain meds up.  I took 2 panadol and 1 endone 3 to 4 times a day usually about 30 minutes before eating anything.  If you are lucky enough to get a script for endone, make sure that you take a tablet to stop constipation.  I also had a gel, referred to in the PA hospital, as ‘pink lady’ which was a 50/50 mix of Gastrogel and Mucosoothe.  Then coat the sore areas of my mouth with this gel, which has an anesthetic effect.  This enabled me to eat.  I lived off salmon, potato salad, all the soft custards, rice pudding.  Cups of tea were drunk luke warm.  But surprisingly I could eat pork spare ribs; the soft fatty bits that were soft to chew.  I still used salt and water to wash my mouth out.  I did battle with oral thrush which stings luck all hell, so the pink lady was such a relief. Now I’m 2 months post RT and am getting back into eating semi normally.  However my taste buds have changed and green vegetables taste like poison and I can’t eat lettuce. Cheers ... View more

Hi Steph I am so sorry that you are having trouble swallowing.  How do you get your nutrition and hydration?   ... View more

Hi Archie Make sure that you tell the RT team about your sores as they will cover these prior to your mask going on.  I had one very small sore at the base of the neck, so I used Lucas Paw Paw ointment which was much better than anything the hospital gave me.  You can buy this from supermarkets, but make sure that you get Lucas, the one in the red tube.   Don't suffer if you are in pain.  Good medication is your friend. Everyone is different, so it would seem that you are doing very well. Cheers Lorraine   ... View more

Hi Chris   Thank you for that information.   Cheers Lorraine ... View more

I thought that I might be well and truly on the mend post 3 1/2 weeks after treatment, but am having terrible trouble with my mouth again.  I went to see my GP through the week for a script for another type of oral thrush treatment and was prescribed  Fungilin lozengers.  These things are awful and don't seem to work for me.  Any tips?  I still have swelling from my surgery and RT on the right side of my face so I have mouth sores where my back teeth are and around the side of my tongue.     Am so sick of this, so if anyone has a regime they can share, I'd love to hear from you.   Also need help with a brand of tooth paste that is milder than our current Oral B as this t/paste seems to ignite nerve pain from my chin down to my collar bone.     Thanks in advance Lorraine       ... View more

Thanks Craig, I'll ask the doc when I see him later today, but I do feel well.   Cheers Lorraine ... View more