adenoid cystic carcinoma

[Lorraine4132]

Hi Craig

Thanks for asking after me.  Post 3 weeks tomorrow RT, I am travelling well.  I never lost my sense of taste but it has changed somewhat.  I now only like the natural taste of food but absolutely gagged on green veggies with my dinner last week.  The potatoes and sour cream were okay.  My mouth, tongue and throat is only a little sore, the thick mucus has disappeared and my mouth is not so dry when waking, thankfully as it was like I had swallowed a burning piece of bark or chewed a lit cigarette. However part of my tongue is a little rough, like a cat’s tongue.  So I am going to the GP today to get some oral thrush med as the Nilstat is not working anymore.  I am also going to ask for some nerve pain med and more endone as I have a bit of that, but it’s not that bad.  I now appreciate good pain drugs.  Funnily enough we have CBD oil but I haven’t used it.  I feel a bit of a fraud by going to the doc, but I don’t need to take anything if I don’t need it. 

RT has removed a small mole on the side of my face!  Good, I didn’t like it.  Skin and neck recovering well.  Lots of cream, courtesy of the PA hospital.  In the last week the crease in my neck became sore.  I had not put cream there as I hadn’t realized that the RT extended that far.  Lucas Paw Paw ointment was excellent for helping the burn.

People need to make sure that they keep well.  I developed the sneezes last week yet still kept cooling off in my pool.  It ended up as a head cold and I did not feel well at all for a few days.  So rested up.

Tiredness has just about gone.  I am now actually doing a bit of housework (husband and daughter have been taking care of this).  

Lorraine

[Wombat]

Glad to hear about the upside (the mole).  As Dumbledore says (in the Prisoner of Azkaban - sorry - massive fan): "Happiness can be found, even in the darkest of times, if one only remembers to turn on the light."

It's my new matra.

I recall the surgeon seeing me the morning after my procedure.  The key words that stuck were: malignant, intricate and infiltrated.   He was particularity worried about how the tumour had infiltrated inwards and outwards.  He explained, with a very serious face,  that he had to "take" more  skin under and around my ear than he expected. He described it as having a mini face lift  I couldn't then help but smile. Only problem is - I have had a one sided mini face lift!  🙂

[Tassiedevil]

Hello Lorraine   I am glad your feeling well and not tired any more, sorry about the house work, it takes a bit of time to get back on your feet and feed. I enjoyed the natural flavours of food after about a month or so and it was great to do so as I am a chef and my wife doesn't cook. My sense of taste has changed and I don't know if it will ever return to what it used to be but I can still knock out some damn tasty food when needed.   Be sure it was a head cold I had something similar that turned out to be a nasal infection from my immune system being suppressed by the radiation and the area that was irradiated. I will  sign off for now and wish you a speedy recovery  Craig

[Lorraine4132]

Hi Wombat

Great Mantra – bless JK Rowling – author extraordinaire and philosopher.

Sorry you have only had a mini lift on one side, that’s a bit sh*te.   RT on one side has meant that my right side has far fewer wrinkles than the left.  Smooth as a babies bot.  We might make great models for those instant face lift creams!

I hope today’s treatment goes well.

Lorraine

[Lorraine4132]

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

Cheers

Lorraine

[Tassiedevil]

Hello Wombat, great to hear you have a mantra to follow in your journey. Everyone needs something or someone to get us through. Mine, I think, was my wife's love and determination that I would not die and I thank her every day for that. Having said that I hope they got it all and you don't have any more problems requiring another mini face lift🙂. I had a PET scan to find any other sites and it proved to be clear. So I'll sign off for now .   Craig

[MM]

Hi Archie,

I was told to use the Moo Goo product on my face and already had the Moo Goo shampoo that I use anyway. It's available in chemist and health food shops and is a natural product so can't imagine it would be an issue.

[chrisuk]

I found "Calendula Cream" to be very good at stopping the radiotherapy from burning my skin. I would rub it on my skin as soon as I got home from the hospital and wash it off just before the next treatment. Also try a mouthwash called "Caphosol". I found it excellent at reducing soreness in the mouth. It's very expensive but my doctor kindly prescribed it for me.

I'm now just over 3 months post treatment after having my parotid removed followed by 30 days of radiotherapy. My ear is still very numb and the dry mouth is a real pain. I have to sip  warm water with almost every mouthful of food. It makes eating very tedious. Also, because I am consuming so much water my sleep is disturbed by trips to the bathroom! I've lost 13 kilos since last August, I'm not too unhappy about that because I was overweight to begin with! One side effect I was very pleased with was the destruction of my beard! It took me about 30 seconds to shave! Ironically the beard is recovering faster than everything else!

[Lorraine4132]

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

[Wombat]

Hi Lorraine - no tips here.  However, have you posted on the FB group "Without a Ribbon"? I have sort "tips" from this group.  Steph (AKA Wombat)