One year anniversary since diagnosis (11 months post Surgery) and honestly all is going well. Follow up ENT appointment this past Monday and first time they’ve stuck the camera up the nose.  All good and next appointment in 6 months so that seems to be a good sign.   Dry mouth is still there but it’s not too bad, mainly notice it when I’m in the air-con in the office. Appetite is returning somewhat but some days I could take it or leave it.   I feel really lucky to have had it caught so early; if it weren’t for the scars and the slight tongue tie then it’s almost as if nothing happened at all! ... View more

It’s been some time since I last posted, so here goes. Completed radiation mid-July and it was horrible.   I made it to say 28 before I was admitted to hospital as I could neither eat nor drink so was dehydrated and essentially felt broken. Two nights in hospital and I started eating and feeling relatively well, until two days later…   From that point on I did not eat for 3 weeks; I tried to drink the hospital supplied drinks but I could barely manage 3 bottles (1200 calories daily) and as a result I was losing 2.5kg each week.   Some 2 months later, I’m feeling okay; I still have pain in my jaw, my appetite is low, although I do try to eat 3 meals daily, but I am definitely eating way smaller portions and the dry mouth has definitely hit hard. I’m drinking close to 1L of water through the night as I wake and my tongue feels like sandpaper.   With regards to weight loss, I was expected to lose 5% of my body weight, so 4.5kg thereabouts, but I’ve dropped closer to 23kg, which has been concerning for everybody else bar me.   I appreciate all the responses offered to me through this forum, and it has been helpful to hear from others with similar experiences.   Thank you. ... View more

Thanks Eric. I think I speak for a lot of us when we note a (potential) issue with our bodies that it is far too easy to write it off as a passing ailment which will likely correct itself.   I am so thankful that I realised that this was out of the ordinary and that it warranted further investigation.   Having dealt with it for the past year then I have obviously been asking myself questions such as “was it there when I had the first biopsy?” and “would scans have showed a tumour way back then?”.  Of course these questions all fall into the ‘what if’ categories which have caused me the most anguish. I don’t think things would have changed any but naturally it’s still a concern.   Moving on, I haven’t updated in a few weeks so I am now 2/3 done with radiation. The end of week 2 saw the start of my side effects which became full blown in week 3. The worst being an ulcer on my tongue (opposite side to treatment) which measured some 40mm x 10mm and caused me so much pain and discomfort - any acids within foods hurt incredibly and everything I did affected it. I was prescribed fentanyl patches along with the oxycodone and not even that provided relief.   Over the course of 10 days, despite my best efforts to eat or drink meal replacement shakes I lost about 5 kg. I seem to be past that now in that I can eat again however I definitely note the change in taste and so on.   I haven’t got the dry mouth issue, in fact I’m dribbling more than ever in my sleep and the saliva is quite thick and difficult to expel.   I’ve returned to work (albeit 3 days per spread across the 5 days) and it’s been good to focus on something other than all this. Fatigue hasn’t been too much of an issue and I’m feeling well again.   Not long to go now and I can focus on getting on with things and try to ignore the fact that this isn’t really over but is at least the end of treatment for what I hope is the hardest phase.   Thanks to all who have followed my story and who have taken the time to respond and to offer me encouragement and so forth. I’ll be back in a couple of weeks to celebrate the end of my treatment and hopefully it’s all uphill from there!   Kind regards, S.     ... View more

Thanks Linda. Turns out this is all a lot harder than I had myself believe.   I’m into my 3rd week of radiation and if you had of spoken to me last week, I’d have told you it was all good and there were no side effects.   On Friday evening though, I started to notice some pain and a lot of discomfort from the ulcers on my tongue and inner cheek. This all happened within a matter of hours after my 10th treatment.   I still have quite a ways to go so I’m expecting things to get pretty rough, if the way I’m feeling now is anything to go by.   But, as your friend said, it’s worth it in the long run. May I ask how long ago his treatment was, and if he had any recurrence at all?   Thanks for putting up with my ramblings everyone 👍   Til next time…   ... View more

A brief update - commenced radiation this past Monday (week 9 post surgery) and it’s  too soon to tell the negative effects. I’m feeling well and am looking to return to work. If it weren’t for the radiation I’d be back at work already. Maybe I’m a little ambitious but we’ll just see how things pan out. Stay tuned to see how the next 27 sessions go for me… ... View more

Thank you. Yours, and everybody else’s well wishes mean a lot me. I never could have imagined going through this however the support I’ve received from family, friends, my employer and people such as yourself certainly warm my heart and makes me believe that in time, everything will work out! ... View more

Thanks Budgie. I appreciate both your response and linking me to a similar experience. I guess every situation is different however it is still valuable information for me to digest prior to the start of my treatment. Many thanks 🙏🏼  ... View more

Thanks Linda. After 9 days in hospital I was discharged so that I could spend my birthday with my family. It truly was the greatest gift of all!   I’ve since been informed that I need to undergo radiation treatment as the depth of the tumour was 6mm and typically radiation is recommended wherever the depth exceeds 5mm.   I’m at 3 weeks & 1 day since surgery and am feeling good - I can eat most things now however some solids can be tricky (bread and other foods which tend to get stuck in the roof of the mouth).   I’ve lost around 5kg since surgery which probably isn’t desirable leading up to radiation however I’m still at 90kg so there is still plenty of me and I’ve never eaten so much in my life - only difference now though is fewer carbs and healthier eating all round.   I don’t know all the details of the radiation yet which is kinda daunting and I’m guessing that this stage will be tougher than the surgery.   Has anyone here been treated with radiation on the tongue? What can I expect and do you have any advice / tips for me to follow?   Many thanks.   ... View more

So things escalated. 7:30 Monday morning April 11 I received a call asking had I eaten? Luckily for me I WFH and tend to eat mid mornings.  Well a whirlwind of emotions and fears ensued and within 2.5 hours I was on the operating table prepping for partial glossectomy, radial free flap,  neck dissection and everything else this op entails. Operation was a success and I was out of ICU and on the wards on Tuesday. Pathology came back saying no cancer in lymph nodes or surrounding tissue but depth of incision was 6mm… First few days found it hard-mentally. Then Thursday just gone I started walking around the hospital, and have repeated this numerous times a day since then.  Friday afternoon started to talk / verbalise whatever you want to call it with upper cuff trache inserted and have shocked doctors at my progress.   Hardest part though is the lack of sleep and loneliness I feel at night. I haven’t seen my two beautiful boys (5  & 4) yet as it is too confronting for them just now.   I just wanted to thank this community for giving me a voice when I needed an independent vent  Much love xox ... View more

An update - surgery was scheduled for May 2nd however I discovered that my private cover is inadequate for this type of surgery so I have a couple of options: front up the cash (12k + anaesthetist) or wait on availability in the public system with the same surgeon whom I met last week. Spoke with my GP also who said that it is not an aggressive tumor and won't grow overnight so I'd be happy to wait 2-3 months, maybe a little more but I think if it exceeds 5-6 months then I might just have to pay and be done with it. Health provider did say I could upgrade and have their doctor's evaluate the 'pre-existing' condition exemption (meaning a 2-month waiting period rather than 12 months) but I feel that because I was first alerted to this almost a year ago, despite it only being confirmed cancerous a few weeks ago that they'd reject it so I'm not really even considering that right now. So feeling a little less optimistic right now but we'll see what the surgeon says and just go from there... ... View more