Tongue cancer

[Eldestdaughter]

Wishing you well with all of your upcoming surgeries and or treatments. Your Boys maybe your best medicine as you recover.

[Salival]

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!

[Salival]

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…

[LindaG]

Hi Salival, my friend has just got through radiation treatment for tongue cancer. It was hard, it was long but the cancer is gone so he says it was worth it! Be strong and courageous and you’ll make it through. Love and prayers to you 🙏💕 Linda G

[Salival]

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…

[LindaG]

Hi Salival, my friend had 35 radiation treatments then a PET scan a few weeks later. Also had chemo every second week. He just had his scan about 5 weeks ago which showed no more lump. So it’s all very recent. Just keep going friend! I can’t believe this time last year I had just finished chemo, had lost all my hair and felt so unwell. Now I’m walking 5km 3 times a week and my hair has grown back beautifully!! It’s so hard but the outcome will hopefully be very good for you 🙏💕. Linda G 

[djs]

Hi, I was interested in reading you comments as I'm just 2 weeks after having the base of my tongue removed and my right Tonsil.  Just starting to eat really soft meat with vegetables,  but small bit's at a time, retraining the tongue to close the wind pipe after the pain is under control is frustrating,  I'm glad you are getting there.

David.

[ericnnaji]

Hi, 

Thank  God you acted fast, because one of the control measures for this ailment is what you have just taken by yourself (acting fast).

Wishing you a quick recovery.

[Salival]

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.

[Salival]

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.