Hi. 8 weeks post treatment and scared

Hi JCPH

T2N1M0 HPV16+ tonsil cancer  .....30 radio + 4 chemo  

I finished Chemoradio for tonsil cancer in June 2023....then spent 12 days in hospital due to rapid weight loss ....felt very sorry for myself...appetite non existent...could barely speak....dependant on morphine to control pain....Laxido to ease constipation....oral thrush.....aggravated hernia due to constant retching and coughing...and other various annoyances due to reactions to meds....

But things did improve ...slowly at first ...then picked up pace.

August I started eating small meals...little or no taste...no appetite ....eating to live....PEG tube out in September.... PET/CT scan clear....eating much better....taste and appetite returning slowly....October/November went to Canaries on Holiday...Healthy BMI...playing sport and swimming.....This year I have been on a couple of sunshine breaks ....appetite and taste about 85%..still improving....

Yes the journey is mighty tough for us and being scared is part of the journey....but there is light at the end of the tunnel.....and a very high cure rate.

Take care and best of luck

Peter

You're welcome. The great thing about this forum is, we all know how it feels, before, during and after treatment, then into recovery, so talking about it on here is a great help. Stick with us, we're all here to help each other.

Ray 

Thank you Ray! Your reply is truly appreciated!

Hello Peter, ooh you really had it tough by the sounds of it! I am so glad your PET/ct was clear and you have been returning to some sort of normality. I strive and hope to be where you are in the coming months! Thank you for taking the time to respond it means a lot. You take care! 

Hi JCPH

I can emphasise with how you feel.  I am a couple of months in front of you and still have a painful throat on occasions and sometimes sound like Barry White!  I am told that does have it's benefits, but probably not at my age

As others will have said there is a really good chance that you have been cured.  They won't know until the scans are done and we all understand how trying the waiting is.

Appetite will come.  I still use Fortisips to up my calorie intake.  Each month it gets easier and more enjoyable to eat.

Try to do some things you enjoy to take your mind off the wild and uncertain thoughts that we all have whilst waiting to know if the treatment has worked.  Alternatively seek help from your GP.  They really do understand the trauma that we have gone through and should be able to give some short term help to get you to the results day.

Hello Peter

Thank you for taking the time to reply. It is reassuring to know I am not alone in my physical and wierd place I find myself in right now! I didn't get on well with the drink supplements so I use complan! I am encouraged to know my appetite may recover although I find no pleasure in eating right now, hopefully again that will change in tome?

Can i ask? How long between having the PET scan and finding out the results  

Thank you so much for taking the time to reply you can be assured it's truly appreciated.

You take care.

JCPH said:

I am encouraged to know my appetite may recover although I find no pleasure in eating right now, hopefully again that will change in tome?

Can i ask? How long between having the PET scan and finding out the results

Food is fuel. If you can swallow it then get it down...it's mantra you'll find oft repeated in these pages. I could manage at rare steak at 12 weeks but it tasted of nothing. I was quite happy not bothering with food for six months but taste did get better and my appetite returned. 

PET results are available to the referring physician normally in three working days. You have to factor in the MDT which has to process the report so you might be lucky with around a week but most of them take two to three weeks

Hi Dani

Once again thank you for your reply. I am so grateful to you and the other lovely people on here who have taken the time to reply!

I Hope when I am finally at the better end of this journey (fingers crossed) I can help others as you do.

I am really grateful to you! Big time!

JCPH said:

I Hope when I am finally at the better end of this journey (fingers crossed) I can help others as you do.

That would be a grand thing to do. This forum was my mental saviour, especially in those early days and it's the same for a lot of us. It's why many of us hang around. 

JCPH said:

Can the treatment I had really cure it?

I'll tag a friend Debbielouise who was also T4. She is a few months out of treatment now and got her all clear after a particularly difficult time. She is on holiday somewhere in the sunshine. I'm sure she'll pick up when she gets home. 

In my case (this time around and I have been through this mill 3 times) it was one week.  I had my review booked in as soon as I finished treatment and the PET scan booking came through about 2 weeks before the actual scan. 

On previous occasions I have had to wait up to 4 weeks for an answer.  That is tough, but the answer was a good one.