Tonsil cancer

Hi Scoobee07f0 

I had T2N0 and RT ( no chemo) to both sides too. There is a very useful thread on what to expect

https://community.macmillan.org.uk/cancer_types/head-neck-cancer-forum/f/diagnosis-and-treatment/287136/helpful-tips-for-those-about-to-start-treatment

Hi scoobee 

I was in a very similar position as you this time last year,  having my cancerous left tonsil and healthy right tonsil removed, left hand side lymph nodes removed, followed by 6 weeks of Chemo and RT to mop up what the surgery might have missed.

With regards to what to expect...are you having a PEG or RIG fitted?

Eating and drinking difficulties, and managing your pain are the main things you will have to deal with on your journey over the next few month, that will be full of highs and lows.

Thankfully I had a PEG feeding tube fitted, that enabled me to get calories in (Fortisips from the nutritionist team) and stay hydrated, that I used extensively for 4 weeks following  the CRT treatment.

That 4 or 5 weeks following treatment were the most difficult for me (and seems to be for most) as I was unable to eat or drink orally and my salivary glands were all over the place, having to constantly have spit cup to hand to clear my throat and mouth of gunky stuff. Spend as much of this time as you can by managing your pain and sleeping or just resting

But, then it starts to get better, slowly but surely. By week five I was trying and managing soft foods, custard pots and the like (although they had little or no taste). A couple week's later more solid foods like omelets, porridge, and even fish pies, still with a little throat pain and always with a glass of water to hand to help them down. But being able to eat and with taste returning, you realise you are getting better so you have to power through the slight pain of eating and begin enjoying food and eating again.

A month later I was eating most foods (still with a drink to hand), avoiding anything dry, and a month after that I was well enough to be able to return to part time work.

So, you have to expect a tough journey ahead, full of highs and lows. Enjoy and celebrate each and every high during your recovery, don't dwell on the lows and stay positive, knowing that you are in the hands of expert consultants and wonderful nurses, who all want the best outcome for you.

And stay on these boards,  as the community here have years and years of shared experiences of head and neck cancers and are always on hand to support those starting or are on this journey, with their wealth of experience and knowledge.

Best wishes for your treatment and recovery.

MickyC

Chemoradiotherapy can be a difficult treatment for some patients, mouth and throat pain make eating difficult, in some cases impossible, having a feeding tube in place before treatment starts will aid recovery immensely, taste and appetite normally suffer.  

Make sure you have enough pain relief meds, don't suffer in silence.

This forum has helped many head and neck cancer patients to get to the end of the treatment journey...stick with it...keep the forum updated with your progress.

Thank you.

They say i‘m getting a NG feeding tube but not before treatment starts, only when I finally need it. Did you need a humidifier during treatment?

Scoobee07f0 said:

They say i‘m getting a NG feeding tube but not before treatment starts, only when I finally need it.

That’s what I had. In week 4. I fed at night via pump. Left the day free. Bolus feeding was time consuming and I hated it. 

Did you have to sleep propped up to be able to use the pump feed at night? I have suffered moderate to severe pain for years due to back injuries/failed operations and cannot sleep propped up, only on my sides. Is this issue also going to cause me problems with handling mucus? The relentless pain for too many years has partly broken me mentally and the thought of what is to come during and after treatment is seriously getting me down and has me wondering if the quality of life i will end up with is going to be worth it.

Hi again Scoob. 

No, I never felt the need for a humidifier, but I know many here did use one.

Also, as I never had an NG tube, I'll have to leave it to others to advise on moving forward with nutrition and treatment with one of those.

MickyC

I did sleep propped up. You can pump feed in the day carrying all the paraphernalia in a little rucksack. I never had much trouble with the sticky saliva. I just spat it up into a bit of kitchen roll and left it on the floor till morning. In the day I tried steaming over hot water with a towel around d my head but I can’t say it made much difference. Some people here got a nebuliser which helped a lot. If you really get into trouble there is a drug called carbocysteine which helps loosen mucous so that you can cough it up more easily. 
Try not to overthink all this. Take it day by day. You may not be that bothered by all these side effects. Some people get off very lightly.