Right tonsil primary - 2 weeks into radiotherapy ...

Morning

Welcome to the group although I’m really sorry you’ve found yourself here. You’re in the right place as there is loads of support on here.

One thing I have learned on this journey is that everyone is very different and experiences things at different times.

My hubby had left tonsil SCC HPV 16+ and he started the gagging, mucous thing very late on at maybe week 4 of treatment. 

He really struggled after his tonsillectomy and certainly couldn’t eat through that. 

He had a PEG feeding tube and took Fortisips through that.

Have you discussed your symptoms with your team? Do you have a weekly review? 

Hi Ezzie

Its a real pig to have to contend with feeling sick on top of treatment. 
I had T2N0M0 base of tongue SCC with just 30 doses of RT and I can tell you that from mid week 3 I felt sick all the time. I could almost throw up to order. 
I’m sure it was a combination of the treatment and the analgesia but I wasn’t prepared to give up pain killers. 
I had metoclopramide but I’m not sure it did much really 

Im afraid that my nausea persisted till after treatment but if I felt sick I learned to force it back down. 
Don’t worry about not being able to cope. It’s just another if the symptoms you’ll learn to live with albeit temporarily 

My advice is to try not to worry about what might happen whilst still being prepared to cope with the pain with proper analgesia. 

You’ll get through it. I

Good luck and sorry you’ve had to join our very elite club. 
Any more questions ask away 

If you feel you can’t post things in open forum all of us here with some experience of what’s to come can be sent a friend request si tfat we can reply in private. 
Keep going. 

Hi Ezzie 

Thus is Hazel I am 20 month post radiotherapy for tonsil cancer with several affected lymph nodes.All I can do ian echo what Dani has said ,we are all different inwas lucky I didn’t loose taste or have any sickness .A friend though bless her she was sick uo tom8 times a day so it’s not unique to you it’s just our bodies handle everything differently.

feel free to send a friend request I don’t you want and will help as much as I can 

I have a blog info below you may get some tips from it all I can say ian I am a wimp and if incan do it anyone can it’s not easy but enough of us on here have been there and done it so to speak. 

I had a n g tube fitted week 3/4  as I could no longer sustain myself  even in the ensures ,don’t know if your hospital is still offering them in curren climate but if they are don’t be afraid it’s what helped me the most .Plus don’t suffer pain the painkillers are there for a reason 

keep in touch Hazel x

Hi Ezzie ~ I’m so sorry you’re going through this. It is so challenging, both mentally and physically. My husband is also just starting out. He has base of Tongue with 3 lymph nodes involved- left side. He had TORS ( Robotic) surgery 3/12. He has only had 4 radiation treatments and his first chemo treatment, and he has been feeling sick since last Thursday. The severity does fluctuate, but there’s always a constant, underlying nausea present. I don’t think we were expecting this, so soon, either. Thought things would kick in later. We live in the United States, so treatment may be a little different, but his doctors routinely give Intravenous fluids for hydration for two days after chemo. When he was seen by Oncology after radiation today, they decided to give him more because he wasn’t well. I think he, like you, is just so discouraged because he also ate and drank all the way after Surgery in March, even though it was incredibly painful- even with a lot of medication. So he thought he could conquer these first few weeks without so much difficulty. 

Are you getting Chemotherapy also? I’m sure the Thrush isn’t helping either. My husband doesn’t have any throat pain yet. Just varying levels of queasiness, constantly. Sometimes very, very bad. Today and last Thursday he was lying on the floor thinking he was dying. And my husband is a large, sturdy, strong man.....who I’ve only ever seen have tears in his eyes two other times in our 31 years of marriage....but the fatigue and sickness just gets so intense.

He’s still able to eat and drink if we keep up with his anti nausea meds. Do you have a feeding tube? My husband does not.

He got really, really grouchy and frustrated today. I think because, like you, it just seems so early, and he’s fearful that if he feels like this now, what will five more weeks bring. He also sleeps a lot, some out of fatigue, but some from the side effects of the two different nausea meds. 

Be kind to yourself....it’s not that you aren’t “coping “!!! It’s so incredibly difficult!! And I think every body reacts differently. And my husband had the idea that he wouldn’t feel too differently for a few weeks...maybe you felt that way as well. So it’s a huge frustration, a complete mind shift that you both weren’t ready for. We all have to hang in there, and just keep reading the outcomes of all these wonderful, encouraging people on the forum! They PROVE that this is doable! You  both, and everyone else in treatment, or just starting, will come out the other side, to help others. Please hang in there. And keep in touch to say how you’re doing!

Elizabeth

Hi Elizabeth

I really feel for you both.

It's horrible being so out of control. That's the singular emotion I found almost impossible to bear. I got quite depressed during treatment and vacillated between euphoria that I could be cured and doom that I was dying. However, in the last couple of weeks and the few ghastly ones after I came to terms with what I should be doing and just went with the flow. I hope your husband can similarly come to terms with it not being a fight but rather a healing then I think he will find the whole thing more easy to bear

Keep fighting xx

Morning

well thank you for the responses! x It really helps to know that you are not the only one struggling!

Yes my team are very good but the nausea is defeating them at the moment......... I have a relaxant before radiotherapy which works brilliantly with the anti nausea - but at the weekends when I dont take the relaxant I am so sick .......  I am 68 - had many operations ......... usually manage to keep mentally positive but this nausea ..........

I have a PEG tube - I hate it!! As I coped thru the tonsillectomy I am hoping to manage to eat - if the nausea goes away!

I have purchased a humidifier and nebulizer in the hope I can manage the mucous thing too!

Hope your husband is doing ok and of course you too!  Its rotten for partners ..............

Morning

gosh I feel for you ........... I suspect its where the radiation is focused ........... I am having both tonsil area and back of throat treated so maybe that explains the nausea.

So at the moment sore at back of throat but not too bad .........

Thank you for sharing and caring!

Hi

I have a peg fitted already... not pleasant .. but may come in useful! If only for Sauvignon Blanc!!

Its hard to cope with nausea .......... yesterday (having taken relaxant and anti sickness) I came home from treatment to do a little gardening and cook a lovely prawn pasta! (no Sauvignon) so its a mystery why my weekends are so awful ........

Lost some weight too so now on the build up - Ensure, cream etc etc

Glad u are well 

thank you for caring x

Morning Elizabeth

my heart goes out to your husband .... its the same for me and I feel utter despair when the nausea is so bad ...... everyone says "you are so strong you will come though this" and indeed I have come thru some serious major operations so easily ........ but this is a different kettle of fish.

I know I felt that if I felt like this now I would not cope ........ that was my worry ....... but now I am having some days when the nausea is bearable it helps!

Please give him a big hug from me - its nice to know we are not alone

x

Hello Beesuit! I do believe you are correct.....the feeling of being out of control is so difficult. And my husband just retired from Engineering, so his mind is always thinking, and he wants things a certain way, as we all do. Actually, the past two days have been so much better. The Medical Oncologist thought he was possibly “backed up “ ( if you know what I mean!!! :) from the chemo , so with the help of stool softeners, his nausea is almost gone, and he feels so much better! I know he only has had 8 of his radiation treatments so far, but he’s still eating all solids currently, and no weight loss!

Thanks for all the kind words and encouragement!!