base of tongue cancer

Hi Susie 

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Leave this thread here too 

Meanwhile you might find this thread on tips useful 

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

The PEG /RIG/NG tube is a bit alien to most of us but it helps greatly with recovery and to stabilise our weight, make sure you keep on top of flushing and site cleaning as infections can occur. Oral thrush is another side effect to be aware of, easily treated. Chemotherapy can cause issues, let your team know as soon as any surface. Constipation is bothersome don't be afraid to use Laxido regularly it will be a godsend.

Drink coffee for as long as you are able to as you may not be hit with all the side effects, some patients are lucky and miss the worst.

Keep in touch with the forum as most of the posters can give you invaluable information concerning treatment and recovery.

Hi Susie, as you said it yourself,stay positive. As a wife who's husband found himself on this journey I can only tell you how this journey was for us. As been mentioned, side effects will effect people differently, however, my husband had to cope with a few,big loss of weight, he still has his PEG, which we hope to get rid off in the next few weeks,he lost alot of weight,with no appetite and not able to eat orally about half way through treatment. The sore throat,thick mucus,not able to produce spit,constantly feeling dehydrated, these are just a few. Not able to drink coffee would gave been the smallest worry for us. I am not gonna lie, the treatment and recovery was cruel, I found myself crying to sleep,being helpless and seeing him having to go through this. Now 6mths post treatment,we are having to get used to a 'new' kind if normal,still having to cope with some lasting side effects, so far from what we know, he is disease free. I am just grateful he is still with us. Having said this, all the best for your journey to come,stay strong and positive. Hugs  Mel x

Hi Susie 

Just to try to put some balance to Mekkie's post. For me the treatment was a challenge, I must admit, but there was never a time when I despaired at what it was doing to me. Don't get me wrong, there were times when I had a midnight meltdown in the bathroom feeling sorry for myself, but I trusted the treatment was going to fix me and it did. I let my radiographers know how I felt every day and they were my conduit to the rest of the team, making sure I was comfortable and in as little pain as possible. 

I moisturised my neck well and put aloe vera gel on  in the car after every RT session and didn’t burn. My skin just got flaky. The mouth ulcers meant I couldn’t swallow but my NG took care of that. Everybody gets sticky saliva when the salivary glands get hit but it doesn’t last long for most of us. Sip fizzy water, even pull it out with fingers or those little pink sponges on a stick….yuk! It goes, I promise

I was eating enough at 12 weeks to lose the tube and never looked back. The only weight I lost was a little after treatment end when I wasn't threatened by my dieticians night and day. Six plus years clear now and almost as good as new....just dry mouth at night 

When you get opiates you’ll get laxatives….you must take them. Opiates slow down gut transit time so you risk severe constipation if you don’t. They are ok. They don’t hurt your tummy, just keep you regular. 

Best foot forward, don't suffer in silence. Even the most awful symptoms can be mitigated so speak up when you need help.

Sending you healing hugs to get you through