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

Hi I’m 7 years post chemo radiotherapy for HPV driven tonsil cancer. Yes you  can drink coffee as long as your mouth lets you. You  can get your caffeine fix by putting in via tube if you need to my hubby  used to put cool peppermint tea in for me. It was a good few months after treatment before u coukd drink coffee again but u used to dip lotus biscotti biscuits in mine fora while. I started to eat  orally from week 3 of recovery mostly sipping the ensure drinks as vile as they were its all about getting calories in. You can get through treatment take it all one day at a time p.

im left like Dani with dry mouth at night. I live a fab life just got back from our allotment treatments hard at the time the mucus isn’t pleasant but uts far better than the alternative. Ask any questions in here. 

hugs Hazel 

Thankyou  

I thank you so much for replying to me.i even read it out to my partner who says the same as me.I am so happy you are doing so well and you are a very positive person..thankyou so much.big hugs  

Take care susie. We’ve got you folded in our arms. We won’t jet you fall. 

Hi Susie, I think we’ve chatted before on another thread … I echo what Dani says and as a carer myself, I’ve travelled the journey alongside my husband like Mel above.

I’m not going to lie, it can be a tough ride but it is doable !  Jon finished his  treatment on the 29/01 .. so 5 months ago .. doesn’t time fly when you are having fun   It’s been a  bit of  a rollercoaster but we’ve made it through.

The waiting is hard. Once you start treatment  the days just seem to roll on by. It feels like forever at the time but looking back now it’s a bit of a blur. I think fear and anxiety just take over but you just get on with it.

We’re waiting again .. for results from an MRI. We got the all clear from the PET scan and our  oncologist said he was 95% sure he was cancer free but wanted an MRI to be sure. So my hubby had the MRI last week and came out with a bad feeling … he is a very negative Nellie so I’m trying to ignore the clenching in my gut  

Theres a couple of quotes I particularly like that I say to myself often:

WTF - Walk through fire - thanks Gill

and 

Yesterday is history, tomorrow is a mystery, today is a gift - just lovely, thankyou Annette.

Keep on talking to us Susie, you’re not alone out there and you sound like you have a very supportive husband. Hugs to both of you from west Wales xxx

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Now a little bit anxious but i will get over it as soon as i start doing something,i received an appointment for the 12th Aug.i know i have not had a mask made etc i go to the eye hospital this morn in the hope of getting cataracts sorted sooner rather than later and then to the Maxifacial at the hosp in the afternoon to see the dentist.Although not sure why ? It all seems a long time and it goes through your mind that the tumour will be having a party inside me :(