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Some updates and question since my introduction
r042wal
3 Posts

Good morning group! I introduced myself a while back in the thread below in the Intro forum. Just a quick summary, part of tongue removed, flap made from my forearm, chemo and radiation, and lymph nodes removed.

My operation was April 21. My chemo and rad was June and part of July. I had a follow-up with the rad oncologist Aug 20 and the surgeon on Sept 2. I am amazed at how vague the docs are when it comes to discussing the particular details with your case.

For example, my surgeon told be on Sept 2 that they replaced the entire floor of my mouth. That seems like something they should have come and talked to me about.

I have had many questions for both doctors and you can't get an answer. They tell you each case is unique. For example, why is my tongue (flap) so thick for the first hour when I wake up that I can't close my teeth together? Why is my mind in top gear but after all these months, I fatigue very easily. I eat like a horse. Why am I having so much trouble putting weight back on? I lost 20 lbs and have only managed to put 11 lbs back on so far.

I have this terrible problem with reflux prior to surgery. Upper GI test shoed 25% when 15% is normal. I take medicine and there is no acid burning but I am always swallowing. Now that the incision and swelling going down under my chin (operation and lymph nodes), it is getting very difficult to swallow the phlegm. It pools around my throat area and resonates similar to snoring. I can't swallow it down, cough it up, plus it wakes me up.

Sorry but it was not my intention to whine. Just so many questions and little support other than here. II am very restless after sitting around for so long and am thinking of taking on a small job or two to help with the time.

All the best to everyone here in their recovery.

Rob

3 Replies
supersu
433 Posts

@r042wal
rob,
good morning and thanks for this post. doesn't sound like whining to me at all….rather, a whole bunch of unanswered questions.
ugh…I think this is now our lot in life, non?

what I did was dedicate a cheap notebook from the dollar store to be my ‘cancer book’. any/every thought/question that popped into my head I put on ‘the list’.

as I wandered thru this forum, other sites, had conversations with my docs, (RARELY), and most productively-spoke to my NURSE NAVIAGTOR, I would cross the answered or clarified issue off the list. it didn't happen all at once, rather it was a slow and steady constant ‘job’.

recently someone else in this community shared a different resource - perhaps there might be some information there for you? take a poke around and see if there are any modules that can address some of your questions.

thanks again for posting, nice to ‘meet you’ in this virtual community of ours.

cheers
su

#tonguecancer #reflux #questions

@r042wal - Thanks for taking the time to update us. It is nice to hear from you. I can definitely understand the frustration you are feeling if your questions are not being answered. It is true every one is unique but it is nice to hear from others that you are not alone in what you are experiencing.

Have you talked to @rich8 or @law1? I'm wondering if they can share their experiences and tips for dealing with some of the challenges you are dealing with.

Fatigue is common after treatment ends. You may find this info helpful:

You may also find it helpful to speak to a Dietician for some support with gaining back some weight. We also have this helpful resource: Eating well when you have cancer.

When is your next chance to talk to the Doc?

I hope this info helps,

Lacey

#tonguecancer #fatigue #weightloss

law1
567 Posts

Hello @r042wal and thanks for checking back in. What a challenging recovery you are experiencing following the surgery and rad + chemo……and, doctors can be vague because each of us humans is unique and cancer does not generalize. Cancer recovery is also unique sorry to say. I had basal tongue cancer, which meant 36 rounds of radiation. I did not have surgery, and I declined chemo as the horror stories freaked me out. I wimped out as my radiation recovery made me feel even worse for about 9 months.

Recovery for me was, as for you: pleghm as thick as glue, constant gagging, coughing, swelling of the outer sides of the throat, inability to speak clearly, inability to open my mouth very wide (maybe 1 cm for months) and fatigue, depression, and a blistered tongue that caused me to refuse to swallow anything, which dehydrated me to the point of being an inpatient with IVs of re-hydrating ‘stuff’…. I lost 30 pounds and had no appetite due to the opioids, Fentanyl patches, and constantly horrid tongue and throat pain. Add to that, several bouts of thrush. I could no longer swallow my meds, so had to ask for liquid hydromorphone. My doctor mentioned a variety of possible side effects, but reinforced that he was unsure due to the fact that every situation for a patient differs……

Hence, I can understand your frustrations.

I still (after 3 years being cancer-free) have fatigue, depression which comes and goes, swallowing which often brings gagging, my mouth hurts when I yawn too wide, and I have given up meat as it is impossible for me to chew and swallow. And, my senses of smell and taste are gone.

I have no saliva so my teeth are in danger of disease…..

I use saliva tablets called Xylimelts, and I received exercises from the speech pathologist to improve my speaking and maintain more jaw flexibility. There are massage exercises you can learn which help drain the plegm collecting around the tongue area, and keep water to sip at all times… and throughout the night when required.

Basically, my best friend is still Lidodan 2%, a red viscous gargle which numbs the mouth so I can now eat more easily and far more nutrition that is so vital. I think it's good for you to eat a lot because your body still needs to recover protein. Lidodan 2% is available from pharmacies (without prescription), but you must request it from a pharmacist as it is a topical anesthetic and numbs your oral cavity for about 20 minutes.

i suggest you talk to a Nutritionist, and a speech pathologist, who can set you on a recovery path. Fatigue and depression often stay with those of us who had head+neck cancers.😒 If there is a counsellor avaialbe at your Cancer Centre, you may want to speak with him/her as they deal with folks like us empathetically and are very supportive.

I hope this helps you a bit, and please keep posting your status!! I made a brief list of questions for doctors and they were able to answer a few….they are too busy, and, online research available on this site may hold some answers for you. Publications, and Forum discussions are very illuminating as well. Hang in there Rob!!

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