Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

Re: Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

Not interested in continuing this dialogue, but I will reassert my key points, even if they are beyond your understanding:

 

1) Intubation (without clarity) is most commonly used in emergency settings, and as such the term is commonly received as meaning to achieve an airway - nasally or even via tracheotomy etc.  Nasal intubation means putting a tube into your nose, and in context of course the earlier messages in this (now derailed) thread all refer to FEEDING tubes (technicially called naso-gastric intubation).  If you're a candidate for a feeding tube, decide what you want to do, but I personally favour the PEG.

 

2) Orthodox treatment (through your hospital team) is not the only source of information available to you.

The info that you receive will be conventional wisdom of the day, that is strictly evidence-based.  And yes, it will encapsulate people who have seen patients arrive/survive/die thousands of times (not that this is necessarily a good thing), and the viewpoints will be cemented in that experience only.  With every area of science, there are proven theories, disproven theories and UNproven theories.  (example of an unproven theory is the mind-gut axis relationship to autism).  You can find a wealth of data on any given topic that is currently being scientifically explored (but not yet proven as to be in conventional treatment), and that data rational approach is (in my opinion) useful.  Example, PEG tubes, you can learn that 20% of them have complications (without checking the numbers) but of the 20, only 1 is serious, and that naso-gastric tubes are statistically a little less dangerous (but a lot less convenient).  You'll get the insight that hospital staff will recommend prophylactic PEG insertion because of the relative cost & hassle of installing and maintaining a naso-gastric tube, even though they are slightly safer in terms of surgical risk.  That's just an example where, if you're unsure what to do, it's worth looking at all the information available from all sources.

Another relates to the hunter-killer gene that actively fights cancer in your body daily.  No orthodox clinicial will give you any advice regarding the immunonological approach to treating cancer, despite the fact that the science (unproven) is moving in that direction.  It will be 20 years before that science is in the conventional treatment sphere .. but in the meantime you may have a bad prognosis but be a candidate for a clinical trial in immunotherapy (if you are aware of it and know to ask about it / beg for it).

 

3) Your priority is your own wellbeing and survival

"How many variations would they have to manage if each patient gets individual treatment" .. screw that.  

If you need something, seek it out.  If you are not getting the information you need and feel confused, demand answers.  If you can't find them from your doctor, look for them elsewhere.  Don't be complacent about your care, be an active participant.  I'm not arguing against orthodox treatment, or ignoring the advice of your doctors, I'm arguing for making informed choices.  Be aware how much information is available to you, and if you feel you can handle it, seek it out.

 

Hector, you seem like a "last word" kind of guy, so be my guest .. but I won't be back to engage in a futile and circular discussion. This thread was about my thoughts and experiences, maybe you should start your own - if you want to champion against people reading the internet, you've got a lot of posting to do -- in fact it seems a bit counter-intuitive to be here at all unless it's just for cuddly feely support stuff, as anything information based should result in "talk to your doctor".

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Re: Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

Hey Hector

Thank God I found your post!! :-)

After reading all of the other dire accounts of phlegm and pain and PEGs it was a relief to find someone who got through a brutal but tolerable treatment in a slightly more manageable way.  Oh, I'm by no means thinking you've had it easy, but your account does give me a bit more positivity.

I'm just diagnosed T2N2c with primary at base of tongue and am in for the multi-disciplinary team review on Friday, I guess treatment starts soon after that - I'm praying my reaction to it is more like yours than some of the other poor souls'.

Thank you for sharing

Cheers

Shane

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Re: Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

Hi Captain

Thank you for the week-by-week account of your treatment and post-treatment period.  I'm facing that rough road very soon and I'm the sort that likes to have a plan, so being able to plan for the escalation of pain, goo and burns has given me a strange sort of comfort, but a lot of trepidation.  

Cheers

Shane

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Re: Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

Hi April

 

I'm so impressed by your gourageous approach to treatment and maintaining nutrition, I've scoured your messages for tips and a bit of inspiration.

One thing you mentioned that I haven't seen else where is use of a nebuliser - would you mind sharing what you used through it... Butamol or another product?

Hoping you've continued to heal okay since your last post...

 

Regards

Shane

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Re: Your experience with side effects from head & neck cancer treatment (radiation / mucositis)

Hi Shane,

 

I'm sure you will experience a lot of confusion, doubts and uncertainty in this early period. And It would be nice to say the situation is a walk in the park but it isn't and there will be tough times ahead. However, you can be reassured that if your supporting cancer team are anything like those who guided me through then you will feel more confident and resilient that the journey will be tackled with caring and supportive medical staff beside you. Listen to their advice, follow instructions but always ask questions and participate in your own care. There is no embarassment in asking something you might feel ridiculous about but is important personally for you. For example, when I lost my taste around week 4 of my radiotherapy I switched to a sustagen/protein shake type diet after consulting with my dietician. With the GI problems caused by chemo already unsettling my bowels I discovered the protein shakes caused massive constipation issues. So there were a lot of discusssions about poo!! But the answer came in realising the protein drinks contain a large abmount of wey powder and it was this that was causing the problem. The solution was as simple as adding a few scoops of sustagen with fibre to each meal. And there is no advantage whatsoever in being stoic. If things are not going right you must speak up and consult with your medical team - you win no prizes by hiding behind your pride. When the specialist ask how you are doing be honest. If you ares truggling with anything, let them know. There are many ways to manage situations and your cancer team wants your care to be effective and personalised to your needs but they are not mind readers. I'm in recovery period now so free of further treatment but my mouth ulcers haven't healed yet, I have no taste back yet and my whole oral cavity feels and tastes like it was used for as a temprary sewerage treatment plant. But I know it will recover. Patience then. Ask questions, don't be ashamed of admitting your frailties. And best of luck.

 

Hector

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