What tastes good now

[Tassiedevil]

My taste has improved as my mouth has healed after the surgeries that were required to remediate my tongue, jaw, neck, arm, thigh{knee to groin}, foot. [ These sites were used as graft material to replace my tongue and the floor of my mouth, a hairy tongue is a bizarre thing I can tell you{guess}. Radiation therapy, on the other hand, was another kettle of fish entirely, even though I had done extensive research on the after-effects the resultant effects were an eye-opener, I had been warned, but nothing really prepares you for the changes that your body will go through. Radiation is a wonderful concept for the treatment of cancer until you are subjected to its effects,  it is lethal to human tissue and corrosive to the human psyche. It may take a considerable amount of time and effort on the part of the patient to come to terms with the resultant damage in both areas, but, we can and do find a way to overcome, I AM ALIVE. This has to count for something and that is my daily mantra and I will continue to think that. Craig

[Tassiedevil]

I am going to have my PEG checked in the morning, it's been a long time since I have had to use it as my primary mode of nourishment, I had to maintain it so it could be used in the event of more mouth surgery. My story is nothing special other than that my cancer affected my saliva gland/s on the right side of my mouth, just the major ones; sublingual and submandibular but not the parotid. Not very good if you cook for a living or live to cook. Our taste changes over time as a matter of course, from infancy to our dotage it is just a fact of life. The main concern with treatment for oral cancers is that we lose our sense of taste and no one can suggest how to adequately satisfy our hunger for food that nourishes the body let alone the soul. I'm certain everyone can equate with that. I myself love food, from the prep to the eating, nothing too hard or different when it comes to menu de jour. I have tasted the bowels of gastronomy in the form of a meal replacement in a box with the dubious flavor of natural, to which I was naturally allergic and proceeded to throw back up, then I FOUND CHOCOLATE AND COFFEE AND STRAWBERRY. Sustagen hospital or Sustagen sport is also very good and will help to maintain a reasonable weight nutrition/balance, better than nothing until you can eat solid foods again, and it will happen. Craig

[Tassiedevil]

The common consensus is that in order to effectively control oral maladies after surgeries is to make an environment that does not foster the overgrowth of certain bacterias. These conditions can be curtailed by the use of medications or home remedies that have been tried and proven over time. The internet and more importantly your oncologist/doctor/nursing staff can give you the information that will help alleviate symptoms of these conditions. I have personally found that a good diet helps, don't give the bacteria a chance to thrive and it can't survive, I'm sorry but sugar is a no-no as it promotes thrush big time and cancer loves it too,[I was told this by an oncologist when I asked about ketosis and ketonic diets shortly after being diagnosed with ACC, PET scans utilize irradiated glucose to spot cancer ]. I know that I will not survive this cancer as it has no known cure and mine has metastasized to my lungs so I WILL NOT POST CRAP just truth if only for me to read, I also will not sugar coat my posts to alleviate as it is cruel to do so. I will always try to be here to help lift us to a level of mutual support and understanding and hope my experiences can help others to get the answers they need to live as complete and compassionate humans, not patients. Craig

[Tassiedevil]

Hello Budgie, Thank you for the heart. I am replying to your post from earlier today, how are you traveling?. I myself feel pretty good. I hope you are well. Craig

[Budgie]

Hi Craig,
I am doing quite well at the moment, thanks.
I had scans done a couple of weeks ago, & there is only a slight uptake in one of the mets in a rib. Some of my bone mets seem to have disappeared, while others are the same size. So at the end of the day, things are rosey. 🙂
Budgie.

[Tassiedevil]

That's good to hear Budgie. If you don't mind me asking, what type of cancer do you have, mine is saliva gland cancer as are the Mets in my lungs, It will always be saliva gland cancer where ever it may occur in the future. Having said that I am glad to hear that your bone mets seem to have disappeared or are maintaining size. The Status Quo maintained Craig

[Budgie]

I have kidney cancer, diagnosed terminal in August 2012, with deposits in my neck, L5 vertebrae right against my spine, & in the top of my left buttock. I had the lump in my neck removed (it was the size of a flat fist), & my right kidney & adrenal gland removed. Then I was put on Sutent, an oral chemo in tablet form that I took every day for 4 weeks, then a 2 week break. It went in 6 weeks cycles till I couldn't handle the side effects any more, then the dose was reduced.
I've since been thru most of the drugs for kidney cancer, & am currently on the last one that's really available to me. I've been on this drug for 2 years now, expecting it to last only 10 mths to a year at best, so it's doing very well.
I'm doing well! Thanks for asking.

Sorry, I haven't read thru all of your posts yet, I'll do that tomorrow. Bedtime soon 😉

[Tassiedevil]

Craig here, read em when you can, I don't think they matter all that much when I read what you have endured, you are a brave mofo, if you will pardon my french, that's some heavy-duty shit to be missing. I am waiting on results for a drug trial for Larotrectinib a last resort drug as well. Sleep Deep till tomorrow Budgie and regards to your loved ones.

[Tassiedevil]

Katekat thanks  for the heart   Craig

[Budgie]

I had a wonderful sleep, thanks Craig.
I'm usually asleep as soon as my head hits the pillow. Yes, I've had a few surgeries & am missing a few parts, but, I have it very easy compared to some people, & I am very grateful for each & every day I wake up.
I've read thru your posts & I think you've got it much worse than me -think I would miss eating too much. I love my food too. I have had radiation to my neck & jaw, but only in a palliative dosing. I had only 10 sessions on my neck & 5 on my jaw bone. Thankfully, I haven't suffered greatly with the side effects from it. So I really feel for those of you who suffer from all the bad stuff.
How is the graft going for your tongue?