Hello and happy family break to all you brave souls out there,

Radiation is an unknown, I know the recovery process after surgery took me trough the unimaginable and I want to be mentally prepared to care for my husband.

He has a good bill of health though he does have an arethmia (arterial fibrillation of the upper heart chambers). His post surgery scans were clear though they did do a cautionary biopsy of the granulation tissue on his new gum near the close 2 mm clear margin which came back negative!

I have been reading a lot of posts and have gathered that:

1. Eating well and drinking water is critical
2. Oral care after every meal and hourly rinsing
3. Stretching and swallowing exercises every hour
4. Encouragement and massage for the fatigue
5. Monitor thyroid (not sure if the testosterone is to be watched during radiation)

The radiation will be aimed primarily at the left jaw from the canine to the back, the neck will also be radiated. The right side will be radiated more moderately and with less intensity. They are planning to spare the saliva glands on the right side, on the left side I know they can't avoid radiating them. (Not sure if radiation to the back of the jaw where the molar used to be is a danger for hearing loss)

I am also concerned about the fibrosis tissue above the scar on his neck getting stiffer. He described the sensation of struggling with the tightness of his neck. His jaw looks amazing but he said he felt intense pressure like his jaw was the size of a big ball. I wasn't aware how dominant these numb and tight sensations were. I know radiation makes everything tighter and thicker and 'Uptown' said that the best thing for this is stretching and exercise.

Quality of life is hard work and lots of heart, I find every day we spend with our friends that my sweetie forgets himself and sparkles again. I really do admire and honor his perseverance and will to live to the fullest of his capacity. All of you are truly inspiring.

I know there is a lot to be left to the unknown, I am back to taking everything one day at a time. It sure is comforting to know that we share a deep understanding and compassion even though we are all across the planet!

Much blessings, Sophie

Wow Sophie - sounds exactly like what they told me to do. I can't add any items to your list, but thanks for reminding me of what I need to be doing.

Tony

Hi Sophie,

Seems like you have done your research and ready for the next battle. Like other oral cancer treatments it is hard to define common experience and outcomes - everyone has different reactions.

Some tasks serve to soothe and accommodate the discomfort but the three common goals you must have 1-2-3 on the list 24/7 is nutrition, hydration, and pain management.

Be prepared to be challenged in all areas. The quickest way to the ER is getting dehydrated so make sure he is drinking enough liquid. Manage the pain so he can accept the nutrition and liquids.

Good luck,
don

Sophie, the radiation should not impair your husbands hearing. One of my tumors was behind my top left molar so I got zapped pretty good by my ear. What can impact the hearing is cisplain chemo. Pay very close attention to even the slightest change in hearing if your husband will get cisplatin. The smaller weekly doses are easier to tolerate than the larger 3 bag method. Even mild humming can be a signal that his hearing is being affected so the doc must be told immediately and no more cisplatin given.

2 Jan 2014! :O)

Thanks guys, if I may, my dad had three girls and he loved to say lets go boys, we all got used to it.

Christine thanks for the reminder about chemo. I know chemo can be hard on the organs like the liver and the kidney. The radiologist said that my husband would not be doing chemo but when we did the biopsy two weeks ago she did say with caution that chemo and stronger radiation would be considered.

I know the ENT said that chemo did improve prognosis by what a consider a great amount but it also can be so inforgiving in its secondary effects. I will ask again when we see our radiologist the reason he is not doing any chemo, she had just mentioned that she did not think he could make through all the treatments. She is very competent and I appriciate her proactiveness is irdering a biopsy and refering my husband to a plastic surgeon for his leg that is still in the raw, with only yhe first signs of a little skin stating to fill in the edges.

I am more relaxed and very rested now so I can be present through everything! Last night my husband said lets do something! We often get stormed into our over 100 year old house. I got him to play some music from accross the world and baked a gluten free cake!

Many thanks, Sophie