Thank you all. Your responses are very encouraging.

Today was a down day - worried about long term limitations and length of recovery time (we were forewarned), on top of the months of tx we have already endured. But what are the options?

It's the first time my husband and I cried together since initial dx. During tx the nurses repeatedly said, "What a great team you two make." My reply was, "That's because we were a good team before cancer."
Lottie

Lottie:

I understand how frustrating the whole recovery period can be. It seems to take forever to feel better. When progress has been made sometimes you can slip backwards. Its very difficult sometimes.

Please try to realize that right now its still way too early to be worried about long term limitations. Even when I was 6 months post tx, it wasnt anything to even worry about. Your husband can only heal and recover as quickly as his body will aloow. It will take months maybe even years. There are other long term effects that still could come out. As far as options go, cancer is devastating plain and simple not just to the patient but also caregiver. Im really sorry to have to give you this info, I know its not easy for you.

One thing that might be helpful for your husband with healing is hyperbaric oxygen treatments (HBO). Do a search on here or also on the main site about it. Thats the one motivating factor in my recovery that helped me to heal and feel better. HBO helps with so many things that it could help your husband. Check with the doc about vitamins too. Hydration and nutrition are still a huge factor in his recovery.

Its ok to cry, we all do. Cancer stinks!!!!!

Hi, Lottie,

A really important factor in your husband's treatment is that many people on this board had radiation/chemo for about 35 treatments but did not have induction chemo. Your husband had about 6 weeks of induction chemo with three types of chemotherapy drugs BEFORE he began the combo radiation/chemo. He had 2 or 3 more rounds of cisplatin than did folks who had cisplatin/radiation and he had taxoture and 5-FU as well. That extra chemo may have caused more - or more intense- side effects. My husband had the same treatment as your husband and the recovery time post-treatment was slower than what people typically report on this board following radiation/chemo only. He had some mouth sores and bad mucositis for about 6 weeks post-treatment with a very gradual improvement. I think your husband's timetable for improvement may be different than for many others on this board but wanted to share my experience as my husband is doing quite well now.

Christine - I will take your advice and try to stop thinking long term right now. Actually, it's my husband who was good at taking one day at a time, until recently. Nurses also warned us that slipping back is not uncommon but when it happens it's heartbreaking to watch.

Sophie - Thank you for reminding me about the induction chemo issue (Cisplatin & Taxotere were given one day + continuous 5FU drip X 5 days). MO certainly did warn us that this was very aggressive tx and would make side effects more difficult. It seems so long ago that I forgot. Team at Dana-Faber agreed with this plan.

I'm going to bed and will try to start fresh tomorrow.
Lottie

The other day, when I was contemplating a visit to Dr Haakenslash to see what was up with my two lesions, I found myself making plans for bad news -- Not depressing plans, but realistic plans based on what I have read here on this forum.

I've now had three surgeries in my mouth and on my neck (plus harvesting tissue from my wrist and then from my thigh to cover my wrist), numerous biopsies and scans, conventional radiation, but no chemo -- Compared to some on this list, I am still waaay ahead of the game -- No chemo, no tooth-pulling, no osteo-necrosis, no bone surgery, no trach stoma, still got a tongue, can eat stuf and swallow, can still talk, thyroid still works (albeit not so well) and so on.

Guess what? All of the things above are still survivable, it's just the fact of getting used to them and taking them in stride. It's called adaptation, and it requires not looking back but looking forward.

And not expecting things to change too quickly -- Celebrate the good changes and don't worry about the timing!

The Taxotere alone is tough stuff. Having such aggressive treatment is definately going to cause long term effects. But, that being said, you will get used to your new "normal". That is a term I learned on this board and it is a great term. Just do your best to take one day at a time. That is something I have to work at but it is getting easier. It can be overwhelming to look too far ahead. Keep coming back here-this is a great place for advice and just to vent.

Sue