We all had bad days mixed in with good days during our recovery. Eventually the bad days will disappear. Comes with our Tx but overall your recovery will most likely be a steady stream of improvement. For instance I was to weak to cut my grass until about 3 or 4 months post Tx and by the 9th month I was back riding my bike competitively 100+ miles a week. I saw my first real improvement in my taste and saliva 4 months post Tx but it was not until my 14th month that I really saw my best spurt of improvement. Also most of us dealt with some form of depression post Tx, ranging from almost not realizing it to depending on drugs to help get through it. Hang in there your body has literally been brought to the brink of demise so don't expect to recover as if you are getting over a cold. lol

Thanks David,
I'm learning patience. Knowing that it can take 14 months is helpful.
Angie

I think it has a lot to do with your physical state - and body, you'll get there but at your own pace... Hugs!

Angie, David's advice and experience are some of the best here and I'm glad they were helpful to you. I second his story of post-TX weakness. I was flat on my back nauseated 24 hours a day for 3 months, and didn't even begin trying solid food for a couple more.

But it does definitely get better. I noticed a big jump at about 8-9 months, although there were small victories of course prior to that.

As my internist told me when I saw him around that period, commenting on the 30 pounds I'd lost and everything else, "You've literally been starving, so don't expect instant recovery." Ain't it the truth!

Of course we're all different, our metabolisms, our reaction to treatments. So there are no hard and fast rules. Take it easy, treat yourself very carefully and life will soon improve!

All the Best to you and your sister.

Thanks David,
Didn't mean to sound so blue. I alternate between happy, singing, feeling great and acting silly to having a couple of down days. The down days are when I focus too much on cancer. I start getting scared of my next PET (Jan 16), worried about recurrance and all the other stuff that goes with cancer.

Lately after each doctors appointment, I start shaking uncontrollably for about 20 minutes. It's the wierdest thing -teeth chattering & shaking. I feel fine at the appointments-calm, but as soon as I walk out it starts. It makes me laugh.

Angie

Hi Angie

Alex suffered in similar ways and one day he realised that he hadn't had a down day for a week. And then it was a whole month that he went without a bad day. The bad days get further and further apart but you may not realise it. Maybe a journal or blog that you write a note about your physical and mental status every day so that you can see your progress?

It is not just oral cancer survivors that experience this - it is typical for those who face a life changing event. Typically, it hits 6-12 weeks later when you are no longer actively fighting the disease by trekking to radiation every day, have no doctor to talk to every week, and your carer has stopped making you the centre of attention and has gone back to reorganising his or her own life(and I mean this in a nice way). You feel "cut loose" and it may even hit you how close you came... You realise that you need to make plans beyond today. This can be an overwhelming prospect.

On top of this there are physical issues - hormones all over the place, fatigue, weight loss, crap nutrition which all contribute. Your immune system will still be recovering and all your energy will be going into rebuilding, leaving little energy for your mental health. Even a little cold may cause a "woe is me" feeling.

But it gets better. The anxiety may never go away completely, but episodes will be further and further apart and less intense as time goes on.

The shaking and teeth chattering sounds like a stress reaction. Alex goes all "two year old" on me which starts as we drive into the shadow of the hospital (eg told the doctor "no" when they tried to look down his throat - what was he there for?). I have told our cancer co-ordinator that Alex is suffering post traumatic stress and cannot sit in the waiting room with a dozen other head and neck patients - many of whom haven't had the same positive outcome Alex has. How barbaric!!!

But back to your reaction - very common to have the reaction after the event as the adrenalin leaves you. There are medications you can take or you can ride it out depending how awful it is for you. Also plan to sit down somewhere nice afterwards to let it pass. Breathing exercises maybe? Just knowing this reaction might happen and that it is to be expected, may be enough for you to manage it? If not, find a counsellor who will help you with coping techniques. Hopefully the reaction will lessen with time as you become more used to your appointments.

Hi Angie - I'm so glad you found this great place to be! You know, any kind of a change, even if it's a good change, brings a certain amount of stress. After my son completed his Tx, we had that "what now?" feeling We were so used to going to the hospital every day for Rad Tx and now here was another big change! Any kind of change takes getting used to until you get to the point where you have a familiar routine to depend on. I would certainly explain to the doctor exactly how you feel at appointments so that he can make suggestions or prescribe something for you if necessary. How wonderful that your sister could be with you to care for you. You should be proud of yourself, too - for coming thru and surviving one of the hardest things in life to experience!! Things do get better! - each at our own pace. Come back and let us know how you are doing.

Thanks Karen,
Wonderful advice. I feel better already.
Angie