Seven days after end of RT now.I felt ghastly on the evening of Day 5 then woke on morning of Day 6 with the swelling down a bit and some of the dead skin sloughing away. Apart from hard swelling along my jaw and under my chin, my face looks kind of normal. Because I'm new to wearing a plate and find it uncomfortable at the moment I'm held hostage by that. Want to go and get the mail but too lazy to put my teeth in. The soreness and swelling inside my mouth have both subsided and it's a tiny bit easier to talk. Down to one Oxycodone am and pm and will soon be able to phase that out.

Taste? There's no real change of course but things don't seem to taste as horrible.

I've lost a LOT of fitness - even after surgery I was able to walk into town but now a 10 -15 minute circuit is enough. I get very tired at times. Nobody expects me to do anything so that's okay. I might make myself a little schedule to get my fitness up.

Hey there Alpaca - you went through a far rougher ordeal than I, and I was definitely down for the count for a good month or two after radiation. 10-15 minutes' walk was something I didn't even attempt every day, and when I did it was a real trial. So congratulations. It may not seem like much of a victory but it does sound as though you're on the road to feeling better.

All good thoughts your way!

Yes, I was over-confident which has resulted in my putting my back out by lifting a heavy old TV. Must have lost a lot of muscle strength because I've shifted that television before with impunity:) Physio says it's not serious but it's a wake-up call. Have to take it easy.

I'm now 10 days post RT and definitely feeling better. I can massage my face and chin and move some of the swelling. My skin looks good and I think I'm talking with less discomfort.

Most food tastes like mud still but I'm almost enjoying my version of Christine's chocolate milkshake. Trying hard to keep my weight up now that I'm looking after myself and don't have the dietitian supervising me. I never really grasped it before that the taste buds are one of the most vulnerable parts of the body to RT. After an adult life full of overeating and mild obesity I find it weird that I have to force myself to eat and that I rejoice if the scales show weight gain:)

Recovery will be slow so be patient. It can last every bit of 2 years with the first the most difficult. My taste and saliva which I believe go hand n hand, returned in spurts at 4 months PT, 5 months, the biggest improvement at 14 months (yes 14 months PT) and the last at 24 months. We all can be different but no one recovers fast. I consumed 3000 cals a day PT nad still didn't gain a pound my first year. I started back biking appx 4 months but the dry mouth was too much to enjoy riding at my level so to speak. Then came winter and tax season so by the time I tried again, 8 months PT, the DM was much better and so was my strenght. Be Patient is my best advice.

Now 22 days after end of rads and feeling a little low for no apparent reason. Saw RO yesterday. She's not a communicative doctor, just a registrar actually, very business like, so I didn't feel moved to ask her any questions. How dumb is that? All she said was that my weight is stable (I weigh a lot more in hospital with my shoes and winter clothes on!) and that I still have Grade 1 mucositis. Wish she'd said it in an encouraging way. Once again, what a baby I am! Where this low mood comes from I don't really know except that I'm very weary all of the sudden and finding it hard to recover from sleepless night of a couple of evenings ago. I also feel what I call "side-effecty" with a very swollen feeling in my mouth such as I had during treatment. I actually feel worse than I did a week ago. Could possibly be having some Oxycodone withdrawal I suppose. Maybe I'll take one tonight:)

Most if not all of us have good days and BAD days post Tx. And those BAD days can make us feel just like we felt back in Tx. Eventually the good days will win out and the bad days will go away but it takes sometimes months and months. Most don't even start to as we call it "walk out of the tunnel" so at 22 days PT you are really doing fine, as in normal.

And forget that "what a baby I am" crap. You should be wearing a metal prouding exclaiming I SURVIVED MY CANCER TREATMENT !!

Honestly - RO's - well I am sure some are great but mostly I think they are mathematicians - and have minimal personality. My guy was a very quiet and stoic fellow (he was a young asian guy) I was upset because he had missed something on a scan and I kept asking him questions about it he just kind of blew it off - wanting to forget about it. Then he suggested that I talk to a therapist about my anxiety. I wasn't anxious - I was upset about the fact that he almost missed something that would have had my back in the hospital within a year or two with a potential recurrence.

We talked and cleared the air but he's not even remotely warm, or approachable. He told me at one point on one of my follow up check ups that "oh you were really upset and having a tough time of it" are you kidding me?????? I drove myself daily and while it was horrible I was doing okay compared to most.

I had considered requesting a change of ROs at the end, but then I figured - 1) it's over and done with and as long as he does his job I'm good. 2) in order to be hired at this hospital he's got to be amazing at what he does (so all that really matters is he knew where to aim that beam)

Don't let him intimidate you - ask your questions.

hugs.

We New Zealanders don't like to express our emotions but I have to say I love you guys Know what you mean about ROs. People criticise surgeons for being mere scalpel-wielders but I've found most of my surgeons to be big softies really. As for the nurses, technicians, therapists and receptionist in the Oncology Dept, they couldn't have been friendlier. A smile and a "you're doing so well" and a some brief conversation make the world of difference to a patient going through this.

My low mood seems to have passed.

Hi Cheryld,

I like your attitude towards the community of the health-care providers, but I also want to add or suggest that someone who not only misses a vital survival issue in his area of responsibility; and then cops an attitude trying to throw his mistake back on the patient, is fundamentally dishonest and in the wrong business.

And I am deadly serious about this.

I easily forgive and overlook that kind of thing a a restaurant, but have no tolerance for dishonestly in a person with whom you place your very survival. I would actually make an issue with it and bring it to the highest authority I could. You could easily be saving a life by raising hell about this guy.

The wo/man involved is denying responsibility and refusing to take ownership in his/her mistake, and this could be fatal to the next patient who falls into his hands. In my view, this is intolerable!

He should be fired and denied work in areas where a live hangs in the balance based upon his findings or calculations.

There are other fields where s/he could advantageously apply his/her education; lab work, teaching, research etc., but working with patients, his dishonesty can easily be fatal, as I suggested above.

Bart

Alpaca,

Never apologize for feeling low or for having a bad day and wanting a little validation and wanting to know that things are ok. I 'm 29 days post treatment and I still have days where Inam also very sore and swill fun and where my mood is rather low. It's OK to feel that way and you are more than right in assuming your RO will be friendly, supportive and answer any questions you have. I am obviously lucky -- my RO is warm, open, honest and encouraging.

Don't stop trying and make sure you get what you need -- remember, New Zealand or not, he is there to serve you, treat you and care for you, not himself.

Good luck withnypur recovery,

Cheers,

The Hellion