Hi Tracey & Pauline:
After reading your notes, I kicked myself for complaining. Really...I have the bruise to prove it. Touch wood, but I have had minimal pain so far - heartburn, vomiting, itchy burned skin, all that. But that's nothing when I read what you're going through.

Today I got Apo-Prochlorazine for nausea. The product sheet says "used to control nausea and vomiting or for certain mental or mood conditions". Huh? What kind of a drug is this? What kind of patient am I?

Oxycontin is powerful stuff. You be careful with that. I hated the morphine in the hospital, it made me so uncomfortable and gave me the craziest dreams. I chucked that pain pump as soon as I could. I had oxycocet before the operation because the dentist decided two molars had to go as a complication. They took 4 more during the operation. They were great (I'm not sure if oxycocet is the Cdn generic version?). I suppose I'll need them again if an when the swelling and numbness leaves.

You talk about weight? Everybody is obsessed with this at the clinic. I lost a big 6 lbs and you'd think the sky was falling. Thankfully, inspite of the eating problems (and no doubt because of the new formula), I lost no weight in the last week. I have little appetite but I hate having an empty stomach. Tracey, this is what a peg tube will do for you. I am very very glad I have one. And I'm sure it's the reason I have no mouth sores or thrush -- absolutely no acidic foods or sugar have passed orally in weeks. It's boring but certainly beats the alternative. I have no idea how long the throat swelling will last and when I will get my swallowing assessed, but if it's going to be any length of time I will request a Baird button (smaller and unobstrusive they tell me).

Five more sessions to go.
-30C and sunny (we're obsessed with weather)

Take care of yourself
Myrna

Myrna I think they are obsessed with the weight because you continue to lose weight for months after radiotherapy. I was still losing weight the following July 2003 after ending treatment Oct 2002.

Now though since this January I suddenly have to watch what I eat as I have a whole new wardrobe of 5 sizes smaller clothes and gave away all my fat clothes. I prefer my thin clothes and the slimmer me. I thank God though I had that weight on me as I think I'd have died without the back up fat to live off.

The fact that your are geting sound nutrition may also be helping you cope with the treatment as you feel so low when you can't eat. Everyone is just different with this treatment.

What's a baird button - is it some kind of peg?

Hi Everyone

Got kept in hospital last night as I can no longer swallow
They have fitted an NG tube for feeding, it wasn't very pleasant going in, I will have this indefinately.
I sat and cried in the surgery yesterday because the pain has become so bad and none of the medication has worked, and I dreaded having this for the remainder of the treatment. They have now given me something else which (fingers crossed) will do the trick. My medicine is now all in liquid form, I must applaude all the staff they have been excellent in all departments, they get so much bad press these days that I think someone should speak up for them

Lots of love

Tracey

Dear Tracey, I am so sorry your analgesia didn't work for you, hopefully the new one will help. An NG tube isnt pleasant going down, you have done well.
My Hubby went through all the problems you have been going through, the only consolation I can give you is, things do get better.
Keep your pecker up girl, we are all with you.

Tracey you'll soon pick up in a few days now you are getting some nutrition. Hope they gave you some taps so you can take it off easily.

Yes the nasal tube is an unpleasnat experience. Taking it out is not at all painful though except do it near a sink as what you can'tsee is black in the tube!

Re the button: it's called a Bard Button. It's given to children who are on long term liquid feeding. The nurse told me it is usually "installed" after the Peg has been in place about 6 weeks. It lies fairly flat to the stomach and for feeding, there is a separate attachment that is equivalent the foot long tube that comes with the peg. To see a diagram use www.pedisurg.com/ PtEduc/Tube_Feeding.htm

I will ask for it. If the weight loss will continue regardless, I'd rather have something a little more portable and comfortable. I've had a few accidents with the peg - lid flipping off and the like. If anyone has used a Bard, I'd like to know how it was for you.

Best regards
Myrna

Ah thanks.
Re the accidents. I had a few with my nasal tube not of my doing when nurses failed to secure the nasal tube tap when it was taken apart for me to go to the loo etc. All this nasty deep yellow green fluid comes siphoning back up the tube and gets all over the nightie etc. It does wash out, but is not nice. It makes you very careful later with the taps.

hurray!!! treatment has finished on Thursday.
I have a follow-up appointment on Wednesday. situation now is my neck is very badly burned and blistered, I have dressing to change every day.I still have the NG tube, which can be very time consuming, by the time you feed it is then time for medication, and do I have alot of thet
Let me ask you all something, I have noticed that I can nod off at any time, last night my husband thought there was something wrong during my nightly coughing fits ( I am constantly bringing up mucus, and have to sit up and try to spit out, only trouble there is I can't spit!)so there i was sitting on the end of my bed and fell asleep, didn't realise till my husband nudged me this happens if I go to the toilet or sit and try to read ( reading is almost impossible).Do any of you have this problem?

The weather here is absolutely beautiful to-day looks like summer.Hope this is a good sign of better things to come.

Love

Tracey

Hi Tracey

It has been a great day day here in Wakefield, too. I mowed the lawn. Good to know the radiotherapy's over. Keep well.

Best wishes
Vinod

Tracey, CONGRATUATIONS that the radiation is finally over for you...I know how happy you are about now..I will never forget when that last day for me was....NEVER!!!! Your neck will be red for a while but it will go away, or mine did. I kept a lot of lotion on mine and I always kept it covered up. I do the same thing with the coughing and trying to spit..LOL. That is almost a joke in itself. I have a suction machine which I don't know what I would do without. It has been a life saver for me. Also do not feel alone in the noding off. Lord I do it almost everywhere. I have to really watch it when I am driving. I can fall asleep at a red light. That is no lie. I don't know what to tell you there. It isn't as if I am so tired that I can't stand up...I am like you wondering why..Best of luck to you now that this is behind you Always Vicki Lynn

Thanks Vicki-Lynn
The coughing and spit is really annoying I can't get a proper nights sleep, it isn't a problem during the day only at night.
My neck is becoming crusty now and bleeds at parts, it is not so much sore just itchy, infact it looks alot worse than it is, it is definately a talking point!
I am dreaming of the day I can have a long DRINK of ANYTHING! you just don't realise how much you take for granted the act of swallowing.How long before I have my swallowing back?

How was Pauls visit, did he enjoy the break?

Love
TRACEY

Hi Tracey,

I'd love to know how you've been doing. You've been having a rough time of it.

love
Myrna

Hi Tracy,

You've done well, and you're going to start feeling better.

I hated my PEG feeding tube. I felt invaded, insulted, attacked that they had made a hole in me. And I had a catheter in my neck that they fed the chemo through and other stuff as well, and another on my wrist.

This is seriously invasive treatment. But it's effective against a seriously invasive disease. My tumor wrapped itself around the carotid artery - left to itself it would have shut off blood supply to the brain. This is never the preferred choice.

I had lots of trouble coming to terms with the fact that they were cutting holes in me. I hated sitting there while the damn feeding bag emptied itself, and there were the moments when one or other of these apertures would start blowing back, or leaking, or letting out smelly stuff that shouldn't ever be seen.

Thick saliva and mucus. I thought (and still do think) that if the treatment could take away taste and swallowing and enjoyment of food why the hell didn't it take away production of snot? On any given day I can break world records for snot and drool. If there was a market for snot I'd be a millionaire.

But...

You will get better, slowly. It takes as long as it takes. I'm four years out from 39 days of radiotherapy & two weeks of chemo, and I can taste some things sometimes, swallow some things sometimes, have more or less thrush in my mouth according to the day of the week.

I'm also alive, well, active, strong, able to do pretty well everything anyone else can do. I started scuba-diving following a holiday on the Barrier Reef in Queensland - what a joyful experience that is.

I figure we'll never be just the way we were - we're people who have had cancer and are working towards the day when we don't. But if I never learn to swallow properly again, if I never get all my taste back - I'm still here to complain about it, I'm still hopelessly in love, I'm still enjoying all the parts of my life that aren't to do with eating.

Which is better than not.

Reading your posts I'm lost in admiration for what you've achieved so far. And I can promise you, it does get better.

Kia Ora, kia ora katoa from Aotearoa New Zealand

Hi Tracy, thinking of you, and what you are going through, re the burns, keep slapping on the cream, loads of pillows at night to try and get in a comfortable position, please, give us an update on how you are coping. The Big Bear sends you healing Hugs.

Hi everyone, sorry i've not been here for a while, just keeping a low profile as have been feeling pretty bad and not up to talking.
We have had problems trying to find the right pain relief.My neck got very bad with large open wounds and skin peeling off, this was very sore, but to look at it now there isn't a mark, it is amazing how quickly the burns heal. Wish I could say the same for my throat, swallowing is still painful. Any clues to when I should be able to eat, I am so impatient, I hate being fixed to this tube. I am on my second course of anti-biotics for an infection in my throat, also medicine for thrush, still have the mucus and thick saliva and constant coughing at night.
I would like to say the doctors and nurses have been first class, they take the time to talk to you and nothing is too much trouble for them, I can phone them at any time if I have any queries, they are excellent.

Well getting quite tired now, once again sorry I've been away too long, nice to know you have not forgotton me, hope you are all doing well, promise I will speak to you all soon

Love
Tracey