Wednesday, March 5, 2008

Listen Up!

One of the most annoying things about me is that I talk too much. I talk TO people, AT people, OVER people. Well, not anymore. Not so much because I've finally wised up, but because I physically can't.

When I went for my chemo treatment on Monday, I coughed, panted, and wheezed through the meeting with my doctor because for once, I couldn't out-talk or out-interrupt her.

Later, as I was leaving the doctor's, I tried to ask the receptionist one simple question. She kept answering my question before I could finish asking it. Then I'd try to interrupt HER interrupting ME, but she kept talking over me and answering questions I hadn't finished asking. And the harder I tried to be heard, the more I lost my breath, then the coughing and panting took over, and I was left feeling exhausted, frustrated, defeated.

I've always been a strong verbal dueler. But now everyone has a sword and I've only got a pocketknife. What a humbling experience this is.

Note to medical folks tending to cancer patients: Please LISTEN to your patients. I know it's your job to tell us things. It's your job. It's our life. I think we should get to talk first.

Later on the same day, I had a two-hour conversation with some friends without a single coughing attack. I couldn't carry on a two-minute exchange with the receptionist at my doctor's office without gasping for breath, but I managed to have a two-hour conversation without a single attack. Why was that?

I realized later that it was because these friends are particularly good listeners. I didn't have to fight to be heard or fend off interruptions - the usual stuff lively discussions are made of. I didn't do all the talking, either - that would've made for a boring conversation for all of us. And I don't think these ladies were being unusually attentive to me because of my condition, because they've always been like this. I just never noticed or appreciated it as much as I do now.

Now is a good time for me to provide some explanation for my greatly reduced appearances. Some of you have offered to visit me, take me out to lunch, called me for chats on the phone, and I've been very reluctant. Here's why:

I can go for hours sometimes without any coughing or loss of breath. I even managed to speak to my kids at my usual decibel yesterday, calling out, "Hi there! You're home! Where's my hug?" loudly across to the other side of the house with no problem. A brief flash of my old life.

Yet it took me three hours to eat my breakfast of pureed veggie soup because every single spoonful started a coughing fit - one of them so bad that I almost vomited. All this while holding my bruised ribs in place because the Ibuprofen doesn't seem to be working so well anymore. So breakfast was yum, cough, cough, ouch, ouch, aargh. Repeat for three hours. And I thought the mouth ulcers were going to give me trouble!

I haven't been answering my phone much because several times, I've started coughing so much that the caller ended up quite alarmed about my condition, which really sounds much worse than it is.

A few days ago, I had a visitor who had to listen to me cough and gag for half an hour before we finally gave up. She probably left thinking I was at death's door.

Meanwhile, you might see me walking around the shops at Paragon, across from Mt. Elizabeth Hospital on chemo days, looking perfectly normal. Well, maybe not normal, since I'm bald and sometimes wearing a surgical mask, depending on my blood count that day. I worry that some of you whose invitations I've turned down might see me out and about and wonder why I can't meet you for lunch when I'm walking around a shopping mall and eating lunch by myself (or with chemo buddy).

I just can't predict when I'll be feeling okay and when I'll need to rest my lungs. I can't expect all my friends to hover in stand-by mode on the off chance I can fit them in for a quick chat in between doctor visits.

So that's why I've been so anti-social lately. And so much more verbose on this Blog. I'm letting my fingers do the talking.

9 comments:

Anonymous said...

Keep those fingers walking darling....I LOVE listening to you....x Leigh x

Marge said...

My dearest Shin-gra-La,

Good on you for telling people up front what's going on and what you need.
Sounds so simple, but as a huge talker who has battled a voice disorder for the last 5 years I can tell you that it ain't easy to get past your pride and your fear and just do the best you can without judgments either way.

I can't wait to see you, give you big hugs and let you say whatever you want - or nothing at all.

I love you...
marge

Tony said...

All i can say is hallelujah. I finally get to get a word in.

Tony

Anonymous said...

You are soooooooooooo special! ALL OF YOU! Love always Leigh x

Anonymous said...

DON'T KNOW IF IT WORKS OR WILL HELP BUT....(thought if your mouth was less sore you could eat more then be stronger to fight...?! Hope that isn't a stupid thought?!!!!)

Home remedy for relief from Mouth Ulcers

Application of peppermint oil helps, as it is an anesthetic agent.
Mix coconut milk with honey and massage the gums 3 times a day.

Take 1 tsp finely powdered Indian Gooseberry root bark, mix with honey. Apply to affected areas frequently.

LOVE LEIGH X

Anonymous said...

FOR THOSE OF YOU WHO WONDER WHY I POSTED A HERBAL RECIPE FOR MOUTH ULCERS I FOUND THIS INFORMATION TOO....

Chemotherapy can cause
A sore mouth
Mouth ulcers
These side effects are often referred to as mucositis and can happen about 5 to 10 days after you start taking the chemotherapy. They clear up in 3 to 4 weeks.

Sometimes the mouth ulcers get infected. Your doctor can give you treatment for this. With chemotherapy that is commonly known to cause mouth ulcers, your doctor may prescribe mouth washes to prevent infection. You have to use these regularly to get the most protection.

If your mouth is really sore, tell your doctor or nurse straight away. You are not making a fuss. Most doctors are happy to provide strong painkillers to help you get rid of the pain and beable to eat. With high dose chemotherapy, some people even need to have morphine for a short time as their mouths are so painful.

Some chemotherapy drugs cause your taste to change. Food may taste


Salty
Bitter
Metallic
Your taste goes back to normal when the treatment is over.

Helpful hints


Avoid foods that taste strange to you, but try them every few weeks as your taste may have gone back to normal
Choose foods that have strong flavours (eg herbs, spices, marinades and sauces) if all your food tastes the same
Clean your mouth and teeth gently every morning, evening and after each meal
Use a soft bristled, or child's, toothbrush
Remove and clean dentures every morning, evening, and after each meal
If your toothpaste stings, or brushing your teeth makes you feel sick, try a 'bicarbonate of soda' mouth wash instead (one teaspoon dissolved in a mug of warm water)
Warm salt water gargles can be soothing
Avoid mouthwashes that contain alcohol
Use dental floss daily but be very gentle, so you don't harm your gums
Keep your lips moist by using Vaseline or a flavoured lip balm
Avoid neat spirits, tobacco, hot spices, garlic, onion, vinegar and salty food when your mouth is sore
Choose meals that are moist with gravies and sauces, to make swallowing easier
Try to drink at least one and a half litres (3 pints) of fluid a day - tea or coffee, fruit and vegetable juices, soft drinks or water
Tell your doctor if you get mouth ulcers
Eating fresh pineapple can keep your mouth fresh and moist but avoid acidic fruits (eg oranges, grapefruit) if your mouth is sore
Chewing gum can help you to produce more saliva to keep your mouth moist
People having high dose chemotherapy may have a drug called palifermin (kepivance) to try to prevent mouth soreness

Hope it helps

Leigh

Leighbee said...

Hey - I got myself a user name :-)

Shin said...

Leigh,

Thanks for those tips on alleviating pain from mouth ulcers. There are other cancer patients reading this Blog and they might find this information helpful.

This time, my ulcers are all in the back of the throat, rather than on my gums. And they're not that painful. It's the coughing that's getting in the way of eating more than the pain from the ulcers.

I have an oxygen machine at home now and am working on getting more rest for my lungs.

Marge said...

BTW,
This may not work for everyone with mouth ulcers but my sister and I both found that rinsing with mouthwash helps TREMENDOUSLY.