It's been one of those days! Yesterday I noticed a mall hole around a stitch at the tip of my tongue - looked like I pulled the stitch - or almost like a hollowed out area where the stitch sits between the new tongue and old - it's small - 2mm maybe? GP said he though it might be a canker.. Had an appointment with him for something unrelated so I had him look - well I trust him but he's not a specialist.

Anyway - I called my surgeon - the secretary said - dr. Irish is in surgery - let me call. She called me back - as I said I had to be at the hospital today to pick up my flouride trays and later tonight for a CT. Figuring if he or one of his collegues was around - maybe one of them could take a look. No go... She said 2 or 3 weeks. Or have my RO Dr. Cho look at it.

Well my radiation plan has already been designed and I do not have an appointment to see him again.(I explained this to dr. Irish's secretary but she didn't seem to hear it or maybe understand it???). Soooo. I though I would give it a try in person. I picked up my trays headed to the head & neck clinic where a different secretary told me to check with the carding station for an appointment - the carding station sent me back to them. I tried to explain this to them and they sent me back to the carding station -

Some gentleman overheard, took pity on me, followed me and told me to go down to the nursing station in the basement - they would get a dr. to look at me. So I go there. Explain the whole thing again. Nurse looks at me and says we're radiation - not surgery - I said - I know but I was told to show dr. Cho. They call him - He's not available so his fellow calls back. He says - she a surgical patient - I haven't started my radiation yet. So then the nurse calls my surgeon's office they get into it on the phone - secretary says she will call the nurse back dr. Irish is in his office - she calls back 30 minutes later - dr. Irish is now in surgery. She tells the nurse to call dr. Cho. Nurse calls Cho. Tells him all that has transpired - where he says - it's a surgical issue they are just trying to pass her off on us! No fricking kidding!! Nurse says cho should call irish directly she does not want to be caught in the middle. Again no kidding! I've started a war here... And I feel like I am about to become the first casualty!

At this point I have been there an hour nurse is feeling sorry for me as I now have tears in my eyes. She tells me to go to emergency - (across the street) and they will call the surgeon to come down. I thanked her and needless to say came home in tears... I have never felt so much like a rotten potato being passed around as I did today.

I was contemplating going to emerge tonight but there are people there who genuinely need to be there. I don't. I just wanted to have someone look at this to see if it's normal - took an hour calmed down called a friend and vented - then I called dr. Irish's office again. Told her that they told me to go to emerge where I gathered they would call him or his fellow out of surgery - which I told her I though was stupid - and a waste of everyone's time - she gave me an appointment this Wednesday.

Moral? The squeaky wheel does eventually get the oil I suppose. But there has to be a better way of doing this... And people - my dr. Is supposed to be the best in his field in Canada.... What the heck!!!???

Ergh!

Cheryl

Here is a link to one of Toronto's Medical marijuana clubs C.A.L.M. Sounds like you need to apply
Toronto MJ
I'm channeling EricS tonight after reading Ingrid K's inspirational story about her 81 year old friend of her fathers who suggested MJ. And yes, keep stepping up when that dirt hits you (wow, three different threads combined into one answer)
Keep the Faith
Charm

Charm...I think we're turning OCF into a bake fest lol...Brian, I'm sorry sir, we'll be presentable in public I swear!

you are a master charm... thanks ... I am better now... just yesterday was humiliating and infuriating and an emotional freak out kind of day.

Have you ever felt like someone just wanted you to GO AWAY... Disappear through the cracks... well that was yesterday... and unfortunately I think my survival instincts are too strong for that... maybe my pride too... but this is my health here we're talking about and damned if I will let them treat me like a number (in this case a 0)

thanks you made me smile.

eric... I like baking.... Um... but the gooey cakey kind... I suppose i could get used to both.

We've had that passed around feeling...not fun. It would be nice if one person would be in charge of coordinating the whole situation. We have an MO and RO an ENT and a oncology dentist in addition to a GP. When treatment was suspended, the RO expected us to call and cancel the radiation appointment. The MO called to tell us chemo and radiation treatment was suspended, so we naturally thought we didn't need to cancel. I guess everyone wants to be the chief.

bizarre... I swear... I know that people are in deadly situations everyday. I get that we - just because we are cancer patients aren't - special. However, this is an emotionally challenging disease, just as other debilitating diseases are. I would hope that a hospital that deals SPECIFICALLY with cancer, is geared towards treating the WHOLE PATIENT, would get it. I mean seriously. No one should be treated like a number in this world. I truly believe we are all equal. This just makes me mad.

And passing the buck is basically a sign of laziness...

I was willing to forgo the original complaints I had when I was post op, because I thought it wss maybe an anomaly. Now I realize is a symptom of a greater problem. So I wrote the letter today... just need to dig up an email address to send it to the hospital.

I'm sorry you have had to go through a similar situation. You would think that knowing a patient already has a lot on their plate, they would try to make it a little easier by doing what they should.

@ Cheryl--you'll like this one. J had to have wisdom teeth removed pre-radiation. There was nothing wrong with them. But, since radiation causes bone issues, the oncology dentist recommended having them out. So she referred us to an oral surgeon who thought he'd pull a fast one and charge for impacted wisdom teeth. I found out because I needed the billing codes for the insurance estimate and we got a second "estimate" from USC School of Dentistry. USC quoted a specific price over the phone using the billing codes. When J went for the consult, USC's price per tooth went down significantly and the billing code changed. I called the oral surgeon and ripped his office staff a new one. I also called J's onc. dentist and told her about it. She was very upset. How disgusting to overcharge patients--happens all the time probably. But, cancer patients?!? Isn't it enough of a financial, emotional, physical, etc. burden already?!? But to cheat people who are already suffering?!? There's a special place in the afterlife for people like that. I like to think it involves teeth being pulled without anesthesia.

Some people just don't give a crap about anything but the lowest denominator - cash. Seriously! I cannot imagine having to worry about insurance, and other financial elements (especially when one income has been put on hold) and then have someone try to scam me. It's too bad you can't report him. It's interesting that J's oncology dentist suggested wisdom teeth be removed... I have 3 impacted and mine said they've been there this long we'll leave them.

There's a serious lack of ethics out there these days... He deserves to have a drill placed somewhere very uncomfortanble.

Many hugs and hopenthings go well!

Sandy - thanks for posting your experiences with the dental codes. I hadn't ever thought to check that but from now on I will. When I needed a tooth drilled and a new cap, my dentist recommended gold because it would last longer. Well, it didn't and a couple of months later, I needed another new cap so I said this time I wanted a cheaper cap so he said ok. I asked the dentist to give me back my gold cap so I could go sell it to one of those wavy arm people you see on the street who want to buy your gold. He said he had a special collection of used gold that he turns in and he would give me a discount on my new cap. With all the work I've had done, I think I've paid for his next vacation.

Have just read your story. I can well empathise with you. I think you have given voice to what a lot of us feel when we are dealing with big institutions.
Sometimes I have to write down exactly what I'm going to say, especially when I'm ringing a department or - once - leaving a message on a doctor's phone.

I'll bet he makes a tidy profit off of selling dental gold, but that's your crown and you should get to keep it. Dental gold is a special alloy so it is not worth quite as much as jewelry alloys. Gold crowns can also be rebuilt, have gold added if they are worn out, etc. Brian is an expert on this and maybe he will add some thoughts.

Yes, Gary - I thought of that later and probably should have just asked for the crown back. I did wonder about the profit he made on the gold. Thanks for the info.

Sounds almost like a scam - he makes you pay for it puts it in it falls out a few months later and then he keeps it with a minimal payback to you.... Maybe he's got the payment for his new Mercedes now?

And @ alpaca... It was a brutal day... No one should be made to feel like an old sock! Ultimately... I called today to find out about a preop appointment that was on my schedule... Got some more runaround... Finally got the name of the nurse practitioner who is overseeing my treatments - she works with the RO, MO, and knows my SO well. We were discussing when everything was going to happen - and she noted that I had an appointment with my SO wednesday - I explained why... Saying I had a bit of runaround friday - and she said..
I didn't know your name - but I'd heard about it from the radiation nurse you'd, dealt with- she was very upset!!!! When she called me, so I emailed the manager about the situation, then she apologized and said for me to give them another chance... So I was if nothing else grateful that someone cares enough. She also said that the stitch should have dissolved that's likely what the problem is... I am hoping so!

Thank you all - you are amazingly giving people. You still take the time even when you have your own full plate!

Bless your heart, what an awful day you had!! So unfair. As to the stitch. There were two under my tongue that didn't dissolve after the first excision and they hurt like heck and were swollen and angry looking. Took a couple of weeks to calm down after the sutures were removed but you can't see where they were now. Hope your's clears up quickly as well and you don't have to deal with anymore runarounds!

Hugs!!

hope a stitch just dissolved for you! I am sorry you got tossed around like that. My OS made me feel just awful the other day cuz I told him he wasn't allowed to do another panoramic xray cuz I still had to pay for the last one cuz my insurance won't cover it, and he said that wasn't his fault, that i needed it done. I asked him if he got the same answers from my PET/CTs that he would from this xray and he said "well ya". so I told him to just wait for the next PET/CT which should be in a few weeks. Then he decides to tell me it won't be till july when it's supposed to be done every 3 months. So now he's going 5 months with no scan.
I hate when docs treat you like crud, just makes you so mad.

Hopefully they learn their lesson and you don't have to go through it again, but if you do, put your foot down! Go above them and turn in a complaint right away. That will get them to shape up!

Actually I was lucky... When I left the clinic that day I was almost in tears... I have to be honest...( and people it takes a lot to make me cry) have never wanted my mommy so badly as I did that day. However, I think the nurse there felt really bad for me. I finally got in touch with the nurse in charge of my case - she runs the show in terms of appointments etc. And was trying to clarify an appointment I thought I had today for a pre op - for a peg. She said. No maybe it was the appointment I had with my SO I was confusing it with - told her no I'd just gotten the appointment friday for him after having a bit of a run around. She said... Oh you're the one... Apparently the nurse I'd dealt with in the clinic was very upset about the whole situation, and called my nurse who in turn sent off a letter to management.

So they are aware of what happened.

I did see my doc today... He said tongue looks fine, not a recurrence, just the stitch which will hopefully dissolve in a few more weeks. He checked my neck too. So I guess I am good. I had 2 CTs on Friday I assume since they are being given to my RO I will hear from him if there is a problem, otherwise I will ask him when I see I'm in a week. So thank you for all your prayers, well wishes, and putting up with my rants.... Hugs to you all - you are fantastic!

Cheryl, How did your first day go? I was so scared on Tuesday which was my first day after the "dry run". Good news tho... every day this week got easier.

Today at Mass General they had a big power falure in radiation. It seemed like half the people were bummed out and the other half were psyched that they might get to skip a day (me being the later). No luck...they were back online in half hour.

Keep me posted on how you're doing please. My prayres are with you. Will

Thanks so much today was good no problems but it's day one - just did my flouride - then off to bed soon. How are you doing? It will all be over in no time... Take care and healing vibes coming your way!

Cheryl, How long are you leaving the floride trays in for? And how often are you using them. My doc was a bit vague...

Hi - 5 minutes a day every day - usually before bedtime because you can't east or drink fio an hour afterwards! Plus I guess if it stays on your teeth all night it can't hurt! Also this my friend is fir the rest of your life - or so I've been told - they have a dental oncologist he's the dude who saw me.
how are you feeling?

I feel good. I'm moving to Boston on Monday for a month to wrap this up. My mouth is already a bit dry after only 4 rad treatments. I feel like I should talk to my RO about where he is aiming this thing. I'm also wondering why I didn't have a neck disection. I think it's because they thought this was a cyst and didn't realize it was cancer till they sent it to the lab. The surgeon did say he took out some surropunding nodes and that they were clear.

[color:#6633FF] Just for the record the Oral Cancer Foundation can NOT, for legal reasons, advocate the use of illegal substances.

The viewpoints of the forum members are strictly their own and not the position of, nor endorsed by, the Oral Cancer Foundation.

If your State or Country allows for the legal use of Medical MJ, with a doctors prescription, then that is your personal decision to make.[/color]

Gary's post is one reason I can never be an administrator or official functionary of OCF - Because then I could not share the message of medical marijuana without risking an implied connection to OCF. (Plus I would have to suffer delusional posters in silence when they tout whatever miracle diet or supplement or secret cure instead of debunking them in the tone and tenor they deserve) I'm more of a NORML guy than a Cheech or Chong.
charm

I don't see why you couldn't be an administrator as long as you put in a disclaimer that it is your personal opinion and not that of OCF.

I 2nd and 3rd that...you would be great

I'll just sit here smiling at this post. Use both barrells on them and don't miss.