Previous Thread
Next Thread
Print Thread
Page 3 of 3 1 2 3
May2019 #198406 05-26-2019 08:36 AM
Joined: May 2019
Posts: 15
May2019 Offline OP
Member
OP Offline
Member

Joined: May 2019
Posts: 15
@PaulB

Thanks so much for responding. I do have a psychiatrist and now a therapist/social worker whom I'll be seeing tomorrow for the 3rd time.

I also have another woman I can call in Montreal to talk, if need be.

You're right about waiting though. It's tough. You've given me the idea to call/write the oral pathologist this week to see whether I can see her earlier for the results.

Will update this thread, accordingly.

May2019 #198407 05-26-2019 08:56 AM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Thanks for posting!!!

We are ALL in this together! Its not easy seeing it that way when you barely have any support close by. You have many here who are in your corner, waiting for your new posts and hoping to see biopsy returned as negative for cancer.

Please do your very best to remember.... right this minute you have NOT been diagnosed with oral cancer. By fast-forwarding your thinking to after getting a cancer diagnosis, you are 10 steps ahead of yourself. Focus instead more on today and everything you can control. I learned this when I had several biopsies and after about the 4th one being negative I began to realize I was making myself miserable worrying about something that wasnt even true. Start doing more positive things for yourself. Hiding in bed wont help you feel better about anything. Do something different even when you dont feel like it. Walk your dog, take a different route and talk to the people you encounter as they are outside doing yard work. I have met so many great neighbors who live all around me by being a little more social. Ive always been a bit quiet, preferring to listen and observe rather than to jump right in adding to an existing group conversation. By approaching people I didnt know while dog walking was a great way to meet lots of nice people. Its worth a shot!

Unfortunately, something strange happens to those people cancer patients have been close to when they learn of their diagnosis. Too often the ones we count on the most, are not able to deal with hearing someone has cancer... I dont know why they head for the hills but Ive seen it happen wayyyy too many times. Its happened to me and many others here as well. Maybe they just cant face their own mortality or they internalize someone else's cancer to worry for their own health??? I found there was such a huge wedge created by those who abandoned me that to this day, 12 years later we still do not talk. Ive accepted the fact I cant get past my hurt feelings and avoid those who let me down. Luckily there is something amazing that happens to those that arent the closest friends, somehow they step up and are there to help the patient with moral support. At some of my low points, I had co-workers I barely knew volunteering to help me in all kinds of ways. With a few of my closest allies disappearing, these kind people couldnt have timed their generous assistance better. Not yet having been diagnosed with cancer should help make it easier for you to be less concerned with those disappearing "friends". For right now, try to ignore the behavior of those you had been close with. Sometimes people close to us need time to process exactly what a cancer diagnosis or scare means to someone they love. One other thing about those who arent around after hearing the word "cancer" other peoples behavior is NOT something you can control. But, you can control how you react to it. They are the ones who are missing out on your friendship... it really is their loss, not yours!!! Its definitely a major challenge, but you can rise above the bad feelings of abandonment! You can see thru those absences they were only there for the good times. Try your best not to dwell on it, all it does is make you upset and angry. Doing positive things that benefit you will help to pass the time. Try to do positive things that help you to feel better about everything you have going on.

Ive been with OCF since I was first diagnosed with oral cancer (OC) in 2007... 12+ years! In that time Ive seen soooo many people join our family "knowing" they had cancer. This was before their biopsy was taken so they didnt really know if they were sick or not. OC is a rare disease. Back when I first joined this group, I had never even heard of it before. I was in my single mom bubble of work, kids, house/yard things. After being here for so many years Ive seen many come here who have jumped past everything and become overly upset worrying about dying. Almost every person who has been here because of negatively "knowing" they have OC has NOT had anything serious. Many have gotten a dysplasia diagnosis (which is NOT a pre-cancer!) or other easily cured ailment. Im relaying this info to you hoping you can use that to move past the despair to think more positive about your life. Every single person has value!!! Every person has good qualities and strengths. Find yours and focus on them. Maybe gardening, dog walking, painting your bedroom, making some small improvements to make the house a more pleasant environment or doing any task that brings you happiness to get past the depression. Whatever you enjoy doing and are good at can be a productive way to handle what you are dealing with. Since you already have different professionals to help get you thru the waiting and depression try to reach out to them asap. Maybe a simple medication change could be all you need to feel better? Here in the US, all doctors are available 24/7 with answering services taking messages and passing them along to the doc outside of regular office hours. That could be another big help to make that call. A 5 minute phone call could change everything!!

Believe it or not, you really are stronger than you think!!!! Have the very best day possible!!!!


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
May2019 #198408 05-26-2019 09:50 AM
Joined: May 2019
Posts: 15
May2019 Offline OP
Member
OP Offline
Member

Joined: May 2019
Posts: 15
@CrystalJ

Crystal, to you and to all the others, I am sorry that you have this.

It's incredible that you weren't a tobacco user or HPV-positive patient.

Thank you so much for hoping my biopsy is clear. Just got out of the psych hospital and was feeling better, looking forward to getting my life back on track, now this....

I HAVE stopped smoking and drinking now.

Crystal, there are no words ... I read your story abut all your tumours and sutures. You are indeed a fighter. I don't know how I'd cope. It's amazing that you say it's all DO-able!! Your confidence and fight humbles me deeply.

But, you do mention that you don't have depression and thank goodness you don't. It is a terrible spiritual trial.

I also have anxiety and some OCD thrown in so now I'm like, if I catch the phone on 2 rings then I don't have cancer, but if I catch it at 3 rings then I do have cancer... and stuff like that.

Here you are having a feeding tube, yet you bake and cook for others and it brings you joy! Hats off to you, really, keep going!!!!

Thank you for writing me...

May2019 #198409 05-26-2019 10:01 AM
Joined: May 2019
Posts: 15
May2019 Offline OP
Member
OP Offline
Member

Joined: May 2019
Posts: 15
@gmcraft

Yes, I'm in Canada, but was referred by my family dentist to a periodontist who, then referred me to an oral pathologist.

So, yes, the biopsy was done in a dental office and not at an ENT clinic.

When I see the oral pathologist, if she wants more samples, then maybe I should tell her to refer me to an ENT because I have poor dental insurance.

Glad to hear the prozac helped your husband. I used to take that, but it stopped working for me after several bouts of severe and prolonged depression. Now I'm on 3 different antidepressants, an antipsychotic, and an anxiolytic. They keep my mind together. I'd have taken my life before now, had it not been for the drugs and the extra support from healthcare workers like my psychiatrist.

Still, I'm going to see an alternative healer, this Wednesday. I'm also looking at ways to get my body to be alkaline not acidic.


And little things do count ... recently, I found out that getting dirty in the garden helps me.

Last edited by May2019; 05-26-2019 10:17 AM.
May2019 #198410 05-26-2019 01:46 PM
Joined: Jun 2013
Posts: 346
Likes: 3
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Jun 2013
Posts: 346
Likes: 3
Hon, you are not depressing me ... I deal with depression too, and I know what you're talking about ... and sometimes you gotta get it out. I feel for you, for sure, but if you gotta talk, you talk.

It's a scary balance to self-advocate without self-diagnosing. You do have to be proactive, but Google isn't always your friend. Though Google does lead us to places like this! smile My recent medical frustration has been a broken hip. They had all sorts of theories about why I must have broken my hip (and bad advice they wrote in my medical chart, that really messed with my in-hospital treatment!), but there wasn't a whole lot of worry about actually fixing the hip, or telling me how to care for it after the surgery. You mentioned in a post that you disagree about a med side effect -- they were sure I'd fallen as a result of a med combination, and refused to let me have some of my long-term prescribed meds while in hospital (I had to argue for every dose of one, which you do NOT stop cold turkey! my psych had fits when he found out) when I'd really just gotten distracted the way moms do, saw a disaster about to happen, and went that way instead of watching my feet ... which then tripped over a pile of stuff that shouldn't have been where it was. Perfectly ordinary scenario. (And some good tae kwon do twist and roll so I wouldn't hit my head, which explains the landing on my hip, alas.) I've had to stay OFF Google because I don't want to know recovery statistics for elderly people and broken hips ... I'm not elderly, just chemo and radiation affected ... and all the stats are scary. But I'm healing. And at my second post-op appointment yesterday, he didn't rule out Tae Kwon Do in my future either, though probably no more serious sparring for me. (Which I am okay with. I'm a chicken. LOL.)

But without the experience from all this cancer nonsense, I wouldn't have even questioned as much as I did, during my stay. We learn. You're here. I hope you don't end up having to stay here, but if you do ... you'll have folks to help you know what questions to ask. You REALLY don't have to fret right now. You did the right thing by getting the biopsy done. That was AWESOME self-advocacy. Now is that waiting for the results time. After that is the time to either fight or throw yourself the biggest party ever. smile Right now, just hang in there.

KristenS


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
KristenS #198419 05-27-2019 03:12 PM
Joined: May 2019
Posts: 15
May2019 Offline OP
Member
OP Offline
Member

Joined: May 2019
Posts: 15
@ChristineB


Thank you so much for writing again, Christine. I’m so touched that you would take the time.

I wish I had the confidence and feel that I’m stronger than I think… this weekend, I had some trouble eating (due to nerves) and ended up sleeping a lot). Yet, you said, “Every person has good qualities and strengths. Find yours and focus on them.” I think that is very sage advice. Focus on that!! ‘Cause right now, I’m thinking a lot of bad things about myself “Coulda, woulda, shoulda” type of thing. Yes, what you say makes a lot of sense.

I didn’t know dysplasia was not a form of precancer. I honestly don’t know what to expect in terms of results. I guess I’ll just have to wait and see.

I did call my psychiatrist last week and he called in to the pharmacy to reduce one of my meds so that I can start producing my own saliva. I see him in person on Thursday, and will ask for a med change to another in the same class but that won’t dry the mouth as much.

I feel very badly about the candida having “entered” my tongue. The oral pathologist said it is very serious. So, it’s not yet cleared up, so if it does get cleared up, I suppose another biopsy is in order. Yet, as you say I’m getting 10 steps ahead of myself. I still can’t understand why my family dentist didn’t send me to a specialist earlier. Maybe he is not as educated as I would’ve thought.

Anyhow, enough of the negative …

You’re right about some people you’d never expect stepping up to the plate when least expected. I have you and all the folks on the forum who’ve written, and I can’t tell you what a difference it’s meant to me; also, 2 women from a group I belong to wrote with thoughts and prayers and they barely know me. It’s all been a blessing and I feel gratitude.

I’m very impressed by your inner strength and your positive attitude. Hope some of it rubs off on me.

Great to get out of yourself with the dog walking and meeting people. Funny, I was thinking of getting a dog. Right now, I have a cat and she’s great. She definitely wants to be the only cat in the home. We’ve had a few dog visitors and so long as they keep to themselves, she’s not phased. A real princess cat.

Pets are really wonderful: so unconditional in their love.

May2019 #198420 05-27-2019 03:28 PM
Joined: May 2019
Posts: 15
May2019 Offline OP
Member
OP Offline
Member

Joined: May 2019
Posts: 15
@KristenS

Thank you so much for writing, Kristen. It means a lot.

So, yes, you know about depression, eh?

Well, then you know it’s tough.

Luckily, I have a good team around me. Today, I saw the social worker/therapist. And she echoed not to get ahead of myself with worry, though easier said than done. Still it’s good to have it drilled into my head by her and by those on this board.

I’m very surprised to hear that docs would take you off your meds in hospital without consulting the prescribing psychiatrist. And, I’m very sorry to hear about your broken hip. Sending you healing energy to get well soon.

You’re right about Google not always being your friend. I guess it’s all about using it with discernment and some balance. Haha Not always things I’m noted for. But, in truth, you make a good point. Why drive ourselves silly with worry and dwell on that which we do not yet know.

There was a story about a woman, on the news, who was diagnosed with Stage 3 breast cancer and has lost her hair now through treatment, etc. She has got back to dancing and doesn’t Google anything. She goes for treatments and tries to be as happy as she can be. She’s also a mom.

I might very well need to take a page out of both your books and think of other things … tae kwon do, eh? That’s great!

May2019 #198421 05-27-2019 07:02 PM
Joined: Jun 2007
Posts: 10,507
Likes: 6
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)
Offline
Administrator, Director of Patient Support Services
Patient Advocate (old timer, 2000 posts)

Joined: Jun 2007
Posts: 10,507
Likes: 6
Its 100% true that every single person has their own strengths and things they are smarter or better at than most others. Im sure you have many things you are good at. Focus on those positive things and what things make you happy. Nobody can turn back the clock and get a redo of all the shoulda coulda woulda things they wish had gone differently in their life. Things that have already happened are things we cant change. Focusing on things that cant be changed is unproductive and does nothing to help boost your spirits. Try to get involved in some hobbies doing things you enjoy. Maybe join a group or two. By joining some new organizations, you will meet new people who could turn out to be the greatest friends down the road.

When I was just starting out I made myself do positive things whenever I started to worry. I quickly realized worrying was never going to help anything, all it did was get me upset. I worried about things I had no control over which was completely illogical and a huge waste of my time. I started to limit how long I would think about those negative things. When I found myself "going there" I would set a timer for a few minutes and when it went off I forced myself to get up and go do something positive, something productive. I found by limiting my "what if" way of thinking was a huge help in making me feel better about my situation. If I can do it, I know you and others can too!!! Everybody can try doing the "what if" time limit and "change the channel" when times up. After the "what if" time was up, I worked on doing something positive. I cleaned out my closets one at a time and then moved on to dresser drawers, kitchen cabinets, pantry and thats as far as I got. Everybody worries, its very hard not to when facing potentially serious health conditions. But if you could train yourself over time to only allow so much time to devote to the "what if" worrying before you "change the channel" and physically get up to go do productive, positive things that hold your attention then I know you will be doing yourself a huge favor and you will feel alittle better about everything. Plus you get the satisfaction of a job well done by accomplishing things most people tend to put off. Im one who put those things off but doing my closets, dressers, kitchen cabinets, etc. really helped pull me thru some hard days that would have been spent worrying about something I had absolutely no control over.

I have faith in you and know you can move past this and take it day by day. Right now, you have NOT been diagnosed with anything. Since you quit smoking that will help to give your mouth time to heal so hopefully you will get a negative result from your biopsy. I know its NOT easy at all for you but this sort of thing isnt easy for most people. It can be very scary time when you are worrying you might have cancer. I really hope your results come back negative, with no sign of cancer. Take it day by day and do your very best to stay busy doing things that require complex thinking and concentration. Reading books that hold your interest or watching movies with good detailed plots that make you pay attention to follow along both are easy things to keep your mind entertained so you dont focus on worrying 24/7.

Just be kind to yourself in whatever you do in life. You really do deserve happiness and an easier life than what you currently have.


Christine
SCC 6/15/07 L chk & by L molar both Stag I, age44
2x cispltn-35 IMRT end 9/27/07
-65 lbs in 2 mo, no caregvr
Clear PET 1/08
4/4/08 recur L chk Stag I
surg 4/16/08 clr marg
215 HBO dives
3/09 teeth out, trismus
7/2/09 recur, Stg IV
8/24/09 trach, ND, mandiblctmy
3wks medicly inducd coma
2 mo xtended hospital stay, ICU & burn unit
PICC line IV antibx 8 mo
10/4/10, 2/14/11 reconst surg
OC 3x in 3 years
very happy to be alive smile
May2019 #198422 05-27-2019 07:07 PM
Joined: Jun 2013
Posts: 346
Likes: 3
Platinum Member (300+ posts)
Offline
Platinum Member (300+ posts)

Joined: Jun 2013
Posts: 346
Likes: 3
Yeah, I've dealt with depression and a severe panic disorder for a couple decades now. It's been an interesting journey. I've had a good therapist for most of it, and varying levels of psychiatrists ... the one I have right now is decent. And very patient.

The best thing my therapist ever told me, in relation to suicidal thoughts, is that wishing I were dead wasn't the same as wishing to act upon it. Wanting to not be in pain wasn't the same as wanting to do something about it. I had been afraid to even discuss such feelings, for fear it'd be reported or something and I'd risk losing my kids ... but he helped me be okay with talking ... and that was a huge gift.

As for the hospital meds issue ... I'm not sure which doctor made the call, but somebody glanced at my chart without talking to me, decided I must have fallen because I was taking things that make you sedated / dizzy, and therefore declared I should no longer take such medications. They didn't talk to me to ask WHY the fall happened (which the nurses did), or if I'd had some of the related meds in recent days (I hadn't), or if the important one was something I'd taken regularly and long term (I do) ... so it was terrible advice. I did manage to convince one of my care nurses that I really did require my anxiety med regularly ... but when I could get her attention to get my meds, she wouldn't dispense it at the same time as the pain medication because of it maybe making me wobblier, so she kept postponing it, so my timing was ALL over the place. When seriously, the stuff I take for migraines is stronger than what they were giving me post-op for the hip. Sigh. The meds were NOT the issue. (Actually, besides my klutziness and distraction, I'd also been taking an antibiotic that can cause muscle pain and loose joints, so we think that contributed. As soon as I mentioned it in the ER, the nurses knew right away which one I was talking about. I'd already spoken to my family doctor because it was giving me trouble and we'd stopped my taking it, but the damage was done. But that didn't get to the notes the mystery doctor read, apparently.)

So ... self-advocacy. The funny thing was, I had the very meds I needed over in my purse, and if I'd wanted, I could have gotten them at any time ... but I felt it was more important for the nurses to be aware of what was in my system at any given point. That's probably the only thing that did keep me from completely panicking, because I had the option if I had to have it, so I waited and went through their system.

Tae kwon do, when I am well enough to tolerate it, is a sort of therapy for me. I'm ADD, and klutzy as all get out, but when I can manage to learn the forms, it can be nearly meditative. I can't just sit and meditate the way some people can, and the way my therapist wishes I could ... but I can focus on the movements and get in a sort of zen place that calms my brain when I master a form. I'm not strong, and I'm not great, but I do love it. I managed my higher belt ranks while finishing cancer treatments and then also when healing from a broken shoulder. (As I may have mentioned, I get points for spunk more than for actual ability to beat opponents.) I'm a second-dan black belt now, and hope to keep going. Chemo brain makes a lot of the memory work foggy for me, but it is still so much fun ... and I love cheering on my young friends in the studio, too. And they cheer me on, which is pretty cool. It was a lot easier when my husband was training, too, because he could help me study ... but maybe I can talk him back into it. Anyway, whatever hobby helps you chill, this is the time to enjoy it. smile (I took up sewing during chemo ... not big sewing, but sewing for my favorite 6" doll ... perfect for toting around ... the nurses had fun seeing what I was working on each week.)

Wow, that's a ramble!


Surgery 5/31/13
Tongue lesion, right side
SCC, HPV+, poorly differentiated
T1N0 based on biopsy and scan
Selective neck dissection 8/27/13, clear nodes
12/2/13 follow-up with concerns
12/3/13 biopsy, surgery, cancer returned
1/8/14 Port installed
PEG installed
Chemo and rads
2/14/14 halfway through carboplatin/taxotere and rads
March '14, Tx done, port out w/ complications, PEG out in June
2017: probable trigeminal neuralgia
Fall 2017: HBOT
Jan 18: oral surgery
Page 3 of 3 1 2 3

Link Copied to Clipboard
Top Posters
ChristineB 10,507
davidcpa 8,311
Cheryld 5,260
EzJim 5,260
Brian Hill 4,912
Newest Members
Jina, VintageMel, rahul320, Sean916, Megm37
13,103 Registered Users
Forum Statistics
Forums23
Topics18,166
Posts196,921
Members13,103
Most Online458
Jan 16th, 2020
OCF Awards

Great Nonprofit OCF 2023 Charity Navigator OCF Guidestar Charity OCF

Powered by UBB.threads™ PHP Forum Software 7.7.5