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#23951 08-01-2007 04:20 AM
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Hello everyone,
I'm a 41 yr old mother of two who's mom was diagnosed last friday (july 27) with oral cancer. She noticed a painful lump in her gums about two or three months ago and has been bugging doctors ever since. She had three different biopsies done on the area over the last few months and had to call and call and call and keep bugging doctors because she knew in her heart it was cancer (smoking 50+ years).

The diagnosis was not too much of a surprise to any of us but the news is still overwhelmingly devastating to hear.

I have a few issues I have already become very anxious about especially after doing extensive reading on this board for the past week or so.

I am getting a fairly clear picture of the suffering that people with oral cancers go through and it's already breaking my heart to imagine my mom going through all that.

My mother lives with my husband, me and our two children 10 an 2.

My 10 year old daughter is so so close to grandma and i'm not sure how to tell her without breaking down completely.

I don't want my kids to witness the terrible suffering their grandma may go through but seeing as mom lives with us and I am a stay at home mom I will also be her primary care giver (my dad and her are separated for many years).

These are just a few of the heartbreaking things that have went through my mind so far and I'm sure I'll have many, many questions and complaints over the coming months.

It's nice to have a place to come to express these feelings. I find that I can organize my thoughts and not get too emotional by writing things instead of talking to people. Whenever I try to talk to anyone about this (sisters, friends, husband) I break down completely.

Thanks for listening.

Jackie

#23952 08-01-2007 06:06 AM
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Hi Jackie,

I'm so sorry your mom has cancer. Although, it is good to know she is living with a great support team.

Are you working with or already planning to go to a Cancer Center with an oral cancer specialty? How frustrating that you have been waiting so long to get biopsy results.

When my husband was diagnosed by his ENT, the ENT wanted to do surgery within 2 days and then he wanted us to find our own chemo and radiation drs. post surgery.

Fortunately, our family doctor referred us to a cancer center where an ENT surgeon, a chemo doctor and a radiation doctor all reviewed his case and they jointly determined a course of treatment. And, they are all working together within one facility.

I sometimes think about how much harder this would have been if we went the route our ENT suggested.

I have 2 kids (ages 13 and 12) and their dad has base of tongue cancer and he has 4 RT treatments and 1 chemo treatment left.

As far as talking to your daughter, I was surprised at how well my kids took the news. Initially, they were sad and concerned. However, our treatment team believes my husband will be a survivor, so we have always stayed optimistic in my husband's ultimate outcome.

And, they have had a chance to meet the doctor's and nurses on my husband's team. Both of my kids were made aware that his treatment team was going to make him very sick in an effort to kill the cancer...and, then he would get better again.

And, they have seen me break down and cry more times than I can count this summer. I, too, believe in my husband's recovery. It's just hard to see anyone go through these treatments.

It's surprising how resilient and optimistic kids are. They are handling this really well...I would say better than I am on most days. :-)

I look forward to hearing more about your mom's treatment plan. It took about a month from the diagnosis to get him assessed and set up for a treatment plan. That was a hard month...my best advice there is take a notebook or a tape recorder to every appointment. There is just so much information...and, for me (a very non-medical person) it was very overwhelming.

Now, it isn't so overwhelming...and, I am becoming better with the terminology. And, I am able to see clearly that this is just one lousy, concentrated short time of life.

The kids and I spend a lot of time saying "this time next year we will be doing...." Because, we look forward to this being a memory next summer instead of the reality it is now.

Wishing you and your mom the best,


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
#23953 08-01-2007 12:44 PM
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Hi Margaret,
Thanks for the reply and words of encouragement.

We were notified today that she has an appointment at the Hamilton Regional Cancer Centre this friday (about 45 minutes away)...so yes, a team from there will be treating her.

They said she would be there most of the morning so I'm curious as to what will happen. She hasn't had a CT scan or anything else done yet (appointment next Thursday) so maybe you or someone else here might have some idea of what this initial appointment will involve.

Also I am open to suggestions for any questions I might ask. I want to write everything down and try to come away with as much info as possible.

My gut feeling is that her cancer is fairly well advanced and they will try radical treatment...but that's not based on any facts so I might be given more positive news in the coming weeks.

All the best to you and your family in your husbands treatment.

Jackie

#23954 08-01-2007 01:04 PM
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Jackie: Welcome to the forum....Where is her cancer, beneath a tooth? Is it Squamous Cell?
Read my last posts for encouragement...husband is 76, not even two weeks past surgery and is doing marvelously well! Keep your chin up and keep us posted! Lois & Buzz in NC


CG to 77 y/o hubby;SCC Alveolar Ridge; Wake Forest Baptist Hosp surgery: 07/19/07; bi mod radical resection/jaw replacement;
T2 N2-B M0 Stage IV-A
28 IMRT +
6 Paclitaxel/Carboplatin
Getting stronger every day!
#23955 08-01-2007 01:11 PM
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Jackie,

Sorry to hear that your mom has oral cancer. It's great that she will be treated at a cancer center. Once she has been seen and you can post more details as to the staging of her cancer, as well as the treatment plan that she has been given, you can post these things and you will surely hear from members that have been in similar situations.

I might suggest that you try to have someone else with you at the appointments to help with the note taking. It can be a little overwhelming and you might be distracted trying to listen, take notes and ask questions, all at the same time.

Good luck on Friday.

Jerry


Jerry

Retired Dentist, 59 years old at diagnosis. SCC of the left lateral border of the tongue (Stage I). Partial glossectomy and 30 nodes removed, 4/6/05. Nodes all clear. No chemo no radiation 18 year survivor.

"Whatever doesn't kill me, makes me stronger"
#23956 08-01-2007 01:23 PM
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Hi Jackie,

She is going to the Cancer Center this week and getting a CT next week?

In our situation, before my husband was seen by the cancer docs, he had a CT and a full body Pet Scan done.

The CT scan will let the docs know if there is any nodal involvement and the Pet Scan is to help them assess if there is cancer anywhere else beyond the biopsied area.

Without this info, I do not know how much they can do at the first appointment. Do you have the names of the cancer docs she will see on Friday? If I were you, I'd call and talk to the docs themselves or their assistants or nurse practitioners to make sure they know you don't have the scans in hand. They might be able to help expedite the scans which should expedite the treatment plan.

Although keep in mind, I am only speaking from my experience with my husband...I have only gone through this one time (thankfully). Others might have had different experiences.

I am glad your mom is being treated at a Cancer Center.

I'm assuming that her biopsy showed she has SCC (squamous cell cancer)...did they tell you if it was well differentiated or poorly differentiated?

A good Cancer Center should have a tumor board that meets to discuss treatment plans for each individual patient. At a minimum, the tumor board would include a surgeon, a Radiation Doc and a Chemo doc.

I am not a medical person. So, from a layman's perspective there seem to be 3 options with Oral Cancer...the option(s) your treatment team presents to you will be based on your mom's specific situation.

1) Surgery only--if the area removed shows clean margins around it (no cancer cells).

2) Chemo and Radiation. Generally Cisplatin or carboplatin...sometimes Erbitux...along with 6 or 7 weeks of daily radiation. In some situations, like my husband's, this could elevate the need for surgery...and in others, this type of treatment will shrink a large tumor down before surgery. Although, my understanding is that surgery post radiation has some extra difficulties associated with it as the radiation is hard on the tissues and muscles.

3) Sometimes people need a surgery...and, then without clean margins they have to do chemo and radiation afterwards.

I think in the past, places would do radiaiton treatments without chemo. But, you would never do chemo without radiation as they haven't figured out a chemo that will truly kill these kind of cancer cells without the assist of radiation.

This probably all sounds scary, and it is. But, it is do-able. And, as you can tell many people on this forum have gone through the treatments above and are living full and productive lives.

At your first appointment, if your mom is in pain, make sure that they know this. No one should be in a lot of pain prior to or during treatments.

And, if your mom has anxiety or depression over this, get something for that too.

Depending on the comprehensive nature of your cancer center, they may discuss dental work with you or you may need to make a separate dental appointment. On occasion, some people need to have some teeth removed as part of their treatment plan...(my husband did not). If Radiation is going to be part of the treatment mix, you will want to consult with a dentist regarding fluoride treatments or trays too.

They may get into discussions of things like feeding tubes and/or Pic lines or ports. While my husband has neither, there are days I wished he had both!

I hope this helps.

Why do you have the gut feeling the cancer is advanced? Do you know if she has any swollen lymph glands?

It's really hard not to think the worst possible scenario when you are first dealt the "C" card. But, it is possible that your mom's cancer was caught early.

I wish you and your mom the best too, I look forward to hearing more about the upcoming appointments.


Margaret
----------
C/G: Husband, 48 (at time of dx)
Dx 5/18/07 SCC, BOT, lymph node involvement. T1N2BM0. (Stage 4a, G2/3)
Tx 6/18 - 8/3/07, IMRT x 33 Cisplatin x3 (stopped after 1st dose due to hearing issues). Weekly Erbitux started 6/27/07 completed 8/6/07.
#23957 08-01-2007 01:40 PM
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Hi Jackie

Jerry is right. Take someone else with you to the appointments if you can. My Mom and I went with my Dad, and we all three picked up on different things that were said.

Right now you are still reeling from your Moms diagnosis. It was just a few months ago that I was in your same position. What you are feeling is normal. The key will be to get as much information as you can and ask tons of questions. I found for every answer that I got I had another question.

My Dads first doctors visit consisted of us meeting the surgeon, an examination of his mouth and then he had his nose scoped so they could see if the cancer had spread to his sinuses yet. He didn't have his CT scan until a few days after that. Everyone's first doctors appointment is different - it just depends on where their symptoms are.

Out here you will find a lot of support and encouragement from people who have walked down this path before you. Hang in there. You are not alone.

Joy


CG to Father, 75 yo with SCC of the mouth; upper maxillectomy and neck diss. performed on 5/23/07. Father also suffered heart attack during surgery and now has CHF. RT complete on 8/28/07. Cancer back 11/27/07. RT and Chemo to start on 12/17. Cancer back 6/17/08. Finally at rest 08/08/08.
#23958 08-01-2007 01:47 PM
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Wow!! Thanks to everyone for all the input. I will try to answer some of the questions.

She wears dentures and has felt them rubbing on something for many months.

You can see a visible swelling in her neck under her ear.

She is in quite a bit of pain already and I made her call her primary care physician on monday to get something (Tylenol #3 for now)

I did not go with her to her appointment last week. She snuck out of the house and took a taxi while I was in the shower...didn't want to bother me she said?!?!!

I called my sister once I found out she was going there alone and my sister met her there. Both mom and sister said alot of "I don't know" when I asked them about type and stage and location. That's why I want to make sure I'm there this friday to ask some questions.

I too thought it was odd that they would want to see her before the CT scan. Perhaps it would be a good idea for me to look into this tomorrow. Thanks for the suggestion.

I'm sure this first month or so is going to be pretty overwhelming and like they say there is strength in numbers.

You guys don't know how calming this is for me to be able to rationally discuss some of these issues.

My sisters are so upset they can't even drive my mom to the cancer centre on friday...my brother is blind since the age of three due to cancer with a relapse last year and i'm not sure if my dad even knows yet.

I must go put the kids to bed now but thanks again for all the caring.

Jackie

#23959 08-01-2007 02:50 PM
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Jackie, You might need to tell your Mom that it is imperative that you and or another family member be at all of these appointments. As her primary caregiver, you will need to stay on top of everything that is going on. Get that note book ready! You will want to write down terms and medical jargon to bring home to research, the names and ph # of all of her medical team, etc. I always took a calendar with day blocks large enough to write in to every appointment. I also had other important dates [family stuff] filled in. That way I knew a month or so ahead what our days were obligated to. One thing a caregiver needs to be is get very organized.I'm glad your Mom is there with you. Amy in the Ozarks


CGtoJohn:SCC Flr of Mouth.Dx 3\05. Surg.4\05.T3NOMO.IMRTx30. Recur Dx 1\06.Surg 2\06. Chemo: 4 Cycles of Carbo\Taxol:on Erbitux for 7 mo. Lost our battle 2-23-07- But not the will to fight this disease

:
#23960 08-01-2007 03:05 PM
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Jackie:

Im sorry for you and your family to be going thru this. Its very difficult, I know Im going thru it also. You will need a notebook and I take every doctor's card and staple it to the inside cover of the notebook. You will also need a calander to write down doctor appointments. I have 7 doctors and also my family physician. Kind of hard to keep them all straight w/ out the calander and business cards. There will be alot of appointments and tests done to see what stage she is. This will be determined thru the PET scan. She will also have an MRI, CAT, scan blood work, she will to see a dentist too, even with her dentures, he will make sure of the fittings. Ask your dentist for magic mouthwash, it will bring her great comfort. Its 30% each of benadryl, lidocaine, and malox. Your mother is very lucky you are there to help her. I wish you both the very best of luck.


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
#23961 08-01-2007 04:32 PM
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Jackie, is her problem area on her upper gum or her lower? Several people on this forum have experience with one or the other. My cancer was on my upper gums, and there are several others here with similar circumstances. Let us know a bit more, and we can help you better.

BTW--I just yesterday had my 18-month checkup, and I continue to be cancer-free, so perhaps that will give your mother a bit of a lift.

Tell us more, and we can be more specific in our advice.


Colleen--T-2N0M0 SCC dx'd 12/28/05...Hemi-maxillectomy, partial palatectomy, neck dissection 1/4/06....clear margins, neg. nodes....no radiation, no chemo....Cancer-free at 4 years!
#23962 08-01-2007 05:46 PM
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Jackie, just a note with regard to your comment about doing a lot of reading here. Sometimes it seems like the very sickest people or their caregivers post here. Please, please know that there are some like me who went through the surgery, radiation, and chemo and did not have a really tough time. I was very tired, and I was most grateful that I did not have to drive myself to appointments. But I bounced back remarkably fast to a truly normal life and am now more than five years past all of that.

The suggestions given above are excellent. I kept a calendar book with large squares to note all the apointments. The tip about collecting business cards is very good also. I guarantee you they will come in handy.

Finally, know that once the flurry of initial appointments settles into the routine of treatment, things will seem much calmer.

I wish you and your mom the very best of luck. Remember, for any question you have, there will most likely be one or more people here who can answer you from experience, which I found to be the most helpful when I was on the asking end.

#23963 08-02-2007 01:29 AM
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Amy...I read your blog and words cannot express how much I admire your strength. I am so sorry for your loss and hope each day is getting a little easier for you

Christine... great idea about the notebook and business cards. I will go out today and pick up a small business organizer with a calendar and notepad and room for business cards.

August...I believe it is her lower gum but again I've got little information myself. I will fill everyone in with as much as I learn myself. Congratulations on the 18 month check up!!!! That definitely lifts my spirits (as I'm sure it does yours LOL)

Joanna...Thanks for reminding me that many people go through this without too much trouble. My mother in law went through a battle last year with cancer in her nasal passages. She was sick and had some really bad days and weeks but up until a few weeks ago she said she was feeling back to normal (unfortunately it looks like she is having a re-occurance now and we will know more about her cancer in a few weeks)

Again thank you all for the encouragement and suggestions. I have alot going on right now with trying to deal with a very active and difficult two year old, a mother-in-law who is in need of some love and support, we are also in the process of looking for a new home...the list goes on and on.

So if you don't hear from me for a few days it's not that I don't appreciate and value every word everyone has for me...it's just lack of time. I do check in on this board several times every day even for just a minute or two to stay up to date with new posts.

I have a very busy weekend coming up and will be out of town visiting MIL and camping with kids (long weekend here in Canada).

My update about fridays appointment will likely come next week sometime.

Have a great weekend everyone!

#23964 08-05-2007 07:01 PM
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Hi Jackie,
I agree with everyones suggestions above. I found that I can't write as much as what the doctor is telling us....and there are so many doctors, interns, rns, social wrkrs....it feels almost impossible to recall what was said. I think a voice recorder would be an excellent tool to take with you, to record what the person is saying, I also think a notebook to write down your thoughts as you are being told different things.
I have two girls who are extremely close with my mom, they are 17 and just turned 11. My older one will talk about it, my younger girl holds a lot in...I bought her a journal, she write s in it anytime she doesn't want to talk about what is bothering her. She has shared her journal with me on a few occasions, the one point that was repeated was she felt insecure because she didn't know what was happening, and felt that everyone else knew and she was more frightened because it was being kept from her. Honesty works best. Our journey so far has been an insane ride...and yet, at the same time, it has brought us all even closer. We've shared so many changes in decisions with my mom, decisions that were out of our control, that as adults it was confusing, for my kids....I can't even label it. I think it helps to be open, it allows them to share their feelings too, and not be so afraid and confused on their own. My sister has a little girl who will be two in Sept. I saw her on Saturday, she looked at me and said, "Mom-mom? Mom-mom's hungry and tired." I almost cried. My niece, while only a baby, knew exactly what mom has been feeling.
This forum has been such a gift to me. I felt like my family and friends let me down. I was scared and alone...until I met my friends here. There is always a light on here, a safe haven, a friend nearby.
Hope your appt went well.


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
#23965 08-06-2007 12:18 PM
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Hi everyone,
We just returned from visiting my in-laws.

Our appointment on Friday went quite well. We met mom's surgeon and radiologist as well as various nurses and surgical residents who also examined my mom.

Initially when we met with the radiologist he said treatment would probably consist of radiation followed by surgery depending on what both doctors discovered in their examinations that day. Within just a few minutes he had already changed his mind and said both he and the surgeon would probably suggest surgery first. I believe in his examination of her he could readily tell that it was quite advanced and more than likely well into the bone in her jaw.

I asked him about type of cancer and stage and he was very forthcoming about all the reports so far and let me read for myself and answered questions honestly and compassionately.

It is SCC and was staged at T4 N0 moderately differentiated.

The surgeon came in soon after to give his opinion and he said yes she needed surgery asap and upon examination found a swollen lymph node so changed her staging to T4 N1 with a whole bunch of mumbo jumbo after that.

He told her to cancel her CT scan at our local hospital this coming thursday and he would get her in tuesday or wednesday at his hospital and she could see him for a consultation and results immediately afterwards.

These doctors gave my mother a much needed boost of confidance. Just the fact that some doctors are listening to her and ready to offer her some immediate treatment makes her feel better.

I will keep everyone informed of all the latest news as I get it.

Thanks
Jackie

#23966 08-08-2007 07:28 PM
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Jackie,

Just wanted to say Hi, and thinking of you and your MOM.

So glad you found this site. I know it was a gift to me as well.

The more you know the better you will feel.
Take care..
Diane


2004 SCC R.tip 1/4 tongue Oct. 2005 R. Neck SCC cancer/Chemo Cisplatin 2x/8wks. Rad. Removed Jugular vein, Lymph gland & some neck muscle. TX finished 1/20/06... B.Cancer 3/29/07 Finished 6/07 Bi-op 7/15/09 SCC in-situ, laser surgery removed from 1st. sight. Right jaw replacement 11/3/14. 9 yrs cancer free as of Jan. 2015
#23967 08-09-2007 01:47 AM
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Hi Diane,
It sounds like you've been through quite alot in the last few years.

Glad to see you've overcome everything.

What doesn't kill us makes us stronger...right?!

We are still waiting for mom's ct scan appointment. The surgeon last friday said they should be able to set it up immediately and i've been calling his office and leaving messages with no response. Needless to say i'm a little ticked off. I'm not sure who else I can call.

Hanging in there

Jackie

#23968 08-09-2007 07:29 AM
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Jackie-
I know it's not the protocol, why not call where she is supposed to have ct scan and see if they've heard anything from the office? Maybe they have an inside number they could call and ask about helping you schedule for your mom.
I know it sounds crazy to do, you wouldn't believe how many times one office mom was dealing with dropped the ball. You have to be the strongest advocate you can be, and sometimes they don't make it easy for us. When you went to the appt, can you recall the nurses name who was with your mom's doctor? If so, maybe call and ask for her, maybe she can respond to a call.
Good luck.


Donna
CG to Mom, dx 4/25/07 with tongue cancer,T3N0,tx began 7/6/07, 31 tx's of IMRT, 8 cycles of Erbitux. Brachytherapy, surgery, left neck dissection and temp trach placed all on 9/17/07, trach removed 10/17/07. ORN of jaw, late effect of radiation symptoms. **lost my beautiful mother on 5/5/11.
#23969 08-09-2007 01:35 PM
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Thanks Donna,

We managed to get in touch with the surgeon's assistant this morning and she said that she didn't have any requisition for a ct scan for my mother. Why couldn't she have returned my calls and told me that? She said she would take care of it but I don't have that much confidence in her anymore .

I called directly to the cancer centre she went to last week and spoke to the lady at the head and neck clinic and explained the mix up. She said she will look into it and try to sort it out and get back to us tomorrow. I hope so or they will both be hearing from me again.

My mother already had an appointment at our local hospital for today for a ct scan but she cancelled it on the advice of her team at the cancer centre.

It's all very frustrating...this waiting game.

Hopefully tomorrow will bring some more information.

Jackie

#23970 08-09-2007 07:46 PM
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Cancer is a hard enough battle Jackie but sometimes the battle with administrations can be just a difficult and a lot more frustrating

good luck to you and your mum

liz


Liz in the UK

Husband Robin aged 44 years Dx 8th Dec 2006 poorly differentiated SCC tongue with met to neck T1N2cM0 Surgery and Radiation.Finished TX April 2007
Recurrence June/07 died July 29th/07.

Never take your eye off the ball, it may just smack you in the mouth.
#23971 08-10-2007 01:22 AM
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Thanks Liz,

I read all about your battle with Robin and am so sorry for your loss.

It's amazing to me that you are still here offering advice and support to others when your heart must still be broken in two.

You are a very very strong lady and obviously very compassionate.

All the best
Jackie

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