Hello all,

My name is Mandy, and I am the mother of an 18 year old daugher called Hayley.

Hayley has throat cancer. We were told the news on the 20th November. Her cancer is situated on the left side of her voice box.

I searched for a site that could help me come to understand what will be happening, and to get advice and information so we can face this head on.

Her ENT consultant has been very positive and has told Hayley that there is no reason why she can't beat this. I have to hold on to that.

Hayley herself, is being so positive - she has amazed me...she says there is no way that cancer will beat her...she is ready to kick its butt! She has even started a blog about it!

This is one journey we didn't plan...who does...but my heart breaks for her but if she can be strong, then I have to be strong for her.

We are going up to Charing Cross Hospital, London,(6th Nov ) to meet with a Dr Sandhu - and we are hoping that he will confirm the laser treatment. If so, her operation will be within a few days of this meeting.

Forgive me if I am ' a little all over the place' but the past 3 weeks have been hell - but the past few days I have felt stronger..

I just wanted to share with you, and I thank you for listening.

Mandy :-)

Hi Mandy
Liz in the Uk here
I guess you meant 5th December to see the Doctor at Charing Cross.I wish you all the luck in the world,and would like you to know that if any single group of people can help you get your head round this hell and cope with it,then you have found them.

My thoughts will be with you

love and all the best liz

Hi Mandy -
You HAVE come to the right place for comfort, experience you can count on, and people who have walked the same hellish road you are on and are here to talk about it. I have all confidence that Hayley will "kick butt" with this cancer - she is young, has the right attitude, and the advances in cancer treatment are all in her corner! Plus you will find the best support team anywhere with the people in the Oral Cancer Foundation forum. As she continues in whatever treatment plan the doctors choose, please keep us informed and ask! ask! ask! questions. You will get answers. Best to you and to Hayley! Warmly, JaneP : )

Mandy


My thoughts are with you and Hayley ..I can agree with the others here and tell you , you won't find a better place for support , information, advice and just compassion and understanding of what you both are going through .

PLease do keep us informed on her treatment plan and Jane is right ASK questions , cus others here have experienced it and they can give you some insight.

NO this isnt easy , but it can be done and there are alot of us here that can atest to that . Let her know we are all standing beside her and holding her in our thoughts, and you as well !!

Shar

Thank you all for your kind words.

It feels such a long time until Wed 6th Dec - every day seems slow and I worry that the cancer will grow.. although I have been told not to worry as two weeks after diagnosis will not make a difference (try telling that to my mind!).

I will come back when i know more of what's to be.

Thanks again.

Mandy

Mandy, I will be thinking of you and your incredibly strong daughter Hayley often. Do you know if they can remove the cancer with surgery only? Or, are they recommending radiation and chemo?

Whatever your situation come here often. It's a tough job to be a caregiver to someone you care so much about. And you will find so much help, love and support here. 18, that just seems too young. Just a few years older than my kids.

I like your daughter's attitude. We'll be rooting for her to kick cancer's butt TOO!

Margaret,

Thank you for rooting for my girl!

I don't know if you, or anyone else here is interested but Hayley has her own blog where she has started to write about this new journey..

www.kickingcancersarse.blogspot.com. (I hope it is ok to leave this here?).

Please feel free to read, and leave her a comment. She is interested to hear from any survivors of cancer!

With regards to Hayley having surgery to remove the cancer; Our consultant where we live has recommended laser surgery but we do not know if this will happen until we see another consultant who performs the Steiner Laser procedure. We see him on Wednesday morning. What we have been told is that the tumor is not attached to any skeletol - and that laser would be the best surgery for POST cancer - then if agreed, there may be some radiation but smaller amounts given over longer time? Because of her age and the effects it could have on Hayley for the rest of her life the consultant said this would be a better option. Of course, like I said above..we have to wait to see if the London Consultant agrees.

I just want the best for her, as we all do for our loved ones.

You are all wonderful people here..so glad I came across this site!

Mandy --

Your link doesn't work because of the final period. The correct link is www.kickingcancersarse.blogspot.com

Your daughter has such a strong and positive attitude -- it's hard to believe she is only 18. Those are great pictures of the two of you. And I do hope she can get new Spice Girls tickets!

All the best,
Leslie

Mandy,

The people here are the best support group you could find! Lots of information here to help you along your journey.

Please keep us posted! You are in my prayers.

hi mandy,

im sorry to hear this its so sad at a young young age, but yous seem to be a real strong team.

i visited the blog and she seems so positive and focused, and ive no doubt she is going to boot arse !!!

tell her i am asking for her and thinking of yous both.

derek

hi mandy,

im sorry to hear this its so sad at a young young age, but yous seem to be a real strong team.

i visited the blog and she seems so positive and focused, and ive no doubt she is going to boot arse !!!

tell her i am asking for her and thinking of yous both.

derek

Update on todays meeting at Charing Cross Hospital, London.

After a 3 hr drive we eventually arrived at the hospital and didn't have long to be seen by Mr Sandu.

Hayley was told that they had looked at her CAT scan & MRI scan and that she wouldn't be having the laser surgery as the tumor is bigger than they originally thought. He asked her if she knew anything about grading the tumour (which she didn't but I had read up on this beforehand) - he said her tumor was a grade 3, possible 4. He explained that the tumor was attached to some cartlidge (sp)(which apparently, it had grown OUT from and not INTO).

So, my brave, positive daughter took all this news calmly and asked questions - like, what treatment would she be having - and she was told that she would be getting radiation.

He also arranged for an ultra sound today, which she had this afternoon - and that was to see if the cancer was attached to anything else. Hayley was told that the tumor was on the left side of the voice box and curled round some cartlidge (sp), like I mentioned above.

So, it looks like we may have to wait another 3 weeks until treatment starts - i'm worried about her having to wait that long. I asked if the cancer would grow more in that time, and MR Sandu said that waiting that amount of time should't make a difference. They said that before and to me the cancer has grown more.

I have seen such strength in my daughter whilst she is going through this - she even joked at one part when radiation was talked about, and she said at least she wouldn't have to go through getting a moustache and beard when she reaches her thirties (ladies, you understand this lol)

So, that's out update. I'm learning something new every day - and learning more from my daughter too.

I just wish the treatment started tomorrow.

Thank you Derek & Goose for your prayers and thoughts. :-)

Dearest Mum: Your post has brought me to tears; as a mother myself, I cannot possibly imagine what you must be going through.

Our prayers are being offered on yours and Hayley's behalf. I know that HE hears our cries.

May the Lord strengthen your family as you begin your journey. Know that all of us are behind you!

Lois & Buzz in NC

Mandy,

Have been wondering how you got on today, you must be pretty shell-shocked.

But stay positive--my friend's daughter was diagnosed with Stage 4 Breast Cancer at age 17 and given 2 years maximum to live--she's now 33 and planning on having babies!!
Would it be any help if I got her email address for you?

Have they said why it will be 3 weeks before treatment begins?? Even for England, that sounds like a long time if she doesn't have to heal from surgery--and takes us very close to Christmas!

I've read Hayley's Blog, what a girl! and although I've now lost the details, I was once in contact with a young woman who had Non-Hodgkins Lymphoma and set up her own website called something like TheFurryMonkey.

I have you both in my thoughts,

Brenda

I am going to try and start a blog here at OCF..just to log everything and keep people informed.

I want to write so much but not overload this thread.

We found out more today and my heart is breaking for my daughter Hayley.

The new options are now chemo and radiaton AND/OR removal of voice box and nodes. Hayley has opted for chemo and radiation first. We see the radiation man tomorrow at 9am. It will still be over a week or more before treatment starts but will know definate tomorrow.

I will be back to leave blog/journal details if anyone would like to follow.

Many, many thanks for all your comments - it means alot.

Mandy

dear haley i wish you all the best you are strong you will do ok i had throat cancer to it was on my right vocal cord
please keep is posted

Hayley and Mandy: DO keep us posted as to your treatment plan. Know that we really are praying for you both as well as your family.

Lois & Buzz in NC

I've read your daughter's blog and she seems like such a lovely person. You've done a good job raising her. Hang in there.

You said you want to write but not overload this thread -- write to me if you want. I'm not the best about responding but I'll read every word. And frankly, I'm hoping to learn something from you. Since my son was diagnosed I've had a hard time communicating about it. Maybe we can help each other?

darcy (Matt's Mom)

Mandy, I have read some of Hayley's blog, WOW, what an incredibly strong, young woman, I know you are very proud of her...she is beautiful(and her dog is very cute}I will be praying for her......she is so strong, she makes me feel like such a wimp! Love, Carol

p.s. I left her a message I hope she gets it. she is such an inspiration!

Dear Mandy,

I've tried several times to respond to your post, and I'm at a stand-still. The reality of how this disease has touched your daughter has floored me.

To deal with a spouse (husband, wife, brother, sister,....etc.) is one thing..............a child, unbelievable.

I've read Hayley's blog. She is such a beautiful, articulate young woman.

To deal with this, your child !!!!!!!!! My heart is with you.

Love,
Mandi

Dear Mandy - You have a beautiful, amazing and courageous daughter! My heart goes out to you and just aches at what you are having to go thru. When my son was diagnosed with SCC I felt my heart breaking but somehow we made it through the dark days and a large part of the strength I felt came from right here on this site with the loving wisdom and compassion I found. Stay close to OCF and do email me if you need to talk. (you, too, Darcy) - I'm sure we can help each other.

Paul's Mom

Mandy:

I just posted on Hayley's blog about her hair. As a young girl, she must be so upset. I have an 18 year old son. As a mother, you must be devastated. You have found a wonderful site where you can ask questions from people who have gone thru this terrible disease and beat it.

I went thru oral cancer with cisplatin and 7 wks of radiation. I was told I would lose all my hair. I cut my long hair short to save myself the agony of losing it in long pieces. I did not lose my hair. I still have a full head of hair except a tiny bit on the back of my neck. This was lost from the radiation, not the chemo. It is completely unnoticeable.

Best of luck to you and your brave daughter. You are in my prayers.

Thank you all for your lovely comments..it means a lot.

Hayley is couragous..she is coping really well. Better than her mum is anyway. I just feel so out of control, helpless...

Anyway, for those of you lovely people that haven't read Hayley's blog..she now has a treatment plan starting next Monday (17th Dec):
1st cycle: 5 days of chemotherapy -Taxodene, Cisplation & 5FU. Then a three week break before starting cycle 2 (same as cycle 1), then 4-5 weeks later, radiotherapy will start for 7 weeks and one day every week, she will be having Cisplatin at the same time.

Hayley's onclogist has told her that no expense is being spared! and he also said that this treatment has a 90% sucees rate. Of course, I want to build my hopes up, but at the same time will take one day at a time.

I just want to add that you are all in my thoughts, and I am so glad that this place exists..I didn't think I would need it. I need it very much.

Hugs for everyone,

Mandy x

Hi all,

Just a quick update on Hayley:

She is currently having her 2nd cycle of chemo - the oncologist reduced it by 25% as she was so poorly with the side effects and spent all of christmas week - (went in on christmas day)up until new years eve - in hospital. She started this 2nd cycle yesterday - had a reaction straight away but it was sorted out and things seem to be moving a long smoother today.

She has a CT scan booked for the 17th January to see if the tumor is any different - her oncologist says things are on the up because of other signs (i.e her voice coming back)- we bumped in to him this morning and he said he may get her in earlier than the 17th because he wants to see (depending on the tumor response to chemo) if a 3rd cycle of chemo will take place. At the moment she is having 2 cycles of chemo - then 5- 6 week break and then 7 weeks of radiation plus chemo once a week.

She remains so very positive - even having gone through what she did over christmas - she says "other's have it worse and as longs as 'it's doing its thing' then it's worth going through all this treatment"

She is an inspiration. She is my strength too.

I haven't been about much - funny how things change so much when you are hit with something like this - I do get to read on the OCF from time to time - and which I shall continue to do so.

The days aren't always dark now - some days there is sunshine and laughter, so we walk each day and deal with whatever is thrown at us. Hayley has taught me that. No point in worrying about tomorrow for we have no control - she says just deal with the day we are in.

Thoughts and wishes coming your way.

Happy New Year to you and yours,

Mandy :-)

Your daughter sure is a strong young lady and it seems her mom is strong too. I wish you the best and hope this round of chemo will fix her problems for good. You are in my prayers The best to you both.

Mandy,

How nice of you to provide an update on Hayley. It sounds like you raised one amazing kid. I check out her blog periodically and while I was saddened to hear how hard the chemo was on her, I find her attitude to be very inspirational. I think of the two of you often. You two seem like an amazing team!

Hi, Mandy,

I am so sorry that Hayley had such a difficult time with her first round of chemo. My husband had a similar protocol with induction chemo (2 rounds) followed by chemo/radiation combined and he reacted to the first round but then got different meds to help with pain and nausea and did better the second round. He got through the chemo/radition fairly well (not that it was easy but we managed) until the last few weeks and then for a month afterwards but now it is almost 3 months post-treatment and he is really so much like himself again and eating, etc. I found it very difficult to get through some days but I literally told myself to take one day at a time, to put one foot before the other, to not think too much about the outcome but to focus on the process, and to grab moments of happiness whenever I could. I kept reminding myself of what a short time this was in terms of our lives and how much we had to gain if I could help him as his caregiver as he ended up depending on me so much. It takes so much strength for everyone to get through this so I am hoping that you feel the care and strength I am sending to you and Hayley.

Hugs- Sophie

Mandy:

Thanks for the update on Hayley. Its great to hear she is making progress with her voice returning. Im sorry to hear the chemo is so hard on her. You both are in my prayers.

The Tumor has shrunk!!!

I took Hayley to meet with her Oncologist and consultant this morning. She had the camera put down her throat - heard lots of pleasing noises in the room whilst this was happening. I wasn't sure what I was looking for when I watched the procedure on the screen - we were also shown a photo taken when the tumor was originally found in October 07 and compared it with todays photo..and I couldn't see anything!! I asked Hayley's oncologist if it was pleasing result..his reply " Oh yes, yes, very pleasing"

I know she still has a way to go - and she remains so positive. She is a week out of her 2nd chemo cycle and thankfully the reduction in the amount given (25%) did make a difference. She was more tired than anything else and no big time side effects like last time :-)

So, the plan is now, a 3rd cycle of chemo which she starts on the 28th of this month. Then a 5-7 week break but radiation preperations going on in that time. Like i mentioned before in another post, she will have one day a week chemo whilst having radiotherapy. Her Oncologist has said that he wants her to have a PEG line put in. She wasn't too happy about that. He hasn't sat down with her and spoke about the radiotherapy yet...he will be doing that just after she finishes chemo. Of course, i have read on here about the effects of radiation and having a PEG tube..and it makes me feel that the worst is to come? She is maintaining her weight, well, she has lost 6lbs since last October - but she still is a healthy weight. I am worrying about how much she will lose once radiotherapy starts.

I'm kind of glad knowing what I learn from on here but at the same time...hmmm..worried also.

So as much as I am happy with today's news...I am slightly anxious of what is to come. Chemo was hard to watch from a mother's point of view - I know it wasn't me having it - I also remain positive in my thoughts of Hayley beating this ..it's just the unknown again..meaning the radiotherapy.

Anyway, just wanted to keep you in the picture.

Thinking of you all,

Mandy

Mandy,

This is really encouraging news. May Haley have a COMPLETE recovery.

Malka

Mandy,

It's so nice of you to take the time to provide an update on Haley.
I think about the two of you often. I was uplifted to read about the positive results so far!

What did they say was the cause of her cancer and what was the name given to her cancer and was it Staged?

Oh, almost forgot....Great News

Mandy
I'm so pleased for you both, I know it is your daughter's illness but I have a feeling you are sharing every step she takes.
So although there is a way to go at least the first part of the journey has a good result
Sunshine.. love and hugs
Helen

Haley and Mandi,, you are an ispiration to all of us. I thought about what you were going thru yesterday when they removed all my teeth, for the upcoming Rad Seed Implants. I hope I do as good as you are..

I was so pleased to see on her blog that she was able to attend the Spice Girls concert!

cheers,
Leslie

Mandy

Thanks for the update. From time to time I check Hayleys blog. Its wonderful news the tumor has shrunk. Hang in there!

Mandy,

I have been following this thread and Hayley's blog. I am so glad to hear the good news! She is such a brave young lady, and you are a wonderful Mother! My Dad has been going through the same thing. He is having radiation, taking chemo pills, and will begin chemo injections on Tuesday, and he will have a PEG tube put in surgically next week. Hang in there, if you need to chat, please feel free to contact me.

I have been following you in the shadow. Your daughter is just wonderful. What a great attitude. She WILL do well.....Please!
GET THE PEG!!!! It can help so much in the long run. My daughter hated the thought, but it became a very good friend to her. Praying for you all.....

What great news,and thank god she is so young and strong to take such a punishing regime.

a mothers love to you..

Liz

I read through your daughter's blog---her positive attitude is nothing short of amazing. God bless her!

Thank you all for your lovely comments. The days can be hard sometimes, but coming here and reading your kind words, takes the edge of those days. :-)

Hayley is doing ok..she is having some problems with her PICC line, has pain in her arm, and sometimes feels a little pain where the line is over her chest. We spent a good few days back and forth to the hospital last week and Monday of this week, with PICC line probs. Hayley has been taken off the warfarin and now she is to inject herself daily with CLEXANE enoxaparin. We are now waiting for her to have a doplar (sp) scan as she has found a pea size lump in her left arm pit. She has been checked out and has been told that it isn't in the node area and does not feel like anything untoward. They say it COULD be a blood clot (?) hence, them giving her the injections now. It's still a worry though. I have just come off the phone from the hospital as I rang to find out if they had made any arrangement for the scan. I'm now waiting on them to call back to let me know what's going on.

Arrggghhhh!

oh, and we had a call yesterday to say that Hayley is scheduled to have the PEG tube in on 25th Feb 08. She isn't too happy about that but agreed!

Please continue thoughts for my girl..

I too, continue thoughts of you all here on the site.

Mandy.

Im sorry to hear Hayley is having a rough time with the picc line. I will keep both of you are in my thoughts and prayers.

UPDATE:

An appt for tomorrow at midday has been made for Hayley to go for an ultrasound then back to see Doc at Chemo unit to go through the results.

<fingers crossed>

Mandy :-)

Mandy,
I've been thinking about you both. I tried sending her messages on her site but for whatever reason they didn't go through.
So happy to read all is going well. What a great spirit your girl has!
Donna

Give Hayley my best ans she is in my prayers, What a tough kid!!!

Hope all goes okay for Hayley at her appointments, thinking of you,

Brenda

Thinking about you and Hayley and waiting for an update.

Hi everyone!

Update on Hayley - the ultrasound went well - and nothing was found! Hayley told me this morning that she felt for the lump and it had gone. Docs say couldn't really say for definate what it was but she is to carry on with the anti biotics and the CLEXANE injections. We are back at the hospital again tomorrow for PICC line flush and bloods to be done.

Hayley feels fine in herself, she is eating really well and maintaining weight - the only time she doesn't eat much is when she is going through chemo.

Her 3rd cycle of chemo starts Monday - till then, she has a busy schedule - tomorrow she is meeting up with another journalist from the local newspaper (4th article) and then on Saturday we have been invited to our local radio station to talk about her blog (www.kickingcancersarse.blogspot.com) and her cancer journey she is on right now - plus the fundraising occassion we are putting on (15th March 08) - to raise funds for the Chemo unit she attends. We want to raise awareness in the younsters that oral cancer is happening NOT just in the upper age ranges (trying to be polite here ) ;-)

My hubby and I are in the process of putting a website together for the fundraising event, for people to follow etc. Also, wonderful people have donated and have asked to be informed of the event so we thought it would be a good way for them to follow what's going on.

I hope it's ok to share this with you - I only really bacame aware of oral cancer because of my own daughter being diagnosed by it..and I so wished i'd of known symptons sooner so that we could of taken her to the doctor sooner, and it wouldn't have been advanced.

..it breaks my heart knowing that this is happening to my daughter, to all of you, and will be happening to others still. Evil disease - I can't do much but if I can help by making people aware then I will do what I can.

Smiles and thoughts coming your way,

Mandy :-)

Mandy:

You and Hayley are such and inspiration! Its great to hear Hayley is doing so well. I wish you the best of luck with the fundraising. Keep the updates coming.