Hi There,

My name is Minh, i'm 35yr old female from Perth Australia. I have just finished 3 rounds of cisplatin and 34 rounds of IMRT. At the begining and during treatment i was doing so well but now that everything is finished - i feel like i'm falling apart. Everything that seems different makes me panic and causes me to break down in tears. Its only been three weeks since treatment finished and i dont know whether i'm impatient or not.

There are two things that really worry me at the moment. The first one being a sore in my mouth that is underneath my tongue (on the other side of where the found the cancer) doesnt seem to be getting better when all the sores/ulcers are healing pretty well. The second thing is that i'm getting a persistent cough every nite that is stopping me from sleeping. Codeine Linctus helps but i'm worried that this is a sign of cancer spreading to the back of my throat. Has anyone else experience this as part of the healing process? Please help me, i'm struggling with these issues. I dont see my ENT doc for another two months and dont know who else to ask. Thank you.

I don't think it's at all unusual to feel like you are "falling apart" after the treatment has stopped. Your body and mind are just exhausted, you don't feel that you are actively fighting the cancer and you see your Drs less so you can't express your fears as much.
If you are really worried about something, you should call your Dr before your appt and express your concerns. If your anxiety stays elevated, you should also consider talking to someone.
But keep in mind, this is some experience you have just been through and being scared and emotional is so understandable.
My husband also developed a cough. It was part seasonal allergies and part of that thick mucous stuff. He found mucinex helped. Maybe you have some version of something like that that you can try.

Hi Susan,

Just knowing that someone read my post made me so glad that i cried!!! I'm so emotional these days. Thank you for response, it has eased my mind a bit. You are probably right since we are in spring and there is a lot pollens in the air. I will look into mucinex. Thanks again.

Hi Minh
You are so normal!
My Alex was almost exactly 3 weeks out of treatment when he started getting frustrated with what he sees as a lack of progress. He was stuggling with fatigue and bored with being home, but equally scared of going back to work. He was frustrated with being unable to eat and had nothing to break up his day and couldn't concentrate to do anything anyway. He was worrying over a litany of everyday things that we have not even considered for the last 6 months as we have literally staggered from day to day without consideration for next weekend, let alone next week! All normal reactions to coming out the other side of a life changing event.

Fear the cancer is creeping up on us? Absolutely. For Alex, the first ulcer to appear was the last ulcer to heal, and yes the question about whether or not it was something sinister crept into both of our minds even though we knew the likelihood was extremely remote.

Coughing? Hell yes, the second he lay down in bed. Gut wrenching stuff that made me think he was about to throw up. And by the way he can't sleep more than a couple of hours at a time either and ends up on the lounge at 3am = also normal.

Just because you don't have an appointment with your ENT or oncologist doesn't mean you can't make one for yourself. If you had a treatment co-ordinator get in touch with them and ask for advice, if not, call the radiation department and talk to anyone you remember as being kind or useful or might know something to help you. Ask your social worker for advice about seeing a counsellor - they won't be able to tell you if your cancer is coming back but they will reassure you that what you are feeling is absolutely normal and to be expected.

We are in Sydney and we are here to help.

You WILL feel better and some days you will even feel happy. You are very young and are likely to bounce back a lot faster than any of us "old farts".

Good luck and we will keep an eye on you if you keep posting

Karen

Thank you so much for your response Karen! I feel so lucky to have found this site and to have the supposrt of people like you. Like many others, i dont know where i would be if OCF wasnt here for me.

I have been thinking about a counselling this week because i feel that physically i'm getting better but mentally i'm sliding backwards. I have been feeling really out of touch with reality - i'm here but i'm not really. I have always been a very happy and upbeat person but just in the last two weeks i have become almost depressed. I feel like only half of me is present and the other half has disappeared somewhere. Even with my lovely husband and beautiful two yr old daughter - i dont feel like its 100% of me that is with them and i dont know why i feel this way. Its not like me to be so emotional and negative, hence i feel even less me. Why cant i just feel like "normal" me? Or is this the "normal" me now. Even as i'm typing this, i'm bawling my eyes out!

Normal, normal and did I mention NORMAL!

The few weeks post Tx are usually the worse for everyone and the mental part can creep up on us as we are no longer seeing our trusted docs every day. As time passes you will come to grips with who you are post Tx and the longer out you go the closer to your pre Tx normal you will get to. Just give it time. Most of us go thru a 2 year physical recovery and the mental part can take years longer. Even 4 years out getting a sore throat takes me to bad places.

Hi Minh,
Just wanted to send a welcome to OCF from another Aussie.
My treatment was different to yours so there is not much I can add however you have already had some good advice here.
I do know from a few years here that you are going through normal emotions at this post treatment time.
When you get a chance just add a signature. My Stuff tab at the top, Profile and scroll to the bottom to add the signature.
Try to get that earlier ENT appointment to address your issues..maybe your GP can help to get it brought forward.
Gabriele

Thank you David. You almost make me feel normal!!!hehheheheh. I guess for me "cancer" has finally sunk in. When i was first diagnosed in March 10,it was ony the size of a pea and my ENT said "nothing to worry about, we'll cut it out and problem solved". I didnt even think about it again, even after they told me the margins werent clear, i just thought go back in and cut it again - no problems. While i'm waiting to get back into hospital, two more lumps appear!! ENT surgeon assured me its just the stitches making my tongue imflamed. Due to a bad cold, surgery was delayed, and it was probably 6 six after the first op that i went it to get the margins cleared, ,meanwhile they looked at the two new lumps and decided that they were cancerous!!! My ENT then decided since the cancer was so aggressive, i better have radiation and it was urgent since the reappeared so quickly. I went through everything - recovering from having a flap attatched, teeth pulled out, then radaiation and chemo so quickly that i never got the chance to worry about cancer. I guess it was ignorance and stupidity as well, i thought that the less i know the less scared i would be of all the things i was going through. Its only been just very recently that i realised how dangerous oral cancer can be and how easy you could die from it!! I have been on panic mode ever since!!! Its finally dawned on me that its posssible that i could die from it!!

While the OCF website has provided me with so much information and knowledge on oral cancer, it has also inspired me with all the survivor stories. Meanwhile it has also has scared me to DEATH that recoccurences are so common!!! I often get off the site a bit shaky because it seems that almost everyone who post on hear have a very long battle with oral cancer!!! I now worry constantly that my battle is not over yet and worry that i wont have the strength to go through anymore treatment.

Minh

You will be surprised to discover just how much strength you have. Again, it's important to remember that all of the internet boards, even including OCF, have a predominance of people who had complications or tough times. Many many people only go through this once. No need to be scared.
Life goes on and Cancer does not mean an end to laughter, love, or adventure. BTW, I coughed up a storm at first also. Very normal.
charm

Thank you charm. That is exactly what i'm scared of "the end of laughter, love and adventure" bacause my life before cancer was full of that and now it seems so lacking of it. But you have reassured me. Thank you, your support means so much to me. I guess i just need to be patient and let the healing begin - physically and mentally.

A nagging cough could be a sign of pneumonia. Tim was just diagnosed with aspiration pneumonia. He had a nagging cough for weeks that he thought was in his throat. It wasn�t all that bad, but it kept him up at night. He finally got tired of the cough and saw the doctor. Apparently, it�s very common in people with swallowing problems. Tim finished his radiation and chemo treatments at the end of July.

Hang in there. There is a lot of laughter, love and adventure with cancer if you just look for it. They may be hiding right now, but they are there waiting for you.

Thanx Susan,

I'm hanging in there. Some days are easier than others. I just want a really good day with my baby and husband.

Minh