Don't know what to do

New Contributor

Don't know what to do

I have stage 3 mouth cancer for sure and need tests to see if it's spread to lymph nodes ect. every day I try to forget , but it's like a nightmare I can't wake up from or actually get any help with. I have a phobia of needles and hospitals which Is making it extremely difficult to face it, I just want it to be over, looking for support because I can't get it from my family, they just try to run my life w.o. my say, I don't want them to make decisions for me when they need to be made by myself, but I'm at a loss on how to approach it, so I decided to look for support else where. I will check for replies every few days

Regular Contributor

Re: Don't know what to do

Hi, so sorry about your diagnosis.  I know the shock and anxiety when you first get the news of cancer. Maybe you can ring the cancer council and get support from them. They are really helpful and kind. Do you have friends who will support you if your family is not helping you with what you need? Will keep you in my thoughts and prayers 🙏💕 Linda G

New Contributor

Re: Don't know what to do

Thanks for the support and no, I don't have friends I can count on, I told them, but they just don't seem to get it, one of them tried to move out with me ... I'm tired of waking up with my heart pounding with " is this the day"  going through my mind, I never thought it would be so emotionally exhausting. 

Super Contributor

Re: Don't know what to do

Hi @Deadalready88 ,

I'm very sorry to hear about your stage 3 mouth cancer.

I know that I'm a bit late in responding to you, but I just wanted to check in with you and see how you are .

How is your treatment going?

 I know it can be tough when the people around just don't know how to respond when they find out have cancer. Unfortunately is quite common.

Anyway, hope to hear from you soon.

Regular Contributor

Re: Don't know what to do



Sorry I just can't use your user name but absolutely understand why you would use it.  I've had a pretty traumatic life right from the beginning.  Then a few medical traumas with lots of pain and ongoing pain for a long time afterwards.  I swore I would never go through anything like that again and would request euthanasia. Here I am again facing my worst nightmare of chemotherapy. 


One of the things I have used throughout my life is perfection and control.  Any kind of medical thing I go straight to high stress mode.  May sound weird but I cannot be around normal people when I am in this mode. If my husband is driving me, he's not allowed to speak to me at all, go too slow or make me feel as if we are going to be late.  I never let him come in with me or even sit with me, nor anyone else.  I have always relied on myself as the only way to protect myself.  I am still doing it now.  


You have to find a way to get through this.  One thing that helped me was my daughter said to me - remember - it will be over by lunchtime or dinner.  That really helped me to tone down the fear factor.  My first job was at the Peter MacCalllum Clinic and throughout my life I've mainly worked in hospitals so I know the language.  First thing you need to do is research even though you may fear what you find out it is better to go in and understand the language and what all these things mean.  Knowledge is power and it is a really good way to inform yourself and also protect yourself.  When you're researching- write down things you need to remember and know the meaning of the word.  I have always found it hard to ask for help or accept help.  Take notes even when in the doctor's consulting room.  Main points.  Things you must remember.  If you are going to do this on your own it will not be easy, but it can be done.


Also, you may find some good news in your research.  Even a grain of it.  The hardest part is the waiting until there is a plan and a schedule.  At least then you will know what is coming and prepare yourself.  Mouth surgery and possibly radiation is a hard journey so think carefully about this.  Is there one person in your family who you could talk to on your own and explain why and how you're feeling about people trying to run your life?   It's not going to be easy to find that person as they will need a great deal of time to drive, sit with you wait for you and drive you home again.  I think it's best not to drive yourself as your brain is too distracted, your stress level are too high and it's just safer.   Radiation is for a certain period of time - every single day. Who will help you when you get home and make you nourishing soft food that you can eat?  Again, think this over.  Even I, who wanted to do it all on my own, had to rely on help when i was home again.


Try to stay hopeful in these darkest of days.  Hope to get the very best experts in the field to be on your team and when you feel you can trust them, put yourself in their hands.  There is nothing you can do right now but be guided by them.  Medicine has come a very long way and people are having a better quality of life afterwards, sometimes a cure or long time remissions.  The more positive you are the more T-cells your body will create to fight the cancer.  


Just don't give up before you start.  Ring someone at the Cancer Council as they are very good and kind and I really think you will need some support.  Don't give up on your family.  It was probably a big shock to them as well.  They may need time to absorb the news.  I hope so much for you that your treatment is the best possible and I wish you well on this hard but not insurmountable journey ahead of you.  





Re: Don't know what to do

Hi Deadalready88

my thoughts with you, and I feel with you, friends and family will never really understand what we are going through, no matter what they say, they are are all doing there best and I do acknowledge that.

I had decided I would go through major surgery for my bladder and rare ureter cancer, and after I got the details and cost of my surgery on Friday, all has changed. My body is going to be mutilated as far as I’m concerned and I will not be going through this, so have decided I will not be having surgery. Have decided to go with a third opinion and my GP is now doing a report for referral to public system at Peter MacCallum, as I’m not sick have little pain I’m simply going to try to go on with life, I have a stent in my ureter which I know will have to be changed again in a matter of a month or two, I feel I have been very let down and I’m at a stage of no more, so will wait to hear from public system as I do know the major system with what has been put in writing will never happen 

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