Tongue cancer - mine

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As Autistics we all want definitive answers. Unfortunately I will not know many, if not most of the answers until they do the surgery and see if or how much it spread. I will get the answers to you as fast as possible.

In my family it is the NT side of the family that has had the cancer. My mom had breast cancer in her 30's back in the 1970's when the treatment were radical mastectomy only. She is still very much alive. My Uncle/her brother was killed by colon cancer at age 57 which my age now. My mom's mom did have lung cancer and was a smoker.


Doctor specifically said nothing I did caused it.

It may be helpful to you APOM to think of this not as a disease but a process - just as grief is a process, and like grief, it can teach us things we could have learned in no other ways. I can tell you that it going through will be a process of transformation affecting all levels of your being - spiritual, psychological, emotional and physical. It may sound very strange of me to say, but there are gifts ahead. You will never look at life in the same way in the years to come; you may well become a stronger, wiser, more complete person. Cancer is the great transformer.

When we first learn that we have cancer, we tremble with fear, and all we hear is the clock ticking - for us.. that is a terrible moment, the start of the process; we feel alone, bewildered, frightened, uncertain, vulnerable and our sense of safety and trust in life is badly bruised. We may feel betrayed, angry. This soon passes. I can promise you that life then becomes so busy with appointments, treatment, that we are distracted to a certain extent just by the medical process. You will be busy.

But cancer is also a spiritual journey. You come to realise that the clock was always ticking anyway - discovering cancer is not after all the clock starting to tick but an alarm call in your soul, awakening you to the fuller possibilities in your self and for your life.

This may sound, at this point, like sugarcoating to you, but it is not. Cancer taught me a great deal about myself that was meaningful for the rest of my life. It taught me again that I can survive outrageous twists of fate, and become more than I was before and that there are some terrific people out there - a deep friendship bond developed completely unexpectedly between me and one of the surgeons; she valued and cared for me in a very rare way, (she treated me rather than a disease) forming a bond that deeply affected my heart and soul, and opened up a closed all-too-private space in both; how unexpected that was. People who had loved me before loved me more gently and thoughtfully afterwards, and that too transformed me: I learned to love myself more gently and thoughtfully too, and then I learned to love others more gently and thoughtfully.
What, other than cancer, would have brought me these surprising gifts that have so enriched my life?

Just now, though, it may be that you will find you are wavering between short cycles of fear and hope, swinging from one state to the other back and forth. This is your time of uncertainty - and in some ways I think it is the hardest. Good support at this stage was very meaningful to me. Most people were at a loss for words, they really did not know what to say, so said very little or "I'm sorry". They couldn't handle that conversation (perhaps for their own fears) and there were many embarrassed silences from them. Perhaps they were also in some cases feeling irrational guilt about minor failures of friendship in the past - but we are all guilty of this at some time. So it is a process for them too.

One thing a cancer survivor told me right at the beginning (she survived throat cancer) will stay with me forever and was true: "You will find out who your real friends are, and they will perhaps not always be the ones that you think; you will be in for some surprises, I can tell you.." OMG how true that was...but this too was good; it was a very reliable sorting process for the recovery stage. At the end of the cancer process, I knew who I could always trust, and who to let go, so that my life had more genuineness and wholeness.

If someone had said to me at the beginning of my cancer journeys "you will gain immensely from this" I would probably have thought they were 1) mad 2)off the planet 3) stupid and 4) insensitive and 5) didn't have an f-ng clue! I may have laughed (sourly) in their face and said "you do it instead then, I'm happy to give it to you instead".

Cancer teaches you to live with uncertainty. Cancer teaches you that in life - whether you are well or not - that life does not come with guarantees. It never did. It never will. And that ability you gain - to live with uncertainty, to ride out the rough and the smooth - to see life in its wholeness - is priceless.

Just now, this is in the distant future for you. Possibly right now none of what I have written seems to make any sense at all. I will tell you more about my ongoing journey (and current relationship with immune/cancer issues) as time goes on, if it is at all helpful to you; for now, strive to get the rest you need. Emotionally this is a big hit and can make you feel a tiredness that can be very challenging. You are not alone. I think now that we are never truly alone. There is always someone thinking of us, remembering us, loving us, there for us somewhere - in the past, present and future. Only connect..

I am sorry you have had this terrible shock, I am sad that you are suffering right now; there is an adventure ahead, a process, another chapter in your life. And you too may be telling me one day in the future that life after cancer was never the same - but it was better, far better, than you ever imagined. This is what I shall wish and hope for you AsPartOfMe.

I am very sorry, that you have to go through this and I absolutely hope for the best.
I do urge you to read about Cannabis oil, if you haven´t done so already. It seems to be able to slow down and even diminish cancer.
The best of luck.

I hope you have a good recovery after this surgery that sounds quite radical and complicated.
Please post your progress if possible.

It is so complicated with so many possible outcomes I overwhelmed, more numbed and awed then frightened ATM (I have a feeling this will change by Tuesday). There is a whole surreal feel about it, it is just so weird. Right now I trying to follow the "chunking" method and concentrate on surviving the damm operation and all that anesthesia

Thanks again everybody

Numb is fine. Numb may be exactly where you are meant to and need to be right now. Your mind is protecting you from the effects of shock, and for now, numb + no new stress + get whatever rest your body and mind needs. In fact for this stage of the process, you are doing extraordinarily well APOM. Well done you. This augurs extremely well for the rest of the journey. You have a lot of spiritual strength within, obviously.

I think so.
I think if I had a stroke and cancer in the same year but before I knew I was autistic I would be a lot worse off. The specific knowledge about shutdowns and that change and uncertainty is especially difficult for our type is ( I was going to write "comforting" but that is not quite right)

Chunking seems like a good method to use in this situation.
After surgery, there will probably be all kinds of crappy feelings you never imagined before, so chunking should help get you from hour to hour as you heal.
Before surgery, maybe you can make some simple communication plan with the nurses who will be taking care of you, like this hand signal means this need, and this other one means this other need. It seems like talking may not be possible for awhile, and nurses may not be good at reading autistic people, like some neurotypical people have told me that they can't read autistic people at all.
I think numb is a good feeling to have in this situation, it is better than more fearful alternatives.

Look up, and try eating Apricot Kernels, it cannot hurt to try, and I have read of people with terminal cancer who tried these and the cancer just disappeared.

I have been practicing with a text to speech IPAD app. I know there are devices non-verbal autistics use. Since they often do this type of operation they might have a system set up.

My heart goes out to you. I hope all goes well with surgery and follow up treatments, and you make a full recovery. It sounds like a lot hit you all at once this year. You are a strong person, but remember it's okay if you aren't strong all the time when you are going through something like this. I wish I could do something to help. Do you have someone who can stay with you in the hospital? If I lived anywhere near there I'd come by to sit with you, if you wanted. I will be thinking of you for sure. Please keep us updated when you can, but no pressure to do that.

I understand your concerns about the anesthesia. Have you talked to them about it?

I will have family around but as an aspie-autistic I do retire a lot of alone time in a situation like this.

I hope that all of your treatments go well and that you recover quickly and fully.

How is everything going?

ASPartOfMe, I hope you are doing well. I've been thinking about you a lot and wondering how you are doing.

Progressing as expected. Two days ago I was moved from the hospital to a rehabilitation facility for physical, occupational, and eventually speech therapy. How much speaking, eating ability taste etc I will get back is unknown but it is expected I will get some back. For now I am a non-verbal autistic. I am at the beginning of a long hard slog.