Hello again - another one to think about....


We Are All Connected

Articles on the art of communication, the art of appreciation, and the art of forgiveness.

If this is a world of isolated objects banging around and into each other, with little or no appreciation of the underlying unity, what else is there but "number one?" I am the only one I have to be concerned with. Why? Because if, in my experience, I rarely if ever feel a meaningful connection with anyone else, a connection that takes me beyond who and what I am into the experiential world of another, then, psychologically, as well as for all practical purposes, no one else exists but me.

If we assume we are irremediably distant from one another, eternally alone in the cosmos, than wholeness can only have to do with what goes on in each solitary individual. I can only be whole within myself. And that takes us right back to the "number one" stance.

. . . However, as a species, we have had to evolve to a point where we could not only recognize the possibility [of the wholeness of all beings] intellectually, but feel that connection in the very daily and mundane moments of our lives.

Love, which is about connectedness, has been pushing to the surface, slowly transforming our capacity to see — so that we can see that the love we so dearly desire is, indeed, available.


Love you all,
Ananth

Stick with flirting with the ladies Ananth, why change the habit of a lifetime . Hagg.

Dear Hagg,
I thought I would try a new way of flirting by being a bit on the "poor chap" or serious type. However, as you pointed out I am not cut out for that - I will just stick to flirting as you are right -"why change a habit of a life time" - and especially if has worked for me all along.

So watch out all my pretty ones, my gorgeous pretty ones - I am back to being the romantic and will remain so. Its easier then being serious all the time!!!!

Lots of love Hagg - and my love goes out to all the lovely women, alongwith kisses and lots of warm hugs (all big bear hugs),
Ananth

That's more like it Ananth.

Hi all

Bringing this thread back to Patricia..... (not that I didn't enjoy your philosophising, Ananth!).

Patricia - I understand and completely sympathise with what you are saying about being worried about not having had a neck dissection. I was very concerned that I should have one - either so I would know with certainty what I had to face or so I could feel the relief that the cancer had not spread to my lymph nodes. It may be, however, that statistics show that with a tumour like yours it is extremely unlikely that there would be a spread to the lymph nodes. Have you discussed this with your surgeon?

Hope you are doing all right. How are you feeling now?

Lots of love
Gwyn

Hi Gwyn

I'm feelin ok and my tlaking is improving - the lisp is becoming slightly easier thank goodness. The first week I took some dry cleaning and as I was lisping badly I explained that I had had mouth surgery. She took the trousers and I said "when will they be ready?" - she looked up and said loudly and slowly "WEDNESDAY". At that point I really wasnt sure whether I wanted to giggle or poke her in the eye . In the end I decided that I didnt want to make a guest appearance on the front page of the local rag so just giggled quietly to myself! So Ananth you can see they took a chunk of my tongue but not my sense of humour.

Gwyn
Did your doctor suggest the neck dissection? Your reasons for having one are exactly how I feel. If I dont have one then I can only wait and it feels like you are waiting for it to happen and also by the time it is palpable it isn't small. If I do have one then either the nodes will be clear and I will feel better or the nodes will not be clear and I will have had treatment quicker than waiting for the nodes to be big enough to be palpable or visible on MRI.
I am going to discuss with the surgeon tomorrow - I think he is in the camp of statistics say that my size tumour and cell behaviour means risk of neck involvement is low - thing is I'm not a statistic or an experiment...

One other thing (sorry for the long post and probably in the wrong forum) who does everybody get their follow up from? I get seen by the surgeon although he meets weekly with the Mount Vernon team where he discusses his patients and they all ratify treatment protocol.
Just interested who others get seen by.

Love to all

Hi Patricialouise

I'm still self-conscious about the way I sound--especially when I have to repeat everything when I talk to patients who call in to the clinic where I work. My flap is three years old and I still notice the occasional lisp.

I'm followed by otolaryngologists at the University of Michigan.

Julia

Hi Julia

My friends say it is improving and it may be that I hear it mroe than they do. It feels worse when I get excited and talk quickly or at the end of the day when I am tired.
Do you think its the same for you - sounds worse to yourself than to others?

Love Patricia

hi patricia
sorry that you find yourself using this site,having said that ,you will get a lot of support from the members on here.i had base tongue cancer but no surgery i had chemo and radiotheraphy a year ago,i still cannot eat and have my feed through my peg.i would like to wish you well on your journey,its good that you are eating so therefore you wont lose too much weight.love shirl xxx

Hi Shirl,
My "peggy" wants to know if it can take your "pegsy" out on a date. I guess it would not be a bad idea as we are both in the same boat - no oral eating or drinking and have been a good friend of "Peggy" for the last eight years who in turn has taken excellent care of me so far.
Take care and if there is anyway I could help - do let me know.

Tons of love ( I normally do not kiss on the first date), hugs and some lovely cyber roses coming your way.
Ananth

Hi Patricia

My surgeon suggested I have a neck dissection but left it up to me to decide (though he said that if he was in my position he would have one). He said that up to 20% of people who have nothing to show on the MRI scan later show evidence of lymph node involvement. However this was when they thought that my tumour was over 2 cms (T2) and when it actually came to the op it turned out to be smaller than expected (T1), so if he had known the actual size, would he still have recommended the neck dissection - I don't know. My husband thought that the one in five chance of there being something there might be worth risking to save me having to go through such a big op, but I didn't.

Everybody says my speech is fine, now, though it sometimes feels to me that I am slurring or lisping and my husband will occasionally notice it when I am feeling tired. Strangely because my tongue is numb it feels as if I have a foreign body in my mouth, rather than a bit missing - do you feel this?

Currently I am being followed up every month by my surgeon.

Hope it goes well with your surgeon tomorrow.

Love
Gwyn xx

hi ananath
my pegsy would love a date with your peggy,as long as he's not a fast mover as she's a bit shy lol.cheap date no eating or drinking though.you sound like you are in a mischeivious mood ananath you little minx,kisses to you and thanks for the roses.love shirl xxx

Hi Gwyn

Thats interesting as I also dont really feel that any of the tongue is missing - it actually feels huge and cumbersome and why I cant "use" it properly.
I looked up the staging and you're right that 20% have occult nodes even if the MRI is clear and I think this is with any T at all. I agree with you on the node disssection and will see what the doc says tommorrow. Problem is I am starting a new job in 2 weeks and can't imagine what they will think if I have to be off work for surgery almost straight away! How long were you in hospital/off work?

With the talking I am a bit anxious as I am a contract negotiator and do most of my work on the phone so talking is important. I am "practicing" a much as I can. Did anybody ahve speech therapy and did it help?

Love to all

Patricia xx

Hi Patricia

I do feel harder to understand at the end of the day, and I find myself more prone to what I call tongue cramps (my flap feels kind of stiff and an odd sensation telescopes into my throat until I start choking; a good HARD cough usually makes it go away but leaves me tingling from my shoulders to my waist) when I talk really excitedly about something. (Ironically, the thing I talk most excitedly about is my adventure with tongue cancer and the Birth of Flappy.) My doctor said the problem was basically muscle strain, and equated it to the fatigue that marathon runners feel. My flap doesn't have the same support as my native tongue. Are you working with a speech therapist? They might be able to give you some exercises to help build up strength (you look RIDICULOUS doing them, so always do them at home). My doctor even offered to pierce my tongue to give me something to hold while I stretch my tongue.

It will take time. You're only a few months out. If you invest in a cheap little cassette recorder and talk into it periodically, you'll be surprised at the changes over time. Actually, that was one of the drills I was given, read out loud for 5 minutes at a time into a tape recorder. Above all, though, relax.

I can't recall--did you have a resection? If you did, that's always going to feel strange, and as nerves grow back in from the native tongue you'll probably notice even stranger sensations. From time to time, I get a "corduroy" sensation across the tip of my flap, and even now, if I touch the left side of my lower lip, I get a cool sensation that I call the York Peppermint Patty sensation. It's weird and it's all about nerves. I've also notice how different foods feel. I love spicy foods, and they seem to leave a bit of a tingle on my flap; it doesn't diminish the enjoyment at all, but adds a new dimension to the whole thing.

Sorry to prattle.

Julia

Hi Julia
No I didnt have a flap but do have the tingles. I had only a small part of the tongue removed for a small T1. The doctor suggested the speech therapist 2 weeks ago but at 1 week post surgery I thought I would wait. Now I think I will ask him to go ahead and see if I cant speed up the speech recovery.

I wish I could stop biting my tongue as well!