Hi,
In March this year I was diagnosed with squamous cell (secondary) cancer in a lymph node in my neck and a month later, after surgery to remove the lymph nodes, with cancerof my tongue. This is to be treated with chemo- and radiotherapy.

I am an ex-smoker (since 1983), an ex-drinker (since 1989) and a vegetarian (since 1990) and an insulin dependent diabetic (1996-ish) so I guess that's there ain't no justice, is there?

Since initial diagnosis I have been very positive, almost cheerful, with the cancer. (Dammit, it's my blasted cancer, i AM going to enjoy it!) I also ascribe my PMA to my practice as a Buddhist.

As a result of this very positive mental attitude (PMA), the surgery was completely without pain. Did I say surgery? Seven and a half hours for the radical neck section, followed by two more trips to the theatre to tie off a vein that was leaking. During the last visit I was awake (they couldn't give me a third general anaesthetic in only 12 hours!

With this PMA behind (under?) me I am (almost) looking forward to the chemo- and radiotherapy. I have put myself down for "no side effects" and "minimal fatigue".

Watch this space!

Regards to all,

Robert WT

Robert WT...

Are you for real... or a figment of my imagination?

D.S.

Hi D.S.
Yes I am for real, if a little larger than life, sometimes.

Robert WT

Dear Larger-N-Life, Robert...

Your PMA is remarkable. I must say, I do like your "quirky", yet refreshing attitude towards a kind'a-crappy situation.

My husband had the same type of cancer and the same treatment... (except his surgery was not neck dissection, just regular excision of the abcessed nodes, which was discovered cancerous after the fact). His base of tongue tumor was staged T-1, bordering on T-2... and the disease in the neck was staged N-2. The overall stage was a 4, most advanced. One year and one month after conclusion of treatment, my husband is considered to be in remission and doing very well. I sincerely hope the same for you.

As you begin chemo-radiation, I hope you'll visit this site whenever you can. Lots of practical tips and solutions are offered by those who have been through the same. As for "no side effects"... Let's just say there may be some "little itty-bitty ones"... but nothing a guy with your level of PMA can't handle. If PMA works like it's supposed to, you've whipped this cancer already!!!

Hope to help you any way I can (via the written word) all along your journey. Let me know what's on your mind any time.

From my heart,

Melanie

P.S. Do you mind if I ask in what stage they have discovered your cancer?

To Robert,
Good luck - you sound brilliant after such an arduous surgery. Having had a radical neck dissection myself I can't believe you have had no pain. (Unless it was only when you were under the anaesthetic!!)

Melanie - a question - how come your husband has a stage 4 cancer. You mentioned a stage 1/2 tongue and a stage 2 lymph node.

I'd be grateful if you could explain.
Best wishes to you and your husband - Tony

Hello Robert

Welcome to our intrepid group! Here's a short Buddhist story, just for you:

quote:

One of his students asked Buddha, "Are you the messiah?"
"No", answered Buddha.
"Then are you a healer?"
"No", Buddha replied.
"Then are you a teacher?" the student persisted.
"No, I am not a teacher."
"Then what are you?" asked the student, exasperated.
"I am awake", Buddha replied.

Best wishes
Vinod

Dear Melanie,
The secondary in my neck lymph nodes were T-1, hardly anything to speak of. The lump, my lump,
my ex-lump, was about teh size of a golf ball.

Dear Tony K
By "no pain" I mean just that. I woke up about 2 hours after the end of the 3rd and last op and not even a twinge! After 8 days I was pursuaded to have 2 paracetamol but only because I had a slight fever.

PMA rules! I hope that I feel so empowered after Chemo- and radio-! (No, that should read, I WILL feel so empowered ... )

Hi Vinod,
Thanks for the Buddhist story. I suppose that you know about the Buddhist who went into Pizza Hut and said "make me one with everything" ?

Respectfully

Robert WT

Dear Tony, re TNM system.
My Husband had a T2N2b tumour & according to the info I have found, any T,N2 comes under Grade 4.
All the best in the coming weeks.

Let's see now... several people/things I want to address...

ROBERT: I want to come to County Meath and do a big'ole study on you... Get into your head... Figure out what it is that sets you apart (as related to fighting cancer with such positiveness and minimal physical pain, etc.) So, get ready for your big "Melanie-evaluation". My plane ticket will be purchased today. When I return home... I will write your story... sure to become a bestseller... and you and I will become filthy rich (if you're not already?).

TONY: About the cancer staging... The way Fran explained it is the way it was explained to me. (Thanks, FRAN.) However, I did not know my husband was stage 4 until recently... when the American Cancer Society informed me. (I had posed a few questions on the ACS website and an oncology nurse, whose job it is to answer cancer-related questions online, informed me that Dan's cancer was stage 4 based upon the detailed information I'd shared about his case. It was actually quite a shock to me and, frankly, I had a difficult time hearing and coming to terms with that information... because all the statistics I've read are not nearly as positive for someone who was diagnosed in stage 4. (I went through yet another "grieving period" of sorts.) Upon diagnosis and throughout his treatment period, our local oncology team had always referred to Dan's cancer as T1-T2/N2... never once spoke the number 4. I always assumed they caught his tongue tumor fairly early. Also... it has never made a bit of sense to me that Dan's neck nodes could be N-2 (which is only one step away from the most advanced nodal stage, N-3) when his primary (tongue tumor) was in the earlier stages. In other words... it seems as though Dan's tongue tumor would have been at least a T-2/T-3 considering the neck node disease was so advanced. It always made me wonder if the tongue tumor was, in fact, primary... or did they miss some large tumor elsewhere that was REALLY the primary. Our docs have tried to assure me that they KNOW the tongue was primary... so I've tried not to think about it further... even though the early-stage tongue tumor/late-stage nodes just doesn't add up to me to this day.

Anyway, in answer to your question, Tony... I have now learned that N-2 (or N-3) nodal disease automatically puts a person into the overall category of stage 4... regardless of how the tongue (primary) tumor is staged. All this time that I was telling people... "Oh, they caught Dan's cancer early"... I was apparently wrong. It was "localized", but "advanced"... Darn-it!!!!!

ROBERT... One other thing (assuming I've not asked already??)... When does your chemo/radiation begin?

Going out of town in the a.m. for the weekend. (I'm likely to have message board withdrawals!) I'll check in on everyone Tuesday some time. Be cool, kids!

Melanie

Hi Melanie,
Three wisdom teeth removed yesterday. Two a breeze, one a little blighter! Now I am ready for RT (and CT). I see the Consultant Oncologist this afternoon after which I will have a better idea of when CT and RT will start.

The smart money is on 2 weeks from Monday - 12th June!

As I will be an in patient (not, I hope, too impatient) Monday through Friday, reports will be at weekends when I WILL feel OK.

Many thanks for your support .....

Regards

Robert WT

You are so welcome, Robert!

Ouchie! Three teeth out! I suppose you resemble a chipmunk today, huh!?

Yes, do post your weekend updates (whenever you feel up to it) because I'll surely be wondering how it's going.

I wish the BEST for you, L.T.L. Robert!

You're a rare gem for sure! Stay strong!

Melanie

Hi Melanie,
My outward appearance as a chipmunk has gone and my mouth feels like it's mine again. I was fortunate (PMA) that there was little by way of pain, either at the time or after.

Saw the consultant oncologist on Wednesday. He must have regretted asking me what I knew about cisplatin .... I started with the chemical formula (did I mention that I haver a degree in chemical engineering? Eons ago) and we took it from there.

Now I'm a bit impatient to be getting on with the CT and RT. No firm word as to when, or where, it will all take place.

How's this for the options: Beaumont Hospital (where I had my neck lump removed)has a major oncology department but no radiotherapy facility (yet - promised for 2011, but not soon enough); OTOH, St Luke's (South of the River and somewhere between 30 and 60 minutes away) has the Radiotherapy equipment. Beaumont is regarded as my primary cancer treatment hospital. Thus they want to do the chemotherapy.

So the score is that Monday through Friday I will have radiotherapy in St Luke’s, plus I will spend one of those days in Beaumont having chemotherapy.

Actually, it may make for fun spending Tuesday or Wednesday 'travelling'.

Whatever: it's better than the alternative.

Robert WT

Hey Robert,

Goodness gracious... logistics, logistics... chemo here... radiation there... How inconvenient for you! Well now... between Beaumont and St. Lukes... This cancer of yours had better take a final bow and do a big disappearing act... for good!

I'll bet not many oncologists run into many chemical engineers... at least not every day! Sometimes having a medical background or, like you, other specialized types of knowledge can make cancer treatment even more unnerving... simply because you know precisely how harsh and toxic certain drugs and radiation can be. While I knew very little initially, my "thing" was to research every little detail all along the way... to the point that, honestly, I'm not sure it was in my own best interest to have so much information. There were (and still are) times that I wish I were completely (blissfully?) ignorant, particulary when it comes to long-term complications of the treatments... and certain statistics related to recurrence/survival. I guess what I'm saying is... Don't let your own thoughts/knowledge/ understanding overwhelm you. The mental pictures that we create in our own busy little minds can bring us down like nothing else in this world! Hopefully your PMA will keep that from ever being the case. Just keep it in check, brother, and you'll be JUST FINE!

Keep me posted periodically as you get into treatment. I want to be "in the know"!

PMA... all the way!!!!!!!!!!!

Melanie

Hi Melanie,
Yes, some of the statistics can be unnerving (if one lets them). Mark Twain is reported as saying "there are lies, damned lies and statistics". Not far wrong there, eh?

My other 'hat' (well a wig, actually) is that I am an attorney - a barrister. This may account for the attention that I appear to attract from the medical staff. No, that's unfair, they are often over-worked, sometimes unfairly maligned but always dedicated and willing to help.

Latest news about RT is that I should get a call later this week or early next week to invite me for a simulation session. RT will start later the same day, or within the next couple of days. So there is light at the beginning of the tunnel. (As an aside, do x-rays have any light associated with them? I should know the answer, I guess that it's a 'no' but I would like them to have a pale lilac, effemeral 'glow'. Is that too much to ask?)

I've been researching soft and easy-to-swallow food. Well 'researching' is a bit keen: I've been thinking about easy-to-prepare, nutricious and soft and easy-to-swallow food. Bananas will play a part, along with any other fruit (or vegetables - I LOVE gazpatcho soup) that can be liquidised. As well to be prepared.

PMA ... all the way!

Right on

Robert WT

Hello Robert WT,

I am a 'mature' student and am currently undertaking a research module. My chosen hypothesis is 'A positive mental attitude can improve physical well being'. When I searched PMA in Google, I found your story. I am truly impressed by your PMA. I wonder if you would mind me using some of the information in your posts for my research module. I wish you all the very best for your long and happy future.