Living with Cancer... my pain, trials, and learning to cope.

[sweeks]

Thanks for sharing .... May God continue to guide and bless you and your loved ones.

[ismithx]

thanks for sharing your story with us and God's blessings to you.



mods, can we sticky this topic plz plz plz?

[bonzo.specb]

Great thread, thanks for sharing.

[gundelero]

Jehovah is always in control!

[toyolink]

I wish to express my respect for you ,SIR.
People like yourself rejuvenate my sometimes challenged belief in the human spirit.
My prayers would include you and your family for strenght and blessings as you make your journey.

[V8 Boys]

The Biopsy.......

For doctors to administer the correct treatment for a cancer patient, a biopsy, or tissue sample must be taken from the lump or affected area. In the case with breast cancer, an incision is made and a small "slice" or "block" of the lump is removed...to ensure that there is minimal blood loss and pain, the doctor uses scans, and an ultra sound to accurately locate the mass. With certain masses, like ones near organs, where surgery can be risky a "fine-needle aspiration" is used...they say it's a fine needle, but TRUST MEH, it eh fine!

In my case the most accessible lump was right on my neck...between my collarbone and voice box. It had arteries and blood vessels nearby, and moving it would be a bit risky.

Have you ever had to trust someone implicitly? I mean, putting your life in their hands.

We were looking all over to find the surgeon who would do this risky operation on me, and my sister introduced me to Dr Malcolm Samuel...he shook my hand, and looked at that lump in my neck, and just the way he moved, spoke...and HIS HANDS! The hands of an absolutely confident professional....I knew right there, that I would live thru the procedure.

Next, the money to get it done.

Dr Samuel's fee was really good, but the cost of the operating room at West Shore, the anaesthesiologist, and the other nurses etc came up to little over $20,000.

I had zero.

I had not worked for a few months, my wife's salary covered our food and rent, barely... and a loan would take too long to come thru, I had to get this done asap. Time was against me AND the pain....The lumps in my back were getting so painful...I could not sleep.

Just a few days before my surgery, the pain was so intense that I had to go to the hospital where Dr Samuel ordered I be given a serious pain-killer.

So no money and not too many options,but what were we going to do? I didn't come from a family with money, and I was never the type to beg....but my life was on the line.

I prayed, sorry, WE prayed....so intently, so relentlessly...as a stranger pounding on a door in the middle of a storm...begging to be let in.

Even though I wasn't born into money and wasn't poor either...I had my wit, my mind, my conviction, my faith and a few people who knew me well....who I knew wouldn't turn me back...all I had to do was be sincere and truthful.

So, with just a week to go before the surgery I approached 5 people who knew me and my family for many years. Before I met each one I uttered a silent prayer for the strength and courage to let them see the seriousness of my situation and how much I needed for them to believe in me. I would love to name them, but they helped me without ever expecting anything from me, hopefully they will read this and know how much they mean to me....and my family.

From those 5 people we received EXACTLY the amount we needed....at EXACTLY the right time.

I will now try to make the words you read, convey how we all felt on the day of my surgery.
On the day my surgery was scheduled, Dr Samuel's home was flooded. It was that serious set of rain that washed away a lot of Maraval, remember?

A few days later, we were on again. and my entire family stood by me, as the nurses got me ready for surgery. My mother, my beautiful mother who sat beside my bed for all the years I had been sick as a child...held my hand and said " don't worry son, we have been thru this before, and Jehovah has gotten us thru it, he will do so again".

In came Dr Samuel...he is from St Vincent and I looked up at him and said "do yuh ting Vincy".

As I was rolled into the operating theatre I could see everyone's love sending me and bringing me back...and my Dad...he had always been so strong for me, all my life, always showing me how to be a man.

They transferred me to a stainless steel type of bed, oh it felt cold...and the room too...it was like ice.

A final handshake from Malcolm and the mist of the gas...and I was gone.

to be cont'd tmrw night.

[~Vēġó~]

eagerly awaits...keep the strength and resolve to go on, with that ever present POWER enveloping your entire surrendered being.....

[acesinghit]

tears came out my eyes with this one. Thank you for sharing your strength and story with us. It is very touching and encouraging. Please pm me should any assistance be required.

[MANIAC]

Lost for words Bro ... wow !!!

[ismithx]

riveted to this thread

[apple]

wow. hanging on every word. thank you for taking the time to share this with us.
i applaud your courage and pray for recovery.

[UML]

Wow this story made me very emotional. Stay strong bro. Keep the faith. Stay positive and keep fighting. God is good. Never give up.

[V8 Boys]

The first thing I saw was my wife's face and next to her my Mom....looking, smiling.

I faded back to sleep.

Dr Samuel was there when I finally awoke and he checked my incision....admiring his handy-work: "Told you so" he said. The man is a BOSS!

I would later hear someone say that he was the right choice for this "never before attempted surgery in Trinidad" and that many prayed that the Almighty's hand would be over his, as he made every cut with that scalpel.
The name of my blood disorder is: Glanzmann's Thrombasthenia and when I was first diagnosed with it back in 1980...I was told that I was one (1) of only 300 in the world with that disorder. So can you guys understand how emotionally charged we all were when I went into that operating room? The doctors at General Hospital had said that they would not take the chance to operate on me...cause they didn't want to go down in history as the one responsible for "killing the only one like me in the Caribbean". You guys laughin ent?

Well, according to Dr Capildeo...that was the easy part, next up CHEMOTHERAPY.

Just the word, evokes fear.

But then something we dreaded happened that night.........

I started to bleed. I had 9 stitches and the last one at the bottom started to ooze blood.
It would continue to bleed all night....we tried everything, we wrapped it tighter, applied pressure to the wound....it just would not stop!

We had decided to spend that night by my Mom's house as it meant I wouldn't have to climb any stairs....and I would be closer to West Shore.
I tried to sleep, but in an hour the entire bandage would be saturated with blood, we changed it several times, and my t-shirt...down to my pants. I slept a little sitting straight up. That night was torture for us all.

We went first thing to Dr Samuel and he re-applied the bandage...even tighter....3 hrs later, it still bled!
That afternoon we went back and he looked at it again, it was only oozing from the bottom stitch...Malcolm the Vincy, took a surgical nipper....and "CLIP"...took that stitch out.....

It stopped.

It took me a few weeks to recover and waited anxiously for the results of the biopsy to OVERULE the initial CTScan report of Non Hodgkinsons Lymphoma.

The news that the pathology report confirmed that it was Stage 3/4 Non Hodgekinsons hit us hard, especially my wife...we had hoped that it would have been different....as 50% of those diagnosed with it--die.

And so we went to register at The National Radiology Center in St James, to start my chemotherapy.

I had been researching what it involved and what I found was really frightening. To make matters worse, I spoke to a few who had done it before. One guy I met at POS General showed me his arms, scarred arms...his veins black from the chemo. He also said that just the sight of the bag (chemo) would make him vomit. He said that chemo was "terrible".

This made it hard for me. But something he told me remained with me....he said: "I have children to feed, I have a wife to support...and this is the only thing that will keep me alive".

Now, I know there are some of you that are following and are saying in your minds that chemo is this and that...and that the doctors, hospitals and drug companies don't promote natural remedies because they make money off of the drugs.

We will get to that. I will only say that I have seen how deadly and powerful cancer is...and to beat a killer...you must go to the edge, you have to go to death's door to beat a killer more powerful than your body and mind. Don't worry, we will talk about chemo, what it is, and how many different regimens there are and how differently some people react to the treatment...how some survive and others don't.....AND THE ROLE FAITH PLAYS. I just don't want to get too side-tracked in telling the facts as they applied in my case.

Remember I had said how I looked at all those people I saw on those benches? I, like many, feared the words cancer...I had a cousin and his Mom die from it...he was 16 when he died...my Mother took care of him when he was on his last....she bathed him, fed him soup...held him in her arms, when many were too afraid to feel sadness. His older brother Peter has fought hard to be alive today as well. Cancer is a respecter of no one.

We will see you again Joshua Tardieu... I'll continue in a minute...

[DFC]

Wow dude. I have no words.
You're a true fighter . much respect to you sir.

Your story is inspiring.

[Ted_v2]

Wow.

[snypaz]

Wow... Thanks for sharing your story. Brought me to tears to be honest. You sir are very brave and very blessed.

[javishm]

damm u should do books

[Cid]

Excellent work on your story......
Many thanx once again for sharing, the first hand info and insight here is priceless

[V8 Boys]

Three days before I was to take my first course/cycle of Chemotherapy, Dr Capildeo out of the blue called me and asked me to take a block/slice of that lump we removed from my neck to his office at the Brian Lara Centre and his secretary would send it to Miami just to get a second opinion on my diagnosis. All I had to pay was the shipping.

This man, this amazing and gifted doctor, charged me JUST ONCE in all the visits I had with him, the consultations, the phone calls to me at all hours of the night to find out how I was doing. He is a special creature.

One of my aunts who had also been doing chemo at NRC (yup, another family member) called me the day before, and told me EXACTLY what to expect...she did not "pull any punches" or "sugar-coat" what she said. I needed that, and ALL THE STUFF EVERYONE TOLD ME ABOUT & WHAT TO DO AND HOW TO FEEL.....didn't matter...my aunt, because she was going thru what I would be, made my heart accept what it feared the most. She said I would eventually come to "love my chemo".

It would be the only thing to save me.

I arrived at NRC in a wheel chair, full head of hair, stitches freshly removed from the surgery....my blood levels were checked...they were good....due to the course of steroids in high doses I took to boost my platelets.

Down the corridor, past my new "brothers and sisters" who had been where I now was going.
The "port" went in well...

imagesCAYZQJ1W.jpg (5.54 KiB) Viewed 3910 times

Next came the "chemicals"....it was pink in color....the nurses said it was nicknamed Koolaid.

It lasted 45minutes and I was out and on my way home....to await the onslaught of bad feelings. It was December 23rd 2011.

We went Down the Islands, my home away from home, where I grew up.
It was hard for my family who were all down there to see me suffer.

What probably made it worse for them is that when I am in pain...I stay quiet. I don't complain or moan.
That week, my hair started to fall out in clumps. While swimming my wife would see my hair falling off...and on my pillow there was hair all over it. that night....just the 3rd night Down the Islands, while taking a bath, it really started to fall out.

I will never forget that.

The second week saw me feeling terrible, I never vomited though...thank God...I HATE to vomit. On the 26th, the results came back from Miami.

It wasn't Non Hodgekinsons Lymphoma, it was Metastatic Seminoma, or, Testicular Cancer, that had spread to my Lymph nodes.

Dr Capildeo said that my Chemo regimen had to change and surgery to remove my left testicle would follow after 6months of aggressive chemotherapy.

But my odds of survival were now better...92%!!!

Sure.....I'd give up my left nut for that!
to be continued tmrw night

[DVSTT]

Interesting perspective on curing cancers.

But Clifford I certainly respect you, if I had to go through what you had to, I probably would not have been able to overcome it.

[kurpal_v2]

Makes me 2nd guess my lifestyle with the cigs reading a first hand account like thus.

[~Vēġó~]

^^^if it's any help I'm 760 days smoke free....

[TRD12]

^^^if it's any help I'm 760 days smoke free....

well done my friend.....

[rx80]

Thanks for sharing your story, hope everything pulls through and others get hope from your experience thus far!

[V8 Boys]

With my new diagnosis, Dr Capildeo, worked out a new chemo regimen for me.
Instead of 45 minutes of chemo every 3weeks...it would be 5 days every month for 6months.

Five days hooked up to those drips. That meant staying at NRC for those 5 days, Monday through Friday. I had no idea what to expect.

In January we started. I did my weigh in, and the drug dosage was worked out according to my weight. The 3 drugs to be used were: Cisplatin, Etoposide and Bleomycin.
It would be 6 cycles...every 3 weeks for 6 months...each cycle lasting 5 days.

If there was a time in my life that I needed support...now was it.
The first regimen I took in December would be like a mosquito bite in comparison to this regimen. I did actually vomit once last time but it was due to me taking Pethidine...a VERY POWERFUL synthetic narcotic, to cope with the pain I was in with the chemo (it's ranks just below Morphine).

Allow me to back track a little...that night, I had a thunderous headache, along with severe stomach pain from the chemo and I took the Pethidine to help ease my anguish....but at the time didn't know that along with the Pethidine...I also had to take a Gravol tablet too.

At 2:17am...I got up in such tremendous pain that I thought my head would burst...I gagged and felt I would pass out....we had to get to the hospital...quick.

At 3am, we were turning at the lights at Mt Hope, and I told my wife to drive faster...I stuck my head out the window and threw up like I was going to die.

We got to the emergency room and the nurses sent me right in, where I continued to throw up, in desperation, we called Dr Capildeo...at 4.45am...[color=#FF0000]WOULD YOU BELIEVE THE MAN ANSWERED?!

[V8 Boys]

Dr Capildeo listened, then called the hospital directly and I was taken straight to get a CT Scan of my head. He thought the cancer had gone to my brain.

By now my Mom and Dad, had arrived and we sat and waited, in anguish, for the results. A really good friend and brother in the faith-- Nigel O'Conner brought us fresh fruit and a sandwich for Sharon and I...we were weak from hunger. At the same time my wife was also fighting a pounding headache and had a strange rash on her arms and legs (little did we know she was in the beginning phase of Dengue Hemorrhaghic - yes the bad one).

The report didn't come in until 4pm (and that was only from my wife repeatedly going to the desk and asking if it had come yet to which the doctor pulled the report out of my file, "Oh yes! it's been here for awhile"...) Anywho my brain was clear, no lumps, lesions or abnormalities - except for the "usual mess in it"...but I was ok...the cancer had not spread to my brain. It was the sheer strength of the Pethidine on an empty stomach, and taken WITHOUT the Gravol...that caused me to get so nauseated.

Back to NRC, where I would start my FIRST REAL CYCLE of chemo, AND having to leave my very ill wife at home, whose own platelets and white blood cells had dropped to dangerous levels.

The regimen consists as I mentioned before of the 3 drugs...Cisplatin, Etoposide and Bleomycin...and before that regimen is administered EVERY day at 6am...a full bag of Saline Solution, mixed with Lasix would be given first. This was to prevent my kidneys from shutting down from the sheer potency of the 3 drugs. The Lasix was added to make you urinate....that process flushes out your kidneys and BOY DOES IT MAKE YOU PEE!

Of the 3 drugs the nurses would always be the most careful with was the Cisplatin...because if your vein collapsed while it was going into your bloodstream not only would it BURN ALL THE WAY TO THE BONE but it could actually poison you. Which is ironic because that's what those drugs actually are...poison.

You see, cancer attacks good cells and destroys them and multiplies it's OWN cells in the process....so for Chemotherapy to kill the killer...it has to DESTROY every rapidly dividing cell in your body..BOTH GOOD CELLS AND BAD CELLS and along with that...the cancer cells.

These rapidly dividing cells in your body are responsible for the lining in your stomach, your muscle and hair growth and your immune system. Hence the hair loss among patients that take one or two of these drugs....particularly the Cisplatin. And that is also why cancer patients loose so much weight when they are on chemo...because their stomach lining has been EATEN AWAY by the chemo and you literally cannot eat.

Your insides feel like they are on fire...it's a combination of nausea, constant stomach pain, weakness, TOTAL lack of appetite..and in many cases - vomiting.
When they are administering the chemo...you actually don't feel that sick...at least for the first 2 cycles...because they give you some serious anti-nausea drugs to prevent you from throwing up while the drips are going in.

It is when you go home, that the torture begins.

[IvanTerrors]

hold on strong brother didnt know cancer was soo serious anyway good read. should publish a book on it oo just my lil 2 cents

[krisso310]

be strong padna you will pull through.
One of my aunt has breast cancer, and its really painful to see the pain that she does be in sometimes.. mainly through the chemo and treatment.

[~Vēġó~]

lawd....never knew of anyone who has gone through this....

[urabus]

Listening to your story is very scary, reminds me of my cousin who passed away with cancer of the blood.....after chemo, he wud come home normal normal, the in a few hours the vomiting started.

When I heard him vomiting, i wud usually give him his space with the adults around, and maybe check in with him after a bit

Nearing his time, i rem had this blue bunny ice cream container i his roomin mt hope, he wud vomit half bucket of blood few times a day....

Reading your story brings back a lot of memories for me with him,even when you spoke of the hair falling off in clumps.

Man are you strong!