3159 replies to this topic

[tq2000]

Fuck cancer. I just got a call from my brother, and it looks like my sister in law has lung cancer. They took her to the ER this morning coughing up blood, things don't sound very good. On new years day it will be 15 years since it took my father and at almost the same age as my sister in law is now. My brother is a recovering alcoholic, and took it real bad when our father passed. I don't know how he is going to make it through this. They have two teenage kids as well, my heart is breaking for my brother and his family right now.

[mainsheetsister]

So sorry, tq

Thinking of you and your family.

[Bowgirl]

TQ2000, I'm sorry to hear about your Sister-in-law, and you and your family who will have to cope with this.


I recently found out about another friend's diagnosis, and it has me both crushed and heart-broken. Cancer is a miserable thief.
And if I can just rant for a minute - why the f* is it that lately all I hear is diagnoses that come in too late for treatment to be effective? What happened to catching it early, and treatable and remissions?! /end rant

[tq2000]

Thanks MSS and Bowgirl, and so sorry to hear about your friend as well. My wife and I are heading out to LI to see them tomorrow morning. Not much to do except just be there for them at this time. Will hopefully hear more from the docs in the next few days.

[behappy]

Just before Christmas I got my Five Year Star. It seems I made it through my cancer odyssey. There were days when I could not imagine getting to this point. The doctor wants me to take the drugs for 3 more months, but that is a down wind sailing.

My thoughts and prayers are for everyone on this thread who continue to fight cancer, as a patient or as one of the wonderful support people.

Happy New everyone!

[Bowgirl]

That is great news with which to start the year, Behappy. Congratulations!

[Phil]

Our thoughts go out to longtime Anarchist Skirts today. Bumcleat/Eventually/Evo will be missed by all.

There's a thread in GA.

[Bowgirl]

SA is responsible for some amazing friendships, and great relationships. Fuck cancer for messing with it!

There are no words eloquent enough to express how deeply my heart aches for SkirtRacer and all those who will miss him.

Fair winds, Evo.

[Snaggletooth]

+1

[hobot]

f****** cancer sucks!

[water ratz]

FUCK cancer. I am so sick and tired of hearing about everyone dying of cancer. My mother died of caner. What the hell did the human race do to deserve such a horrid disease?

To all of those who are fighting it and to those who have kicked it's filthy ass, Keep up the fight.

My heart bleeds for Simon, Katie and their family. RIP Evo, you will be truly missed.

[Mario]

F****** the stupid Cancer + one. We are here are not going away with out a fight, sorry to hear about the lost of close friends.


Mario.

[Heriberto]

Yesterday was the birthday of my dearest friend Todd Warner who died last July from a lung cancer diagnosed in April. I was also thinking of him as we delivered some of Catherine's ashes to the waters of Key West yesterday morning.

As a friend said, I hope there is a heaven, if only so he can be having birthday cake and ice cream.

I miss you Todd. And miss having met you Catherine, wishing you birthday cake and ice cream too.

[juswannagofast]

Me....still in hospital now. Couple days before New Years my femur split in two. And my hip shattered. I folded up like a tent. Rushed to the hospital. Emergency bi opsy. surgery a week later. They pulled 3 huge fist size clumps of cancer that had been eating away at my bones for what they figure was a few years. No warning call. Straight out of the blue. So now onward and up ward. I now have more drive and desire to get my boat refinished. This fucker isn't holding me back down. Radiation starts next week.

[water ratz]

Me....still in hospital now. Couple days before New Years my femur split in two. And my hip shattered. I folded up like a tent. Rushed to the hospital. Emergency bi opsy. surgery a week later. They pulled 3 huge fist size clumps of cancer that had been eating away at my bones for what they figure was a few years. No warning call. Straight out of the blue. So now onward and up ward. I now have more drive and desire to get my boat refinished. This fucker isn't holding me back down. Radiation starts next week.

Keep up the fight, and beat this mother fucker. My thoughts are with you, as is this whole community.

[jetfuel]

I recieved an email from a woman I met while being treated for throat cancer. Her brother was another one that was recieving treatment at the same time so we became attached because of our situation. He died last week. The third of the 5 I saw frequently while I was going for radiation every day for 7 weeks.
Sucks
I am still in remission but the pressure of waiting for it to come back is omnipresent. So far its been over two years

[Guitar]

Me....still in hospital now. Couple days before New Years my femur split in two. And my hip shattered. I folded up like a tent. Rushed to the hospital. Emergency bi opsy. surgery a week later. They pulled 3 huge fist size clumps of cancer that had been eating away at my bones for what they figure was a few years. No warning call. Straight out of the blue. So now onward and up ward. I now have more drive and desire to get my boat refinished. This fucker isn't holding me back down. Radiation starts next week.

Kick it's ass, we're behind you and your fight. I now know more survivors than I know patients. Keep up the attitude.

[TimFordi550#87]

Fight hard, Jus....we're all pullin' for you.

[Bob Perry]

Jus:
Best of luck with this challenge. I'll be thinking of you.

[jetfuel]

Me....still in hospital now. Couple days before New Years my femur split in two. And my hip shattered. I folded up like a tent. Rushed to the hospital. Emergency bi opsy. surgery a week later. They pulled 3 huge fist size clumps of cancer that had been eating away at my bones for what they figure was a few years. No warning call. Straight out of the blue. So now onward and up ward. I now have more drive and desire to get my boat refinished. This fucker isn't holding me back down. Radiation starts next week.

As a survivor my heart is with you
Keep your sense of humour it will take you a long way in the fight
No one really knows how it feels until they go to tv at dark corner

[Greyhound37]

Skin cancer, very routine variety, (not melanoma) took a rare trip from my arm to my nodes and surrounding tissue. Now I spend my outside time covered in Blue Lizard.

[Bowgirl]

juswannagofast - this is a good place for support and humour. We feel all things deeply - we cheer successes, we cry when the battle is lost. Let us know what you need from us (shoulder, ear, kick in the ass, slap upside the head, tacky jokes, anything) - we're good for it.
Cheering you on!

Jetfuel - I'm so sorry about the loss of your friend. There are no good words. I know you're haunted by your remission and the possible end thereof, but please focus on the good and positive fact that 2 years have passed of fully lived life, and more await.

One thing I'm learning is that there is always an end - we just never know when it's coming, so the middle we have that we call "life" is up to us to ensure we wring every drop out of.
After all, no one has yet succeeded in cheating death - we all go sometime. I just hate that f*king cancer robs friends of years and robs me of the presence of my friends.

Big hugs to those of us here mourning the loss of Evo.

[mainsheetsister]

Yesterday was the birthday of my dearest friend Todd Warner who died last July from a lung cancer diagnosed in April. I was also thinking of him as we delivered some of Catherine's ashes to the waters of Key West yesterday morning.

As a friend said, I hope there is a heaven, if only so he can be having birthday cake and ice cream.

I miss you Todd. And miss having met you Catherine, wishing you birthday cake and ice cream too.

Very glad that you were with me in Key West for that, H.

So sorry about your your friend. I wish I had known that yesterday was his birthday while we were out on the boat.

And on behalf of my sister, thanks for the kind words, but I know that she would much rather have beer for her birthday. Lots of beer.

[Charlotte Foxtrot]

Me....still in hospital now. Couple days before New Years my femur split in two. And my hip shattered. I folded up like a tent. Rushed to the hospital. Emergency bi opsy. surgery a week later. They pulled 3 huge fist size clumps of cancer that had been eating away at my bones for what they figure was a few years. No warning call. Straight out of the blue. So now onward and up ward. I now have more drive and desire to get my boat refinished. This fucker isn't holding me back down. Radiation starts next week.

You can kick it's a$$, juswannagofast. Keep up the fight. We're with you.

My story is pretty much garden viarety, if you will. I was late for my mamo last year by a couple of months. Just couldn't seem to find the time. Quite by accident one evening, I brushed against my right side and felt something hard. Quite out of place. I made an appointment the next morning to see my Dr. Many tests later, I was diagnosed with breast cancer. Had the surgery in August and they removed a large egg sized tumor from my right breast. Hadn't matastisised yet. I completed chemo in December and have just started radiation. That should be finished by the end of March, then I'm finished.

I watched this disease take some friends, aunts, uncles and my mother. I don't wish this beast on anyone. For those who are fighting this, keep up the good fight. You can beat this!! For those who have lost friends and/or family, my heart goes out to you. For those who are support for someone fighting this beast right now, keep strong, give them lots of love and a positive attitude. I could not have made it this far without the love and support of Charlie and our friends/family.

My best to you all, Charlotte.

[hobot]

Makes one wonder about the millions and millions (billions?) That have been spent on research and fricken cancer is still wrecking havouc in our lives.

[nwsoling]

Hopefully I can add one to the survivor side of the list. Got home from Cowes Week last august with a case of the crud I obviously got flying cattle car style from Heathrow to Seattle via Dallas. After a week and a half of coughing and wheezing (and sharing it with my wife) I was in talking with my GP about blood pressure medication and he asked if there were any health changes. I mentioned the gland in my neck that had swollen up which I thought was due to the cold. He looked at it and said to come back to check in a couple of weeks. When I did it was possibly ever so slightly smaller but not gone - we gave it one more week and then started testing. Turned out to be Squamis cell carcenoma which we finally tracked down to my left tonsil site (tonsils came out when I was a kid). Radiation and chemo started late October and finished right before the holiday break. One hell of a diet program is all I can say. Swallowing got to be problematic for a while, my hearing has suffered, my taste buds are shot, etc but the tumor receeded better than they had hoped so now I'm in limbo waiting for the followup scans to see if it's gone. Gotta wait for 2-3 mo following treatment to get a good scan. Having gone thru my wife's breast, endrimetrial, and brain cancer episodes I have always said I hate cancer with every cell in my body - my thoughts are unchanged. I've had it relatively easy I know but I hope to be able to add one to the win column. Van Isle 360 is on the horizon, I go in tomorrow for ACL replacement surgery but I can well and truly say I'm feeling better ever damn day. Cancer is a bump in the road - not the journey.

[jetfuel]

Hopefully I can add one to the survivor side of the list. Got home from Cowes Week last august with a case of the crud I obviously got flying cattle car style from Heathrow to Seattle via Dallas. After a week and a half of coughing and wheezing (and sharing it with my wife) I was in talking with my GP about blood pressure medication and he asked if there were any health changes. I mentioned the gland in my neck that had swollen up which I thought was due to the cold. He looked at it and said to come back to check in a couple of weeks. When I did it was possibly ever so slightly smaller but not gone - we gave it one more week and then started testing. Turned out to be Squamis cell carcenoma which we finally tracked down to my left tonsil site (tonsils came out when I was a kid). Radiation and chemo started late October and finished right before the holiday break. One hell of a diet program is all I can say. Swallowing got to be problematic for a while, my hearing has suffered, my taste buds are shot, etc but the tumor receeded better than they had hoped so now I'm in limbo waiting for the followup scans to see if it's gone. Gotta wait for 2-3 mo following treatment to get a good scan. Having gone thru my wife's breast, endrimetrial, and brain cancer episodes I have always said I hate cancer with every cell in my body - my thoughts are unchanged. I've had it relatively easy I know but I hope to be able to add one to the win column. Van Isle 360 is on the horizon, I go in tomorrow for ACL replacement surgery but I can well and truly say I'm feeling better ever damn day. Cancer is a bump in the road - not the journey.

Went thrugh the exact same prcedure myself and two 1/2 yrs without it coming back. Tasting a little now
Not an easy time though Congratulatins for making it through Many dont

[Shute Man]

I need an answer.

I live quite away from my Sister that is cancer fucked... she'll die from it, its all about when.

At the moment she is in hospital for 'pain managment' to me that sounds like palitive care, you've got weeks not years. And everybody is being positive, they'll get it right etc. Thats Mum, Dad, Husband etc.

So I feel like a cunt (its about me, makes me feel worse) I want to go visit for a while but it outside any plans I had. I dont want to have it seen that I'm visiting before you die..

But you can't visit when they are gone... And phone calls etc don't cut it, other than being there in person

[dreadom]

Bob the term palliative care encompasses a wide array of treatments, stages of process and conditions. Palliation means that underlying disease process cannot be cured, but may involve every treatment, medication, procedure to try and control symptoms. It does not always mean death is imminent, although unfortunately it might be.
My advice is go see her. It might not be the last time you see her, but if you don't and she does die, you will be kicking yourself forever.

[Snaggletooth]

I want to go visit for a while but it outside any plans I had. I dont want to have it seen that I'm visiting before you die..

But you can't visit when they are gone... And phone calls etc don't cut it, other than being there in person

juste go....go, supportte youre famley.

[mainsheetsister]

I need an answer.

I live quite away from my Sister that is cancer fucked... she'll die from it, its all about when.

At the moment she is in hospital for 'pain managment' to me that sounds like palitive care, you've got weeks not years. And everybody is being positive, they'll get it right etc. Thats Mum, Dad, Husband etc.

So I feel like a cunt (its about me, makes me feel worse) I want to go visit for a while but it outside any plans I had. I dont want to have it seen that I'm visiting before you die..

But you can't visit when they are gone... And phone calls etc don't cut it, other than being there in person

Go. Be with her. Maybe you thought that she would be there for the rest of your life, like I thought my sister would be there for the rest of mine.

This is going to come across as sounding harsh, but when the writing is on the wall and you can see that it is not going to be that way, you need to set your shit aside and be there for the rest of Her life.

You won't regret it.

And know that part of my heart goes with you.

[RockHead]

Go. Be with her. Maybe you thought that she would be there for the rest of your life, like I thought my sister would be there for the rest of mine.

This is going to come across as sounding harsh, but when the writing is on the wall and you can see that it is not going to be that way, you need to set your shit aside and be there for the rest of Her life.

You won't regret it.

And know that part of my heart goes with you.

/\ Truth from one who has lived it.

You don't get a second chance after they're gone. My biggest regret in life was not visiting a very close friend before he died of cancer. Going to visit Catherine in her last weeks was essentially an act of contrition and as much for me, it was one of the better things I've done in my life. Those were friends, not siblings.

Go.

[juswannagofast]

I would like to thank everyone for the get well wishes...I have a long road ahead of me....learning to walk again is not fun...but on the bright side I still have my leg at this point...radiation starts in 11 days, for 8 weeks.....and it's a sad day as I have had to list my boat for sale after 5 enjoyable seasons....I just will not be able to handle a boat of that size, my leg will not be able to handle it and I have lost almost 2/3ds of my muscles over my whole body through this whole ordeal.....so I will be downsizing.

JUS

[Mario]

I need an answer.

I live quite away from my Sister that is cancer fucked... she'll die from it, its all about when.

At the moment she is in hospital for 'pain managment' to me that sounds like palitive care, you've got weeks not years. And everybody is being positive, they'll get it right etc. Thats Mum, Dad, Husband etc.

So I feel like a cunt (its about me, makes me feel worse) I want to go visit for a while but it outside any plans I had. I dont want to have it seen that I'm visiting before you die..

But you can't visit when they are gone... And phone calls etc don't cut it, other than being there in person

Shute Man just go, do it for her, not all cancer are deadly. I'm in remission after been diagnosed on 10/10/11 and Iwil die in a sailboat racing before I die in a Hospital bed. Believe me, you have no idea how much it means to her.

That is me on the picture last summer AYCS; not bad for a dead man,

Best Mario...

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[jesposito]

I need an answer.

I live quite away from my Sister that is cancer fucked... she'll die from it, its all about when.

At the moment she is in hospital for 'pain managment' to me that sounds like palitive care, you've got weeks not years. And everybody is being positive, they'll get it right etc. Thats Mum, Dad, Husband etc.

So I feel like a cunt (its about me, makes me feel worse) I want to go visit for a while but it outside any plans I had. I dont want to have it seen that I'm visiting before you die..

But you can't visit when they are gone... And phone calls etc don't cut it, other than being there in person

Shute Man just go, do it for her, not all cancer are deadly. I'm in remission after been diagnosed on 10/10/11 and Iwil die in a sailboat racing before I die in a Hospital bed. Believe me, you have no idea how much it means to her.

That is me on the picture last summer AYCS; not bad for a dead man,

Best Mario...

Which guy?
Please, find a boat other than a J105 to do it on.
But I do agree, I want to die on the water.

[Bowgirl]

Shute Man, in case you haven't got the message from everyone else ... go.
Visit because you want to visit.
Everyone will see it whatever way they want to see it - that's not yours to control, that's not your issue. Your issue is you (yes, it's all about you) and how you live with yourself in the days, weeks, years that follow.

Go. She's your sister for fuck's sake. As far as I'm concerned, all shit gets set aside for important family events like births, weddings, funerals, serious illnesses ... be there for her because you need to for you. ...and because it just may mean the world to her, too.

[Winever]

I need an answer.

I live quite away from my Sister that is cancer fucked... she'll die from it, its all about when.

At the moment she is in hospital for 'pain managment' to me that sounds like palitive care, you've got weeks not years. And everybody is being positive, they'll get it right etc. Thats Mum, Dad, Husband etc.

So I feel like a cunt (its about me, makes me feel worse) I want to go visit for a while but it outside any plans I had. I dont want to have it seen that I'm visiting before you die..

But you can't visit when they are gone... And phone calls etc don't cut it, other than being there in person

Go see her. After my first round of chemo in '77 I had a friend diagnosed with liver cancer. I went to see Dwayne in the hospital. He looked terrible, had tube in his veins, was being treated with everything they could to save him. He died the day after I visited. I cam away saying the treatment (remember this was 1980) was killing him as much as the cancer. I vowed never to died in the hospital like that. ABout 4 uears later another friend got the bad news too. She knew I was a survivor and knew about Dwayne too. She asked me if she should take extended treatment or not. I just said I wasn't dying "in there." She died peacefully at home, with her children around. In the early 90's a sailing friend of mine developed prostrate cancer. I really stuggled going to see him. I knew he was BAD when he said beer just didn't even taste good anymore, Frank loved his beer. He died at home with hospice care. God bless those people. But I didn't see him often enough at the end...it haunts me. I have another tale but right now I just can't type it.... Go see her. Win ever.

[Mario]

Shute Man, in case you haven't got the message from everyone else ... go.
Visit because you want to visit.
Everyone will see it whatever way they want to see it - that's not yours to control, that's not your issue. Your issue is you (yes, it's all about you) and how you live with yourself in the days, weeks, years that follow.

Go. She's your sister for fuck's sake. As far as I'm concerned, all shit gets set aside for important family events like births, weddings, funerals, serious illnesses ... be there for her because you need to for you. ...and because it just may mean the world to her, too.

I second Bowgirl opinion.

Shute Man if you are in the try state area I will Volunteer to go with you, I know that coming from stranger it my sound Off yes because is a personal issue.

Dude I will drive you there and them maybe we can have a beer after.

regards Mario...

[Bowgirl]

I would like to thank everyone for the get well wishes...I have a long road ahead of me....learning to walk again is not fun...but on the bright side I still have my leg at this point...radiation starts in 11 days, for 8 weeks.....and it's a sad day as I have had to list my boat for sale after 5 enjoyable seasons....I just will not be able to handle a boat of that size, my leg will not be able to handle it and I have lost almost 2/3ds of my muscles over my whole body through this whole ordeal.....so I will be downsizing.

JUS

Downsizing is ok - you're still mobile and that's important. Baby steps (no pun intended). And there's nothing wrong with crewing, if you feel up to it.
Slow & steady, just keep going.

[Bowgirl]

Shute Man, in case you haven't got the message from everyone else ... go.
Visit because you want to visit.
Everyone will see it whatever way they want to see it - that's not yours to control, that's not your issue. Your issue is you (yes, it's all about you) and how you live with yourself in the days, weeks, years that follow.

Go. She's your sister for fuck's sake. As far as I'm concerned, all shit gets set aside for important family events like births, weddings, funerals, serious illnesses ... be there for her because you need to for you. ...and because it just may mean the world to her, too.

I second Bowgirl opinion.

Shute Man if you are in the try state area I will Volunteer to go with you, I know that coming from stranger it my sound Off yes because is a personal issue.

Dude I will drive you there and them maybe we can have a beer after.

regards Mario...

Hey Mario - good to see you. We all seem to be quiet when we're not on this thread. How are you doing? Is your Orchid blooming? I keep looking at mine, in hopes of something, but all I get so far is new leaves. Not complaining - at least they're still thriving - but in the middle of winter I'd love to see a blossom or two.

Have you ever seen a Lucky Plant? I have one that I put outside this past summer and it got HUGE and now it has flowers! I never knew it flowered!!
Here's a crappy picture, but you get the idea - it's usually in a 6" pot - this one is 4 feet tall!

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[riggert]

I need an answer.

Go see her.

When I was in the hospital I really appreciated friends and family visiting, lifted my day when I was feeling bad and provided me with many distractions.

[mainsheetsister]

I need an answer.

Go see her.

When I was in the hospital I really appreciated friends and family visiting, lifted my day when I was feeling bad and provided me with many distractions.

Agreed. More than anything else during the last weeks of her life, my sister was lonely.

Please go.

[riggert]

I would like to thank everyone for the get well wishes...I have a long road ahead of me....learning to walk again is not fun...but on the bright side I still have my leg at this point...radiation starts in 11 days, for 8 weeks.....and it's a sad day as I have had to list my boat for sale after 5 enjoyable seasons....I just will not be able to handle a boat of that size, my leg will not be able to handle it and I have lost almost 2/3ds of my muscles over my whole body through this whole ordeal.....so I will be downsizing.

JUS

All the Best.
Know the sadness of having to sell the boat. As my Wife does not sail and could not look after the old wooden yacht I pretty much gave the yacht to a guy with young children in his family - those kids learnt to sail on my old yacht.

[juswannagofast]

Thanks Riggert

Well I am sad...that's for sure, but I did weigh in what the fun factor was worth to me over the five years and the great times, the great friends, and great events that we took part in...I guess the best part was, that I was still getting may parents out on race nights and they are pushing 80.
So I have highly discounted the price on this boat, it's turn key, well looked after, great sail inventory eft.

Someone is going to have a steal of a deal.

And I have joined the Disabled Sailing Association of Ontario. So all will good.

JUS

[jetfuel]

Thanks Riggert

Well I am sad...that's for sure, but I did weigh in what the fun factor was worth to me over the five years and the great times, the great friends, and great events that we took part in...I guess the best part was, that I was still getting may parents out on race nights and they are pushing 80.
So I have highly discounted the price on this boat, it's turn key, well looked after, great sail inventory eft.

Someone is going to have a steal of a deal.

And I have joined the Disabled Sailing Association of Ontario. So all will good.

JUS

Where do you live?
I am in Toronto and you are welcome to come sailing with me anytime on my Figaro
I am a survivor too and would be pleased to sail with you

[jetfuel]

Been in remission for 3 yrs now

[RockHead]

Well, here we are. Five years later.

"Congratulations! You have 'graduated' to long-term follow-up. You can now think of yourself as a cancer survivor, not as a cancer patient!"

That's the opening line of the first page of the information packet we received yesterday at MassGeneral during the Pebble's intake into the Long Term Follow-up Clinic. Their emphasis. Wow. I can finally speak the words-

Remission.

Survivor.

Congratulations Trent! DX 1/21/08.

Thank you to our heros:

Dr. William Butler, neurosurgeon

Dr. Allison Freidmann, hemo oncology
Dr. Nancy Tarbell, radiation oncology
Mary Jo Gonzales, PNP
And all of the staff at MassGeneral Hospital for Children.

L to R: Me, Dr. Freidmann, Pebble, Mary Jo, Dr. Tarbell

Mere words of thanks are entirely inadequate. There were long hugs all around.

The joy and relief of the oncologists while discussing his minimal learning difficulties was palpable. When a world renown specialist says, "I really worried about this little guy a lot." it reinforced how lucky we are. And how caring all of the staff are, even the top docs. Their patient's outcome matter deeply to them. I don't know how they can do what they do every day, when all outcomes are sadly not as good, as we here know. But it's obvious that the days like this are uplifting for them as well. I think they understandably put up a wall for self protection, which they're able to finally lower at this point.

We had the most extraordinary lunch yesterday, after his hearing test. We're sitting in the MGH cafeteria, waiting for our appointments and eating pizza. It's crowded, a soft spoken young black gentleman asks to share our table, and inquired "Why you are here today?" I tell him about Trent's brain tumor, treatment and what we're doing today. He asks some rather more detailed questions. Turns out he's British, a Cambridge educated geneticist who came to MGH to research brain tumor treatment. Thank you Lawrence. I was left in tears for the work of the otherwise faceless, unthanked people working in the labs for us, before even seeing the folks that literally saved the Pebble's life. It was a precious opportunity to shake someone's hand and say, "Thank You. Your work matters, as you can see."


So fortunate to have this incredible place, filled with incredible people.

So fortunate to be be able to call my son a survivor.

Thank you to all here who have been so loving and supportive. We couldn't have done it without your help too.

[mainsheetsister]

Much love to you and your precious children, Dan.

[dacapo]

Well, here we are. Five years later.

"Congratulations! You have 'graduated' to long-term follow-up. You can now think of yourself as a cancer survivor, not as a cancer patient!"

That's the opening line of the first page of the information packet we received yesterday at MassGeneral during the Pebble's intake into the Long Term Follow-up Clinic. Their emphasis. Wow. I can finally speak the words-

Remission.

Survivor.

Congratulations Trent! DX 1/21/08.

Thank you to our heros:

Dr. William Butler, neurosurgeon

Dr. Allison Freidmann, hemo oncology
Dr. Nancy Tarbell, radiation oncology
Mary Jo Gonzales, PNP
And all of the staff at MassGeneral Hospital for Children.

L to R: Me, Dr. Freidmann, Pebble, Mary Jo, Dr. Tarbell

Mere words of thanks are entirely inadequate. There were long hugs all around.

The joy and relief of the oncologists while discussing his minimal learning difficulties was palpable. When a world renown specialist says, "I really worried about this little guy a lot." it reinforced how lucky we are. And how caring all of the staff are, even the top docs. Their patient's outcome matter deeply to them. I don't know how they can do what they do every day, when all outcomes are sadly not as good, as we here know. But it's obvious that the days like this are uplifting for them as well. I think they understandably put up a wall for self protection, which they're able to finally lower at this point.

We had the most extraordinary lunch yesterday, after his hearing test. We're sitting in the MGH cafeteria, waiting for our appointments and eating pizza. It's crowded, a soft spoken young black gentleman asks to share our table, and inquired "Why you are here today?" I tell him about Trent's brain tumor, treatment and what we're doing today. He asks some rather more detailed questions. Turns out he's British, a Cambridge educated geneticist who came to MGH to research brain tumor treatment. Thank you Lawrence. I was left in tears for the work of the otherwise faceless, unthanked people working in the labs for us, before even seeing the folks that literally saved the Pebble's life. It was a precious opportunity to shake someone's hand and say, "Thank You. Your work matters, as you can see."


So fortunate to have this incredible place, filled with incredible people.

So fortunate to be be able to call my son a survivor.

Thank you to all here who have been so loving and supportive. We couldn't have done it without your help too.

a great day...and it looks like the end of the great day was pizza.....sweet.....

[Bowgirl]

Congratulations, Pebble! A chip off the old Rockhead

Fabulous news to go from "patient" to "survivor" «happy dance»

[SA Lurker]

So fortunate to be be able to call my son a survivor.

Wonderful news, RH!
Blessings all around!

[Boomberries]

Awesome update RockHead and Pebble. Best possible news!! Thanks for sharing your good news here.

Most of us are affected in some way by cancer .... self, family, friends, co-workers. I found this website helpful recently. No doubt lots of helpful sites out there.

http://parentingwith...ses-caregivers/

[Boomberries]

Today, the three year old son of my best friend, was diagnosed with cancer. It`s a Wilm`s tumor. Waiting for staging, to check if it has spread. Then will be the decison re: sequence of surgery, chemo, radiation. 90% survival after all that, if it was caught early enough.

Hearing of triumphs here is very inspiring to others.

Hugs your kids again, and tell them how much you love them : )

[Bowgirl]

This was shared with me by a friend today. - Zach's story can be read here: http://www.twincitie...ye-through-song .

[Boomberries]

Great link Bowgirl. He is an incredibly inspiring young man. He just released this follow up song ...

[RockHead]

Thank you all

And best of luck for your friend's son Boomberries. PM me if your friend would like to talk to another parent who's been through it. It was one of the things that was very helpful for me going through it.

Thanks for sharing those videos, very touching. My eyes seem to be leaking once again.

[Fritz]

Rockhead, So Happy for you. The Pebbles gona kick your butt on the racecourse someday!
Fritz

[shaggybaxter]

I need an answer.

I live quite away from my Sister that is cancer fucked... she'll die from it, its all about when.

At the moment she is in hospital for 'pain managment' to me that sounds like palitive care, you've got weeks not years. And everybody is being positive, they'll get it right etc. Thats Mum, Dad, Husband etc.

So I feel like a cunt (its about me, makes me feel worse) I want to go visit for a while but it outside any plans I had. I dont want to have it seen that I'm visiting before you die..

But you can't visit when they are gone... And phone calls etc don't cut it, other than being there in person

SH,
My father died last year from cancer, I posted in this thread at the time.
I didn't want to go see him as I hated seeing him like that near the end, but something made me do it.
I can tell you it was the best thing I have ever done.
He couldn't talk but I told him how much he meant to me and simply sat with him for an hour. I left with an overwhelming sense of peace,almost like I could accept it and move on.
He died 7 hours later.
Every now and then I feel like he is watching still, and I can embrace those thoughts without any feeling of guilt or remorse.
If you don't do anything else in life, please Shuteman, for your sake and hers, go and see her.
Hang on for a tick......(shuffle shuffle scrape)....I'm on my knees and begging you.
Please.
Greg

[Bowgirl]

A wee bump. Just checking in. Charlotte - how are you making out?

[Bowgirl]

Zach's battle is over, but not before he made a lasting impression.

 

http://www.cnn.com/2...x.html?c&page=1

 

 

 

This was shared with me by a friend today. - Zach's story can be read here: http://www.twincitie...ye-through-song .