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Heaven can wait

Sailing Anarchists Affected by Cancer

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i'm here. i'm ok. there are NO new lesions on my liver, the ER doctor was wrong. sorry for the silence, just been wiped out from a successful completion of round 6 of chemo. working on blog update.

That's what I was expecting (hoping!) to hear! ER docs are great when blood is spurting and bits of you are hanging by a thread. Not so much with the subtleties of scans like this.

 

6 rounds done. Fantastic! Hang in there.

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Thats Great news Catherine...keep at it! :P

we are off to the oncologist on Friday to learn thoughts on Helen's next phase of treatment... scaring the shit out of us at the moment... prospects of her being an inpatient for 6 weeks at a time for maybe 6/8 months make things look really grim. maybe we are being peimmistic.. We are trying to put it out of our minds and not read about it before we know more about what is actually planned. :(

The internet can be a scary place in times like this. It is full of stories that one doesn't want to hear. Sometimes ignorance is bliss.

Gerry

As bad as weeks in the hospital sounds, you'll adapt. When we went in for long stays for the Pebble, we would re-arrange the furniture in the room. Freaked out the staff when we first did it. After 2x, they had it set up that way for us when we arrived! As the non-patient, I kept a bicycle locked to a rack outside, and would go for a 7-10 mile ride every couple of days to get some fresh air and exercise. You'll get to know the nursing staff, custodial staff, food service staff, cafeteria staff all very well. Years later I'm still in touch with some of my son's nurses. As much as you might hate them at times, they truely are angels of mercy who know all sorts of tricks -both medically and to help you survive long stays.

 

Good luck on Friday

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I had to chuckle a bit reading your latest blog, it brought back some memories, not funny at the time, is a bit now. I was in the hospital with gangrene and mrsa. Had 2 surgeries to clean out the inside of my foot, so sleep for a few days was all drug induced. First night sleeping on my own, I was in a sound, dead, wonderful sleep, and a nurse wakes me at 5am to ask me on a scale of 1-10 what was my pain level. I'm sure that there was a considerable amount of sarcasm and irritability when I asked her what she thought it was when I was sound asleep. :angry: I'm sure it was part of her paper work that needed to be done before the end of her shift, but really??!!

 

About 10 years ago I had ACL reconstruction on my knee. Total walk in the park compared to what's going on with our friend Catherine, but I was in the hospital for 23 hours.

 

All night, every two f***ing hours, just about the time the pain meds were at their peak and I was getting a nice nap, this matronly nurse would come in, wanting me to pee. "But I really don't need to pee." "Oh you have to try to pee so we can measure your urine output." "But I'm in here for knee surgery, there is nothing wrong with my kidneys or bladder, and I peed for you two hours ago!" No joy. Had to GET OUT OF BED AND PEE IN THE LITTLE PORTA POTTI TYPE UNIT. Of course moving pretty much negated any relief I was getting from the meds. Fortunately, Mrs. Matronly Nurse was usually willing to give me some more meds before she left each time. Kinda like a reward for peeing.

 

Shift change, new protocol, new nurse, this time a gay guy. NTTATWWT, but could I get him to give me another dose of pain meds FOUR HOURS after the last nurse's shift ended?? Hell no, he was totally MIA, until it was time for the ortho surgeon to come in for a quick check on me. Then Mr. Nurse is all gushing and goo-gooing over Dr. Knee, "Oh, we just LOOOOOOOOOVE him!!!"

 

Yup, Mr. Nurse was too busy with his woody over Dr. Knee to get me my damn Oxys! And that is when I learned that laughter is indeed the best medicine.

 

Catherine... so glad to hear that the ER doc was wrong and that you are progressing well with the treatment. Kick some butt, girl!

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i'm here. i'm ok. there are NO new lesions on my liver, the ER doctor was wrong. sorry for the silence, just been wiped out from a successful completion of round 6 of chemo. working on blog update.

 

Great news. We've never met, but I check the thread every morning and send some positive vibes your way -- *really* glad to read this post.

 

Jack

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MSG, 3 weeks now since your last blog post. What's going on? The longer you wait the harder it gets to write about. Help us out here Catherine, we're pulling for you, just need to hear something to ease our concern. Cheers Winever.

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About 10 years ago I had ACL reconstruction on my knee. Total walk in the park compared to what's going on with our friend Catherine, but I was in the hospital for 23 hours.

 

All night, every two f***ing hours, just about the time the pain meds were at their peak and I was getting a nice nap, this matronly nurse would come in, wanting me to pee. "But I really don't need to pee." "Oh you have to try to pee so we can measure your urine output." "But I'm in here for knee surgery, there is nothing wrong with my kidneys or bladder, and I peed for you two hours ago!" No joy. Had to GET OUT OF BED AND PEE IN THE LITTLE PORTA POTTI TYPE UNIT. Of course moving pretty much negated any relief I was getting from the meds. Fortunately, Mrs. Matronly Nurse was usually willing to give me some more meds before she left each time. Kinda like a reward for peeing.

 

Shift change, new protocol, new nurse, this time a gay guy. NTTATWWT, but could I get him to give me another dose of pain meds FOUR HOURS after the last nurse's shift ended?? Hell no, he was totally MIA, until it was time for the ortho surgeon to come in for a quick check on me. Then Mr. Nurse is all gushing and goo-gooing over Dr. Knee, "Oh, we just LOOOOOOOOOVE him!!!"

 

Yup, Mr. Nurse was too busy with his woody over Dr. Knee to get me my damn Oxys! And that is when I learned that laughter is indeed the best medicine.

 

Catherine... so glad to hear that the ER doc was wrong and that you are progressing well with the treatment. Kick some butt, girl!

 

Going a little off topic, but my other (better) half is currently doing research into pain control after elective knee surgery (total knee replacement in the trial she's running). If you were signed up for her trial, then you'd get to be in charge of your own pain pills (although not the Oramorph, which still has to be given out by a nurse). Of course, you'd also have a bunch of physios determined to get you mobilised as quickly as possible (they expect you to be up and starting to walk the morning after surgery, as the quicker people get mobile after knee replacement, the fewer complications they get).

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Sun is coming up, a new day begins and thought of you. That's all. A great way to bump the thread and let you know we all have our own peculiar lives and concerns but the denizens of SA do not forget the important things.

 

Hope you have a fine day.

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Sun is coming up, a new day begins and thought of you. That's all. A great way to bump the thread and let you know we all have our own peculiar lives and concerns but the denizens of SA do not forget the important things.

 

Hope you have a fine day.

 

 

+1

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[quot

 

Going a little off topic, but my other (better) half is currently doing research into pain control after elective knee surgery (total knee replacement in the trial she's running). If you were signed up for her trial, then you'd get to be in charge of your own pain pills (although not the Oramorph, which still has to be given out by a nurse). Of course, you'd also have a bunch of physios determined to get you mobilised as quickly as possible (they expect you to be up and starting to walk the morning after surgery, as the quicker people get mobile after knee replacement, the fewer complications they get).

 

Had knee replacement surgery 1/4/12. That afternoon they had me sitting up on the side of the bed. Walker and first steps the next day. 3 days in hospital. Able to negotiate limited stairs on release. 3+ weeks out, walker is gone, down to a cane, 65 staples are out of my knee, therapist has cut my rehab from 3 to 2 to once per week. Now if I cold just get off of the damn coumadin and these funny socks all would be fine.

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CLL survivor here, kicked its butt, for now. . . . .

 

A version of leukemia, there are many, mine was a relatively easy one, six months of chemo and remission, a new lease on life.

 

Best i can offer others is the advice to keep a good attitude, sail your own course, take advantage of the wonders of madern medicine, my treatment worked.

 

Anyone here come up with with cll, give me a ring 309 737 4579 brian ttens, chi

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CLL survivor here, kicked its butt, for now. . . . .

 

A version of leukemia, there are many, mine was a relatively easy one, six months of chemo and remission, a new lease on life.

 

Best i can offer others is the advice to keep a good attitude, sail your own course, take advantage of the wonders of madern medicine, my treatment worked.

 

Anyone here come up with with cll, give me a ring 309 737 4579 brian ttens, chi

 

 

Brian what was you white cell count like? I'm doing Neupogen so i can get my last Cycle. :D

 

Namaste Mate!

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Catherine:

I am worried about you. Please tell us what is going on. If it is bad we can take that. I know bad. Maybe we can offer you some,,,,fuck, I don't know what we can offer. Love maybe. I don't know the right words.

I know that someone we have grown to care about is hurting. We hurt with you. If you are too sick or depressed to respond I can understand. Maybe you could wave your little finger. Ok the other finger. Just wave a finger when you feel like it.

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Hey Y'all!

Thanks for the love and inquiries for updates.... Catherine is doing quite well she is just constantly fatigued and achy so you can understand if she is not in the typing and blogging mood...

Round 8 starts tomorrow! We are making good progress and I am very encouraged.... 2/3s done or something like that.... Another ct scan scheduled for feb 9th and we should have an update a week after that... In case anyone wants to join in, the mantra is "NOTHING BUT GOOD NEWS" whenever we are headed to a dr appt... It works when I take my dad and his broken ankle to the doc also....

ok, thanks again folks

PEACE

Daniel

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Hey Catherine, just because you don't hear from me very often, just know I think of you often, and always whisper a little prayer for you for the day. Keep fighting, from what I am reading, you are doing great!

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Catherine shows Zeke her favorite website (S.A.):

post-55907-062908400 1327982141_thumb.jpg

 

Zeke wonders why there isnt more food on the SA site:

post-55907-035057400 1327982343_thumb.jpg

 

Nap time:

post-55907-090555300 1327982449_thumb.jpg

 

Thanks for sharing the pictures! Thinking about you Catherine, keep Zeke close, he looks like good company!

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To share some positive news.

A school-time friend (mate, here) after battling lymphoma has been given the all-clear after having a grapefruit plus lump major pain and secondaries both sides of the diaphragm. He is still dealing with the emotional down that goes with having zero immune anything, but is now clear to go forward in the understanding the sucker, as he called it, is beaten.

Except he cant, not quite yet, lost best part of 25 kilos, has no strength and no resiliance. But its happened for him and all good. He is one quiet achiever and not giving up just yet.

 

Stay with it, many things are possible, he says now.

Best wishes Catherine.

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OK, that is a good way to start a Tuesday. I was getting kind of worried.

 

Thanks for passing along how Catherine is doing.

 

Bob, I'm sure your cooking would do her good.

 

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Catherine shows Zeke her favorite website (S.A.):

post-55907-062908400 1327982141_thumb.jpg

 

Zeke wonders why there isnt more food on the SA site:

post-55907-035057400 1327982343_thumb.jpg

 

Nap time:

post-55907-090555300 1327982449_thumb.jpg

 

Thanks for the update and photos, Dan. Nothing but good news. Zeke looks like a good boy!

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Catherine shows Zeke her favorite website (S.A.):

post-55907-062908400 1327982141_thumb.jpg

 

Zeke wonders why there isnt more food on the SA site:

post-55907-035057400 1327982343_thumb.jpg

 

Nap time:

post-55907-090555300 1327982449_thumb.jpg

 

thank you for the update, you go Catherine, Zeke is a great friend.

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I wear the hat to remind myself.

 

Maybe we should sell those hats with the proceeds to MSG??????

 

I'd buy one.

 

+1..+5

 

We all need tio be reminded to HTFU. I know I do and I certainly know that most of the posters to this sorry assed site need to HTFU.

 

How 'bout someone with a distribution system stepping up and offering the HTFU hats with 80% of the proceeds to MSG????

 

Mark?

 

Sailing Pro Shop?

 

C'mon, HTFU.

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Dan, BIG thanks for the update, I moved the needle on the MSG meter backed to "watch carefully" from it's "WTF" setting. BIG thoughts of be healthy coming to ya MSG. The fatigue takes some time, hang in. Cheers, Winever.

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3 1/2 years post-treatment, the Pebble is starting to catch back up on height for his age. He made it onto the growth chart, 1st percentile. Whoo Hoo!

 

Go the Juice!

Daily HgH injections, one of the secondary effects for him.

430656_2567772239046_1396399381_31964309_1824292641_n.jpg

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Big Love and many hugs from South Texas MSG!

 

Go the Catherine!

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Good progress. Ever forward, ever onward.:) I will try to make a donation by the end of the week.

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Catherine, When I was 18, 32 years ago, I had a very mild form of cancer. It was really easy compared to what you're going through. We don't know each other, but I think of you often, I think because of the depth of your suffering. I'm sorry.

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Monday morning going in to have my thyroid removed. Don't mind the operation so much but the catheder is creeping me out

They told you wont feel a thing because you're out but I then reminded the doctor I will when you remove it.

The doctor then said I may like it depending on who did the task.

I told him no matter how fucking hot she was I would not be enjoying it

He then remarked it was free as I paid for it to which I answered

If I was paying to have someone to play with me it certainly would not be the act I would request!

Have a good weekend Catherine.

Everyone else in the same boat

Drive!

More next week lol

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Ah, my Sunday morning thread bump. Far more satisfying than I currently (let's just say it's been quite a while) find church attendance.

 

This week, obvious and continuing warmest and best wishes to Lady C and her battle but also extended good thoughts to all to rest fighting the fight.

 

Cancer cuts a wide swath through this community and it's victims merit our concern and support.

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That's great MSG!

It's odd being part of the U.S.A. population trying to GAIN weight instead of losing it. We are the One Percent!

 

cheers.

 

 

BEWARE the nightly ice cream sunday with chocolate sauce or caramel.....it will catch up....and become habit forming! Like I need another habit, riiiiight!

 

Cheers, Winever.

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Thanks for the kind wishes everyone. My very best going back at you and all of us who are battling cancer. An update on things at my end:

 

http://gothecatherine.blogspot.com/

 

"Good news, I gained 6 pounds and have broken the 100 pound barrier..."

 

That is Great news Chatherine, I'm up to 127 from 115, hope i can reach 130 by next moth, i will stop there because I don't want to be bump from the foredeck Job, :)

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We are taking a little 9 month old girl who has cancer and her family out on our boat this Sunday as part of Cruise for a Cure which supports a children's cancer organisation called Cure Our Kids in Sydney, Australia.

 

Hopefully it will be a bit of a day off (if there can be such a thing) for the parents.

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Dan,

I've followed this from the start and can say with great confidence that you have done more than I could have. You are my hero and I know that in a day or two you will regroup and continue to be the support that Catherine needs...I can't imagine anything else. You both are in my prayers.

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Hang in there Daniel,

 

My prayers are with you and with Catherine. Being the support person is a long, confusing and tough job. But I am so thankful for my family and friends. They are my rocks. I would not have gotten through my cancer without them.

 

Please take care of yourself too. It is OK to feel what you are feeling. You are human and you sound like a very good and kind human.

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Daniel,

Any of us would consider ourselves fortunate to have a friend half as supportive as you have been. It's emotionally and spiritually exhausting. I remain perhaps naively convinced that those who sow kindness will reap a similar harvest somehow sometime in the future. Guess I'm fucked.

Good luck with all your trials. Hang in there.

Best to C. We'll do our best to annoy her even more.

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We are taking a little 9 month old girl who has cancer and her family out on our boat this Sunday as part of Cruise for a Cure which supports a children's cancer organisation called Cure Our Kids in Sydney, Australia.

 

Hopefully it will be a bit of a day off (if there can be such a thing) for the parents.

As the parent of a cancer survivor who was 2 at diagnosis, I can tell you most assuredly that it will be a bit of a day off for the parents, and appreciated more than you (or maybe even they) will realize. An hour out of the hospital in my bike was a joy. A rare day on the water was nirvana.

 

Dan the Man, I didn't see the post that you removed, but based on the few comments, I suspect I might have some idea. As a caregiver for the Pebble (and his mother, when she broke her back), I know it is easy to feel overlooked, overworked, possibly under-appreciated, and just plain worn down. Few realize and fewer acknowledge the energy and strength that it takes to always be there, to always be positive, to deal with the overwhelming crush of a crash course in medicine, the emotions (yours and Catherine's), the laundry, the vomit, the shit (literal and figurative) that you deal with and you can't complain about. I know. It's easy to feel lost in the shuffle. Hang in there mate. Go the Dan!

 

 

Two things I would recommend-

1. Take some time for yourself. As I mentioned above, I would take an hour to ride my bike around Boston and Cambridge. A HUGE relief, some exercise, endorphins, sun, fresh air. I would also leave the hospital for a meal every once in a while. Simple little things, a few moments for myself really helped me keep my sanity, and kept me fresh. Find what's right for you.

2. http://www.lotsahelpinghands.com/ A great way to organize all of those people who offer to help, but you feel like a schmuck to ask for help. You get people who offer to help to sign up to the site you create, then you can post requests for whatever -rides, meals, laundry, lawnmowing, housekeeping, whatever and everyone in your community gets an email with the requests. The site allows things to not get double booked. You don't have to remember who offered to do shit, and you don't have to feel like a schmuck for asking for help, or overworking a few people. A phenomenal tool, my church's care group uses it now.

 

Maybe I'm mis-reading the comments, but no matter what, take time to take care of yourself Dan.

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Yes, thank you all again for the kind words. MSG never even read my post she just heard that I'd posted something about her and asked me to remove it. She will tell her own story in her own time.

What she did not know was that most of what I had written was about my own hard time having lost a dear friend just yesterday and feeling at a loss of strength.

I'm writing it again now just to let ya know that yes as Rockhead intuited, Im feeling useless. Fortunatly Catherines family is here and near to help pick up the slack...

Thanks again all and especially Rockhead, you obviously know because you know.

much love and blessings for all

PEACE

Dan

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I;m sorry Dan. I should have read what you writ before bitching about wanting to keep my latest medical disaster known as my body under the radar for a bit. Just not ready to share yet.

 

I'm sorry. There are some massive shoulders here that have plenty of room to carry everyone who needs it.

 

I love you and would NOT be able to have triumphed thus far without your friendship and unconditional love.

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Sun is out this morning so it's easier to think that the promise of spring, warmth, renewal and healing are clearly on the upswing and imminent.

 

Easier to embrace positive notions on a day that's not so gray and unwelcoming. Hope you two can sit in the sun and soak up some of that positive energy and hope.

 

I can't remember the last time I was so Hallmarky/Newagey. I need some weed.

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The positive energy of this thread, the love and support for MSG, is wonderful. After all the chemo, a bone marrow transplant and months of rehab/recovery, our friend Christian has relapsed and has been sent home to die. There is nothing more the medical community can do for him in his fragile state other than " make him comfortable". But there is the power of the human spirit; please pray for him.

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Yes, thank you all again for the kind words. MSG never even read my post she just heard that I'd posted something about her and asked me to remove it. She will tell her own story in her own time.

What she did not know was that most of what I had written was about my own hard time having lost a dear friend just yesterday and feeling at a loss of strength.

I'm writing it again now just to let ya know that yes as Rockhead intuited, Im feeling useless. Fortunatly Catherines family is here and near to help pick up the slack...

Thanks again all and especially Rockhead, you obviously know because you know.

much love and blessings for all

PEACE

Dan

Cheesy quote, but it's particularly true for care givers- "Depression is not a sign of weakness. It is a sign that you have been trying to be strong for too long." Dan, it's important for you to take time to recharge your batteries. Now, and on a regular basis. Yeah, I know... smile.gif Several people passed along this advice to me, and I took it to heart, I'm glad I did, it helped me through.

 

It's also important to take the time to nurture the important relationships in your life, while you're helping Catherine. That goes for you too Catherine. It's not easy to remember, nor to do in the midst of all that's going on, but it's important. I wish someone had given me THAT advice, or if they did, that I had heard it... Maybe my marriage would have survived. Maybe not, but maybe we wouldn't have let it fall by the wayside.

 

I still don't know how the hell the staff in the oncology clinics do it day after day. Especially in Pediatrics. And the PICU staff? All I know is that there is a special place in heaven for those who support those living through hell on this earth.

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