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Living with Illness Coping with disease, getting help, dealing with family, staying optimistic, quality of life, hospice care

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Old Mon Jun 13, 2011, 02:03 PM
Karenish Karenish is offline
Join Date: Feb 2011
Location: Stafford, United Kingdom
Posts: 100
laughter is the best medicine!

Laughter is essential for so many positive reasons, laughter actually releases endorphins into the blood stream, even a genuine smile can do that too. I am naturally a giggle box, and have found it an absolute life line through all of this...
stories to share.
whilst in isolation i was getting extremely bored, so, when the nurses were doing their handover outside the rooms I would stand at the door looking through the window and would slowly bend my knees so it looked as if i was going up and down in a lift, it would crack them up everytime - i even heard the head nurse say one evening "and this is karen miles, well, she is being karen" and everyone smiled which i thought was such a positive but funny moment.
Another is always at transfusion time, I sit in the chemo unit ordering red wine and a bag of gin and orange - then when they put the piriton in I will smile inanely and say something on the lines of being a little drunk, makes everyone smile. On the ward, I got so bored one day (I am an occupational therapist, so the clinical staff expect me to be creative) I got those little "hat" things that people pee or be sick in and made it into a hat - the nurses faces when they walked in with the consultant and I just sat there wearing it was a picture. I decided that this disease was never ever going to rob me of my personality and although it has tested me I will keep that resolve. I am no way out of the woods yet and am now 3 months post ATG with no real signs yet although whites and nutrafils have improved, but as I say to everyone, I am special my marrow is special and in a very highly theatrical voice I finish with "so we will improve our counts when we want to" and then I stomp my foot!!!
I love an audience...can you tell?
have a lovely day all xxxx
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Old Mon Jun 13, 2011, 06:44 PM
Darice Darice is offline
Join Date: Jun 2011
Location: Colorado Springs, CO
Posts: 91
More BMSCT humor

My husband got his stem cell transplant in Omaha, Nebraska, and we spent the 2+ months together in a hospital room/suite with a mini kitchenette, etc., much like Neil described. Many of the transplant patients were dealing with nausea, again much like Neil described. Not my crazy German. One of our nurses came in to check on us the evening of the transplant (or maybe it was the next evening?). She found us sitting at the coffee table feasting on sardines and black bread. I think he is still a legend there.

She couldn't understand how anyone could eat anything like that anytime, never mind right after a stem cell transplant. One of our doctors was Dutch . . . he understood.
hubby 73, dx NHL 2001, CNS involvement. SCT (auto) 5/08 [dx UTUC renal pelvis, 2010/surgeries/MMC], MANY recurrences, chemos, surgeries, rad. dx t-MDS 3/11: IPSS 1.5 (Int-2); MDA 11, RCMD trilineage, inc. Fe, ring sideroblasts, 7q del/mono 7 (51.5%), 46,XY,t(6,17)(p22;q25)[4]/45,XY,-7[4]/46,XY[12].
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Old Thu Jun 23, 2011, 10:38 AM
cheri cheri is offline
Join Date: Nov 2010
Location: Tuckahoe New Jersey
Posts: 243
Just when I thought I'd heard it all.....

On last nights 11:00 news:

"Someone left 2 trash bags of human vomit outside of a "Bed Bath and Beyond" store at a local mall.

One of those bags weighed in at 35 pounds."


Well, it just reminds me that there is always someone out there who is worse off than I am!
Cheri Age 54; dx Oct 2009 AML, induction chemo only;dx MDS July 2010,- PRBC transfusion dependent; Results BMB 8/4/11--- 6-8% blasts; Danazol 100 mg 3xday; quit Exjade/ GI distress; platelets holding 40's; Fluctuation in blasts in blood--Neupogen 3-4xweek; off Revlimid again! Procrit weekly
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Old Tue Nov 1, 2011, 04:19 PM
Juli F. Juli F. is offline
Join Date: Sep 2011
Location: Seminolle, FL
Posts: 4
My toe has no expiration date on it

So many things along this journey to remember, but one of my favorites is what more or less set the tone for my life. My first oncologist was supposed to be in touch with Moffitt Cancer Center as a consult for my chemotherapy. He wasn't, and when I found out, with much pushing he called. I was on the WRONG chemo! He had me on ESHAP and I should have been on Hyper CVAD. He stopped the first and admitted me to the hospital for four days of the second. It turned into 30 days with a stay in ICU. I had pneumonia, kidneys shut down, septic, temp of 105 and pulse of 238. Believe it or not they asked my husband if he wanted to call a priest he thanked them and said no, she will make it...and I DID. Wonderful, except when I got out the doctor said, "I'm going to put you on hospice and cut the chemo....you're not strong enough to take it and even if you made it through the chemo there's no way you'd make it through a BMT." THIS after I was just released from ICU! He also said I'd be dead by Christmas (three months). I went home and prepared for my lack of future. Then, after four days I said, "wait a minute, I'm calling that Doctor who confirmed my diagnosis at Moffitt Cancer Center". Dr. Eduardo Sotomayor refused to let me stop hoping and told me that I could make it. He put me through chemo at Moffitt only this time I was out in 5 days like it should be. After six arms I went into remission and had my BMT and was put under the care of Dr. Claudio Anasetti ~ NEVER could I say enough about these two wonderful, caring physicians. One year after my transplant I went to visit my former oncologist and when he saw me he almost fell over~ I told him, "This is the ghost of Christmas Past coming to say hello!" NEVER tell someone they are going to die, there is no expiration date on my toe! I am now two and a half years post transplant with testing due on Nov. 15. Please keep me in your thoughts and prayers that all will continue to be well. Smile ~ life is good.
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Old Tue Nov 1, 2011, 07:57 PM
donna j. donna j. is offline
Join Date: Sep 2011
Location: long island, new york
Posts: 110

After work last night I went to my hemotologist to begin my 3rd round of Vidaza. Much to my chagrin, he informed me my numbers were down, he was postponing the chemo and I needed a red blood transfusion. He gave me the paperwork to bring to the hospital in the morning. I drove to the hospital, alone, early this am, calling work as I drove, that I was getting another transfusion. Once in the hospital, still bummed out, I texted my son and brother to let them know, what was going on. My son texted back "Go With the Flow". I loved it!:
f68 MDS; abmt 1/12. ABO mismatch 11 mos. (70) transf. Ferr 3-5k. 8 phlebot. AGVHD to CGVHD. skin,eyes. lungs as of 10/13. muscle weakness &osteo long term steroids.photopheresis 2x wk as of 3-15.pred 20 eod,acyclovir, mepron, voriconazole, pantropazole, lisinopril, montelukast, anoro, azithromycin.
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