Thanks for the rep everyone. Hope you never have to experience it, but there is good literature if you do. It helped me feel like I had done what I could.
Euterpe how awful, please let us know if you need someone to listen. My dad died just before Xmas too (unexpectedly, not a long illness) so I know the strange feeling of associating Xmas carols with grief.
I think I will have a snack and take a nap before I eat and go to sleep.
It's so hard, it's just so hard. But I believe that everyone does their best. You did, surely, for your friend.
I have to ask regarding your sister-in-law - has she and the family undergone any sort of genetic testing? I don't know what types of cancer she has had, but there may be an underlying condition, in which case, early detection for anyone at risk would be a good idea.
Can anyone reiterate what Jesse's other YouTube channels were? I know there were 1 or 2 others besides the Spazacataz account that show more of his skating, and I think they were probably mentioned in his original thread but are now buried there.
BARK LESS. WAG MORE.
Thanks for your long and detailed post, Rob. I have been lucky in that my family and close friends have been relatively healthy. I can't help but feel that my destiny is to get closer to illness and death via experiences like this and with Mevrouw. I feel these are all tests and learning for me becuase I will be called upon and needed by my loved ones in the future. I hope when the time comes I'm as prepared to embrace the challenge as I feel I can be.
Thanks to all for sharing.
I send my support to all here who are dealing with similar issues.
I know how difficult it is, through personal experience.
Everyone copes differently; and there are multiple ways to do so.
Each person must decide the approach best for them.
Is there anyone near enough that plans to attend the memorial tomorrow? If so, would you mind sharing your thoughts on the service with us?
I also hope that someone nearby can go.
Much of the town may attend, which is a testament to the impact of Jesse's life.
Jesse was a fabulous skater and his spreadeagle is awesome
I do hope the memorial service for Jesse brings some comfort to his family and that the crystal star will shine brightly. (((Spaz family)))
'The one. The only. Daisuke Takahashi ' Chris Howarth, EurosportUK
Thank you for all your kindness and prayers, FSUers. Yes, my husband's family has had genetic testing which found Lynch syndrome, a deadly cluster of cancers. One branch of the family has been nearly wiped out, some in their early 30s. One of my daughters has the gene and one doesn't; my son refuses to be tested for the gene but undergoes annual screening.
Having the gene requires constant vigilance and testing. My sister-in-law survived ovarian, uterine, thyroid and colon cancer over a 30-year span until finally the disease got to her pancreas. The initial diagnosis was two years ago. They removed part of her pancreas and did a year of chemo. She was OK until recent tests disclosed a recurrence. She was having surgery today to determine if further surgery is possible. If not, she will have more chemo.
I pray that all goes well today.
I am very close to someone with Lynch Syndrome. At 24 she found out she had colon cancer. She had to have 80% of her colon removed. Thankfully, they were able to reconstruct without her needing a colostomy bag. And there were no lymph nodes involved. But, she has to have a colonoscopy every 4 months. A PAP smear every 4 months. And other frequent screenings. She has frequent stomach pain and her immune system is not as strong as it should be. She is unaware of who, in her family, may have passed on the gene. She is not from the US and her family's records are not available. From my understanding the most common Lynch associated cancers are gastrointestinal and reproductive. Though, I suppose there is no set in stone rule with any cancer.
One of the biggest problems with Lynch Syndrome is that it effects people so young. Often the cancer goes undiagnosed too long, because doctors don't expect to find cancer in such young people. That was the case with my loved one. She had pain for almost a year before they finally did a scan and found the mass. They kept looking for IBS and Crones, or thinking it was psychological.
That was a great post (rob) I would have never been able to say that so well. My mother died in July at home (alz) and it was very hard to keep up with her care at times. Even with caregivers and hospice.
The friend of mine who was in hospice care had quite a different experience than what Rob described that her friend had. I wasn't there, since my friend, who entered hospice care four months before she died, had decided to see a limited number of people while there, and one was designated as the official news giver. The news giver was very straightforward -- we're talking New Yorkers here -- and gave pointed updates. The overall gist was that while my friend did go through some the psychological stages Rob describes -- she was diagnosed a couple of months before she entered hospice care, and during that time she went through the rest -- there was as much emphasis on psychological care as there was physical care. While the medical staff was adept at treating patients sensitively, they were not the primary psychological care givers. There was also the recognition that when a patient is dealing with bad news or decisions of any kind, a data dump wasn't very useful; they were careful to give as much as the patient could handle and process at the moment, and they were also vigilant about revisiting the possibilities for treatment and non-treatment throughout the limited span of the patient's life. My friend was also in charge of pain management, in which she was able to self-administer pain killers in lower dosages without relying upon medical staff to respond to calls.
The news giver told us after our friend died that she had become more of an observer/logistics person in the second half, as our friend focused on her fellow patients.
My friend had pancreatic cancer, and I'm not suggesting that hospice care made her physical death any prettier.
There was also a hospice in Seattle called Bailey Boushay House which had a great reputation during the AIDS crisis, with a lot of community support/volunteers, which also meant a lot of hands on participation and watchful eyes. Some friends this weekend weren't sure whether it still had the same reputation, since there are so many fewer AIDS patients, and the patients served now are much more diverse now with less community involvement.
Last edited by kwanfan1818; 11-13-2013 at 12:55 AM.
"The team doesn't get automatic capacity because management is mad" -- Greg Smith, agile guy
A couple weeks ago, Jesse asked me to paint a portrait of him & Porki, as a Christmas present for his mom. I'm shipping it out to her today. I dearly hope it does him justice, and brings her some comfort & memories of better times. SO many thanks to the other members who donated to cover the costs of framing and shipping, and coordinated all of that so I could just focus on getting the painting done. If you'd like to see the finished portrait, here is the link:
Omg, so that's what he looks like, he looks like Jeffrey Buttle imho. Gorgeous painting, backspin, and what a nice surprise and early Christmas gift it will be for his mom! *insert heart emoticon*
This reminds me of the time I was at college, and a special close friend of mine asked me to hold onto the pictures she took over the summer (she was like a little sister to me; I was her orientation instructor when she was a freshman), and she asked me if she could borrow $5 that Friday night so she could go out with her boyfriend, then later on in the early morning September hours as I was sitting in the dorm (I was the R.A.) I heard the news that she & her boyfriend had gotten into a horrific motorcycle accident (neither was wearing a helmet). And their families pulled the plug on their life support less than a week later. Well after sending her mom & siblings a bouquet of flowers, I remembered those 50+ pictures she had me hold onto, and I wrote a heartfelt long letter to her mother about Kim and sent the pictures along with it, hoping they would be a nice gift/surprise for her from Kim.
God works in mysterious ways...