The Endgame
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Dear Adam
I’m so very sorry to hear of your loss. Your posts have moved me so much & I can feel the love you & Petra shared. Lainy posted a wonderful poem yesterday when I wrote about another dear CCF friend’s passing. Lainy, I hope you will forgive me if I copy it here, too:
Do not stand at my grave and weep;
I am not there. I do not sleep.
I am a thousand winds that blow.
I am the diamond glints on snow.
I am the sunlight on ripened grain.
I am the gentle autumn’s rain,
When you awaken in the morning’s hush,
I am the swift uplifting rush
Of quiet birds in circled flight.
I am the soft stars that shine at night.
Do not stand at my grave and cry;
I am not there. I did not die.This made me cry & then it made me happy.
I’m thinking of you & your children at this dreadfully sad time.
Julia x
I am so sorry to hear this news. Thinking of you and your family this morning. Hugs and prayers to all of you. I am glad that Petra was able to celebrate with you.
Adam I am so deeply sorry that Petra has Passed but am very happy that she had those wonderful events making more Memories for you and the children. She was a beautifully courageous wife and mother and know that she will always be around all of you.
If I should be the first to go,
And leave you alone, my Dear,
Let not your heart be lonely,
Nor in your eyes a tear.
Grieve not for me, my Darling,
IThank you again for your lovely replies. We certainly squeezedthose ounces. On 29th October, our daughter had her seventh birthday party. The hospice lent us an ambulance and a nurse so that Petra could go to the party. She had a great time.
After that her condition deteriorated but she was still with us on 3rd November, our daughter’s actual birthday. We took the kids and presents to Petra’s room and we celebrated together. Not long after I had taken the kids home and put them to bed, Petra died.
Adam…Byron said it so well: squeeze every ounce of good from each day. And, you are doing just that and your friends are being great friends by pitching in. On to the next lovely day.
All my best wishes,
MarionGreat to hear from you again Adam. One day at a time and squeeze every ounce of good from each one. Some days I feel really terrible, but I just think of what I was able to accomplish that day. There is always something I am able to do that I didn’t think I would.
Thank you all. Just read all your lovely replies.
This morning I took my mother-in-law and our two kids to see Petra. Whilst at the hospice, our friends show up with their two kids. My mother-in-law had to pack her suitcase so I brought her home and left our kids with our friends and their kids. They were going to stay for half an hour or so and they would bring our kids back.
Just had a phone call from one of the friends. They are still at the hospice and have been sat outside in the hospice garden having a picnic with Petra. I have to go and join in before our kids have to go to theatre (theater) school.
Adam,
I am so sorry to hear of the difficulties your wife is having. I am no expert on anything though I am finding that cc is a disease that can do unexpected things. There is no reason not to believe that cc might not let up and give your dear wife the clearness of mind he deserves. Call me naiive, I think that’s better than being pessimistic.
Regarding the 5-FU: If she is still taking that chemo, there was a very interesting study done at Moffitt Hospital (where I am now a guest) finding increased remission rates using a chinese medicine herbal concoction called “Bing De Ling” in concert with 5-FU. If your oncologist has an open mind I believe that he will agree that it bears trying. A link to information is here: http://www.ncbi.nlm.nih.gov/pubmed/16008516
Dr. Zhao, one of the study authors, just started giving me Bing De Ling along with acupuncture and other herbs (though I’ve had to stop taking it while in hospital).
Regarding your blessed children: It is so hard for grown-ups, let alone children, see the good things in someone so ill. There is a way to preserve the best of times for you and your children. I urge you, if you can, to bring a tape recorder (a video recorder is even better if your wife accepts it) to her bedside whenever she is coherent and able to talk. Ask her about her life – where she grew up: what was school like for her; how did you two meet; how did she feel when each of your children was conceived and born; what are her fondest memories of her children, you, and her life, etc. This is what I did over the course of several years with my grandmother once I’d started to see her decline. Grandma had amazing stories to tell about her journey to America, coming through Ellis Island, and starting a family. My wife and I lost Grandma quickly through medical complications. We get so much comfort, and my daughter has learned so much about her family, through these recordings.
Seeing their dear mother change so quickly before their eyes has to be traumatic to your blessed children. I hope that you will find a way to help them remember the good things, should the worst occur.
Do try to keep a positive outlook – this discussion board has amazing stories of the surprising turnarounds that can and do occur every day thanks to the grace of God.
My prayers are with you and your family. Much love to you all,
MichaelHang in there Adam and remember to take some time out for yourself, even if it’s only 10 minutes for a walk in the park or to have a cup of coffee or sit in the car and listen to a song on the radio!
We caretakers sometimes forget to remember that we DO need some time alone – even if it’s only 10 minutes.
Hugs to you both,
MargaretAdam…what a wonderful update. I hope your wife enjoyed her shopping trip. I am pretty much in the same place as you with my mother right now. I’m sure what you are going through is 1,000 times more difficult. I can’t imagine. I’m am glad she is in good hands. Thanks for the positive posts. I hope my mom will be able to enjoy some days like that. She keeps waiting to feel better. The nurses finally told her that this is the best she will probably feel. At least she has perked up these last couple of days. Last week had me really worried.
I was so glad to see you posted, Adam. It is exactly these times we want to remember and how blessed we are to have them. Petra’s Hospice sounds just wonderful, like they really cater to the whole person and really care. Know what Adam? You never know how strong you are until “strong” is the only choice you have! You wondered how you were going to get through this and I believe its these spurts of joy that rekindle our strength. Love and hugs to you all. Thanks for posting this I was just thinking about you this morning.
Thank you Margaret and Darla. Lainy, your poem made me cry. I seem to be doing a lot of that at the moment.
The hospice has done wonders. When she went there, I fully expected it to be over in days but she has picked up since then. She now entertains up to fifteen visitors and won’t stop talking or at least trying to talk. When I told her that her mother was coming (her mother is a difficult lady to live with, you understand), she turned to the nurse and asked for more morphine. The hospice even arranged a shopping trip for her with a nurse and our six year old daughter. All the staff love her. This week, she spent a couple of days back in the hospital to sort her drain out and we were worried that she might lose her bed but the sister told us that the staff would never allow it.
I can’t express how happy I am that she has had these extra days. It’s so strange that in the midst of despair, some things can be so joyful.
Love to you all.
Adam,
I was told by our district nurse that she and her team would get me through those difficult days and they did. I have wonderful memories to share with her even in those final days. Our little girl stood and rubbed cream into David’s feet in his final hours. Don’t be afraid to lie down beside Petra. I slept in bedside David on his final night even though it was just a hospital bed.
Now it is our darling daughter who gets me through. Take care.
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