One patient with glioblastoma still alive nine years later
by sanjim on Thu Apr 05, 2012 08:09 PM
Hi all, I have Been doing pretty good lately, today I lost it, I was crying like i had not cried for a long time. I tried to fake it ,but I di not make it!(Irene I love your quote it fit us all well). For some reason when i think I am doing my best it hits me again.
This week I started theraphy for my neck, after therapy their is a lot of pain and now my right hand is going numb, they told me this was normal, the nerves are waking up in my hand, if it continues they will do another MRI. another treatment tomorrow.
Irene I am happy to hear that you are having your deck done, I am wondering if we are making some changes to keep our mind busy, maybe if we change things around us is a way of healing some of our pain.
Has anyone made plans for Easter? I am going to go to sunrise services and the to our regular service.
Hope you all have a Happy Easter. I will be thinking of you Irene. (((HUGS))) Sandra
by eastwest on Fri Apr 06, 2012 03:48 PM
Hi Sandra Sorry to hear about the pain in your neck. I hope it gets better soon with therapy. Take care and be gentle with yourself.
This week has been harder for me also then its been in a while. I don't know if it is the anticipation of that one year marker coming Sunday or Easter preparations at church/family. I kept thinking of the short passage in the bible that says "Jesus Wept" and how I am sure he weeps with us in our sorrow. Yesterday I helped get the church ready for a last supper for over 50 people but I hadn't gotten much sleep the night before so I felt pretty vulnerable. Thought about last year at this time and how it would have been only a couple more days until Phil passed. Of course I didn't know it last year at that time.
Then the minister congratulated me on my story that has been published and asked how it felt to finally see my work in print and how excited i must feel and how she felt Phil had something to do with it. I do feel that Phil had something to do with it as that story was sent in over 2 yrs ago and to get it accepted now is kind of unexplainable. But I haven't felt the joy I thought i would feel. It just hasn't meant a whole lot because my partner is not here to share the joy with.
Going to early services on Easter but not quite sunrise. Then Scott and Windy and I are meeting Noel and family for breakfast and then Scott and Windy and i are going to the cemetary an hour away. She made a beautiful arrangement and I am picking up some flowers too though I planted pansies a few weeks ago(I hope the deer haven't eaten them all).
I hope everyone has a blessed Easter. Irene
by sanjim on Sat Apr 07, 2012 12:10 PM
Hi irene, I am praying that you will find some peace, the one year anniversary of losing your husband is a difficult one, it has now been 13 months for me, and like I said before just when you think dealing with all that we are going through is getting eaiser it hits you hard again. I felt on my one anniversay that it was starting all over again, now in place of the first without Jim, now it is seconds that we have deal with.
I did not know that you had something published, congradulation, were was the story published? I would like to read your story!
Today is going to be a busy day for me, getting reay for Easter, I am making muffins for the sunrise service and making pies for a dinner that we are having at the youth Pastors home. Our pastor and the youth pastor have been great, they have done a lot for Andy. Joining this church is one of the best things that I have done in the past year. I can not believe how caring they all are. the pastor has called me many time just to see how I was doing, i think sometimes he know when I need to talk to him, God works in many ways.
I went for theraphy yesterday, I am still having a lot of pain in my neck, if I am still having pain on Wednesday they are going to contact my Doctor. I am living on pain pills, I am trying not to take to many prescription pill, I do not want to become addicted.
Happy Easter to all of my CC friends, Sandra
by eastwest on Sat Apr 07, 2012 12:39 PM
Hi Sandra My short story that won second place is in the winter edition of Story Art, a magazine for story tellers. So weird because I sent the story in two and a half years ago for a contest. I feel as though Phil was working something from where he is for me to win now. It should be on the web sitewww.nslstorytellers.org
Yesterday was really hard as I picked out some easter flowers to take up to the cemetary. I know Phil is happy where he is but it is so hard to be happy here without him.
So many people have reached out to me from my church this year and we are pretty small congregation. So grateful to them.
Then last night my grandson started his little league games for this season. My son and the other coach asked me if I would keep score for them this year. When I walked into the dugout I felt as though I'd come home! It felt so good. I kept score for so many years when Phil coached. I know he'd be smiling about me being back. or else shaking his head and asking "are you crazy?"
My two sons got on me last night for saying that my grandson got a hit instead of making it to base on an error. They said "Mom you never would have given us hits for getting on base like that!" I told them my eyesight must be failing. lol Irene
by JackieJo on Sun Apr 08, 2012 06:21 PM
Hi Sandra and Irene...I pray that we all have a blessed day filled with peace and comfort and a sign from our hubbies that they are here with us. When my family and I went to the medium she told us that whenever we saw a redtailed hawk that it was a sign from Joe. The medium had no way of knowing that Joe loved red tailed hawks. This past Thursday my son Jon was driving down the highway about 25 miles from his home when he spotted a redtailed hawk on a power line. He said it was looking right at him and when he passed under the power line the hawk flew over his truck and started following him. He said it took his breath away. A couple of hours later he was home and looked out a window and couldn't believe his eyes. There right in front of the window sitting on a branch was a hawk looking into the window watching him. Jon called to my daughter in law Amber and they were both in tears...happy tears. Amber said that she was actually shaking. She took a couple of pictures of the hawk who stayed there in that tree for quite a while. There is no doubt in our minds that the hawk was a a sign from Joe. That for us was our Easter miracle.
A year ago today Joe had the esophageal stent put in. After that he was able to eat again without throwing everything up. That stent was a Godsent. It gave Joe about 2 really good months before his rapid decline. It was such a happy time for all of us. He was doing so well after the stent placement that we thought the chemo putting Joe into remission. Of course that wasn't to be. Now a year later Joe is gone and I'm so sad and lonely. I want my Joe back. Nothing else really matters in my life right now. Cancer destroys everything and everyone connected to it. Irene...It brought tears to my eyes when you said that you thought that you'd be thrilled about your story being published, but that it doesn't mean as much to you now that Phil isn't here to share the good news with. Damn cancer...It not only steals our loved ones but it sucks all the happiness out of those of us left behind. Its not right. Cancer is so destructive and devastating. When will we ever feel normal again??? To be honest I doubt that will never happen for me. I miss the old me but she is gone forever and replaced by the new me...emotional, teary, depressed, lonely, angry and shattered.
I'm sorry this post is such a downer other then Jon's hawk sighting.
I'm so happy that we all have something special to keep us busy today. That in itself is such a blessing. I'm going to my daughter Kori's house for dinner. My 3 grandchildren will keep me smiling. There is nothing better to bring you out of a slump then small innocent children who keep you laughing at their antics.
Happy Easter to you both and to your families.
Love, Hugs and Prayers
by JackieJo on Sun Apr 08, 2012 06:27 PM
Sandra...I meant to tell you that I'm sorry to hear that you're having so much pain in your neck and numbness in your hand. I hope and pray that therapy works. Like you and Irene just when I think I'm doing better I end up falling apart and cry for days. I guess this is all part of the healing process but I hate it. Praying that the three of us soon find peace and comfort in our lives.
Happy Easter dear friend
by eastwest on Sun Apr 08, 2012 08:28 PM
JackieJo On the way home from the cemetary my son pointed out 2 red tailed hawks. I think Joe wanted me to tell you that! Irene
by JackieJo on Mon Apr 09, 2012 01:46 AM
Irene...Thank you for letting me know about your red tailed hawk sighting!!! I think you're right that Joe wanted you to tell me that! I hope that you had a nice Easter. I'm continuing to pray for us. Thank you for all the love and support that you've given me. I hope and pray that things will start to get a little easier for you, me, Sandra and Tina and everyone else reeling from the loss of their loved ones. Love you dear friend...
Hugs and Prayers
by tpatterson on Wed Apr 11, 2012 04:12 PM
Hello my dear friends. As always, it is so good to read your postings. You are all so brave and strong, and you lift my spirits and make me think I can get through this, too.
Sandra, I hope you are feeling better. Don't worry about becoming addicted to the pain pills. Take them while you need them. Addiction is when you take them and don't need them. It sounded like your Easter was a bustle of activity with your church. They certainly are keeping you busy!! I, too, went to church and it did feel good. I need to be a more regular attendee. I feel down when I see couples my age holding hands, holding each other, etc. I am happy for them, but reminds me of my aloneness.
Irene, I you were in my thoughts on Phil's day. Glad to read that you, too have been staying active. I don't know what I'd do without my students. They keep my mind active and off the pity train. Love your baseball involvement. Isn't it funny how you were tough with your kids, but soft with the grandkids. I can't wait for that experience. I know Phil is definitely smiling as you participate in baseball again.
JackieJo,LOVE LOVE LOVE the red-tailed hawk story. A true Easter miracle. My close friend was going to take me to a clairvoyant a couple of weeks ago, but ended up getting too busy, but I am definitely going to put it in my plans. I pray this person is authentic. I have such a skeptical mind. It will take something very specific to make me believe this person is for real.
When JP was a day away from passing (I thought he was getting better..talk about denial) he jumped out of his hospital bed at full strength and ripped out all his tubes, catheters, etc. He was glassy eyed and he said, "I guess I better go get on my horse." I didn't give it much thought until after he passed I realized his favorite painting was ,"The End of the Trail" which we have the painting, a sculpture and two nightlights of that in our home. It depicts an Indian warrior on the back of his horse with his head hung over dying. JP loved that scene. (I never liked it.) Anyway, last week our school custodian's father was dying of lung cancer and my coworker said his last words were, "There's a man on a horse coming for me. I better go." Am I crazy to think that could have been JP?
I was driving home from running errands last Thursday and sadness just washed over me and I lost it. I went home and got in bed and cried for hours. Just out of nowhere...I had been having a good day up until then. Does this happen to all of you, too? Then I felt guilty because of what Our Lord went through and here I am being a complete wuss. EEGads...
You all are always in my prayers. Tina
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