One patient with glioblastoma still alive nine years later
by Kurlysue on Wed Nov 30, 2011 02:36 AM
Not been on for a while. Sometimes it's hard to be here sometimes it feels good. Time is a great healer or so they say? Whoever they are haven't felt my grief.
I feel as though I am no longer part of the real world, just a visitor. I am now heavily medicated for depression during the day, sleeping tablets have yet to cure my horrendous sleeping habits. Every waking second is overwhelming. My social skills are non-existent. I really do feel as if I am growing more crazier as each day passes.
I keep a level head, just to make sure my son is ok. I make a point of ensuring that his life is easy in every possible way I can. He is only 14, but making sure he has a clean uniform every day, his lunch made up and ready, his busfare, his PE kit ready, anything that used to be so easy for me and routine, is now the only thing I can do. Even these small everyday little things is over whelming for me. But I do them.
If only someone would just stop time for me, just for 3 or 4 days so I could wallow in my own self pity and grieve the loss of both my Mum & Dad. But in the cold hard reality of everyday life, this is not possible for me.
The world sometimes gives us a raw deal. As people we cope, so why can I no longer cope?
by edwardseva on Wed Nov 30, 2011 03:26 AM
Kurlysue just know that your Dad & Mum would not want you to live your life in depression. God has a time and place for all of us, just think about the fact that two things in life we have no control over and that is being born and death. Those are two appointments we can't change, we really have no control over when we are born or when we die. But you do have control of the life you live and example as a parent you are for your 14 year old son. You have to tell yourself that you want better for you and your son one day at a time. By Grace and Mercy I know you can do it and if you would like I will help you along your journey.
The devil wants you heavily medicated so you are not a threat to him, just a reminder you are on this earth to be a blessing to someone. God really has a purpose for your life!
by eastwest on Wed Nov 30, 2011 12:44 PM
Hi Kurlysue Grief is so very difficult. I know at times these past 8 months I have felt crazy with it. I wanted to take the drive or train into the city where Phil had treatment and we went on a steady basis. I wanted to write to his oncolgist and ask if I had gotten him there 6 months earlier could that have changed the outcome. Neither would make a different outcome. I think some of the craziness is because we don't ahve the answers and we are so overwhelmed by the loss of our loved one. You are doing a good job taking care of your son. Give yourself special care during this time. Eat right and try to get fresh air and exercise.I have patterns of sleeplessness and sometimes need to take Sonata for a few nights to get me back on track. Hugs Irene
by tricias76 on Thu Dec 01, 2011 04:48 AM
I can so relate to your pain. I lost my father in 2006 to gastric cancer and now my mom is in hospice and so week. I know she has been given a couple of weeks. I have a 12 year old daughter that is coping and dealing with my issues. It has been so stressful since my mom's diagnosis. I have gone through depression, anxiety, anger, and saddness. I feel at times like I have to be strong. I have not cried since my mother's diagnosis. I am not dealing with my feelings. I'm distant and I'm angry. I have decent days that I can work and I have days that I feel like I'm exhausted and can't cope. Sometimes I feel selfish for focusing on my feelings and not my mother's condition of how my daughter is coping. I go to therapy and am on meds also. I pray give it to God and still it's hard. We all cope so differently with illness, loss, and grief. One thing i can thank my mother for is the appreciation of life. She has remained so strong. She is human and has her bad days also, but she has such a willingness to live. That is what keeps me so level headed. That is why I function. People always talk about a better place. I'm sure it is, but while we are hear we have to learn to cope and live life. It's hard I am OCD and a worrier by nature, but that will always be a challenge. I just try and continue living. I love my mother and I feel like I have been grieving since she was diagnosed. Now I just make sure to honor her wshes and I know it will be so hard when she passes. She will definately take a part of me. I am so blessed to have her in my life, and I love every moment even if it might not be in the best circumstances.
by tricias76 on Thu Dec 01, 2011 04:50 AM
sorry for the typos I just wrote fast and posted. I hate typos.
by eastwest on Thu Dec 01, 2011 01:26 PM
Hi Tricias My husband was diagnosed with stage 4 EC in June of 2010 and passed on April 8th 2011. I knew how bad it was even though we never talked about him dying. That anticipatory grief was staggering to me. I love to walk in the morning and I found that my legs felt like they had been placed in cement. It took all I could do to put on foot in front of the other. It seemed as though I was living in a different world than other people. They spoke of vacations and redecorating their homes and all we seemed to have was treatments and decline. Yet we were together for 9 months more than we would have been if we hadn't taken him to the different hospital.
Phil was like your Mom. He loved life and fought hard to stay with us. Some days it seems so hard to go on without him and yet because of how he lived his life I do.
Our granddaughter is the age of your daughter.Our grandson three years younger than her. I take them fishing now since Grandpa is not here to do that and we get to talk about him. And somehow we do find comfort there on the lake remembering through our pain. Prayers are with you and your family. Irene
by thebyrdsfriend on Thu Dec 01, 2011 02:53 PM
I am so sorry for your loss. I know your grief is overwhelming now, and I'm glad you have your son their with you. I lost my father and mother to cancer. When I lost my mom, i walked out of the hospital in shock I guess. I remember thinking the world is still turning, poeple are still moving and going about their day, and the sun is still rising and setting. I didn't feel connected to that world either. My doctor wanted to put me on anti-depresents, and I told her no, I'm grieving, I'm not depressed. I did accept xanax, which is an anti-anxiety that I would take occasionally at night so I could sleep, instead of having my mind constantly going over what had happened. The grief was so devestating.
I know everyone says time heals all wounds, and it's so hard hearing that at this point. But, the pain will always be there, but it will get tolleralbe. Tollerable is what I pray for you to come sooner rather than later. I myself got a puppy ( I'd been looking for one long before Mom was diagnosed and died) about 8 months later. All of a sudden I found myself smiling over her little antics, just a natural smile, not a forced one that I'd give to people when I knew I was "supposed to smile at this point". It didn't take long to realize I hadn't had a natural smile is so long. That, dear was the beginning of my healing. I really had a natural reaction, and it was a smile. That, then caused me to give thanks, which caused me to count my blessings, which continued to make me feel better. It was like a dominoe effect. I would count the sun shining so bright as a blessing, the excitiement of a child, the snow falling, they blessings just kept adding up.
It's hard around the "first holidays" but you'll get through it. I think right around the 1 year mark, I really was feeling better. The loss is always there, but the memories start to become good ones, and soon you'll be able to laugh at things they said, or did, or the fun you enjoyed that you want to share with your son. So, things do get better, but I now it's hard to believe at first. Accept your sorrow now, and know it will get better. But don't forget to look at the small things that make you smile, because that is part of the healing process God gives us. I pray for you to have His loving arms wrapped around you in comfort, and with His comfort I pray you begin so smile at the small things, because then then small things begin to be big. Take care, dear, Helen
by Midwestgirl on Thu Dec 01, 2011 04:08 PM
Hi, Kurlysue! Sorry to hear you're going through such a hard time. Since cancer took both of my parents, also, I look at it from this perspective:
1) I'm a firm believer in the afterlife and Heaven. We WILL see our loved ones again.
2) I believe (granted - this is ONLY my thinking!) that (being a Catholic) that Earth is actually our Purgatory. I believe our souls are all destined to be on Earth in order to grown spiritually. We need to experience all of the emotions, from extreme happiness to extreme sadness.
3) I believe God heals us. We just need to trust in Him.
4) You are never given more than you can handle. You WILL make it through this, you just need more time. You are doing a TERRIFIC job coping with everyday tasks for your son. Sometimes we just need to lock ourselves in the bathroom and cry our eyes out!
It's good to hear from you Kurlysue. Please know that there are many on here that are praying for you and sending you...
Much love and many, many (((((HUGS))))),
by healing1 on Thu Dec 01, 2011 04:24 PM
I felt like not living at age 27 when my Father passed of cancer. Time does heal. Support groups also, writing about it, getting mad and yelling and screaming (in an appropriate place) even if it's at God, taking time out for fun with your son (they grow up so fast) and he's probably grieving the loss of his mom. Make sure you eat a clean diet of whole foods, stay away from processed, chemicalized foods.Maybe try some juicing, exercise, even if it feels like your trudging through mud make yourself do it. Write about what you are grateful for. Set baby size goals. This too shall, unfortunately like a kidney stone. Keep on keeping on Kurlysue. You are not crazy. Just because you think certain thoughts DOES NOT MEAN THEY ARE TRUE. Write a list of good qualities about yourself, even if it's one thing (like you gave birth to a beautiful son) Hang in there girl. Maybe even take time to focus on your breathing and meditate. We need to people as a mirror. No man is an island. Keep in touch, Casey
by healing1 on Thu Dec 01, 2011 04:25 PM
that would be this too shall pass
When you track a discussion, you will get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to track this discussion?
If you stop tracking this discussion, you will no longer get notified by e-mail if anyone else posts a new message on this discussion. Are you sure you want to stop tracking this discussion?
If you were considering traveling for cancer treatment, which headline would you find more interesting?
Destination: HOPE. Cancer care that is worth the trip.
Over 84% of our patients travel to our hospital from another state
Neither headline is interesting
We care about your feedback. Let us know how we can improve your CancerCompass experience.