Loss Of Your Dad

I am so sorry about the loss of your father. What a blessing for him that you were there for him. How in the world are you coping. My husband was diagnosed in May 2005. We have completed Radiation w/Temodar and are now on a cycle of Temodar 5/23 as well as Tarceva daily. The tumor is still shrinking at this point. We have had one resection so far. My husband just had a complex partial seizure this morning and I thought I was going to have a nervous breakdown. I am a wreck. I admire your courage and strength.

I am so glad to hear your husbands tumor is shrinking-- so sorry to hear about his seizure. that is so hard -my father only had one seizure..then they switched his meds - what is he taking for seizures..how is he doing now afterwards -- this is the hardest part.. It was so frustrating not being able to do something about all of this.. my father had fallen a few times in the hospital too which drove me NUTS because they had not strapped him in his w/c he could use left side and his rt foot would slip and out he'd fall out. this happened 2x He also fell out of bed once on his head..the bed was high too.i had about had a nervous break down too...after that we lowered the bed each night. it was just a few weeks after surgery. it has been a rough road like a roller coaster.. but what seems to help me out of the really hard days is taking things by the hour and i trying to think about everything in as positive a light as i can and i just loved my dad as much as he could stand :) and tried to make him laugh as much as possible. I have a great picture i took on my cell phone of him laughing i have it sitting on my desk. i am so glad i took it -it reminds me that the last months were hard (100% in hosp) but we did laugh alot and there was some real quality ..its hard bc i miss him. but i know he'll always be with me.

how are you doing? sounds like a hard day. i hope your husband is ok after seizure and continues to thrive in treatment. be well.
christine

First I want to thank you for responding to me. This is my first attempt at reaching out. John is doing well again. He slept most of Friday and Saturday as the seizure exhausted him. He was throwing up this morning after his tarceva but felt good enough to see me off to work. His balance was off on Saturday but he recovered and is doing much better. Don't we just live for the good days. Smiles and happiness is all that matters. I wish you could bottle your view of life and sell it. I also wish you could take you experience and bottle that so there would be no unknown's for other people such as myself. I'm so scared. John is on Depokote for seizures and we had to increase his dose for the day from 2000mg to 2500mg. But now we are back to 2000mg per day. He got really angry with me Sunday for reminding him to take his pill. Did your father ever get angry? Falling is so scary. You feel so helpless and I know your father must have been scared. Thanks again for being there.

I know this situation is so scary. there were many days i felt overwhelmed.. So we worked on doing the small things like lowering the bed as low as it would go if he wasn't eating.. to make him more at ease about the falling. Staying on top of all the meds is alot of work sometimes too.

My father had anger.. alot of it at times.. I 've heard men often are care TAKERS not receivers. my father was completely dependent on others after his diagnosis... All through the journey we were walking the fine line. letting him be as independent as he could be while gentle guiding him out of situations too dangerous or just plain not a good idea..there were times he would shake with anger. Its hard because sometimes I think my dad felt like our care was overbearing. it is such a fine line. I think at times it was a good thing to express than let it ball up inside him.. we tried sometimes successfully to redirect anger at the situation than at us. You are right the good days keep us going but the bad days also give us alot too. I know my dad felt so loved that we were with him always esp through the tough days. and what I remember most through those difficult days is the love. maybe its like childbirth you don't forget there was pain but lasting seed is the love and connection. I also know it reveals we have much more strength than we realize.

Remember you're doing an amazing job and keep a little time and space to renew yourself too..

You are in my prayers and I hope you and your husband continue to do well. Keep your hopes up. There are many people who do great on temodar for a long time.. there are other treatments too if that changes. No one can tell you how your husband will respond to treatment.

Be well.

Christine,

I just have to say how much those two little words have meant to me. I have been watching this website and for a while and you always end with "be well". When you lost your father I really felt your pain and strength. I just want you to know that your two little words have meant the world to me. I look forward to opening this website and seeing those words every day.

Thank you

Bobbie