Looking back...what would you have done differently?

Warning, this is not of message of hope.....

I dreaded this day. After two years of the standard. surgery, radiation, temador and avastin.

Bad mri yesterday, surgery not an option. maybe a trial if he passes the screening and can tolerate it. Not promising.

I have read various post from those of you that have lost your loved one.

What would you have done differently?

I'm wrestling with -do I keep working( We need the income),but we could get by. Do I continue to go to school? How much planning should I be doing? My husband is functioning fairly well,so it is not a crisis at this point. we have the business end taken care of, will, power of attorney.

Not wanting any could of's- should of's...no regrets

L

Laura, soooo sorry to hear about the MRI we all dread. How to deal with it, on every level. I can hardly imagine but I try because I need to think about it too... 

So, without the benefit or wisdom of experience, but knowing me and that I live every hour trying to have no regrets, I can only tell you that I will follow my heart. What this means:

I will try to work as little as possible to keep us afloat. We'll dig out and all the bills can be paid later. I will put all my other projects, including dear friends, on hold. I won't worry about the housecleaning. I will delegate all the things I can to people who offer help: laundry, dump runs, show shovelling, lawn mowing, dry cleaning, grocery shopping, etc. I will spend all the time I can with my son. I will hug and kiss and gaze and adore him. I will tell him I love him all the time. I will be open -- as much as possible -- to his needs and worries. I will be present. I will tell him the truth about how I'm feeling, and about what's going on medically, except when it would truly useless and incomprehensible to him. This is how I'm living now, and IF I can continue to do all these things, I won't have regrets.

This also goes for my mother who has Multiple Myeloma... an uncertain future there too. Luckily Andy is living with me, and my parents are 10 minutes away.

I look forward to hearing what others have to offer here. Make me ready too.

Love, Sarah

mother of Andy 27, dx gbm/pnet 1/09, standard rad and temodar, then temodar 5/23 six rounds until recurrence 10/09, now on Avastin and Carboplatin once every three weeks.

Sarah...I don't think anyone could improve on that.  How lovely.

hugs,

janni (wife of Steve gbm iv dx 11/07)

Laura, I'm so sorry. I lost my Mom to GBM in July of this year. The memories are still very fresh and I am still working on 'one day at a time.'

Sarah offered some very wonderful advice, as usual. Really just to expand on that, I would offer you some advice based on my experience. First off, think about quality vs. quantity. With this disease, things can change so rapidly - when you reach a point where treatment and/or meds are compromising your husband's ability to enjoy life, then stop and reevaluate. At the end, we only had my Mom on Ativan and morphine as comfort was more important than prolonging the state she was in. This is worth speaking about together now. Secondly - cut out the 'stuff'. Spend every moment you can doing whatever it is you always wanted to do or always enjoyed doing. Hold his hand, be truly together. If you ask, people will help. As I quickly found out, in these situations, friends and family often feel helpless, so if you ask them to do errands, chores etc., they are generally more than happy to oblige.

With every act, every word and every breath, ask yourself if you are creating a memory that you will cherish - this process will catch on more quickly than you would think! Trust that the strength you need will be there. It will often feel like you can't go on...but you will - we all do.

 With Love, Alison

In April of this year, my dad was completely paralyzed on the right side of his body but a change in the steroids he was back to normal.  The paralysis hit quick and hard and I thought this is it.

 At the end of July, there were some small signs of problems and an MRI confirmed growth.  In having to do some things to get into a clinical trial, he was slowly getting worse and it did not help his feet had swollen so much they were leaking.   But then over a four day period he went from walking to a wheelchair.   And a follow up MRI showed no growth so the doctors were at a lose to explain what happened - changed medications and did not respond this time.

   My dad now in a hospice and is there because about three weeks ago we were told a few weeks at most.   Then when debating what to do a few days after that, his vitals dropped dangerously low and I rushed to say my  goodbyes.  Last night my dad and I were discussing the environments impact upon cancer rates so even when everything seems to point one way, it can change to the other. 

 This is a very long winded way of saying to go day by day as suggested by others.    I have told my work that this is second my dad is first and they have been very supportive.  I have included them in the process, the good and the bad and they seem to have a vested interest as a result.  I have no regrets and even better, I have probably had some of the most rewarding and honest conversations in my 46 years of interaction with my dad.    My sister made a power point presentation of his life for the wake and he is a very active participant.   Change that slide and what music he would like to accompany the various sections.  There have been a few tears doing so but mostly it is laughter as we recall fond memories.   

 Focus on the positive and laugh as much as possible and deal with the bad days when they arrive.  The problem is that bad days will arrive but no one can say when, how long or if it is permanent or can be reversed so there is no choice but to deal day to day.

Wow!  What a question.  We lost Jill, our beloved,1 month ago today.  My advice...."Live like he's dying".  We (we had our liitle army) made sure that everyday was about Jill and making her day the best day she could possibly have.  We left no stone unturned as far as follow up consultation and furhter treatment options and after the same diagnosis,  we transferred our fight of keeping her alive, to making sure that she left this earth feeling loved, secure and safe. 

Make sure you have hospice involved. They are a god send.

Begin to prepare yourself for what lies ahead.  This will be the hardest yet, that you have dealt with.  I wish I could say that it gets easier, but we are not there yet.  We still miss her greatly. 

Love him, touch him. Tell him everything you ever meant to but didn't.  Smile with him and laugh with him ......... 

Personally, I made the decision to put my career on hold during the last 6 weeks of her illness, but I am fortunate in that my husband and I own our business and I could leave without the chance of loosing my job.  You have to do what you can do.......

My thoughts are with you during this time. Jill was never in pain, but she was young.  Her heart was young and it did not know it was supposed  to stop  beating.  Watching her body betray her was hard.....

God bless you and your family.

Wow!  What a question.  We lost Jill, our beloved,1 month ago today.  My advice...."Live like he's dying".  We (we had our liitle army) made sure that everyday was about Jill and making her day the best day she could possibly have.  We left no stone unturned as far as follow up consultation and further treatment options and after the same diagnosis,  we transferred our fight of keeping her alive, to making sure that she left this earth feeling loved, secure and safe. 

Make sure you have hospice involved. They are a god send.

Begin to prepare yourself for what lies ahead.  This will be the hardest yet, that you have dealt with.  I wish I could say that it gets easier, but we are not there yet.  We still miss her greatly. 

Love him, touch him. Tell him everything you ever meant to but didn't.  Smile with him and laugh with him ......... 

Personally, I made the decision to put my career on hold during the last 6 weeks of her illness, but I am fortunate in that my husband and I own our business and I could leave without the chance of loosing my job.  You have to do what you can do.......

My thoughts are with you during this time. Jill was never in pain, but she was young.  Her heart was young and it did not know it was supposed  to stop  beating.  Watching her body betray her was hard.....

God bless you and your family.

I am hearing the message loud and clear, to spend all of our time with our loved one who is afflicted with the brain tumour.  For sure, we need to make whatever time is left, count for something.  I love my husband, I am grateful to have him here, and when he was first diagnosed, I was not sure how much time we would get, so it was tempting to just close ourselves in, and spend every minute of our time together.  I resisted, kept a part time job, spent time with family and friends, and now, 2 1/2 years later, my husband is still here spending quality time with me, but this summer, we have lost both my husband's brother and my best girlfriend ever.  Thank goodness I can say that I did spend time with my best friend.  I wasn't expecting to lose her and she was an important part of my support system. Now she's gone and I miss her so much.  But I do not regret the time I took from my husband, to spend with her. 

In 1994, my second youngest sister was diagnosed and treated for Hodgkins lymphoma, and I was terrified of losing her, it was all I could think about.  But during that year, while worrying about her, my dad had a fall and died very soon after.  Then one day at work I was called to the phone to hear the message that my sister was dead.  I cried, oh god no, her treatments were going so well!  We all thought she was beating this cancer.  But the caller said no, not that sister, it was my youngest sister, healthy, 34 years old, died suddenly of a massive pulmonary embolism.  Such a shock.  I had not spent as much time with dad as I would have liked, and my sister who passed was close to me but our focus was always on the Hodgkins sister.  I did suffer regrets about my choices at that time.

Only one reason I am telling this story.  Life is so unpredictable.  We love so many people.  We cannot know who we will still have in our lives as we look into the future.  I learned that the answer is BALANCE and QUALITY.  Really spend quality time with all the people that you love.  You might spend your time only with a husband, and then find that you've lost a child, or grandchild, or sister or brother, or even your best and longest friend.  You might spend your total time and energy with your parent and end up losing a husband, sibling, or some other loved one.  I don't mean to be depressing, but living 60 years has made me a little wiser than I used to be.  Being a nurse at the bedside of the dying has also taught me to balance life.  Treat everyone as you would if you knew that there was a possibility of them leaving unexpectedly.  Thats the only way to prevent regrets.  Just my opinion, but strive for a normal, balanced life.

Bless you and help you to find your best way.         Donna L