Glioblastoma & my sister

Okay, my sister is two weeks into her chemo and radiation. Is it my imagination or does this time period seem like a dream state. You get this horrible diagnosis and prepare for the worst. Then, life goes on.....she`s doing her treatment in the a.m. and going on to work a full day. Feeling a little fatigue, but as yet no nausea.

My question is this: Does it seem like everyone dissapears and there are only one or two people sticking around to help? Is it denial or the fact that the patient "seems" to be allright?  It does not help that my sister has not been made aware of the fact that the time clock is moving quite a bit faster for her. I am trying to remain super positive and at the same time waiting for the other shoe to drop.

I have the feeling that someone out there can relate to the wierdness of the diagnosis and the time frame that we are in.

Thanks, Adonna

Adonna,  I got on today to find someone with the same feelings and low and behold...you were there.

My soon to be husband was diagnosed in June with muliple myeloma.  Our world went from fine to chaos in a matter of days....and the rest of the world keeps moving on.......as if nothing happened.

I too am puzzled...as I feel that I am in a nightmare.  I have found myself more overwhelmed of late, and folks that used to be there have disappeared too.  Although multiple myeloma is not curable it is treatable, however, nothing is ever certain with cancer, is it? 

Please know...you are not alone. There are many of us out here, trying to help those we love deal with such things as cancer.  Feel free to write me a personal email if you want to chat more.  Anita

Hello, It does feel like a nightmare...doesn't it? In October of 2008 my husband and I were in Paris, and today we are talking hospice because of his incurable cancer. Please know you are not alone! People do tend to disappear during this time...maybe they don't know what to say or do; they are uncomfortable talking about it or something. What is very important is to hold the people who are staying close very close...they will get both of you through this time. You know who they are! We find solace, too, in the oncologist's office...the nurses and doctors know us well and there is so much comfort in them being a part of such an intimate journey. Keep posting and reading this site and you will find that there are so many people out there who you can relate to. M

I, too, am having a lousy day so I always turn to this msg board--and there you all were.  My husband, Rick, has kidney cancer but just recently started hospice at home.  Had a lot of people here the first week but that has trickled down.  I have had experiences with cancers and hospice with my family but nothing like Rick--he has kidney cancer, mets to lungs and most recently to the brain and a blood clot in both lungs.  He took to his bed about a month ago and hasn't gotten up (other than to use the bathroom) or eaten since--still taking water.  He has no pain, is alert and understands what people are talking about but just doesn't have the energy to have a long conversation or to get out of bed.  He just lays there.  His only medication is an antidepressant.  I feel so torn because I think I should be spending time with him but he has told me to just let him rest....so I am.  He has lost a lot of weight but still looks good, like he could just get up and sit on the couch.  It is very strange but I am grateful there is no pain (probably due to the growth of the brain mets).  Whew!  I didn't know I had all these issues.  My fingers just flew over the keyboard.  Thanks for listening---I feel better already.

Bookmum

 

My husband was diagnosed with glioblastoma a year ago and everyone rallied around.  Then he had radiation, chemo and Avastin and he got better.  Though watch out for the last 2 weeks of radiation and the few months after the patient can be awfully tired.  He never had nausea.  The tumor was always in his brain it had just stopped growing because of the treatment.

My husband seemed fine this winter.  He even went skiing 6 times with an instructor.  Unbelievable!  He has flown across the country to visit people and go to weddings and events.  I don't know how many people have said to me "He has it licked."  "He's not going to die." Most people did not see the changes in his personality that I saw.  They couldn't believe that this was a burden at all to care for him.  Now he has had a recurrence.

 The first symptom of the recurrence was a grand mal seizure at the gym while he was on a treadmill doing his regular 3 mile walk. He is now on a trial drug and probably headed to hospice in a couple of weeks.

There is a culture in this country that death can be prevented "if only" you ate right, exercised right, prayed right, lived right, found the right treatment, etc.  Many people in the US do not see dying as a natural part of living.  But we are all dying from the day we are born.   Watching some one die is horrible but it is part of life and it is an opportunity to form bonds that cement that relationship forever.  You also will never regret the time you have spent with your loved one.

My only suggestions are get as much help as you can afford or is available through hospice your friends and relatives and your church or community.  Everyone is willing to visit but get help with those chores you hate.  Cleaning, yard work, shopping, car washing, etc.  Sometimes having someone sit so you can get out even to do the grocery shopping can be important.

 I am glad (at least today) that I have had this year with my husband and I do not regret the decisions we have made.  I figure those who have not been here can't handle it and that's ok.  It's their loss and if they will do something for me that they are comfortable with then that's great.  If they can't do anything then that's ok too.  It's their problem not mine.

This was a longer message than I intended.  Take care.  Love your sister and do what you can for her.  She will need you.  Don't think about anyone else.

JMB

 

On 8/26/2009 gbmwife wrote:

My husband was diagnosed with glioblastoma a year ago and everyone rallied around.  Then he had radiation, chemo and Avastin and he got better.  Though watch out for the last 2 weeks of radiation and the few months after the patient can be awfully tired.  He never had nausea.  The tumor was always in his brain it had just stopped growing because of the treatment.

My husband seemed fine this winter.  He even went skiing 6 times with an instructor.  Unbelievable!  He has flown across the country to visit people and go to weddings and events.  I don't know how many people have said to me "He has it licked."  "He's not going to die." Most people did not see the changes in his personality that I saw.  They couldn't believe that this was a burden at all to care for him.  Now he has had a recurrence.

 The first symptom of the recurrence was a grand mal seizure at the gym while he was on a treadmill doing his regular 3 mile walk. He is now on a trial drug and probably headed to hospice in a couple of weeks.

There is a culture in this country that death can be prevented "if only" you ate right, exercised right, prayed right, lived right, found the right treatment, etc.  Many people in the US do not see dying as a natural part of living.  But we are all dying from the day we are born.   Watching some one die is horrible but it is part of life and it is an opportunity to form bonds that cement that relationship forever.  You also will never regret the time you have spent with your loved one.

My only suggestions are get as much help as you can afford or is available through hospice your friends and relatives and your church or community.  Everyone is willing to visit but get help with those chores you hate.  Cleaning, yard work, shopping, car washing, etc.  Sometimes having someone sit so you can get out even to do the grocery shopping can be important.

 I am glad (at least today) that I have had this year with my husband and I do not regret the decisions we have made.  I figure those who have not been here can't handle it and that's ok.  It's their loss and if they will do something for me that they are comfortable with then that's great.  If they can't do anything then that's ok too.  It's their problem not mine.

This was a longer message than I intended.  Take care.  Love your sister and do what you can for her.  She will need you.  Don't think about anyone else.

JMB

Thanks for the encouraging words. It will be interesting to see who sticks with the ups and downs. My sister has 5 children and 11 grandchildren so I`m hoping that everybody will pitch in and not just for the grunt work. It looks like this is going to be a long and hard journey for all of us.

It`s pretty ironic that I find myself in the mid-west and close to my family right now.  I have lived in New England for the past 35 years and recently relocated to Iowa (mid life crisis ) I am very thankful at this point to be near my family after such devastating news. It gives one pause when true tragedy strikes...I merely lost my husband, business and home. I am happy to give that up in exchange for health.

It gives us hope when hearing that patients are traveling and working as opposed to waiting around until it gets worse. Sorry.... it`s late and I`m rambling. Please stay in touch. We feel so much better now that we found this site.  We have recieved messages of encouragment and of despair....

Hope to hear from you again :)