9 years ago I learned about hope

[lilyjohn]

Just want to remind everyone to be careful with what you say. There are times when just a few careless words spoken without thought can make the difference between life and death.

Day before yesterday was September 19th. Nine years ago I had a very special day with my Johnny. We were so full of hope and he was so determined to beat his cancer. He was going most of the day without the oxygen, taking no pain meds and improving everyday in is stamina and his outlook on the years ahead. We thought we had time so much time ahead of us to make up for all of the years we had lost. I can still see us sitting in the car looking at the moon. I remember him saying how romantic it was and that we had never shared that experience before. Such a special day then my life and us were shattered by a few careless words.

On September 20th all seemed as it had ever time we had gone to chemo in the past but it wasn't. They were extra crowded with no seats and decided to take Johnny to a little storage room to get his IV started then move him to the chemo room when a seat opened a few minutes later. He was claustraphobic. That had a bad effect of him but what was to follow cost us our peace and him his life. I have no doubt about that.

Because he had had an adverse reaction to the carblplatin, or at least they thought that was what had landed him in the ER one night they found nothing else and drew that conclusion, they were giving him only the Taxol. When I asked if they were not going to replace the carboplatin with something else the chemo nurse said later. Johnny said that maybe he wouldn't need a next time because the chemo had shrunk his cancer so much already. That is when that nurse did the one thing that no one should ever do to a person. He took away Johnny's hope. His words were " I don't want you to get your hopes up. You will be on chemo for the rest of your life."

How dare he? How irresponsible can a person be and someone in his position. Without hope what do you have? That remark led to Johnnys death. It robbed us of our peace of mind and destroyed his life and nearly destroyed mine. It is only his love and the love of God that have kept me going and made me determined to work to make sure no one has to have their hope destroyed.

By that night Johnny was having night mares. He needed his oxygen more. Later the anxiety and panic attacks started and they tried to up the Ativan instead of giving him something else and he had such a reaction that he lived in fear of the ativan and with good reason because later it would be that and a mixture of drugs they would never give to anyone else that took his life. Add all of that to a doctor or at least one who wore the title of doctor, who thought he knew best and would never take a suggestion or answer a question and you have two months of hell that no one should ever have to endure. We had 5 months together when we should have had years. Once careless remark and 2 lives were shattered and so many others hurt.

So be careful what you say. You can't take those damning words back and they can cost a person not only thier life but their peace of mind. If you are a patient or a caregiver and someone says something like that remind them that they are not God and they are playing with lives when the speak carelessly and take away hope.

[Joppette]

Lily,

You are so right that no one should rob us of hope. No one can tell us when we will die, or how we will die. We are not statistics, we are human beings. Sending you a big hug right now.

MI Judy

[Nick C]

Ugh...so wish that didn't happen!

[jaminkw]

So sorry about that memory you have to live with Lily. My experience is the opposite. I remember my onc saying once, "Judy, it's not like I'm asking you to stay on chemo the rest of your life." Four years later and I've been off chemo only 6 mos. Still on it now. Feels like it will be forever but my hope is intact. Wish Johnny had someone like that.

Judy in KW