Does anyone have a similar experience?

Karen1
New Contributor

Does anyone have a similar experience?

Hi there,

This is the first time I have looked for support. It’s hard to do.

my son was diagnosed with ph+ ALL in 2005 at the age of ten. He was diagnosed the week of his birthday. He had a bone marrow transplant at first remission.

He has since had 6 relapses.

His latest treatment has been Car-t cell. (Dec. 2020 and again in Aug. this year) It didn’t work for long. 

We have been told that his relapse is imminent. He is 25years old.

He has physical problems because of the extensive chemo, radiation and drugs over the years- so he doesn’t work and hasn’t managed uni. 
The longest break he has had between relapses is 4 years.

 

I am single and have 2 other adult children- 24 and 19.

I work full time and have developed social anxiety and pretty much stay in the house unless I’m at work.

 

This is probably the most emotionally unstable I have ever been and would really like to chat to someone who might have some of the same feelings/ experiences.

 

Thank you for reading. 
Im sorry you are here too 

K

3 REPLIES 3
JohnDenning59
Contributor

Re: Does anyone have a similar experience?

Hi Karen, I'm so sorry to hear that you and your son are going through this. As a parent myself, I truly can feel your pain. Kids are everything, I know.

 

For me, personally, when I told my family members that I had been diagnosed with pancreatic cancer a few months ago, one of my biggest concerns was how they would react to the news. I made it clear to them from the start that the last thing I wanted was for them to feel stressed or upset, but rather to just stay positive for me. And they have done, all of them, including my wife. Interestingly, we still laugh together on occasions, often at stupid things. 

 

Just curiously, how is your son going psychologically? I only ask this, because if he is maintaining a positive outlook on life, (which, in itself can be difficult because we all seem to be living in some kind of malfunctioning matrix at the moment) then that is a great thing. My point is that I'm sure that your son would want you to be relaxed and positive also, just as I want that for my family.

 

Also, you mention that your son had trouble getting through uni because of the treatments he has been having for so long. And I understand why only too well. I've only been on chemo for a few months, and physically it has proven to be quite draining. My thoughts here are, does your son have any passions in life that he can build on? For example, music, or musical instruments, writing, and so on. I have always believed that to enjoy the life that we have, one needs to have both a passion and a goal.

 

I'm nearly sixty, by the way, so I've lived a fairly long life I suppose. But as I said, always with a goal and a passion. Without those, things stagnate.

 

I guess what I'm trying to say is that happiness, positivity, goals and passions create harmony and positivity. Emotional instability is not good, I know. I've been there too over the years.

 

PM me if you would like to talk. Otherwise, hang in there. I'm sure everything will be fine for you and your son, and I wish you the very best of everything.

 

JD

 

 

 

 

 

 

 

Karen1
New Contributor

Re: Does anyone have a similar experience?

Thank you so much.
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Wegotthis
Contributor

Re: Does anyone have a similar experience?

Karen 

 

It brakes my heart reading your story.

My biggest fear as a father and now grandfather is having to go through what you are. 

I'm very thankful that I have lymphoma and not someone I love. 

I believe cancer is harder on the people who care about the person with it.

My only advise for you is to find someone you feel comfortable with and let out your feelings.  Sadly this is something I struggle with.  So I know its easier said than done. 

I'm very involved in my church. There are times where I wish someone would push me to open up and express how im really feeling.  I leave church mad because I feel they don't care.  But I know deep down inside they love me and know I'm not very open about my personal problems.  But I'm the first person to offer to help...

Please find that someone. Because you need to be a 100 % for your son. Im sure seeing you this way is not making him happy..

I wish I had a magic pill to offer you 🌹

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