LiquidxAngel

When my father's cns lymphoma (primary, only in brain) regressed and stopped responding to chemotherapy, the doctors at Johns Hopkins gave him ten rounds of low dose radiation and sent him home on hospice when they realized that the radiation wasn't being effective.  He was too weak from the chemotherapy (very brutal on him) to be recommended for stem cell therapy.

Radiation is usually done in conjunction with chemotherapy (usually AFTER the chemo treatments have finished). Like all people getting brain radiation there are always risks of developing cognitive deficits later on. Usually, younger people respond better (bodies are usually stronger) to having radiation.  

I'm so, so sorry.  

If you ever need an ear, please don't hesitate to message me.

I'm wishing you and yours comfort and peace.  

I lost my father this past October as well.  We were best friends too. 

He had a very rare form of lymphoma that only manifests in the spine and brain.  His was in his brain only.

Like so many others, I cry everyday too.  It's hard to describe to someone who has never experienced any aspect of brain cancer.  It truly is an entirely different and excruciating world.

My father was the strongest man I ever knew and I watched the tumor and cancer reduce him down to nothing. It broke my heart then, breaks my heart now, and will always do so.  

I can't tell WHEN it will stop hurting.  I'm in the same boat as you.  I feel the grief hanging from me like the heaviest of chains and nearly everything is a potential trigger for the uncontrollable tears.

The best we can do is to just take things one day at a time. Keep reaching out to others who can comfort you even a little and always keep your heart open for any signs from your husband. You'll know them when they happen, trust in that.

I wish you hope and joy and all the peace you can get. *hugs*

 

I don't think you could have said anything better than this regarding my own feelings of being the "sudden caregiver".

It's brutal.  

My father and I were VERY close.  When he died, i lost TWO irreplaceable people - my dad and also my best friend.

It made me so soul-weary sometimes and I drove head-on (going what felt like 90mph) into the emotional wall so many times that I lost count.  

There were so many VERY dark nights and I felt so guilty having them and being affected by them.  I kept trying to tell myself that my own struggles were insignificant compared to what my father was going through.

Since the "wound" of grief is still fresh, I am in a constant struggle regarding EVERYTHING surrounding my father's death.  Second guessing.  Re-living.  Flashing back to seeing my father waste away.  Did I do the wrong thing?  Should I have done this, or that, or WHAT IF ....

There is no healing in second-guessing but, I believe that's really part of the process of being a caregiver to someone with chronic/terminal/serious illness.

I hope you can find peace and a balance in becoming the sudden caregiver.  I truly do.
 

It's so comforting to read everyone's experiences.

I too have had several "synchronicities" regarding my father and his passing.

(A little background)

For starters, my father was my best friend.  He raised me as a single parent and did anything and everythinng he could to provide for me.  It was NEVER easy and I saw many times, how it took its toll on him.

With that, over the years we really developed an amazing bond. We loved nothing more than just sitting around, relaxing, listening to music over a beer and wax philosophical topics.  We also loved to go camping - something about endless stretches of a starlight sky inspired us both.

So... Best friend. Father.  Both irreplaceable and both taken from me when he died.

He battled PCNS lymphoma for eight months.  I saw the cancer take the strongest man I ever knew and reduced him to an empty shell.

It's been less that three months since he passed away so I am grieving heavily.  Yet, in that time, I've had some amazing experiences.

Like you, my first "message" came to me in a dream.  It was about a month and a half after he died.  In the dream, I went up to my room to do some routine chores and cleaning.  After tidying up everything, the last thing that needed to be done was dusting the wooden blinds.

As I approached the window, I noticed something immediately - the light that was coming through the lines of the closed wooden blinds. It was a beautiful golden hue and was warm.... so amazingly warm (despite the blinds not even being opened).

I felt like I'd stepped into the light of the most beautiful spring day.

As I finished the dusting, I turned to walk out of the room and noticed my father, asleep in my bed.   I felt my stomach drop through my feet and that instant anxiety that follows.

"Dad??? Dad, is that you?  Did you come back?"

His eyes fluttered open and he smiled at me once, smiled again, and then I woke up.

Metaphorically, I think the room cleaning is symbolic of life. As I could not open the blinds, I wasn't "allowed" to see anything beyond but the smallest slivers of beautiful light.  I consider this to be a gift of glimpsing what comes AFTER "our cleaning is done". 

There are other experiences, I've had but don't want to make you read a book of them. *smiles*  If you want, drop me a message and I'd be glad to talk.

All the best. 

My father (60) openly battled PCNS Lymphoma for eight months.

I have no idea how long before diagnosis the cancer was there.  By the time he exhibited symptoms, the cancer was very advanced.  

If caught early enough, CNS lymphoma can be cured completely.  The recurrance rate, however, is quite high.  The chemo sessions are also very hard on the body.  

One thing I learned is that every single case is different.  Not everyone responds the same to identical treatments.

My father did really well at first.  After about six chemo sessions, the tumor stopped responding to treatment of any kind (including radiation).  Regression was quick.

I pray you guys caught it early when it's easier to treat.  All my best to you and yours. 

I NEVER (read: EVER) had any experience like that with Hospice while caring for my father.  

I would SERIOUSLY look into a different hospice provider.

This is an extremely important, meaningful and demanding time on many levels.  Proper hospice is vital.  They need to care.  That's what it's all about.

All of the people we dealt with (through Gilchrist Hospice) were incredibly caring, warm, and compassionate.  Matter of fact, I will be scheduling some grief consuling with them soon (and it's covered in their services through my father even after his passing).  I have up to a year to seek guidance and support through them (they have even made personal calls to check in on me).  

This "hospice" company/care you are describing is the exact generalized image of hospice that scares so many people from such an amazing service.  

Seriously, look into a new hospice provider or do whatever it is you have to do to get satisfaction from them.  

This is time that can never be "redone". Your father, you, and your family deserve to have the best transition as possible. 

My heart goes out to you - so very much.

My father passed away in October from PCNS lymphoma.  Like your mother, he'd exhibited few symptoms (had some eye floaters that his eye doctor chalked up to "getting older") until one weekend, he had severe speech issues.  

My first reaction was to think it was a stroke.  I called the paramedics and by the time the MRI was done, we were told he had a mass in his brain with multiple lesions.

He responded well to initial treatment but the tumor, being so advanced, eventually grew resistent to chemo.  From diagnosis to death, it was a turbulent eight months.

My father had little pain as well.  It was a mercy.  He simply grew weaker and less responsive as the days drew closer to the end.  He passed peacefully.  A single exhale and he was gone.

He looked more peaceful than I'd seen him in months.  

I think we suffer (as caregivers) more than anyone.  We can only sit back and watch as they slip away.  It's really tough.

Spend as much time with her as you can.  Tell her you love her, every chance you can.

I'd crawl in bed after my father became fully unresponsive, and just run my fingers through his hair and tell him how much I loved him.  I made sure, at that point, to tell him it was okay to go too.  I didn't want him to keep fighting just for me (we were each other's best friend).

I grieve for losing him, greatly.  As an agnostic, I don't have the full comfort of faith, sadly.  Some days, I wish I did though.

Surround her with all things great about her life.  Pictures. Music.  Family.  All of it.  Let her final moments be surrounded by utter love.

I'm so, so sorry for you, for your mother, and for your family. 

My father had PCNS Lymphoma.  

Like your mother, the symptoms were SUDDEN, and considering his diet (and lack of exercise), I thought it was a stroke too.  It wasn't until I got him to the ER and they did the MRI that it showed a mass.  Localized.  In the brain.

Initial thoughts were GBM.  After biopsy, the lymphoma diagnosis was made.  He responded well to the first five or six rounds of chemo.  It's a very VERY brutal chemo cocktail, though.  

It took a lot out of him.  He was only sixty but had lived a hard life so, not as strong as he used to be physically.  After six or so rounds of chemo, (he was doing great), the tumor developed a resistence to treatment.

Regression was very quick.

Now, I'm not saying it to scare or frighten you.  Some people can actually be CURED (though recurrance is common) from this awful cancer.  Just stay alert to the treatments (make sure she's getting a blood thinner too - the chemo can cause DVT and clots) and if it seems like the cancer has stopped responding, if she is strong enough for it, do NOT be afraid to seek other chemo and treatment options.

There are several chemo cocktails developed to help battle CNS lymphoma.  There's also stem cell treatments and radiation.

While it can be overwhelming and frightening, do as much research as you can.  THe more you know, the more you can be aware of and be on top of, if treatments need to be adjusted or changed.  

All my prayers to you and yours.  I hope you guys kick the crap out of this cancer and it never rears its awful ugly head again. 

My father (also named Dennis/Denny) passed away in October from Primary CNS Lymphoma.  Like you, my father faught it until the end.  

It only took eight months for the cancer to take him from us. It's a terribly aggressive and rare form of brain cancer/tumor (he had a singular tumor and several brain lesions).  His symptoms started suddenly (over a weekend) and by the time he was diagnosed, the cancer was advanced.  

The doctors (@Johns Hopkins) said, without treatment, he'd have made it another two weeks (maybe).  We got eight months.  Excruciating moments that bounced between hope and despair.  The hardest decision I ever made was bringing him home to hospice.  Once home, it was less than three weeks and he was gone.

At onset, his memory was affected.  In the ER, he had no concept of time or who any of his family was.  I was petrified he'd forget all of us and the good memories in the process of passing.

He didn't.  The last words we shared were saying that we loved each other and he said it with my name included.  I know that sounds "trivial" but I'm sure you know how meaningful that could be. 

He wasn't ever in excruciating pain - for that I'm thankful.  Like your Denny, my father simply become more and more unresponsive until he fell asleep and slipped quietly away.  In a single exhale, my father left us.  The swelling of the steroids began to immediately lessen.  The lines in his face softened.  No more tension.  No more struggle.    

My father, finally was at peace.

Watching him waste away was torture for me.  The cancer took everything from the strongest man I ever knew.  It can't hurt him anymore, though.

We were VERY VERY close (best friends) so I am still grieving heavily but I can say that I understand and can fully empathize with what you are going through.

All my best to you and yours.