But many high-risk women who should get scanned don't, experts add
Page 1 of 2
by LiquidxAngel - October 28 at 8:54 PM
On Jul 06, 2013 7:14 AM Andyatto wrote: Thanks for the reply. I guess I'll battle on. It's very hard to find reliable information. Every little bit is beneficial
On Jul 06, 2013 7:14 AM Andyatto wrote:
This is a battle that I recommend you actively search out the best team that you can.If you are not happy with your current oncologist (from the sounds of it, I wouldn't be either), PLEASE, seek out others. There are great resources all over.It isn't an idle disease.(Sending you healing thoughts and prayers)
by LiquidxAngel - September 22 at 5:39 AM
As cliched as it sounds, I actually thought I'd turned the corner on my grieving. Yet, in mere moments, I found myself a sobbing mess with that heavy pain of a broken heart every bit as potent as the night my father passed away.The nights are so still and so quiet. It is such a dark place where grief takes me.I suppose, what I'm trying to ask, is: "How did you find your peace and what ways worked best to comfort you?" Thanks everyone...
by LiquidxAngel - September 03 at 6:37 PM
You were the one with him in the end. You were the one caring for him most. Becoming a full-time caregiver carries enormous stress. I think all caregivers "break" at some point. I know I did.Caregiving doesn't come with an instruction manual. It doesn't matter how many times you google "how to be a caregiver", no ONE site has it correct. You did the best that you could with what you had. No one on earth should ever hold that against you - least of all, yourself.
by LiquidxAngel - August 25 at 6:32 PM
My father and I never openly discussed his dying and we never said goodbyes. I suppose it may have been too painful for us both at the time. Still, despite that (or because of it?), I have had several very moving dream of my father since his passing.It may be lengthy (I apologize in advance) but here is one of the dreams I had of him:----------------------------------------
The Time Capsule
In the dream, there was a "fad" that people were doing prior to dying. They were making time-capsules to give to those they loved as a personal memento. Each one would consist of five items chosen by the person who was passing...
My father made one for me and in the last moments before he died, I ran to him with the items so he could explain them to me.
I could see his labored breathing but he was neither scared, nor in pain. He was calm. Ready. No outward traces anymore, of the ugly tumor that invaded our lives...
I knelt next to him, closely, and held up the first item. It was an oddly shaped paintbrush. The bristles were squarly blocked and the handle oddly shaped so, in the hand, it had to be held a very specific way. "What does this mean, Dad?" I asked...
"This is to remind you that you can thicken or thin the trees of your Life any way that you want - it is *all* in the technique and how you handle the brush. Learn that, Kate."
The second item was a simple and small paintbrush - the kind that you would get in any children's set of watercolors. "And this one?"
"That is how I want you to remember me. I was a simple man. Neither special or unique. A simple, imperfect man." I stopped him there and said, "No, you are my father. You will always be special to me. Always."
He smiled weakly and I rummaged through the capsule. The next two items were simple sterling silver rings, both with amber stones. Not fancy but elegant in their simplicity.
"Those are YOU, Kate. What you've always been to me and to my life. I chose amber because it is a living stone. Full of warmth and able to hold both time and memory within it. You are that to me, natural, beautiful and able to carry with you, the best and worst of life. I know you will always keep me alive within you."
At this point in the dream (and while I was sleeping), I was in tears because I knew his time was approaching the end now. I hurried and grabbed the last item from the capsule: a simple strand of aurora borealis colored prayer beads."Before you go, Dad, tell me of this too... please."
His voice cracking and barely above a whisper, he said this: "That is my promise to you, Kate. There is magic after this life is done. There is so much magic afterwards and I love you."
... and with that, he closed his eyes and took his last breath.When I woke up from the dream, I was in tears. I was crying as I slept (my brother said) and I cried when I woke up. I cried for about three hours afterwards too.
by LiquidxAngel - August 25 at 5:48 PM
Daryl: Let me first start with saying that I am so sorry you and your husband must face this awful disease.To answer your questions - I can only give you a recount of what I experienced with my father who battled with Primary CNS Lymphoma for eight months before the tumor became resistent to chemo/radiation treatment. Everyone's experience is different. Tumor location(s) factor a very large role in symptomology. "Luckily", my father's largest tumor was in an area of the brain that suppressed much of his pain. Even up to the final days, I only ever needed to administer morphine twice. His regression was very quick. Once the tumor developed resistence, he was gone in less than two months. Regression happened in stages of function loss. My father's tumor affected his balance and gait first leading him to become immobile and with little use of the left side of his body. As progression continued, he lost his continence. After that, everything went downhill at an alarming rate. Loss of appetite and thirst. Increasing moments of confusion. Lethargy and excessive sleeping (and being more difficult to rouse from sleep).Once he started refusing food/water, it was a matter of days before he slipped into a coma and passed away peacefully three days after that.Like I said though - with brain cancer/tumors, every situation is unique. For a better guide, I'd recommend for you to visit this site:
Everything is pretty much summed up here. You can also read of other caregiver accounts regarding end of life experiences.While CNS Lymphoma is not "brain cancer" per se, it mimics a LOT of GBM symptomology and found that many of the GBM personal accounts had similar traits to my father's cancer. Hope this helps and I'm so so sorry that you guys are having to go through this.
by LiquidxAngel - May 03 at 10:49 PM
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.
by LiquidxAngel - April 08 at 6:11 AM
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.
by LiquidxAngel - April 08 at 6:05 AM
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*
by LiquidxAngel - March 06 at 12:38 AM
I don't think you could have said anything better than this regarding my own feelings of being the "sudden caregiver".
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.
by LiquidxAngel - January 26 at 3:49 AM
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.
I have taken the journey to a conclusion but that does not mean the path has ended.The battle has changed but the war is always there and until lymphoma is no more, I have been called on to be a proverbial soldier in arms.(My Personal Journal)
We care about your feedback. Let us know how we can improve your CancerCompass experience.