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sheila5's Recent CancerCompass Activity

  • Sheila5 has replied to a post on the message board

    Hi Kelly, Thank you so much for your post.  After 6 1/2 years of battling a brain tumor, my husband passed this past December 9th.  During that battle we had encountered financial difficulites and we had moved into an apartment.  So many things have happened during these years and I believe I had actually started grieving his loss for a very long time before he actually died.  I have been in a ba...

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    • Sheila5 has replied to a post on the message board

      Thank you for the positive words and telling me it is ok to feel what I am feeling. As time goes on, I am sure I will figure all this out.  I guess it is ok to laugh and just be my silly me.  I guess it is ok to cry and smile and at the same time. Hugs! Sheila

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      • Sheila5 has created a new message board discussion

        Hello, I have always posted the Brain Cancer Message Board and never on the caregiver board.  After 6 years of posting and following posts to get the latest and most up to date on John's brain tumor. Now that John has been given 1 -4 months, I find myself dealing with alot of emotions. I feel like I have made alot of the necessary arrangements for John.  I have hospice in our home, I have picked out the ...

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        • Sheila5 has replied to a post on the message board

          thank you I will give that a try

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          • Sheila5 has created a new message board discussion

            Good Morning, I was wondering if anyone noticed a pattern of what time of the day or night when the symptoms are worse? My husband's seem to be worse at night.  If he wakes to go to the bathroom he does not have control of his torso to sit up.  He seems more confused in the morning and then in the evening when he is more tired.  I am thinking that his tumor is pressing on something when he is laying ...

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            • Sheila5 has created a new message board discussion

              My husband's health is declining rapidly.  I have insisted that my children stay with me to help take care of their dad.  I have had 2 near misses of him falling into the TV and off the couch that he could have hurt himself and me easily. However, when they are here he perks up and they think I am crazy. Today,  before my son arrives at 3:00 pm he has soiled the bed and his clothes.  I have chang...

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              • Sheila5 has replied to a post on the message board

                Good Morning, in the last month my husband has declined very quickly.  He has a CNS brain tumor.  It has always been inoperable and had to be treated with chemo/radiation.  He was first dx in July 2007. We past our 6 year mark this year.  We have roller coaster after roller coaster, which included several recurrances along with cataract surgeries and a hip joint replacement.  John does not h...

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                • Sheila5 has replied to a post on the message board

                  Dear Sarah, Your words of advise are so wise and so educationa.  I know I am a pivotal point with my husband and I have asked some of these questions. The one question he will not answer for me is - where would you like to be buried.  I have asked it in different ways and we have openly talked about it but he seems to give me vague answers. He always says where you and the kids will be.  When I am o...

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                  • Sheila5 has created a new message board discussion

                    HI there, My husband had low dose WBR last August.  He has started to have extreme fatigue and gait issues.  If he starts walking too fast, he can't slow down his legs.  His balance is off, as well as his energy level.  He has no energy.   He has an MRI on July 20th but we visited the Neuro-oncologist last week and they said they think his symptoms are from the WBR.   Just wondering w...

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                    • Sheila5 has replied to a post on the message board

                      Hi Donna, Well John had the low dose brain radiation that ended last August.  He didn't have any immediate side effects except for fatigue. John was diagnosed with cns lymphoma in July 2007.  We never opted for whole brain radiation at the regular dose, we always said we did not want it because of the side effects that come with it and it would compromise his daily living activies.  So he had th...

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                      About sheila5

                      Caregiver
                      Lymphoma, Brain Cancer
                      Cancer Treatments, Chemotherapy, Emotional Support, Cancer Nutrition

                      John was first diagnosed in July 2007 with CNS Lymhoma. His mass was in the Left Frontal Lobe and crossing the midline. We found out later that he was given a 40% chance of survival. He underwent 10 rounds of High dose methotrexate. Things were going pretty good. Then in September 2009 I started noticing little things that you could explain away. He kept complaining of eye floaters and seemed a little out of balance. His optomologist at the time, said he had a cataract. Thanksgiving 2009 he was having a hard time speaking and kept dozing off. A couple days later he couldn't sign his name. We thought he was having a stroke, darn it. The CNS Lymphoma had returned with ocular lymphoma this time. He had the cancer in 6 different spots in the brain. He again had 9 rounds of Methotrexate plus the addition of CHOP treatment. He currently is receiving Temodar for six months. We are afraid his ocular lymphoma may be back. UGH! His attitude is so awesome, he makes me ashamed of being afraid of the unknown. Prayers are appreciated! Well he did it again, he fought back and went for 20 rounds of radiation to his eyes. At the moment, no active lymphoma cells in his eyes! Dec. 2011 John is battling CNS Lymphoma for the 3 rd time and it is also in his spinal fluid. John and I value quality of life, again John opted for the chemo cocktail. It put his cancer back into remission. July 10, 2012.. we are visiting the doctor for the next step . The next step was low dose brain radiation, followed by 2 rounds of cytarabine. My poor John, but he seems to fight through it all. Finally done at the end of October 2012. It is now March 20, 2013 and it has been confirmed that John has lymphoma cells in his right eye. Next step is to check out brain involvement. He is scheduled to have the fluid removed from his eye next Wednesday and then in a couple of weeks start the methotrexate injections in the eye. My poor John. I am amazed at his strength and my calmness. John seemed to be on the 2 year maintenance plan. The tumor reappeared in his brain stem this past August and was confirmed in September. The day of our 31 st wedding anniversary. We brought in hospice and John slipped away peacefully December 9th at 5:10 a.m. I closed his eyes and kissed him goodbye. We will meet again..The love of my life has left this earth.

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