Hi Sandra, my husband has an oligodendroglioma in his right frontal lobe. He was diagnosed in 2004 with the 1st one which was operated on and they are now just monitoring the second one that is growing with 6 monthly MRIs. We have good and bad days and he takes Epilum for seizure control. He too suffers from bad headaches for which he takes very strong painkillers. I'm starting to think that the medication makes them sicker but what to you do? I feel for you as I feel very helpless at times and so isolated. Sorry I can't offer anymore than this. Take care Maya
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June 2012
Dear Dotty, gentle hugs to you too. I cannot begin to imagine what you must be going through and hope and wish that you can find the strength to keep going. My thoughts are with you. Maya
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June 2012
Hi Nic, I hope that he can get back on his feet and mow the lawn soon. It's the small things that are so important and keep you going I think. I miss our walks on the beach but Rik struggles with that even though he can go to work. It's because he was so into the ocean for such along time and now there is always that concern that he might have a seizure on the water so he chooses not to go near it. Is Bruce on anti seizure meds? I do wonder how our daughter will be as she gets older and you are so right that they grow older quicker because of what they are going through with their dads. I know she has told me that her dad is living with a timebomb in his head and that's putting it bluntly. Rik has never done chemo as we were told he would only have one chance with it because of the location of the tumour. We just live from MRI to MRI which means travelling to Perth and staying overnight. Living in the present is what we do....
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June 2012
HI Nic,
Great to hear from you and welcome to the group. You sure have a challenging journey with your husband and I feel for you. Do you have close family/friend support? We have no close family living here so I have found that abit hard as the years go by. I do, however, have some great friends who keep me sane although sadly alot of my husband's friends don't know how to deal with the cancer and stay away. He has become quite reclusive and worries about going out etc. In the last 18 months our lifestyle has changed alot due to his reclusiveness which is hard as we have an 11 year old daughter. Still having said all that he still goes to work and his employer understands the situation so when he's not feeling well he can go home. Does your husband suffer from really bad headaches as this is one thing Rik has on a daily basis and the neurosurgeon says he doesn't know why. They think it could be the painkillers he's on but because he also suffers from chronic pain in his neck and back he's needs to take them. Anyway thanks for getting in touch and hope to hear from you soon.
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Dear John, I am new to this site but am a carer for my husband who has a brain tumour. We have a beautiful 11 year old daughter. As a carer we feel that we need to be tough, take on all responsibilities and try to create a 'normal' life for our family no matter what is going on. You do wonder where to get strength from and I must admit some days I would just love to run away from it all. You are not alone in how you are feeling and to be able to take your dog for a walk and have some 'me' time is very important. A friend told me he was envious of those people that could cry as he said it would be such a release if he could. Do you have a counsellor or someone that you can go and chat to. I have found that this can be very helpful. Take care Maya
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May 2012
I am keen to chat to anyone who cares for someone or has an oligodendroglioma. My husband has one in his right frontal lobe. He was diagnosed in January 2004 and also operated on at that time. They weren't able to remove all of it as they were concerned if they went to deep he would be paralysed down his left hand side. In 2007 a new tumour was found to be growing into the cavity of the old one. This tumour has been monitored by 6 monthly MRIs so we live from MRI to MRI. He is on anti seizure meds and also takes some very strong painkillers for the daily headaches he suffers from. Would love from others about their experiences with this very challenging journey.
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