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For people affected by brain tumours or brain cancer to get together, ask questions...
hi, i'm new here. My name is Carol. Thank GOD for such a forum.
My brother in law has GBM grade IV. In Oct 2010, he was diagnosed with a low grade glioma but the neurosurgeons disagreed saying it was not a glioma. In Sept 2011, it was confirmed that he had GBM grade IV. He had surgery then and in June 2012. He has had radiotheraphy and chemotherapy as well. He had an infection last week and had to be admitted trough ER for 3days. He is at home now but has continuous incontinence, he cannot move without help, he is very weak, he cannot talk much, he is in lots of pain, his head is swollen and he refused to take medication since yesterday. He has seizures quite frequently now that he has to have someone by his side all the time. He had taken tegretol, dexamethasone, pain killers, etc. The neurosurgeon suggested hospice care when he was discharged last week. His first visit is scheduled for tomorrow.
The family is going through so much pain and agony. Their mum passed away 6 years ago from leukemia. Not sure how i can encourage the siblings including my husband. everyday, we get a call about his status and it is worse tahn teh day before.
I need GOD's intervention. Hope HE can use you all.
Hi Carol, my name is Andy and I care for my wife Susan who also has a GBM 1V. I truly understand what you are all going through, basically its hell and so incredibly difficult but when things reach a crisis point as it has it is so so acute. Obviously every case is different in its own way, but what was the infection your B in L had and how was he before it mannifested itself. I ask because Susan had a urinary infection recently and a lot of the symptoms you have listed where what she had. She was already in a wheelchair before it hit, but then she could not stand, getting out of bed very difficult, very confused, urinary incontinence, coma like sleep. She and I thought the end was approaching but once the infection was properly under control she slowly pulled around. Also there are the side effects of the chemo to consider, peripheral neuropathy being one. When did he last have chemo ? I am only trying to say that there may be another explanation to what seems like a dire situation. I hope you don't think I'm trying teach you to 'suck eggs'.
There are also other forums worth going on, BT Buddies is one, another arm of this one is simply a thread called 'We Talk Brain Tumours ', Also BrainsTrust are good and have a Facebook site you can join. They are very approachable for advice and have experts to turn to. Its amazing what advice you can get from others around you. Hope this helps and your brotjher in llaws situation gets better. Best wishes to you all, Andy
Hi Carol, I too am new to this site, and this is the first reply I have written, I saw your post before, wanted to reply and didn't, but have now come back to it. My mum was very recently diagnosed with GBM 4, it has come right out of the blue, there were no tell tale signs, until the day she was admitted to hospital with what I thought might be a stroke. We are all in shock. I am or have been trying to educate myself somewhat in this illness, and reading posts like yours and others while helpful in coming to understand what lies ahead, it also scares me. Reading your words, I could only begin to imagine, some of what you are feeling as you face the prospect of your brother in law going into hospice care, I know one day my family might face this too. You said that you need God's intervention, and that you didn't know how to encourage the family and your husband. Sometimes it has been my experience that when we don't know how to do something, it is because we are actually already doing it, which sounds silly, except I can imagine that every conversation you have with your family will be encouraging, and every gesture you make will be encouraging, even and especially when we don't feel it is enough. In situations like this and I know I am already finding this, that I give my all, but it never feels enough. Dealing with chronic illness myself has taught me I have limitations, and there are limitations to what I can do for my parents, this then leads me to surrender, to humbly admit my limitations, and to ask God for the strength and also the courage to continue sometimes a minute or an hour or a day at a time. I can't do this alone, and while at the very first clinic appointment with mum this week, I felt as though two angels had been placed in our path, because we got speaking to two other people who were also waiting, each of whom were already in the process of of receiving radiotherapy and chemo therapy and they discussed quite openly their experience, strength and hope, with mum and I. They were truly inspiring, beautiful people, and I knew without a shadow of a doubt that we were sharing in a divine moment together, because the day before had been heartbreaking. Be watchful for these in your own life, treasure them, and draw strength from them, with warm regards Trudie.
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