I guess this will be some sort of therapy for me so I will let it be done here and let out some emotion and feelings on this board. Writing it will likely be good for me. Thursday morning I got one of the worst phone calls of my life. I was woken up to my phone ringing but I was too late, then I got a text message from my dad saying call him 911. So I proceeded to call him. He told me about 3 weeks ago he started having issues with his speech like knowing what he wanted to say but he couldn't get the words out. This happened for 3 weeks and he finally went to the doctor last week. When he went they immediately put him in the hospital as they said he suffered a mini stroke. Well they did some tests and found swelling around his brain and it turns out he has something called glioma. They did surgery on him yesterday and removed some of the tumor which was causing the issue but apparently glioma is also terminal cancer. Obviously being 16 time zones away from my dad has made hearing this news pretty surreal and devastating. He didn't tell me any of this even though he knew probably because he didn't want to worry me but his girlfriend told me what was going on. Based on my research the average life span of someone who gets glioma is 14 months but some people have lived up to 5 years. I just don't know how to deal with this. I'm still hoping that maybe he doesn't have this and maybe it's just benign but it doesn't seem likely but I won't believe it until he tells me. I'm just curious if any of you have had to deal with this knowing that your family member has cancer that will not go away and what kind of therapy they found works best for them. I guess the obvious answer before someone asks is yes I will be moving back home to the States to be with my father but probably not until the summer as right now I can't swing it for a variety of reasons but what types of challenges will I face and how should I plan on dealing with them.
I watched my Dad die over the course of 2 years from a brain tumor and the surrounding complications. I was very young at the time. Talking about it will help. Learning about it as much as you can will help too. If you need someone to talk to PM me.
Wishing you the best. My 6-year old daughter has a glioma, albeit not a life-threatening one. I'd advise you to get hold of the exact diagnosis if you can - gliomas generally have very long, frightening names. You can determine the circumstances, and arm yourself, when you find out exactly what it is.
I am sorry hear that Barry. Good luck to your dad. Please talk to Stokes as he will help you tremendously.
Hey man sorry to hear. I have a friend whos mother got diagnosed with pancreatic cancer. If you need to talk or have any questions id gladly make myself available.
Yes, I have had a family member diagnosed with terminal cancer. My grandmother had breast cancer and by the time it was diagnosed, it had metastasized (spread to other organs) and at that point it is usually too late. I will recommend a book to you. "An Inconvenient Tumor" by Bryan Bishop. He was in his late 20s or early 30s and started losing his balance occasionally, and then he went to the doctor. Eventually it turned out that he had a glioma; the deadliest and most common form of brain cancer. His doctor said "I'll give you six months to a year." That was over 5 years ago. He has a connection to the celebrity doctor Dr. Drew, who recommended Dr. Black, the best brain surgeon who ever lived. After looking at the charts, Dr. Black concluded that his tumor was inoperable. The tumor was growing around certain parts of the brain where, he would basically die if they removed the tumor. He got referred out to a different doctor, who decided to go with a semi-experimental, non-FDA approved tactic. He prescribed him with the breast cancer drug Avastin, which would usually be used when the patient only had 1 or 2 months left, something like that. But he was prescribing it months in advance of that. Bryan had a radiation treatment. This is a very traumatic, big-deal, one-time thing. You can't do it a second time, and as a young man who had just been married, it was also devastating to know that this would sterilize him because the radiation kills all your sperm and all your ability to make more. So he had to have some frozen in advance. After the radiation therapy he became incapacitated and couldn't walk anymore. He was bedridden basically all the time and his wife I believe had to quit her job to take care of him. He could barely talk and could barely get out of bed, they needed handrails so he could make it to the bathroom. After they started Avastin, he started to become less unstable. He was able to see better, and his sense of balance started to return. On his monthly or bi-monthly brain MRIs, it showed that his tumor was shrinking. Eventually, he was able to walk normally again. He regained his ability to speak and think completely normally. He has been cancer-free for zero days. He still has a malignant, deadly cancer wrapped around the base of his brain, the part that tells your heart to keep beating. The tumor is something like 25% of its original size and last I heard, it is holding steady and is stable. When he was diagnosed, and they told him 6 to 12 months, his instant reaction was "Whoa! Well, that doesn't apply to me." The comedian he works for raised about $250,000 for his medical treatment, and he was able to get the best treatment. A big element of luck is involved, and he also had youth on his side. Most of the patients were much older, and they probably have shorter life expectancies. Bryan admits that statistically, it's likely that at some point when he gets his MRI the doctor will tell him his tumor has grown a little bit. And then more. And then more. And then he will lose his balance, and become incapacitated again, and then he will die. He knows that that's a likely scenario. The biggest thing for him has just been to choose life. To choose to live knowing that that Sword of Damocles is hanging over him always. It's been 6 or so years, and he's just making sure to try to live his life to the fullest, absolutely enjoy every day that he can with his wife, enjoy his work, be fully present and fully engaged with his life and not on auto-pilot like the rest of us. He has no signs of dying, and for all we know, he could even live 40 or 50 years with terminal brain cancer. He just has to take his meds and trust his doctors, and hope that if things start going wrong that they will find another drug that will work. I don't know what your dad's age is, or anything about his tumor.. but family is very important. It's also very important not to give in to despair. Also not good to go through it with denial, although that's also a common and not unreasonable thing. I would try to spend time talking to him as much as you can, and try to get him the best medical care you can. If a doctor says there's nothing that can be done, find another doctor. Find a doctor who is willing to think out of the box a little and look into a drug that isn't traditionally used for brain cancer but has shown promise. If your dad is an older man, I would put extra emphasis on just trying to max out the remaining quality of life that he has. Find out some of the things he's always wanted to do, and do as much of that as you can with him. Don't leave anything on the table, don't leave anything unsaid- but, I'm sure he also knows how dearly you love him. Just be there for him as much as you can, and try to get him the right doctor and never listen to the doctor who tells you to give up or pray for a miracle. Look for a doctor who's a fighter.
Sorry to hear about your dad Barry...Be strong for him and it will mean a lot that you will be closer to him
Thanks for all the well wishes and replies. I will PM a few of you guys when I get the time and chance . I spoke to him today (it's already Tuesday night for me) and it was just great to hear his voice despite the fact that his speech is really slow and he forgets things. He was trying to tell me that he now has an irregular heartbeat but he kept saying heart brown... He just wants to go home and it sounds like he will soon and then he'll start the chemo. After doing a bit of research I have found that there are different grades of glioma and some much more aggressive and work much quicker than others. I don't know what grade it is and I guess they'll be waiting for the biopsy results for that. The doctors really haven't been very informative maybe because they themselves might not have all the information.
Lost my sister to pancreatic cancer last year . She passed away a year and a half after the doctor told her about it . The initial shock was horrendous . Like with most things , as time passes , it gets easier to handle . I spent 2014 in a fog but things are starting to get back to normal (if that's possible) . Give it time .
Very sorry about your father Barry. I lost my dad 2 years ago after a long battle with COPD, emphysema and diabetes at 72. He came to terms with it very early after the diagnosis (6-months to a year), and vowed to make it to his and my moms 50th wedding anniversary almost 2 years away. We were talking about his illness a couple of weeks before he passed, he said to me. "I've had a good run, a great wife, 4 great kids and 10 grand kids, I'm a happy man." He did make it to their anniversary, 3 months later he went to take a nap, and remains sleeping peacefully. I wish you the best Barry. Know that the initial shock will wear off after a couple of weeks, and things will be easier for everyone. The stronger you are for him, the easier for him it will be.
This was a really inspirational post, thanks. I am hoping to be able to take my dad to the Jet game in London next year, it would kind of be like our last vacation together. It would be special as his parents are both from England and he has never been. If I could bring my son it would be even more special.
Stay Strong my man, there's nearly nothing as challenging as what you are going through. -You and your family are in my prayers
