Hi. My name is Mark. I am 43 years of age. I live in the inner suburbs of Melbourne, having moved from Sydney around 8 years ago. My partner’s name is Nat, and we have no children. For the last 10 years I have worked for a major health insurance company in and around their call center in lower level management and organizational roles. Around two or three weeks ago (maybe 21 March 2014) I was diagnosed with terminal brain cancer. The technical name of the illness is Glioblastoma. This is the most malignant and aggressive form of brain cancer. I will try here to explain the prognosis as I understand it at the moment, however It is most probably not 100% accurate; will be refined once I have more appointments with oncologists, palliative care doctors and other health professionals; and no doubt the prognosis for this illness will depend upon all sorts of factors such as age; health; and the nature and position of the tumor. The doctors have suggested that without treatment the tumour is sure to grow, or come back in other places. The tumour will impact my brain function. How that may look is unclear. I will die in around 12 months. With treatment, the prognosis is likely to change. I have had two brain surgery operations since the 19th of March 2014 and the doctors have taken out as much of the tumour as they possibly can. I understand that this is the absolute basic requirement for further treatment. Firstly I am pretty sure that without the first operation to take out as much of tumour as possible the pressure that was placed on my brain as a result of two large tumors would have killed me. As that was an emergency operation the neurosurgeons explained to me that they thought they could have a second go at the tumour that were left in my brain, to ensure that everything that was possible that could be removed was removed as that has an impact on survival and maybe quality of life. This made a lot of sense, and while it was scary for me to sit down and make a rational decision to allow surgeons to cut into my brain and try and dig out errant tumuor cells, there was not really a choice to be made from my point of view. The operation, which was performed on 28th of March 2014 was very successful and I have made a great recovery and am improving every day. Pending discussions with radiotherapy oncologists and medical oncologists I may now schedule chemo treatments (apparently a low impact chemo drug that may serve to extend my life without having a detrimental affect on my quality of life) and radiotherapy. No doubt things will become clearer after discussing with the oncologists. I have a few reasons for writing this blog: 1) I think it would be useful for people who are newly diagnosed with Glioblastoma to be able to reference from start to finish one person’s journey with the illness. If these already exist it will not hurt to have another one. 2) Provide a semi creative outlet for myself. 3) Allow my friends and family to see how I am doing if they wish. 4) Express my thoughts on life, dying and a diverse range of subjects. At this point in time I am very “with it” and can express myself pretty well. It is my hope that this lasts as long as possible and I can continue the blog up to as close to the end as possible, but we will just see what happens. Please also note, I have quite a strange sense of humor and outlook on life. I am not sure if I can blame that on the brain tumour or not but be warned – this blog is sure to offend. I am not talking about offensive language, or dirty jokes and that sort of stuff but probably more at humour directed towards things people think are too serious to be joked about, and maybe some controversial attitudes. Please read at your own personal risk of being offended.
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You should also be prepared to live a lot longer than you seem to expect. My husband is now 7 years and eight months after diagnosis of a GBM with a very similar initial prognosis to yours. Well done for planning to post and share your experiences. You seem brave and sensible and thankfully still eloquent. I am an advocate of denial and indefatigable hope, possibly not smart but different things work for different people. Hope that all goes well for you and that you are still writing your blog for ages and ages!
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Hi Mango, Thanks for your comments. It is fantastic that your husband is still with us after over 7 years. Well, it sounds like your denial and hope is working well for you, so I would stick with it unless it ever stops working! I do not really advocate for a defeatist attitude. To me it is best to hope for the best, prepare for the worst and do everything to make the most of everything that I (we) have got. It is nice to hear from you.
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Welcome Mark! It is great to have a blog- somewhere to voice your feelings & also brillant for others to read both now & in the future. My husband had a astrocytoma BT and fortunately for us lasted 23 months before he passed away on the 31/01 this year. You are in for a rollercoaster, enjoy every moment you have.
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Hi Melanie, Thanks for your comment! I am sorry about your husband dying but glad that you had quite some time with him before he passed away. I hope that you will be able to make the most of the new phase in your life and that over time you will be able to move forward to good things in the future. I think that I am as ready for the roller coaster ride as ever as I could be. I just started treatment in the past couple of days, and have been successfully trying to enjoy life as much as posisble so I'm pretty happy at the moment. I saw a documentary about Doc Neeson, lead singer of legendary band the Angels on the ABC the other day and he was diagnosed with brain tumour around 15 months ago. You never know what goes on behind the scenes but if I am as well as he looks to be in 15 months I will be a pretty happy person! Cheers Mark
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