Howdy I'm new here! I'm 36 with inoperable brain tumour

[Foley21]

Hello everyone! I'm totally new to forums and have no idea what I'm doing. I'm a 36yr old female have a very supportive husband and amazing identical twin boys aged 5 (very caring & understanding to my condition). I was diagnosed with a grade II oligodendroglioma brain tumour a couple of years ago after having a grand mal seizure in the middle of the night. The tumour is inoperable dur to the position of it - right temporal lobe. I have just finished 6 months of chemo (Temodal) which didn't do much for the tumour but did decrease the seizures I was having. I decided to stop the chemo due to poor quality of life I was experiencing from it and I wasn't able to keep up with my 2 boys. I haven't driven for a couple of years due to my epilepsy either which makes things a bit tricky. I'm about to attend a residential Ian Gawler Program - has anyone done this? Cheers

[CJF]

HI Foley 21, I am also new to this site. I haven't attended a residential Ian Gawler program but I did attend a local Gawler 12 week support group whilst I was undergoing radiotherapy a couple of years ago. I found a great sense of peace through the conversations with others going through similar times. We discussed lots of topics - mostly following Gawler's book, 'You Can Conquer Cancer', and spent time meditating. We did not shy away from the difficult topics and for some in the group, it was the only place they were able to talk openly and freely because they knew others would understand. I feel very privileged to have shared the time with those in my group. I hope you find peace during the course - and enjoy the food. I have one of the recipie books written by Dorothy, an original cook at the program. Great simple food. Cheers

[Foley21]

Hello - Thank you for your response. I also attended the 12 week Ian Gawler course a couple of years ago. I found it pretty confronting at first because I had only just been diagnosed and was still in the shock stage - I wasn't ready to accept it yet. I did the course in hope that it would help get me through the initial difficult few months of feeling numb and not knowing what to do with myself. I was really happy that I did the course. The residential program covers the same sorts of topics as the 12 week course but will include all the vegetarian meals, meditation, yoga, juices, beautiful surrounds. I'm looking forward to my husband coming with me as his way of coping with my diagnosis was to bury his head in work. Do you a vegetarian diet? Cheers

[bugger]

Dear Foley21, Unfortunately it's not available in Australia but have you looked into Cyberknife treatment?

[CJF]

Hi Foley21, Yes, I have been vegetarian for more than 25 years so much of the food discussed in the group was familiar to me. I also began drinking lots of juices which I found helped to keep my energy up. I found it difficult to eat during my treatments for tongue and neck cancer so the juices were easy to get down. I'm pleased your husband can accompany you. I've heard that the support for partners at the residential is very good. When I did the 12 week course I did not have a support person with me. All of the other participants did but I too was in denial about what was happening to me. In hindsight it may have helped me deal with things earlier rather than having them fester. I hope the residential gives you a chance to find some peace. Let me know how it goes. CJF

[Foley21]

Hello Thanks for your response and advice. I haven't heard of cyberknife treatment so I googled it once you sent me the link (thank you very much). I will definately be asking my Neurosurgeon and oncologist about this when I next meet with them. Hopefully it might be an option for me down the track. Have you had this treatment or know of anyone who has? Cheers

[bugger]

Hello again Foley21, Cyberknife is not appropriate for all types of cancer, I had tonsillar SCC which from my research it was one in that category. CK treatment would have been 6 weeks, same as conventional 3DCRT. Although I did a lot of Googling to discover if ck would help me I didn't directly contact anyone who had undergone cyberknife treatment. I found the Accuray Patient Forum a good resource, they have a team of doctors who respond fairly promptly. Not being in Australia is a huge impediment, not just financial but also for support, so if you are in a position to consider ck make sure you are totally comfortable with your treatment decision and are otherwise well enough to live away from home for an extended period. I find it hard to believe that Australia haven't invested in this technology, if you search these forums I previously posted some info about cyberknife. I asked my RadOnc about it and his view was that it was just another radiation platform, I wonder if he would have the same view if he was the patient. Having lived thru a couple experiences of RT I think that not enough focus is given on side effects and quality of life, during and after treatment. When I reported side effects from my latest RT my RadOnc said I should be thanking him for curing my cancer and not worrying about other issues! But I think most RT patients live thru many side effect issues, and it is one reason for some people to abandon conventional treatments and go down the alternate path. If you have considered this option you might also inquire whether Grace Gawler could help. Grace is the first wife of Ian and based on the Gold Coast! I cannot provide any recommendations or endorsement of her services, although I live near the Gold Coast I only just found out about Grace from a fellow H&N patient at a Cancer Council seminar yesterday in Brisbane. There are some lobby groups trying to canvas for CK in Vic and NSW but none appear to have gathered momentum. I think political lobbying for a system at the newest hospitals (like Gold Coast Griffith Uni Hospital due to open on 12/12/12) would be the way to go as it would be difficult logistically to integrate into established hospitals, who are well served with the status quo. Anyway I hope this does not distract your attention away from your current treatments. I found that treatment in Australia for chronic conditions is very well managed thru either the public of private systems. Depending on severity of the condition, the only difference in treatment is that private will get you serviced more quickly.