Help

[pebbles]

Hi is there anyone who can help me deal with the recent diagonosis of my husbands Gr 4 GBM 4 weeks ago, I have been reading recent posts of people who have suffered from it & I am very scared by what I have read. He is starting Radiation & chemo next week. Thanks

[Sailor]

Hi Pebbles Sorry but I guess you know that that is not good news gliobastoma multiforma is not nice cancer to have - not that any cancer is nice. However, there are people round who do a lot better than others and all those statistics apply to people on mass, not the individual. There is a great article by the essayist Stehpen J Gould called the Median is not the Message. You can find it at www.phoenix5.org/articles/GouldMessage.html. Gould has a cancer with an average life expectancy of eight months and lived for another twenty years. I have friends with a son who has a Gr 4 GBM and is still around and doing well many years later. So hope all goes well and remember if you need help call the cancer helpline 13 11 20. Cheers Sailor I keep sailing on in this middle passage. I am sailing into the wind and the dark. But I am doing my best to keep my boat steady and my sails full. Arthur Ashe

[pebbles]

Thank you so mucvh for answering my cry for help, my husband is very positive & I did read that article yo sent me, I do realise that different people handle treatments differently & I am trying to stay positive for both of us, he is pretty good at the moment, walking, talking(getting a few words mixed up) his eyes are not so good, (he has trouble writing his TAB tiockets, I ad to do it this morning & I know nothing about the TAB) when he went to pre-poll yesterday I had to fill in his form for him but otherwise he is pretty good. Again thank you

[Sailor]

Hi Pebbles It is a very worrying time for both of you and it is going to be a tough time for both of you in the months ahead. So keep on learning how to fill in those TAB forms. Also make sure that you have plenty of support so that you can provide support fro your husband. I mentioned the Cancer Helpline, don't be afraid to use it and there are some support groups for carers, so ask them about it. Also Carers Australia http://www.carersaustralia.com.au are a good resource and have lots of information on what assistance is available to carers. Hang in there. Cheers Sailor As we sail thru life, don't avoid rough waters, sail on because calm waters won't make a skillful sailor. Anonymous

[maddie86]

hi there! im not familiar with this cancer at all but all i can say is vent away on this site! we are all here to help you.. seeing your partner going through chemo and radiotherapy isnt the nicest thing.. it can be really challenging at times and you have to try not to take things personally when they get grumpy... although chemo and radiotherapy can have nasty side effects they do have some good qualities to! i hope your husbands treatment goes well 🙂 stay strong

[Hopeful]

Hi pebbles, I am so sorry to hear of your husbands diagnosis. It is such a terrifying time. My husband was originally told he had a grade 2 brain tumour in Dec 2009 but a year later it had progressed to the grade 4 GBM. So we are about 6 months down the GBM path and he is not doing well. I think the fact he had the other tumour has meant his survival time has not been as good as some others. I remember being so frightened as I started to discover all the info on GBM in the beginning. I just wanted to hear stories of people surviving and I HATED hearing stories of people dying. Just remember that everyone responds different to the treatment and there are some fantastic stories of people still strong 3 or 4 years after diagnosis. They are constantly trialing more treatments and one day there WILL be a cure! I am only 29 years old and I feel so ripped off to be robbed of the love of my life and the father of our son. I have struggled in my head with the thought of loosing him for so long and have felt so desperate and like I was clinging on to any hope - and that was very exhausting. A few months ago it became clear that he was loosing this battle and strangely it was a relief to stop fighting. It is still so heartbraking and painful though but at least now I can take each day for what it is and stop freaking about the worst happening, because the worst is happening! I guess what I am trying to say is that your life will never be the same, BUT don't waste so much time freaking out that it stops you from living in the moment and appreciating each day especially while hubby is still quite well. Much easier said than done mind you! I wish I could tell you that it is easy and all will be ok, but the reality is that it is so freakin hard. BUT, in saying that, there are many wonderful things that happen during a journey like this. You realise that the world sucks, BUT also that there are so many wonderful people living in it. You have moments where you feel you can just not cope anymore, BUT then you find a strength somewhere deep inside to get through that moment. You feel so mad at your partner sometimes because you just want 'the old him' back, BUT you get experience a connection and type of love and care for your partner that is so powerful. I am at the other end of my journey, so I hope I havn't brought you down with the morbid tone of my letter. Hubby and I don't have much time left, but YOU TWO DO! How ever you cope with this, just trust in yourself that you are doing the best that you can. Be kind to yourself and LOVE LOVE LOVE your man. Lots of cuddles are essential!!