Yes, it is sad, very sad. I hit a "slump" a short while ago too. Kevin died 28Nov 2012 and as I seem to make progress, something kicks me in the shins. Each trough seems a little less deep and a bit easier to climb out again. For the first time, I woke up a few mornings ago and was so miserable that he wasn't next to me. I thought I was ok with that as I was used to him not being there given hospital stays and the nights he had to sleep alone as he was uncomfortable in bed with me as he needed to stretch out It is so hard. Please believe me it does start to get a little more bearable with time. There are still tears as I think about what could have been and now I try to think about what was and how I can take that into the future with me. You are in early days. At your stage, I was yearning and crying. Nothing made sense. Please be patient with yourself. I am hoping that when you are ready you will find a counsellor who can help you. In the meantime, we are all here sending you love and feeling sorry for your pain. ... View more

So sorry. Your GP may be able to refer them to your local Palliative Care for counselling. There maybe a service for teens. ... View more

We went down the Avastin road too....We were lucky we had money from insurance to pay for it. It was important we had the options. Good Luck...D ... View more

HI Storm, I remember following your blogs re your precious Lorraine as my Kevin was following her path. I remember what you went through and found inspiration. I have always remembered you. Kevin died on the 28th Nov 2012. I have been through all the ups and downs that only grief can impose on you. I think i have done ok and have probably just hit a bit of a downer where my usual techniques no longer seem to be so effective. I feel like I need to land and haven't found my feet. I guess I am also realising life has changed around me without Kevin to support me. Thanks to family, friends, counsellor, and these blogs, I know I will get through the other side. It was so nice to see your blog. Wish the circumstances were different. Hang in there as we all must. We are here for a reason.....Best wishes....D ... View more

Hi Peanutz...wondering how you are going? Kevin died 28Nov 2012. Went back to work part time 3 weeks after he died. Ha stvearted some study. Had friends and family around me and am included in his families special events. Going to his niece's wedding in about 3 weeks. Everything I have done in the last almost 12months seems like "for the first time" Have been able to dispose of more things now. Things I felt a little sentimental over at first have now been moved on. Have been resurrecting the garden and am now thinking about maybe moving house, maybe downsizing a bit. Only thinking about it though. Need more time and energy before I embark on that project. People are right..it certainly is a new life and I sometimes find joy in it. I think I liked the old life though. Oh well....Hope you are ok...d ... View more

PS. Kevin didn't need the dex until much further on. We were lucky. He would have dex after an op then it was weaned off slowly. His face got a bit red and swollen but that's all. One round of dex got a bit too much and he couldn't sleep and would be up at all hours which made him angry. He would give me lectures about things "I did wrong." Again I entered his reality. He could get bad temepered when I was driving and would apologise. I said to him once that he didn't need to apologise as I would assume that the apology was inherent in the temper tantrum. He was ok with that. Please please please DO NOT take any outburst, verbal abuse etc as personal. Cancer itself sometimes can bring out the negative qualities in people. D ... View more

What to expect? that is a hard one as everyone is different and their responses will be different. GBM's are anything but good. The positive is that the brain doesn't feel pain. Kevin's tumour was quite advanced and large when diagnosed. He was a new man after his first op and we had a lovely Christmas and 4 weeks in between op and rad/chemo. Most patients cope really well with the treatments. for Kevin they didn't work though. His dx was16 Nov 2012, second op 15Jun 2012, chemo iv (nil side effects) . From his 2nd op, the MRI showed a new smaller tumour in front temporal lobe. There is a protocol so it seems that they won't do any other ops or treatments without a 4week break. the chemo iv had no effect on the new tumor but seemed to stop the 1st tumor from re growing. He had the small tumor op (3rd op) 26Sept. hat year, Was due to have more chemo or sterotactic radiation. Specialists to decide. Before that he took his first seizure 26Oct. In hospital 6days. the MRI showed that the front temp tumor had grown. I couldn't believe the scan when I saw it. We tried Avastin. For Kevin while it was "treatable" he had hope. I overheard him say to one of his mates. "I don't think this will work." He knew. While having the Avastin, he took another seizure and was hospitalized pending assessment. He took a massive seizure on the Mon night, did not regain consciousness and died Wed morning. Sorry for the not good news storey. However, throughout that year Kevin was blown away by the love and kindness he received from family and friends. We were showered with love. The main side effects for Kevin was tiredness. As the year progressed he became tireder easier. He gradually lost interest in things he enjoyed like crosswords, listening to the radio, reading the paper. I watched his shed layers until he was happy simply sitting with me in the "treehouse" (back verandah) enjoing the sun, rain, trees, birds and the sky. He completely shed anything artificial as he slowly became part of a spirit. it was lovely to watch and we enjoyed just being rather than doing. While you have some energy, do what you can. Asphagia was caused by the seizures and was very frustrating for him. It took me 1 hour one time to work out he wanted his radio. I had explained to him about Asphagia and once he understood it, we could have a bit of a laugh. Although one time he told me that "I had become dumb since he got home." Brain cancer can also mimick dementia, so be prepared to enter his reality. I have the privilege of working as a massage therapist with dementia px. It made it a bit easier for me. We considered ourselves lucky to have warning and could spend time together re connecting and loving each other. It was very difficult at night times. He could be difficult then. There were toileting issues, so pull up padded pants became the go. Eventually a wheelchair was needed. It made it easier for me to get him to the bedroom. during the day he didn't need it. Having said that, when Kevin was having his radiation, we met a man with GBM who walked around like nothing wrong with him, very friendly, looked great and he had just hit 3 years. Who knows???? Wishing you all the luck.... ... View more

P.S. in the meantime, it might be helpful to google the "4 Tasks of Grieving" There are some other websites that are helpful in trying understand what is going on grief. ... View more