MissyM My husband was diagnosed in March 09 and right from the start we were told that he was going to die. They gave us an estimate of 7 -13 months based on his history and were not far off (he passed away in December 09). At the very start the doctors (neurosurgeon and oncologist) told us that whatever measures we took were hopefully to delay the inevitable and to give him as much time as possible with us but he was told to get working on his bucket list. My husband's tumour was debaulked in Mar 09 ( as completely as possible). He had a regrowth in August abt 2mm abd by november the chemo stopped working and it was all over his brain so they could not operate further. Try not to spend your time worrying about whether your dad is getting better. He will have good days and bad. The best you can do is to maximise the time you have with him however long that may be. There are GBM patients who have survived years. We met someone who had been diagnosed 5 years ago and is still around, a bit more bruised and battered from the treatments but around. Also, the doctors when they comment about your dad are referring to him as compared either to how he has been so far or to other GM patients not to how a normal healthy person would be. I remember being really annoyed with the oncologist for being so blunt and lacking compassion. It was only after my husband's passing that I realised that he was only being real. I wish you and your dad all the best on this very difficult journey. As Rach has said its the time that you get to spend with them that's precious. Hugs ST ... View more

Tanya I am so sorry for your loss. Your dad is lucky to have had you by his side. I hope you have people around you who can give you the support you need at the moment. ST ... View more

Hi Mands My husband was on tegretol but still had seizures. He also had balance issues. Try not to think of how your dad has changed because that will rob you of the now, of the present that you have with him. With GBM there is a high chance he will never get back to 100%. I compare it to someone aging 20 years in a matter of months. It robs us of the person we love but we rob ourselves of the precious time we have left with them if we dont make a conscious effort to continue to reach out to the person we love. I know this sounds cliche but it really is one day at a time from hereon. Try not to get ahead of yourself. Wishing you strength and love during this difficult time. ST ... View more

Hi Mands My husband was diagnosed with GBM IV in March 09 and we lost him in December 09. He too had a tumour removed from the frontal lobe. Like your dad he kept talking about getting his licence back. Depending on where the tumours are you will notice some slight deficiencies over time. My husband's was in his right frontal lobe. He suffered short term memory loss, some loss of language (as in he suddenly couldn't find the words and had gaps in his speech). He also slowly lost mobility on his left side. He was however still able to walk up to 3 weeks before he passed. To people who did not know him well, he seemed fine. I wish both you and Tanyag and your dads all the best. ST ... View more

Chartas I am so sorry for your loss. I lost my husband last December to GBM (brain tumour) so I know a little about what you must have gone through during your mum's last few days. His battle lasted 9 months so in a way we had more time to prepare for his passing. I have 2 girls aged 4 and 10. It has only been a month for you so be gentle on yourself. Try to do a few "normal" things everyday if nothing else for the comfort of routine. Over time you will heal and it will become more manageable. You will always miss her but hopefully over time the memories of the last weeks will be replaced by the many happy memories you shared before she fell ill. My older one and I have just joined grief support groups and will be attending our first meeting next Monday. So you see its an ongoing process. I hear you on the finality of death. I keep thinking of our marriage vows..."til death do us part" and somehow they now seem not quite good enough. But he will always be a part of my life. His legacy lives on in our girls and I am who I am today because he loved me for 11 years. Similarly you and your children are your mum's legacy. Over time you will see things around you that remind you of how your mum continues to touch your life. Be kind to yourself Sangeeta ... View more

Hi aussieboone When my husband was admitted in palliative care he was effectively nil by mouth because he could no longer swallow. He had several brain tumours. Initially we used ice chips to moisten his mouth and then switched to a gel. He lasted 15 days with no fluids or food. I was told that each individual is different and yes it could be weeks. I am sorry for what you and your family are going through at the moment. The palliative care staff should be able to answer any questions you may have. Sometimes its just hard to ask the right question. Regards thaker ... View more

Hey Jill After all that time caring for Greg its hard to go back to a "normal" routine. The last few weeks and days were probably all non-stop care. Its been 12 weeks but probably the first 6 passed in a blur. I too had difficulties at the start going to bed. I got so tired I could not function yet I still could not get myself to bed. I spoke to my GP and because I was reluctant to go on sleeping pills (having kids I worried about not hearing them if they needed me), we decided I would try some herbal relaxants. I have tried different combinations and now take 2 cups of herbal tea before bed. I took slightly stronger herbal relaxants for the first 6 months and they ensured not only that I slept but also that I had sleep uninterrupted by dreams. Not many people realise this but grieving is a very tiring process. I myself only recently realised that part of my fatigue is related to the grief burden I carry around. Another thing that surprised me was that my heart physically ached (still aches). I guess I never thought much about grief and perhaps thats why I keep getting surprised by what I am experiencing but I am also learning that all this is normal. I think with time we will learn to cope better and maybe then it will get easier. Hugs to you and your boys Sangeeta ... View more

Jewel The tough questions will continue. My four year old asked me yesterday why everyone else at kinder has a dad but she doesn't. I guess with father's day coming up there'll be a lot more questions and a number of sad moments. Sangeeta ... View more

Jewel and Julie I hate to admit this but 7 months on I am still sorting out the too hard pile. You would not believe how difficult transferring a direct debit payment can be. Isnt it amazing how fast everyone around you goes back to their normal lives. I have had shocking things said to me like "surely you've gotten used to it and dont miss him any more". I attended an info session at my now previous work place where some financial planners came in to give a talk and the planners example which she kept using was of a client whose husband died of cancer leaving her with all sorts of issues and none of my colleagues or bosses attending that session thought to suggest she use another example...I am supposed to get on with it. Accept the crappy deal I have been handed and not make a fuss....why...because to do otherwise would make everyone else uncomfortable.... I hate that being a widow seems to come with a silent beacon to one and all to keep away. Suddenly we are an unknown species and people dont know what to say or do. My cuts go a little deeper. My husband's family has not bothered to keep in touch. We moved recently and when I told them we were moving they didn't ask where to. My older girl had a birthday, they did not call to wish her. They live 20 minutes away yet the last time they visited us was in January. My heart aches for the girls that they have been "abandoned" by that side of the family. My new number is listed. Not one phone call yet. I am a little further down the track from you in terms of sorting out affairs but I've walked a similar path.Hugs to both of you. ... View more

Hey Jill The suggestion that you try talking to your counsellor is a good one. The pain cant be taken away but there is a lot of processing that needs to be done when grieving. I saw my counsellor til about 3 months after hubby's passing. Its hard to let them go and although physically they are gone the emotional process of letting them go in our minds and hearts is hard and takes time. Its not about forgetting ...its about getting to a place where fond memories replace the emotional and almost physical pain you feel right now. Its also ok to be struggling. No one should expect you to be able to pull yourself together at this stage. Don't expect too much of yourself, allow yourself to let go a little, to lean on others a little and to breathe a little. Allow yourself to be angry, to be sad, to feel nothing even on some days. Let it out. Don't expect to be the same again. Slowly a new you will emerge...not quite the you before Greg, not quite the you with Greg, More a you that has come about from being with Greg and that person is worth getting to know. You are a wonderful person and I am sure you and your boys will eventually find your new normal. In the meantime, remember that you are loved and others feel and share your pain. Hugs Sangeeta ... View more