I'm so sad to hear. Stay strong in the knowledge that your dad has fought a massive battle, loves you and your family and will continue to always enbrace you with his love.
My Dad has been in Pallitive Care 2.5 weeks now, and is ever so slowly making his decline into sleep.
My heart goes out to you all on this journey of loosing your loved ones to GBM. Reading your posts was both sad and a relief for me as I could relate to exactly what you were saying. My 33 year old husband is also in the final stages of GBM.
I have not been on this site for a while as I have not had the energy to discuss anything. It has been 15 months since my husband was diagnosed with a low grade brain tumour and 5 months since the diagnoses was upgraded to a GBM. We have been through the chemo/radio/surgery thing too and currently hubby is bed bound and needs full time care for which I am doing myself as I want him home with me as long as I can. We have input from the hospice etc who pop in to help out.
It is so gut wrenching and heart breaking to watch my precious husband be robbed of the man that he was. Some days I feel I can no longer cope and then I get a rare moment with him where I get a glimpse of who he used to be and the connection we used to have - and that keeps me going. We also have a 2 year old son who has become my saviour. If it wasn't for him I reckon I would want to follow my hubby to the next world as the pain sometimes is so unbearable.
At the moment we are just trying to make the most of each day, and I am so thankful for everyday that we can still be together. He has major ups and downs, somedays are so bad I think that we are near the end, and then other days he seems quite well. I am finding the ups and downs very hard to cope with as every time he goes down I emotionally prepare myself for the worst. I am finding it all pretty exhausting at the moment, but I am trying to just take day by day.
You all sound like such strong amazing people and I am so sad that there are other people in the world who are also feeling what I am (but at the same time it is also nice to know I am not the only one).
I hope this finds you all as well as can be and I want to send all of you some love, especially those of you that are dealing with your loved ones being in their final days.
I just wanted to say that you are an amazing person. You are doing an absolutly wonderful job, caring for your husband the way that you are. I have watched my mother care for my father the same way, and seen and shared their pain, their ups, their downs, the struggles and the exaustion.
PLEASE take care of yourself - you NEED to be well to take care of your husband.
My dad is still being cared for in Pallitive care. He is deteriorating very very slowly, which is just so difficult to watch. He has always been a very strong, happy man - and now I see him cry everyday - and there is nothing I can do to make this all go away.
Hugs to you all,
I just registered today and I have been reading all these GBM stories. My husband of 34 years old was diagnosed with GBM stage 4 3 months ago. We too have a 16 month old son. I don't know what you are going through as at the moment you wouldn't even know my husband has a brain tumor but I think about being in your situation everyday and trying to know how I would handle it. I can't offer you any words other than you are not alone.
My dad passed away on the 17th march 2011. He was a fighter, a strong man right until he took his last breath. Dad was given three months to live 7months ago so he did good. His strength and positive attitude has inspired me and my three boys aged 9, 10 & 11. Dad died at home surrounded by familiarity and most importantly love. I didn't realise how hard that would be as death did not come easy for him (I think due to his stubborn nature!) but If I could go back I would do the same again. My dad was a good man, he faught bloody hard and I will miss him every day.
I wish everyone of you all the love and support and strength for this journey that has been chosen for you. Remember, no regrets, life is short and do not underestimate the viscous nature of gbm and most importantly, of your love
Oh Mands I am so sorry to read your post. Having just gone through this I feel your saddness. At the same time I wish to congratulate you as you not only gave him love but the support of you all being around him, that is so powerful. You have kept a possitive attitude and good outlook on life which can be difficult during this journey. Make sure you look after yourself and take time out when you need it.
To everyone going through this, my dad would often give me a hug and say can you feel the strength.... well I send you a hug and hope a little bit of mine will help ... xxxx
I am so sorry for your loss - but what an amazing relationship you had with your dad - one that will live forever.
Stay well, my thoughts are with you.
Dad is very stable at the moment, so the Doctors estimate of 2 - 6 weeks has not been correct. Pallitive care will put a care package together for us after easter so that Dad can come home. They think his slide could take months. In many ways its nice to have all this time, but at the same time I dont think he wants to be in this position either. I just want whats best for dad....
Sending you all my best wishes,
My husband ,aged 47 was diagnosed with a GBM grade 4 in April 2010. He awoke with a stiff/sore leg, which progressively became weaker - 36 hours later we received the diagnosis of a brain tumor .
He has had surgery, rehabilitation, radiation, chemotherapy & also stereotactic radiation.
The initial tumor was on his right side , the second tumor presented below the original site 3 months after April surgery. We were advised that surgery was too risky on the second so continued with chemotherapy & 5 months later had the stereotactic procedure.
My husbands left side movement is effected (has been since April surgery) and seems to be gradually deteriorating - he obviously cannot drive but continues to work as this is an important positive in this world of which he now feels he has little control.
We have an amazing team of specialists caring for us and our oncologist and GP support us enormously - in that we are so fortunate. That being said though I hate it - I hate that this tumor has taken over control of our lives & changed the man I married. I feel so selfish sharing this because I know my husband hates it too - my greatest fear is what will happen & how.
On the outside I am trying to remain positive & I haven't given up hope - but my husband and I are both realistic and understand that this is what will claim him - when is a anyones guess . I am not scared of being on my own but I am terrified of how this may effect our two amazing teenage sons.
I seem to have garbled on but it does feel better & reading your posts have inspired me to contribute so for that I thank you
Hi Smiley, you sound very brave and strong both of which can be hard to be. My thoughts and possitive vibes are with you and your husband as you undertake this journey. You will be the guide for your boys, I know with my son he often took his lead from me in how he behaved and the conversations that we had. All I can say is be true to yourself and be kind to yourself. It is often the ones watching on that find it the hardest and can be too critical of themselves. Take Care
Thanks - but I am not really brave or strong - sadly I just think that may be part of the coping mechanism for when everything hits the wall. I do try to be positive most of the time but that is more of a front - please don't misunderstand me as I am not giving up but the prognosis for this cancer is definitely not good. My biggest worry is that the memories of our lives will be imprinted with the 'cancer phase' and that it will be harder to remember the good times - though I am sure if it comes to that like anything we will just have to look harder and the memories will surface.
Cancer Council NSW would like to acknowledge the traditional custodians of the land on which we live and work.We would also like to pay respect to elders past and present and extend that respect to all other Aboriginal people.