About jobeth

jobeth

You are an inspiration. Your commitment to continue to live this life is amazing. I wish I had your inner strength. It can be so easy to blame the world for your circumstances. Be absorbed in the unfairness of life's slings and arrows of misfortune but instead, you make every moment count, your loved ones must be so proud to have you in their lives. Thank you for sharing your experience and responses to what you've been through. It's a deeply personal story and I'm very grateful for having learned of you. Best wishes for continued strength. Jo

jobeth

We did two rounds of Avastin with Etopiside. It didn't work. I feel it was offered too late, just my thoughts. We are only a few weeks away from saying good-bye. 2009. - 2013. We are happy with 4 years. Many people don't see 12 months. We must remember, there is no cure for GBM. So, with that in mind, every day is a bonus. Try everything that's offered but try to be mindful that the time is limited, whatever you choose to do. Good luck, this disease is shocking, it is aggressive and relentless. Hold him tight and tell you love him, every day you can. Jo x

jobeth

Hey there. For mood, try Mirtazapane. It's an anti depressant and absolutely vital for terminally ill people. My husband was very low and very difficult to deal with. The meds worked. We are at the end of life stage. It's an awful disease. Take care Jo

jobeth

Last Friday Brent had his first seizure, it was awful. He was on the balcony at home and I was alone. Holding him up so he didn't fall and hurt himself while trying to get help was a challenge. Thankfully, a stranger at street level call the ambos and when he finally came round a little bit, I was able to lower him to the ground and get to answer the door for them. Thank you stranger. His now in hospice. Originally that was for respite so I could get a few days rest. Things are progressing hourly and now looking very grim. Time is everything so next week I'm taking time off work to spend with him and say my goodbyes while he is still able to communicate. This Friday is our Avastin day, I think it will be our last one...it doesn't seem to be working after 2 cycles. This time is terrible. His stopped texting me. He doesn't like talking on the phone and when I'm with him he won't look at me when I go to leave. I think each time I depart he thinks its the last time he'll see me. So so sad......... My thoughts are with all the GBM carer's and their loved ones today. Jo xq

jobeth

Our children aren't children anymore but one is my husbands child all the same. At first he was heavily shielded but now, (we are in final stages) he is in boots an all and thank god he is, otherwise his guilt for not being around would have taken years to get over. Good luck with your decision. Personally I'd say be as open as possible, you are all going through this together and you will need each other as things get worse. Take care, Jo

jobeth

Dying is such an awful process, as you know through what you've experienced. It's rare that loved ones go the whole distance. What you did took guts, determination and love. You are a very special person. Your experience with your mum is so intimate and will remain yours forever. Try not to judge too harshly the reactions of others. They clearly aren't as strong as you and that's ok. Not everyone can cope to the same levels. And, that's why you did what you did, your mum needed you and you were there. Now take the time you need to heal. Take care, Jo

jobeth

Hi Smiley, My husband has now completed his second Avastin treatment. We paid so far round numbers, $7k. We will have to pay for the next two and then from there it will be free. It's too soon to know what it's doing. We have an MRI booked for May 11, I guess that scan will be evidence of its work. 6 weeks ago was my husbands third craniotomy and his last. Radiation not offered. Oncology our last post. Two weeks after surgery I was told he had weeks to live at best. 4 weeks on from there and hes still walking, talking and living. He's a different version of his former self and his not a happy camper but he's not reached the end. So we continue..... All the best with the Avastin. Jo

jobeth

Love to you and your family Trish. I hope your grief passes with time and the memories that remain are those of happier times. It's a cruel and relentless path that our GBM inflicted love ones travel and we, the carers, wives, partners and family are left with its aftermath. My Thoughts are with you. Jo x

jobeth

Oh Minx, so so sorry for the news. This disease is so unforgiving. I'm quite a distance down the road from you and all I can tell you is: rest while you can. Share the load with family and friends because it will be a tough road to travel. My husband has entered the abusive stage. It's so hard not to take it personally especially with sleep deprivation, so make sure you take care of you first and everyone else next. Thing of you xxx jo xxx

jobeth

Hi, We are at almost 4 years since my husband was diagnosed with a grade 4 GBM, we too are in final stages of the disease. We have income insurance for my husband however I'm still in my early 40's and work in a senior exec capacity. Although the company are sympathetic to our situation I understand the need for them to have a return on their investment in me. Additionally, when my husband dies there is no financial payment coming to me, we are a second time round marriage, his son is his benefactor so you see, I have to work. It's hard, I'm only just holding on. Last Friday we met with the Palliative care doctor who informed us, of all cancers, primary tumour has the highest "burn out" rate for carer's - fantastic!! Enjoy your time with your husband, while you can, it's precious. Jobeth.

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