March 2013
March 7, surgery to respect two tumours, one in the basil ganglia the other in the frontal lobe ( this one was respected last August). Post op, doctors happy with debulking result.
MRI day 1 post op, tumour cells on the move, discharge from hospital, prn panadol.
Re-admission 2 days after discharge, massive headaches, now on morphine. Discharge, this time on Endone. Prognosis, very poor.
Re-admission another 2 days after discharge, massive headaches, again!!! I'm so distressed by my husbands pain, 4 kilos of weight gone, savings on PT gym sessions. Discharge this time with list of pain management and the biggest bag of meds I've ever seen. Told weeks!!!!
Now home, had 5 days etoposide. Bloods good. Latest MRI, not good. Cells are global and times awasting. Stress about dying for us both. Husband is beside himself with grief, anger, fear. He stops speaking preferring to use single words rather than conversation. I'm lonely now. My husband has left me.
Huge doses of dexamethesone, 16 mgs per day. He doesn't sleep, he eats all day and night and our intermate relationship now longer exists. Yes, there, I spoke about it!! Avastin is next.........
We used to own a Nissan 370z now we own a wheelchair. I work, senior manager corporate Australia, he gets supervised daily. I coordinate our life. I juggle my work and I cry a lot. Oh this life is so unfair. If you've lived it or are living it, I'm here with you.
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March 2013
My heart feels for you. Sadly we have something in common although I have not visited your latest destination, that is a short distance away.
This cruel and relentless disease takes those who deserve so much more. I live in the hope that one day we'll have the answer to it.
Till then, those of us here will cry, fear and finally grieve.
Thinking of you and all of us who have to live this.
Hugs
Jo xx
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March 2013
Thank Minx,
When I first posted here back in January we has just returned from Paris feeling slightly hopeful for a few more years. Or, until they found a cure!
Last Friday that all changed. During a routine MRI we were told there was a tumour in the caudate nucleus and that was inoperable. Live with that over the weekend, cry a lot, and wait till CNS clinic visit on Thursday. Here we are told that a tumour, located in the frontal lobe that was removed last August had regrown. This is in addition to the the Caudate tumour and that there is a query on the opposite side to the frontal lobe tumour. WOW! Another craniotomy is offered but I got the sense they were being nice. If we take surgery it stands to give us 5 months till we see dephiceit. If we do nothing, 3 months.
And, then there's Avastin. $15k and maybe it will change the scan and maybe it will not.
We are so confused and scared. We don't know what to do. All this for us and we at least have some medical knowledge in our home, my husband is a GP but he simply does not know what to do.
This morning we go grocery shopping. At the checkout, there is a woman and her husband in front going through. 2 mins into our waiting and my husband says, excuse mame, there's a line here, you shouldn't push in!
3 months they say? Reality is, no one knows. So, how in the hell can we decide on our best path for care if they don't know!!!!!!!
Scared, alone and incredibly frustrated.
Jo
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Is there anyone with a GBM tumour that is inoperable on Avastin? If so, has it slowed progression?
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February 2013
Hi Jackie,
You must be so scared and lonely? I can feel that in your message.
My husband has GBM. On Friday we got the news that things are moving fast after 3.5 years of things being stable. We are on our way now. As his partner it is so scary. I can't tell you what it like worrying about what I will see him go through. As partners we don't feel it's appropriate to share our concerns and fears. My advice to you as a partner/ witness to this horrible thing is to take some time acknowledging what it must be like being him. It's tough because you are dealing with your own responses to your future and it can be impossible to contemplate the burden of others emotions but trust me, the fear is crippling. I think maybe he needs to know you realise how scary the future looks from his eyes.
You may find through acknowledgment he will open up to you. Maybe counselling could be a good back up plan once you have started the discussion. He will need lots of support.
Good luck, you're in my thoughts , Jo
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February 2013
Tammy I'm thinking of you. I'm also thinking about your strength and commitment to your husband both in life and beyond.
Love is an incredible thing. Remember in tough times like today how lucky you have been living your life with a man who's love will remain with you forever.
Good luck with the funeral and don't forget to after yourself.
Jo xx
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February 2013
Limbic system is the primal brain, below the grey matter.
Still trying to get my head around this New Normal.
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February 2013
Results: tumour deep within the limbic system. Inoperable.
It's not the end. It's not the beginning of the end. Perhaps it's the end of the beginning?!.
Jo
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February 2013
Thank you. You're in mine too. I hope you're ok? If ever you want to talk, I'm here. X
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