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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Occasional Contributor
Hate predictive text, sorry for spelling mistakes
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Super Contributor
Hey Jobeth, I'm really feeling for you. Life can turn to c**p so quickly, can't it. You're in my thoughts, Emily. x
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Oh Jobeth my heart aches for you. So wish we all lived closer so I could give you a hug. Be gentle and kind to yourself it's all so tough but then so quickly it's over. Terese.
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I am so sorry to see what you and your husband are going through .
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Jo Beth, you are such an amazing woman. Can you take stress leave from work, try & cherish some time together? I understand completely where you are coming from, intimacy walked out our door a couple of months ago. Dex is a bastard, it's a saviour but a cruel & nasty drug. Allow yourself to cry xx
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Occasional Contributor
Thank you for your kind words and encouragement. Cancer is relentless and oh so cruel. Our fight is almost 4 years long and I'm now wondering, 'why'. What have we achieved? Everyday for 4 years dying has been a fear. Every night battling thoughts of impending doom to try and get some sleep. Doctors, hospitals and now dying has arrived, finally! I understand fighting the fight that has a percentage chance of winning. Fighting the fight that has no silver lining prospect, for me, now looking back, makes no sense, it's torture! It prolongs the inevitable and all those around the patient sit and watch with no control, their loved one slowly disintegrate, it has been my worst nightmare! I'm sorry for my negativity, but it's honestly how I feel today. I wish you all so much and I hope your stories are different to mine. I hope with all my heart that your fights can be won. That they get better and you can go on and life the cancer free lives you so wish for. Take care, stay strong and thank you once again. Jobeth xxx
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Oh Terese, How are you? I read your blogs with tears, knowing how tough you were doing it. You have been to hell and back. I wish you healing and although distance may stop us from catching up and supporting in person, I'm here should you want to cry or vent or just recount him as the whole person, before cancer. Take care, I'm thinking of you. Xx
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Occasional Contributor
It's a delicate balance for me, my work. I've only been with this company 7 months and lets face it, corporate Australia is under pressure, cut backs everywhere. The truth is, I need my job. And, I'll need a break to recover and re-build after 'it' happens. So I'm holding on for as long as I can. I suffer feelings of guilt. I know I'll look back and regret not having spent more time with him but then again, he isn't who he was 2 months ago and back then we had the most amazing holiday in Paris, I can hold that memory close, forever. It's tough being the carer. How are you coping? Do have good support and are you taking time to care for yourself? I haven't been but this weekend has made me realise how fragile I am and how important it is for me to have some "me" time. I'm going to book a hotel a have a couple of nights away from home closer to work so I can escape. Go to the gym, catch up on baths and facials and nails etc. I haven't been to a hairdresser since early December, last year!!!! So, if you need an ear or some support, inbox me, I'm here and happy to chat, anytime. Hugs, take care xxx jo
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Jo Please take care of yourself. I can not believe how quickly things can turn so bad. Hugs Min
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Occasional Contributor
I know Min, it's scary how fast and aggressive this shit thing becomes. I honestly thought we would get another couple of years, no idea why I thought that, but I had convinced myself. Now, I sit and look at him and I can't believe that in a matter of weeks months if I'm that lucky, his chair will be empty and he will be memories in my mind! I kills me. Cherish every bloody second, GBM is a cruel and savage beast. Take care Jo x
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