Welcome Mark! It is great to have a blog- somewhere to voice your feelings & also brillant for others to read both now & in the future.
My husband had a astrocytoma BT and fortunately for us lasted 23 months before he passed away on the 31/01 this year.
You are in for a rollercoaster, enjoy every moment you have.
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It has been one week since I farewell my dearest. 2 weeks since his passing.
The funeral was wonderful, exactly how he would have wanted it. Great friends, family & awesome music.
I managed to say my eulogy, which in itself was a massive achievement. At now 32, I can say I have done a lot of things many others have (travel, kids etc) but I stand proud to know that I have known true love- something many others never experience in their whole lives. I had it for 15 years, and I am a better person because of the whole journey.
I have my moments, today was a little hard- my first valentines day single. It brings a whole new range of emotions which I find extremely hard to control, I have no one that wants to make me feel special & rock my world.
***I'm 32, a mum, and single*** I no longer have someone who adores me & tells me that daily- I struggle with the deep inner thoughts that my subconscious places trying to destroy me from the inside.
I have this fighting need for independence, but yet this constant need for acceptance.
Others around me don't quite understand me, they can't begin to comprehend what I have gone through. They tip toe around me, scared they will make me cry. I joke to lighten the mood, and find myself confusing others even more.
As many of you on here can appreciate -This is something as a carer for your partner that is difficult to come to terms with. You & your needs are no longer important during the CANCER journey.
Not many people can understand the intense need to feel like a lover (not a friend,a carer, a mum etc) and for me (like I'm sure many others) it has been so very long, and I am scared that I don't have ability to do so anymore.
I have taken great solace in music, I've had special friends that listen to me over analyse everything whilst I desperately try to find the real me. A great friend, who came out of the blue, tore my world apart & showed me I could still smile & laugh even though it felt like my insides where collapsing like the world trade towers.
Each day is a new day, sometimes more lonely than others but with time- I know that this too shall pass.
My journey here has ended. This will probably be my last entry, as I start the new journey of discovering Mel.
I, like the world trade centre, will eventually be rebuilt. No longer the same, but hopefully better, stronger & more empowered.
Please feel free to continue to PM, I am always here to help or be a shoulder to cry on.
“The purpose of life is to live it, to taste experience to the utmost, to reach out eagerly and without fear for newer and richer experience.”
― Eleanor Roosevelt
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Yesterday I had to view Ben's body for identification. He was so peaceful, and handsome it was refreshing, sad, but made me smile.
Today is the funeral, I am attempting to say my own eulogy, not sure how I am going to go- but I at least have to try.
It's still very sureal, but very peaceful. Others are more upset than I am, which sometimes makes it hard.
I am a bit lost today- the kids are annoying me because the only way they know how to deal with this is by crying & having tantrums.
I feel like I don't have the patience to deal with them so I walk away and hide alot. Allowing my parents to take control.
They are sleeping over nan's for the first time tonight- it will be the first time in months that I have had an empty house.
Back to reality on Sunday, both my parents are going home & it will be just me & the girls.
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At 3.18pm yesterday on the 31st January 2014, my dear sweet gorgeous husband passed on.
The only relief is that by him passing, that feckin tumour lost its blood supply too.... so I am very happy about that.
************ I am going to blog today about death, if you are reading this but not in the right headspace to deal with the death part, please stop reading now. I know 1 yr ago, I couldn't read about what was going to happened to Ben, it was just to heartbreaking**********
Ben requested many months ago (and also confirmed recently) that he would like to die at home, as long as the girls were not disturbed.
So on Thursday night it became apparent that the end was getting nearer. I called his parents to come over & advised them they were more than welcome to sleep here. He had what sounded like pneumonia and was coughing & choaking, his lungs were giving up. He was given more morphine by the amazing silverchain nurse, and discussed that tomorrow his pain pump would be increased substantially.
We sat, talked, watched, cuddled & kissed him all night until about 1am. His dad went home to sleep, & his mum stay here.
He slept peacefully (and I managed a couple of hours sleep) until he started to get restless again. I managed this with clonazpam until the silverchain day nurse arrived at 11 to increase the pump.
The family came back together to his bedside vigil, I pointed out that his breathing was now all abdomen as his swallow & gag reflexes had gone, and his hands were very very cold.
We knew it wasn't long. His bestfriend called me, and I told him, if he wanted to come, the time would be now. He arrived just after lunch.
Ben struggled, and had laboured breathe for hours, until 3pm came. It was then he started to change his breathing, he was like a mechanical pump- in and out in and out- all timed perfectly, had you closed your eyes you would have thought it was mechanical. Then in and out and a little hicc, every couple of minutes, then that little hicc increased and increased and increased.
I layed across his chest (which is were I always landed when upset) playing with the hair on his chest, and holding his hand till the end.
He took his last breath, and I felt a wave of energy wash over me. Almost like his spirit kissed me on the way up.
I sat with him for hours, I washed him, I kissed him, I cuddled him. The girls came & went for the entire time, they kissed him and I talked about how he looked as he started to change colour. She then stood up, and demanded we take down all her & her sisters drawings & paintings that were stuck up for him and demanded that they must go with him, as they were his treasures.
Even when the funeral directors came, I watched them wrap him up and place him on the trolley.
By this time friends & family had all arrived to say goodbye, and my dearest husband, my best friend, my soul mate was pushed through the alley of people including his two daughters.
The girls called out as the shut the door, "Bye bye daddy, Bye Bye"
I love Ben to the moon & back.
I'm am so devasted to have lost my soul mate.
I know in time I will be ok. I'm kinda ok now.
But shit..Robbed of the most important person in our house.
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Today a subcutaneous pump was put in, to give constant morp/maxalon & clonazepam.
4 seizures today alone. Before the pump was put in, he was holding my hand, then reaching out & flicking the top of my skirt, then picking at a bit of tape on the bed rail- the brain injury is becoming more and more apparent.
I decided tonight was the night to write his eulogy. I needed to have a cry, and then be able to go & lay with him and hear him snore. Is it strange that I want to record his snoring.... so I can listen to it in the future.
I came across this blog which is so true & I thought I would share it with the widows & widows to be.
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We have been home from hospital for 9 days now.
We are good friends with silverchain now, with regular daily visits as things change.
As per discharge details he was being weaned off the dex(steriod) but after waking up to him knowingly peeing everywhere, stating he didn't care- I knew something was up. and that the pressure in the brain had increased dramatically.
Then came the nausea, so the last 2 days has been terrible terrible headaches & constant vomiting. So now back on the dex, trying to boast it up to give him a little more quality.... but I doubt it will work for long.
I rarely see my Ben anymore, the glimpses of him & his cheeky nature are slowly going. And to be honest, I thought I would be distraught, but I have a strange calmness that has washed over me.
I'm ok for him to go now. And although I will be sad, I don't think I'll be as distraught as I once thought I would be.
These last 2 years has given me the ability to grieve over and over again, allowing me to be strong right at this moment when he needs me the most.
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I know it's a month since your post, and I'm not sure if you are still questioning your cousins behaviour, but I just wanted to let you know that what your cousin has gone through is what my husband has, and he is actually the same.
It's very hard to accept, but once accepted you can move on and continue caring for her the same way. Always remember she is know longer the person you knew, and sadly brain damage can make them act extremely differently.
I long for the day where my husband says I love you & he looks & sounds like he means it- but now it just a blank face & an empty stare.
Brain cancer is truly terrible. I'm sorry you have to watch her go through this.
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So, my last 2 weeks started the new year with an almighty BANG!
Ben had a substantial fall, we think he may have had his first seizure. And he cracked his head on the toilet bowl very hard.
Rushed to hospital via ambulance, and MRI found large amounts of fluid on the brain therefore requiring them to insert a VP shunt to drain the fluid to his stomach.
Here begins the worst 2 weeks of my rollercoaster ride of caring for someone with a brain tumour.
If you have been reading my blog, or following my journey you would know that we have had quite the easy ride so far, considering.
Ben has been mobile & alert for almost 2 years with very little pain.
These last 2 weeks have been incredible, I am amazed at how little sleep & food my body actually requires. I have seen the utter torment that a brain tumour or injury does to a person. From extreme outbursts of anger, confusion, inappropriate comments, and paranoia.
Our expected stay of 3-4 days became 14 days as the confusion was so extreme, and I really thought we would never make it out of there.
I have spent hours convincing him that we are not in Polynesia or siberia ..... even Japan. I've spent nights convincing him that he was indeed in a hospital, not a "big brother" tv show- even though he was convinced he saw the room with all the surveillance monitors & cameras. I've spent days convincing him, that I was indeed his wife- not Melissa etheridge (although I am not entirely sure he even knows who that is :)
And I've spent many a moment laughing & cringing at him calling nurses different names & telling them to take off their clothes.
We are finally home, and the confusion is almost gone. A familiar house, smell & sounds all the comfort he needs.
The doctors/ silverchain suggest he was only a couple of weeks left.
Such torment- but such a massive relief. It troubles me to see him get so confused, and be completely reliant on me for everything including toileting.
My only wish is that he is comfortable.
Enjoy every minute with your loved ones, because before you know it- it could be over in minutes. Have no regrets.
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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.