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Cassandra

Cassandra - One year and three-and-a-half years anniversary

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Hello, this is Cassandra's husband, Neil. Cassandra's journey of recovery went very pear shaped but she is back on the road to recovery now hopefully.

 

It's been a year since her last brain operation - the sixth in a series between December 2016 and January 2018, all needed to either revise her VP shunt or do some surgery on or around her fourth ventricle. Regrettably, the last two operations left her with significant damage to the 4th, 6th and 7th cranial nerves which has resulted in a range of debilitating deficits.

 

One of the worst is dysphagia, meaning she has a lot of trouble eating, chewing, swallowing, speaking etc. This has led to medical anorexia and the need for her to move to a tube-fed regime. She also has diplopia, which gives her permanent cross-eyed double vision, so its impossible for her to read, watch television, use a computer etc. Which is why I'm writing on her behalf.

 

Anyway, it's been 3.5 years since her SAH, and I feel that her hydrocephalus is now being managed with a twin-catheter shunt which can be adjusted externally.

 

Now she just needs to get back to 55+ kg after hitting 41kg, and have the strength and energy to pick up her various therapies and get back to some normality! 

 

Love to all of you dealing with your own challenges! 

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Hi Cassandra and Neil,

 

In 2009 I passed out while cooking my hubby a curry luckily he came home early as all that day I felt tired and he bought me in a nice bottle of wine and I just fell to floor SAH4, was rushed to hospital operated on. 

 

Just getting better then ventriculitis sets in and then after that Sepsis rears it's ugly head, my Daughter asked her Dad "Will Mum get better Dad" he said yes but who knows when !! I put them through the mill not my fault and I had hydrocephalus which kept me in cuckoo land.  A year later I had a shunt put in and I was told I woke up singing to a nurse.

 

Meanwhile my daughter found this site and I saw people who could laugh about what happened to them.  This site got my laughter back for me xx

 

Cassandra I know you cannot eat too well but please eat .  I swear my extra weight helped me get over this.  Now on a diet !! Try puree foods but to get better you must eat as our body needs it for when we feel rough.  Wishing you good luck and please let us know how things are going.

 

You will find this site a great help when on a downer or when you have a good day, It has helped me so much xxxx  Keep chin up and I'll keep my 2 up xxx  We are not the only ones and that in itself makes me feel better.

 

I played the OT's up when in cuckooland and they said to my husband "We think she should go into a home " I could be an old Dear sitting in a home with hydrocephalus.  Good job my husband said "we will take her home with us"  I knew they had it in for me lol xxxx

 

Keep well and get better xx Order from Win xxxx wink 

Love

Win xxxxxx 

 

 

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Hi Neil, so sorry to hear about the deficits Cassandra has been left with following the surgery.

This is just a suggestion, it may be possible for her to use the computer using voice activated software. There are some on the market and I think Microsoft has one. It may help to stop her feeling isolated. If she used to like reading there is the option of talking books. All things that could be investigated. 

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Hello Neil... many thanks for sharing about Cassandra`s progress.

 

Three and a half years .. and you both have been faced with immense challenges and setbacks. 

What comes through in your post is that there is still so much positivity in your words. I have immense admiration for you both.

Those who have been on the recovery journey for many years will reassure you that there is always hope for improvement, notwithstanding the complexity of the obstacles you have already faced.

 

Wishing you both the strength and support you need to continue.

 

 

Subs

 

 

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Hi Neil,

 

Sounds like both Cassandra and you have been through an awful lot in the last 3 years.

 

The recovery road can be very bumpy one at times with all that we have to deal with, I am so sorry to hear that Cassandra's last surgery has left her with the deficit's that have knocked her back somewhat.

 

I'm sure with the love and support she is getting from you things will start to improve and hopefully get her back on track no matter how long it takes, I think the ideas that super Mario gave you are brilliant and definitely worth investigating.

 

Sending you both love and strength as you continue on your recovery journey together.

 

We are always here if and when you need us.

Love

Michelle xx 

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Neil and Cassandra

 

What a time you have had and sending you both healing thoughts.

 

i recall when you last came on Cassandra you had just had surgery on the blocked fourth ventricle and it sounds like since then you have had no end of difficulties to face. How brave and amazing you have been to face those surgeries and complications but like Neil says I hope in time you will be back taking enjoyment from some of those therapies you enjoy. 

 

Audible app and subscribtion  is a good tool I find when there are eyesight issues, lots of amazing books  on it to choose from. It doesn’t compare but post my Shunt insertion I could not look at screens or concentrate for long so talking books really helped me. I also definately think using Alexa ( other devices are available :) ) would be a great aid to play music, searching things and also using some of the amazing reader apps out there. I have a friend who is completely blind and he can often find things quicker than me. 

 

The weight loss is hard especially if swallowing is difficult but hoping your professional teams are helping with that. I personally also have a theory that they high pressure from Hydrocephalus suppresses all appetite but also ability to absorb some nutrients so make sure lots of build up drinks etc when able. 

 

Cass, I felt your energy in your first posts , it carried all the way from Australia so sending some back to you. Search the spoon theory. We are sending you a spoon. 

 

Good luck and and hope this Shunt keeps you steady and improving. 

 

Daff. X 

 

 

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It's with much regret and sadness to announce that Neil's beautiful wife Cassandra sadly passed away on May 6th after an epic battle to overcome her deficits. She passed peacefully and surrounded by love. 

 

Cassandra's recovery journey was an extremely difficult one, but one faced and fought with great courage and determination.

 

It truly saddens us when we hear that we've lost a friend from our small community and we just hope that this site was a little comfort to Cassandra in her hours of need. She will forever stay in our hearts at Behind the Gray.

 

Written by Neil for Cassandra's funeral service:

 

 Thank you, my darling Cassandra, for:

 

·     Your piercing insights and your companionable silences

·     Your disrupting home truths and your unswerving loyalty

·     Your sense of fun and your sense of gravitas

·     Your push for adventure and your acceptance of introversion 

·     Your advocacy of entitlement and your honouring of humility.

 

Thank you, my beautiful Cassandra, for:

 

·     Your ever-present luminous beauty 

·     Your welcoming smile

·     Your authentic style and poise

·     Your flaming red hair.

 

Thank you, my wise Cassandra, for teaching me:

 

·     How to bring up a daughter 

·     How to release my emotions and turn it into support

·     How to not accept second best and send back meals, push for better accommodation and return stuff that didn’t fit

·     How to treasure relationships and nurture friendships.

 

Finally thank you, my wife, my friend, my confidante, my guide, my mother of our children and my inspiration for your truly amazing love…support…grace…humour…and honesty.

 

Thank you for being the love of my life.

 

Banksy has observed that you die twice; once, when you stop breathing, and a second time, a bit later on, when somebody says your name for the last time. 

 

I’m determined not to let you die a second time, Cassandra – goodbye until next we talk."

 

 

 

 

P1070161 (1).jpg

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What a wonderful tribute to an amazing person. It brought tears to my eyes.

May Cassandra now rest in peace.

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Thank you Karen for sharing that heart felt tribute to Cassandra from her husband.

 

Neil ...  our thoughts are with you and your daughter at this difficult and emotional time.  May you receive the support and encouragement from those closest to you, and strength for the future as you recall the many special and ordinary times you and your daughter have shared with Cassandra.

 

Subs

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My thoughts are also with Neil, his children, family and friends.... I wish them love and strength over the coming months. x

 

 

 

 

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So very sad to hear that Cassandra has passed away,  such beautiful words from Neil, 

 

My thoughts are with Neil, his children, family and friends at this very sad and difficult time.

Sending love & hugs to you all. X

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That is so sad to hear, thank-you for posting it Karen.

 

my thoughts are with her family hope that one day the smiles will come again... 

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Beautiful words from Neil - have sent me very goosebumpy.  May the beautiful woman rest in peace xx

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Beautiful words Neil so sorry for your loss xxx

 

Cassandra rest in peace

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A lovely tribute Neil she sounds like an amazing lady. Deepest condolences 

 

Clare xx

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A beautiful tribute for a beautiful lady in every way, so very sorry for your loss. Thoughts are with you and your family at this very sad and difficult time  xx   

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Such a courageous woman as Cassandra will leave a big gap in the life of those she loved and who loved her but equally she will have left them with all the memories and time they shared. I hope those memories bring comfort, gentle smiles and the feeling that she walks with you forever.

 

Cassandra shared how she chose to lean in to her pain of being broken and adjust to that and that itself can be similar to the experiences of grief of losing a loved one. Words she said on one of her posts was; 

Quote

you've nailed one of my issues - impatience - and will make an extra effort to keep it slow. Frustrating but it's a life lesson, I guess.

 

Good advice for us at all of life’s challenging times. So Fly free from the pain Cassandra and take heart Neil and family that her love lives on within you all. So sorry for your loss. 

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So sorry to hear this Bless you Cassandra and Neil ..No more pain for Cassandra.

 

God bless you All xxxxx

 

You will get unknown strength Neil to get through this hurt xxxx  So Sorry xxxx

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Sorry to hear about your loss, your tribute is very moving. Thankyou for sharing...

 

Mike

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