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Bittersweet Days


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6 minutes ago, tinywillyuk said:

Thoughts with you.  And it is okay to cry with your girls... if they see its alright for Dad to cry, then they'll know they can too.

Yeh, I get that. But... I can’t help but think they wanna see me say “it’ll be fine” and I just can’t say that.

We’ve never hidden cancer, brain tumours etc from them. We have said that sometimes it may be the three of us at some point but that mummy will always be with us what ever happens.

Currently Owned: 2018 Lotus Elise Sport 220 in Metallic Blue, Alcantara Pack, Forged Wheels, 2piece brakes, AirCon, Hard/Soft Tops, Red Calipers, Stereo, Interior Colour Pack, NVH Pack, Carpets, Mats.
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10/08/78 - 10/01/19 💔 It is with deepest sadness that I have to share that OUR Alex passed at 12:20 today. She fought so very valiantly against her brain tumour. Diagnosed in Feb 2014, Alex underw

It was my twin girls 8th birthday on Friday and yet it was a deeply bittersweet day. Day started with girls coming to our room to open their presents, and thankfully my sisters came to help spoil them

Lee - just saw this on the news tonight; it was great to see the girls looking so pleased, and well done you for getting the story out. Alex would, I'm sure, have been very proud of you all. http

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kids are more perceptive that that. They will know if you say things that aren't true. Be as honest to them as you feel you can, and from your words you certainly are. Don't underestimate their resilience to cope. 

Like others have said, hard to imagine what you are going through. A tear shed here too for you and your family. Thoughts with you.

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38 minutes ago, Clive59 said:

kids are more perceptive that that. They will know if you say things that aren't true. Be as honest to them as you feel you can, and from your words you certainly are. Don't underestimate their resilience to cope. 

It's true that kids can be extremely resilient and will amaze and humble you with their ability to  cope. My mum died when I was 13, I was aware for several years that she was ill but I somehow didn't notice her gradual deterioration and it never occurred to me that she might die. Nobody actually lied to me but clearly I wasn't sufficiently perceptive to ask the unthinkable questions. I'm 59 now and still sad that I didn't know enough to make the most of the last few months (in particular) that I had with my mum. It's a harsh coincidence that my wife also lost her mum when she was just 9, and her experience was very similar to mine :(

CocoPops, I'm really really hoping for the best possible outcome for you and your family, I've seen the charming photo on 'the other place' and I'm not ashamed to say that I've shed some tears. My thoughts are with you.

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Christmas has again been bittersweet.
A wonderful time for the children, but a steady decline for Alex.

I called the oncology triage team today and talked through her current state and they asked me to call out of hours GP to prescribe steroids to reduce brain swelling.

Tomorrow I’ll be calling the normal oncology team in order to try and get an urgent review appointment.

I fear we are rapidly heading towards the end.

In some ways I’m glad we’ve seen the girls birthday (21st) and Christmas. It means they should anything happen soon, it will be a reflective day in the future rather than depressing birthdays (any more so than not having their mummy around for birthdays if that makes sense).

Days? Weeks? Certainly don’t think it’s months.

Have picked Alex up many many times over last few days, she just cannot coordinate her left leg and once she starts falling, she cannot stop or brace herself.

Next stop is some kind of home care I think, I just don’t know what we can have or from whom.

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Currently Owned: 2018 Lotus Elise Sport 220 in Metallic Blue, Alcantara Pack, Forged Wheels, 2piece brakes, AirCon, Hard/Soft Tops, Red Calipers, Stereo, Interior Colour Pack, NVH Pack, Carpets, Mats.
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Stay strong for them girls chap.

Swear and shout at us lot on here if it helps. My thoughts truly are with you at this time

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Only here once

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I am so sorry to hear this, as Barry says stay strong.

I am sure this is not something you want to worry about at the moment but there are allowances, payments and all sorts to help with home care but no-one will tell you about it. We had to sort this sort of thing out for Carina's father at the start of this year. I will discuss this with Carina tomorrow and let you know all that was done - if you think it will be of help.

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Tell your kids as much as you dare and encourage them to spend as much time as possible loving their mum,  Dont forget yourself either, make sure you have plenty of quality time together as it could be all to easy to get wrapped up in practicalities. I assume that the kids' school knows the situation - they should be able to offer pastoral help, they are pretty good with this sort of stuff nowadays.

I can't begin to imagine how you are coping and I don't have the right words to express how sorry I am :(  Hang in there. 

 

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2 hours ago, CocoPops said:

Next stop is some kind of home care I think, I just don’t know what we can have or from whom.

Hi Lee, so glad the girls had a lovely Christmas and hope you did too.

I've recently been through this with my dad, I'm usually glass half full, but it's going to be a tough year for you, your girls and immediate family and friends, you may also find that some of those close friends may not support you as much as you thought they would, it's often not that they don't want to support you, they just can't cope.

You're going to need all the help you get, and there's plenty out there, you just need to ask, your GP or oncology team should be able to refer you to your local District nurses who are on call 24/7, they may recommend national or local charitys such as Marie Curie, ours was Dorothy House, offering respite and overnight care, they deal with this stuff day in day out and were fantastic in every way, so get on the phone as soon as you can and don't be too proud to ask.

Steve

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7 hours ago, Barrykearley said:

Stay strong for them girls chap.

Swear and shout at us lot on here if it helps. My thoughts truly are with you at this time

Like he said. For what help or comfort it might be worth, our thoughts are with you. The fortitude you are showing is quite literally unimaginable for me

Mike

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Things have moved on quite a bit...

alex is now bed bound and has 10-14 days left... based on estimates from Sue Ryder estimates. :(

Tough times and I’m extremely grateful for the family support as well as the district nurses, rapid response care teams etc.

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Currently Owned: 2018 Lotus Elise Sport 220 in Metallic Blue, Alcantara Pack, Forged Wheels, 2piece brakes, AirCon, Hard/Soft Tops, Red Calipers, Stereo, Interior Colour Pack, NVH Pack, Carpets, Mats.
Previously Owned: 2016 Lotus Evora 400 'Hethel Edition' in Essex Blue, Red Leather, Red Calipers, Silver Forged Wheels
Previously Owned: 2010 Lotus Evora NA in Solar Yellow, Sports Pack, Tech Pack, "Heritage Edition" Recaro Seats
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So difficult for you Lee - How are the kids coping? 😪

Always do sober what you said you'd do drunk - that will teach us to keep mouth shut!

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They’re doing ok. They’re smart, well grounded little girls.

Trying to tell them, that they can ask questions at any time.

We’ve been asked if we would like Alex to remain at home or go to hospice. For now we’ve said to remain at home as long as we can afford her the care she needs. The minute we can’t do that, is when we consider hospice.

Currently Owned: 2018 Lotus Elise Sport 220 in Metallic Blue, Alcantara Pack, Forged Wheels, 2piece brakes, AirCon, Hard/Soft Tops, Red Calipers, Stereo, Interior Colour Pack, NVH Pack, Carpets, Mats.
Previously Owned: 2016 Lotus Evora 400 'Hethel Edition' in Essex Blue, Red Leather, Red Calipers, Silver Forged Wheels
Previously Owned: 2010 Lotus Evora NA in Solar Yellow, Sports Pack, Tech Pack, "Heritage Edition" Recaro Seats
Follow my Lotus journey here: http://www.FaceBook.com/HandmadeInHethel

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You also sound like a well rounded individual that your daughters are lucky to have. I think it is the overall helplessness of the position/situation that is so hard to understand and comprehend. I wish you nothing but strength in the coming days. 

Ian

Always do sober what you said you'd do drunk - that will teach us to keep mouth shut!

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For now, yes.

So over next 24/48hrs I want to have a funeral conversation for example, so that I can satisfy myself (and others) that I do the right thing when the time comes.

Funny, I got teary today when talking with her, but she has a calm serenity about it. I guess that’s the oral morphine but it could also be that she’s at peace with it.

Currently Owned: 2018 Lotus Elise Sport 220 in Metallic Blue, Alcantara Pack, Forged Wheels, 2piece brakes, AirCon, Hard/Soft Tops, Red Calipers, Stereo, Interior Colour Pack, NVH Pack, Carpets, Mats.
Previously Owned: 2016 Lotus Evora 400 'Hethel Edition' in Essex Blue, Red Leather, Red Calipers, Silver Forged Wheels
Previously Owned: 2010 Lotus Evora NA in Solar Yellow, Sports Pack, Tech Pack, "Heritage Edition" Recaro Seats
Follow my Lotus journey here: http://www.FaceBook.com/HandmadeInHethel

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I'm sure you'll do the right thing, if you were my family I'd be proud of you. 

The reason I asked is, have you discussed with Alex where she would like to be when the time comes? I realise every case is different, but if she wants to be at home, with the support from your family, nurses and carers it won't necessarily be as bad as you may imagine, and I'm sure you've dealt with the worst part which is coming to terms with what now you know will be the outcome. 

I don't know what your thoughts are with regards to whether you feel the girls should be there with you when the time comes, my thoughts are that they should be, it would be difficult for them short term as they are so young, and I'm sure your initial instinct is to protect them from upset, but long term I think that dealing with this together as a family will make you stronger and closer. Maybe that is something else to ask Alex about.

Sorry to waffle on, again thoughts with you Steve 

 

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Not at at all @Steve V8 I welcome your comments.

I am of the same opinion. We have tried to keep the girls informed at all points, where possible.

I think you’re right, it would bring closure for them, maybe not immediately but if we hide it away and shroud it in mystery then it is much harder.

Just been up to tend to her, 4:45am, gonna make it a long day but we just keep soldiering on.

Lee

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Currently Owned: 2018 Lotus Elise Sport 220 in Metallic Blue, Alcantara Pack, Forged Wheels, 2piece brakes, AirCon, Hard/Soft Tops, Red Calipers, Stereo, Interior Colour Pack, NVH Pack, Carpets, Mats.
Previously Owned: 2016 Lotus Evora 400 'Hethel Edition' in Essex Blue, Red Leather, Red Calipers, Silver Forged Wheels
Previously Owned: 2010 Lotus Evora NA in Solar Yellow, Sports Pack, Tech Pack, "Heritage Edition" Recaro Seats
Follow my Lotus journey here: http://www.FaceBook.com/HandmadeInHethel

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Keep going Lee. I simply can’t imagine the place you are in. Look after them girls and yourself 💐

Only here once

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As far as who should be there when the time comes, I would be up front about it and ask Alex what she would like.

Having gone through losing a parent and being in Sydney for both in-laws, it is surprising how the person at the centre of it all has an uncanny way of either knowing who they want there, or who they know can handle that moment. I never had the opportunity of asking any of the three parents involved. The decisions seemed to be made by that person even though they could not talk or seemed cognisant.

If I had the chance and it involved children, I would ask.

All we know is that when they stop making this, we will be properly, properly sad.Jeremy Clarkson on the Esprit.

Opinions are like armpits. Everyone has them, some just stink more than others.

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Lee @CocoPops.

I am so sorry to read of your wife's decline and your post really touched me. I had been with Wendy for 6 years and my sons were a month old when she was diagnosed with Cancer in her throat and we all had to prepare for the worst. She sat me down and we talked and prepared. Luckily she pulled through but it was so touch and go. So I can imagine what you are going through and how you feel.

There really isn't a lot I can say that others haven't beyond the fact that if you need to chat or struggle with anything I am always here for a chat. Message me here or send a friend request on FB (Let me know though as I don't use my real name). Big love to you, your girls and especially your wife xx

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Dear Lee,

I am touched reading your posts. My wife and I, we are thinking of you and your family a lot and we are talking about what you might go through now. We like to share our personnel experience that might be of some orientation for you.

My wife’s father died of lung cancer when he was around your age leaving the family behind with four children. Still decades after her father’s death my wife is not happy with the behaviour of her mother who kept the children away from their suffering and decaying father during the final stage. Of course, there were very unpleasant occurrences to sustain. However, it is so important that you can make your personal farewell with a beloved person and we think the beloved person wants the same even when he or she cannot tell you anymore – all this things belong to our lives.

Fortunately, never I was kept apart from someone passing away and for me it is easier to cope with the loss and I feel better being able to accompany and pay my respect until the very end and say good-bye.

In this sphere of life just let you guide by your heart – there is no right or wrong.

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The results of the scan on Sunday were processed today... “catastrophic growth” throughout the brain including brain/spine connection.

Oncologist said she wouldn’t be surprised if it’s quicker than original guestimate. :(

 

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Currently Owned: 2018 Lotus Elise Sport 220 in Metallic Blue, Alcantara Pack, Forged Wheels, 2piece brakes, AirCon, Hard/Soft Tops, Red Calipers, Stereo, Interior Colour Pack, NVH Pack, Carpets, Mats.
Previously Owned: 2016 Lotus Evora 400 'Hethel Edition' in Essex Blue, Red Leather, Red Calipers, Silver Forged Wheels
Previously Owned: 2010 Lotus Evora NA in Solar Yellow, Sports Pack, Tech Pack, "Heritage Edition" Recaro Seats
Follow my Lotus journey here: http://www.FaceBook.com/HandmadeInHethel

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