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Everything posted by CocoPops

  1. Thank you. Story was put together by the charity. I’m glad our story has been told, help raise awareness.
  2. Sadly now for sale at Leven... £99k
  3. Sadly the Elise has been a little unloved recently (tucked up in the garage on a C-Tek tho). Usage will take a little more planning, for child care.
  4. Hey, we're doing ok, muddling through. Thank you for asking. Funeral was 1st Feb, the day of the HEAVY snow.. the irony as it was the weather Alex hated most. Girls are good, trying to carry on as normal as we can, work are being good and allowing me flexibility around school times etc. I started a blog so people can follow our progress there. I also revisited BBC Radio Berkshire, where they did an interview piece where they linked an old interview with Alex and I, with a new piece I recorded with the host last week (about 20mins long);
  5. I’ve used Steve for 3 cars now. @JG220 has used him for several cars too.
  6. 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 underwent several brain operations, chemotherapy and radiotherapy. Never giving up, never asking why her. At the time of diagnosis, Alex set herself several objectives, all of which she achieved. Alex finished her OU degree with honours. Alex saw our children go to school, they completed the first 3yrs under her guidance. Alex saw and celebrated her 40th birthday. Alex taught us so many things, to laugh, to fight, to love. We will miss her, but know we are better for having her in our lives.
  7. What a painful night, Alex continues to fight. We sat up with her right the way through the night. We thought she was leaving us at 1am, 3am and 4am, each time rallying back from the very edge. It is truly heartbreaking to watch and be so very powerless to act. What makes it worse, we wouldn’t put a dog or cat through what Alex is suffering with. They cannot give anything other than pain relief, which is dreadful as there truly is no recovery yet we have to wait for her heart to fail Her heart is only 40 and so very strong hence it doesn’t want to give up just yet.
  8. Another long night, she just woke and was very confused, almost hallucinating about taking girls to school. Had to sit and calm her by saying it was in hand and that we would have a duvet day. Then proceeded to tell her that we would imagine a holiday to San Francisco. Was a wonderful moment of escapism, explaining what we would do, what we would see. We were lucky enough to travel to SF before the girls arrived, was her favourite place we travelled together. Calmed her down, and she’s now exhausted and sleeping. Breathing is noisy, irregular and a huge effort. She won’t/can’t give up. It’s exhausting just watching, being there in case she wakes, point proven earlier etc. Not much happens on here at 3am
  9. Again Alex continues to battle on. Her swallowing mechanism is failing though, so that won’t help her now. I sat up until 2:30 this morning, then handed over to my mum/sister. She is never alone in this, she always has someone with her. The girls went back to school today, I think with a level of trepidation.
  10. I’ve agonised A LOT over setting up a GoFundMe page but I’ve had some lovely PMs offering help and I figured people would only offer if they wanted to help. I don’t have an expectation, I don’t have a target (you have to select one). The choice is yours, so the option is there. I hope I’ve done it right, I’ve never set up a GoFundMe page before. I think you can do it anonymously if you don’t want your name attached? I welcome your comments on the content. Waffling speech over, here’s the link: Please don’t feel obliged to visit the page. Your words of support and encouragement are helping me a lot. Equally, if you feel inclined to share the page then I wouldn’t say no, I want everyone to know how important Alex is to our family, especially that the girls know their mummy was loved by many.
  11. Another tough day in the Coco household. Alex is becoming weaker, more and more dosed up on morphine. Strangely we are seeing glimpses of the original Alex, the loving, caring, humourous Alex that the tumour somewhat robbed us off. It’s a matter of time now, it’s heartbreaking it really is. Counting breathing, knowing each one could be last. Every time it goes shallow, we hold our breath just in case. Alex hugged the girls before they went to bed, it took immense effort for her to do so, but I’ve no doubt the girls will cherish those cuddles for many years to come. Not sure what I feel right now. Angry (at the tumour), cheated (by life), upset(for our girls), happy(knowing she is safe, secure, pain free). It’s a smorgasbord of emotion. I’ve shed tears, free flow at times and laughing at others. Give your loved ones a hug and for Christ sake, heal those wounds if you have any before it’s too late. Some of the comments on my Facebook status go to show how loved she is and, luckily, how good we’ve been as a family unit. if you want a read...
  12. I fear we’re into the last few days. As well as the extra pain and sickness, urine output is down to near zero over last 14hrs. I’ve just had to have the very difficult conversation with the girls. To sit down and tell your wonderful 8yr old princesses that mummy is dying broke my heart. Probably the hardest thing I’ve ever had to do so far
  13. Love is... Love is running 2 flights downstairs at 3:36am when you hear your wife call help via the baby monitor. Love is clearing your wife of sick, putting her nightie and sheets into the washing machine at 3:45 when you’ve cleaned her up. Love is returning to bed at 3:57 knowing you’ve made her comfortable. Love is knowing your mum is now sleeping on the sofa next to your wife’s hospital bed whilst you return to your warm cosy bed. Never let it be said that we are not doing everything In our power to make Alex feel loved, supported and cared for in her last days.
  14. 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.
  15. 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
  16. 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.
  17. 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.
  18. 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.
  19. Starting to become less keen on open track. i see they now sell places through agency’s to fill their days, which means they have less control over who attends and what they attend with etc. Yes, you get photos etc but I want to know who I’m risking my car with.
  20. 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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