Claire's Light

livestream for the memorial:

https://www.facebook.com/625836144/videos/439508534575858/

Update on livestream for the memorial:

We will still be streaming over zoom, using the link below, for those who will join on there but are also going to stream to this page (claire’s light) via a live video feed for those who would prefer to watch it on facebook.

Hi All

Just want you to know that Claire’s memorial will be held this Friday but due to restrictions we have had to limit the funeral to family and close friends only. We are however going to do a live stream of the memorial so that the wider community and those that can’t make it have the opportunity to be with us in remembering this remarkable woman!

Thank you all once again for your amazing support for my family over this very sad time. Words cannot express our gratitude!!

The zoom link invite for the memorial is below:

Topic: Claire Stoop Memorial
Time: Feb 18, 2022 10:30 AM Johannesburg

https://us02web.zoom.us/j/86731547190?pwd=U2FIeFVXeEtYNnlyRElLRUtadjlmQT09

Meeting ID: ‪867 3154 7190‬
Passcode: 767451
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This is the hardest thing I have ever had to write but I know claire would have wanted me to.

My best friend, my wife, the bravest woman who I have ever known fought her final battle last night! 💔💔😭

We are all extremely heart sore this morning and I just want to thank all of our friends/followers/family for all the amazing support we received.

This blog has been a big part of claire’s journey and although I don’t have the words at the moment I just want to say thank you to you all for keeping her light shining!

This is so hard. Who would have guessed it would be so difficult to recover from a terminal death event.
I have my moments of strength though but most are covered with blankets of pain. Sorry for the long gaps in updates as I am literally passing our at random.
I had a very busy Christmas Day and eve, and it was as so special to spend time with family and just to see my special people. I put so much of myself into Xmas eve and day energy wise, it was really special but so difficult for me having to stand apart and let others do things that I used to do. Thanks to all that helped make the days so successful, a massive shout out to my hubby and mother in law without whom Christmas would have definitely been ruined, but as always they saved the day! Along with every one else in the family, it’s always a treasure spending Xmas together 🙏🏻
I think that having one day with a lot of energy drains everything from me and takes me so long to cover. - it has taken a full week so far and I’m no where near recovered yet😳
No one tells you the energy and pain levels you experience as an advanced cancer patient, it’s almost beyond explanation so I’d understand why .

Each day seems to be tougher and tougher. I am trying with alternative medicine and battle with chocking on the tablets though, so it takes me a while to get it all in so medication taking feels like a full time job!
I don’t know what strength I was given and from whence it came but I feel a very strong spiritual drive when I think of it.
There is definitely something keeping me going, there is no other explanation. My hair is growing back really weirdly as well, I am in extreme bone and related cancer pain…holding thumbs my hair doesn’t get weirder too as that will really add insult to injury and I’d love to inhale and have a bit of something to eat as well as I am, battling to breath and eat…And I’m looking at all the tributes to my fallen friends on FB and it breaks my heart, I miss them so and being able to talk with people who actually know what you’re going through. I just miss their strength, positivity and courage… they were brilliant 🤩

Here’s some pics of the past week, mostly on my good days but I think I am going to start positing my bad day photos so others can see a more realistic of cancer and what it takes to get up everyday- for me it takes 4-5 hours…:
And I will focus the following week on trying to get stronger each day. Each day one more hug, one more kiss, one more memory 🙏🏻

Merry Christmas!!!!

Thank you to everyone for all your incredible support via the back-a-buddy and all the efforts with the fun run and walks which was such a great success! What a fantastic gift you’ve e given me that I am not going to have to worry for a few months with alternative treatments.

Merry Christmas to you all, such kindness and love, just full of the Christmas spirit!
Thank you for your continued support and prayers and so much love you send my way, I feel really blessed to have made this Christmas as there is no medical or other logical reason I should’ve survived my recent suffocation and terminal death experiences but yet I will endure, there is something in my body that won’t let me give up, saying “no” is not an option.

I have been off of chemo for a while now and my body is struggling to adjust but it feels a bit stronger and with all the additional funds so generously received by you all, now I am adding a lot of supplements and protocols which have made me feel so much stronger. This pic is from last night so you can see Christmas Eve me, now to nap enough to be Christmas Day Claire and see the rest of my Family. Along with birthdays, Christmas is by far my Favourite time of the year and not being able to go to the shops and being dependent on others has really made me anxious. You don’t realise just how heavily your freedoms and actions are impacted by cancer…I’m done with feeling week and am putting myself on the path to wellness

The last six months have been a blur to me, essentially what I had was a terminal event, the kind that no one ever comes back from- I should’ve died according to all the doctors. So I am trying to animate my body again. It’s literally like breathing life back into a co**se and that takes time and patience. The hardest thing is my ligaments and joints aren’t getting the message, so I’m a major fall risk and very weak.
My hair has started growing as well, I’ve been using Bergamot Essence for the last week, daily and its definitely starting to come through. It’s made a weird halo of dark and coarse hair, so it’s still wigs and beanies for a while, but I think it’s kinda cool 😎 ! I actually might forgo the wig if it gets a bit hot later and rock the GI Jane vibe when the kids swim…
I am continually reminded by doctors and my own experiences, nothing is guaranteed or promised - everything can be 100% fine one day and the next it all comes to an end in a long walk down a pathway of light ✨
So enjoy everything and every moment, every splash and squeal, I can’t wait 🙏🏻

Wishing you all a fabulous day with your friends and family, may it be blessed and full of laughter 🥰
Remember the reason for the season!
Merry Merry Christmas Everyone

I have been resting quite a bit the last two days and am awakened with so much love and support it is truly wonderful. Thank you to everyone who has already contributed towards my back a buddy campaign, the response and amounts have been so generous and kind - I have been blown away…thank you 🙏🏻

And I see now there has been a fun run even arranged for my medical cause by some awesome friends and community members
🥰

Here are the details of the fun run/walk, such an unexpected thing to do and I am bowled over with all the love I’ve received - this will really take the pressure off of so many aspects of alternative treatment and I am so grateful. Here’s the text to the link for the fun run/walk:

A friend, a mother, a wife, an aunt, a sister who has truly put up an awe inspiring 7 year fight against Stage 4 Cancer.

The time has come for Claire to explore alternative treatments for her Cancer which comes at a great cost.

In support of Claire and her Family, we have decided to organise a fundraising event in order to raise the much needed funds she needs to ensure that no stone is unturned when exploring possible treatments.

So friends and followers come out in support of Claire, wearing white and blue, at Benoni Northerns Sports Grounds (venue capacity 500) or Virtually, at 7am on the 11 Dec 2021 for a fun filled family walk which ranges between 3km (1 lap) to 5km (2 laps).

Tickets available online at: https://www.webtickets.co.za/v2/event.aspx?itemid=1510091830

I have been through the ringer and back soon after getting home from hospital I landed up once again in hospital with a lack of breathing and severe pain as it turns out my lungs and the all of the lymph in my lungs has been infiltrated with cancer so it’s kind of like a wagu steak where instead of the lines of fat there are streaks of lymphocytes full of the cancer so to do any kind of treatment now would be absolutely foolhardy. We’ve had many discussions with the doctors and came to the decision that we are now stopping conventional treatment as my body is too weak to handle - it will kill me fairly quickly by putting me in hospital almost immediately with all kinds of side effects and I don’t want that.

I am really am going need a lot of help going forward over the next few months because everything is so uncertain and I really really want to act and and get more intensely involved with non- conventional homoeopathic and alternative treatments.

This means I’m really going to need support in terms of my back-a-buddy going forward. I’ve tried to pin the post to the top of the page and include it in this post but FB can be tricky with any fundraising campaign. Please please please if you do you have any extra funds lying around and are wondering what to do with it by any chance I would really appreciate the support through the Back A Buddy account as all of that it’s going to be used for my treatments going forward this includes pain management, palliative care as well as the homoeopathic treatment which is not covered by medical aid

The odds are never and have never been on my side but I’m not listening to that and taking it to to heart too much (or at least I am trying not to, it’s hard to be in a good space when you’ve been told to prepare your DNR and get your affairs in order when your in your mid-thirties with a young family)

I’m not giving up I’m not the type of person to give up especially when I’ve got the most precious little family in the entire world (I mean look at these photos of what I came home to from hospital, this child is an angel and I need to be in her life longer) so I am still gonna fight but I’m not going to be able to do it the conventional way and to do it in my way I really am going to be needing help from supporters from those around me so if you could spread the word share this post and somehow get the word out that would be wonderful and so deeply appreciated

When I was in hospital even the doctors couldn’t stand around to watch the level of pain that I was in…so we’re trying to get my pain management under control so that I can be at home and be present and spend quality time with my family but that was it… it really was the most horrific pain that I’ve experienced outside of surgeries, I don’t even know how to describe it apart from rings of differing pain levels just slowly crushing my bones and filling it with lava it was terrible even one of my specialists doctors he had to leave the room and couldn’t even observe me nor was he able to watch me in the pain that I was and had to rush to find an emergency sedative because the painkillers and drugs etc weren’t working .

I have such a sense of foreboding not knowing what to do for the first time since I was diagnosed it almost feels like I’m back at the beginning which in a way I am because I’m having to revise my treatment for a whole new approach and strategy as they are not going to operate or do any conventional treatment anymore. I do you have two new tumours on my brain the cancer is spreading in my lungs, we are having to monitor my liver and it’s just so much going on and it’s so confusing and all I want to do is sleep - which is my favourite thing to do. Sleep is magical time and I can hopefully build up some strength as I want to do a few spontaneous things with Laurie, even just being awake and sitting is a big deal for her.
The most important take away from this all is how much I love my family and I really really want to spend time having adventures with Laurie and with Justin so another thing that I am asking for from you guys are some suggestions of really fun activities that I might be able to do with them there are nearby within like an hour or two‘s drive I was Johannesburg. Things that we can do I would love, things have to be quite spontaneous as I can’t plan my days too much as pain and other issues make it really difficult- I had an unexpected 4hr nap the other morning for example and I really needed it - if I’d had plans that wouldn’t have happened and I’d likely have had a lot of pain and I exhaustion.
When thinking of ideas of fun things to do, I’m able to be wheeled around the place , I can move around with assistance and I really want to be present in Laurienne’s memories of this time of life I want to be that strong force and and her to be proud of me.
At the end of the day that’s all you’ve got, our memories I’m trying to pack in as much as I can while so far I’m standing rooted to the spot. No longer using conventional means going homoeopathic , palliative, alternative together with chemical pain medicine hospice care. A hospice nurse is going to start here as well this week and I am struggling a lot with pain, it’s hard to manage at home so hopefully this will help a lot . I think we’re getting the help that we need and just wanting extra love and support and prayers know when you are able to send to them and send in my direction.
Spreading the word around my back-a-buddy would be awesome and it will help a lot if people can contribute ⭐️

https://www.backabuddy.co.za/claire-stoop

Im still here, still fighting for each day and going to do everything I can for another memory with Laurie and Justin. We just recently celebrated our 12 year wedding anniversary and 18.5 years together. Such a milestone and general happiness at being together. I also just got the news a dear friends of mine fighting the same battle and stage of cancer as me passed in the middle of the night after a similar incident to me with breathing and withdrawal - my Hayley you were an inspiration and a warrior and so very loved…the love in your husbands voice when he called to give me the news just reinforced how very special a person you were. Love you deeply my friend, you will always be an inspiration to me 🙏🏻 we fight for our loved ones, our families and friends. At the end it’s all about love…

I just wanted to give an update as I’m getting lots of concerned followers sending me messages.
I am blessed to be home after 3 weeks in hospital a d ICU and have an oxygen machine which is my most favourite thing ever.

Between my mom, sister, husband and mom-in-law, things are still organised at home and I’m not left alone. I am so weak, I’ve never felt this exhausted before.
I think I hit a perfect storm to be so ill as I had brain surgery, got COVID, had full brain radiation, tumors grew and progressed, changed chemo all the while trying to rest and move and not noticing the deterioration of my body…
I have never been this thin and I don’t like it, high school me would’ve been thrilled to weigh48kgs, but as an adult who is over 1.7m tall it is just unhealthy - especially the way I lost the weight. My legs look like giraffe bones with knobbly knees and I have a lot of physio to do which I am hopeful will get me to build some muscle so I can get up from a seated position by myself. In my healing space we have a chair that actually lifts and pushes you to a standing position which I love, if I have my walking frame in front of me I can get up, it just takes a while - so much going on and I am asleep through most of it…

The just of things is I have a pneumonia that typically only HIV patients get and they recover quite well with their ARV’s. For those of us that don’t have HIV the odds are pretty bleak: 5% survival rate.
FIVE %
Plus I have cancer all over the show…
Don’t count me out just yet I reckon,!my body has a mind and will of it’s own.
The near suffocation and death this time around was my worst and one where I was truly petrified of dying because it was so painful and scary suffocating in front of your family and not being able to do anything - so now I’ve also developed panic attacks (breathing helps a lot with those issues so I’m keeping it under control)
Thank goodness Justin’s mom had an extra oxygen tank and he ran to her house in the middle of the night to get it for me, without that I would never have made it through the night. Paramedics arrived and it was my first trip in an ambulance - wow is there a lot of equipment in those vehicles! We decided to call paramedics as I was unable to breathe without oxygen and the machine I had was fixed and needed electricity. There is no way I would’ve gotten to the hospital conscious or even alive if we decided to drive ourselves- it was a nightmare of 24hrs
In addition, all my other death experiences were painless and under heavy sedation and pain meds so was quite blissful, but being awake and suffering a drawn out and protracted potential end was exceptionally scary - calling for help and no one can help you even though you’re in the hospital 😱 I must thank the doctors and staff at Glynwood Hospital as they did a fantastic job stabilising me so I could be transferred to the Donald Gordon. They constantly checked on me, I felt very safe in their emergency room and as always my team at the DG who continue with extraordinary measures to keep me going 🙏🏻 plus I think I’m a pretty interesting case study and research participant that they need to keep me around longer as no one know how I can still be alive after all I’ve been through - I think I’m just plain stubborn, from young if someone said I couldn’t do something I would work so hard to prove them wrong…

And I so want to prove them wrong but there is always reality that comes knocking, I feel the pains and twinges, dips in energy, weakness and just looking at photos over the years…
The worst thing is it sneaks up on you, both cancer and this pneumonia never did I imagine this happening plus I still have other bacterial infections at the moment so my tummy is just full of tablets.
I honestly didn’t even think of pneumonia as a possibility as my lungs were clear and I didn’t feel any fullness in my lungs, I wasn’t coughing apart from having occasional spasms in my chest. Those did get quite intense sometimes and I couldn’t breathe but I still attributed it to my cancer around my bronchus…
Managing my pain is hard as I don’t want for over do it but I realise I need stay ahead of the wave, I can’t manage with the levels of pain I experience.

The scariest part of being so weak is I am completely dependent on those around me. All the muscle in my legs and especially around my knees has just vanished. So I’m doing at home physio, started yesterday and it seems so easy but today I am exhausted 🥱
I can walk but I stumble a lot so have a frame to help me however I need an actual person to help get me up - it’s absolutely too bizarre and being bed ridden and reliant on others is driving me slightly dilly.

Right now I’m on no chemo and purely trying to build strength and fight off the remaining infections I have, I think it would kill me if I was on chemo so I don’t know what the next steps are. When the fog clears I am sure I am going to whack this with all the alternative medicine and things I wasn’t allowed because of chemo, build my strength and make memories…I have no idea what will work and more importantly how much it’ll cost…I am dreading the slew of invoices I know are coming from all the doctors and alternative and palliative care, physio, portable oxygen etc…

I hit a very low point yesterday evening and unfortunately it is a side effect of my medication to prevent seizures - I never want Laurie to see me have a seizure. Sweet lord I will remember the look on her face as I was suffocating at the kitchen table and screamed I was purple, before this stint in hospital and it haunts me. I think the reason I fought so hard to pull through is because I knew she could not have that image as the last time she saw her mom…

Doctors have said I was literally two minutes away from death. This was extremely serious and they wanted me to be intubated me but warned Justin I likely wouldn’t survive. So he said no to intubation, they did a blood gas and just one reading gave them pause to not intubate and rather use other machines.
I didn’t realise how long I’d been in hospital until Laurie asked me about Halloween. In hindsight I feel a lot of this is related to COVID as my deterioration started when I got it as well as radiation. I may have been battling this since March!!! No wonder I have been so out of it and exhausted, having blood transfusions and all sorts. Trying my hardest to be involved in things and it actually just did more harm than good.

I can not get up off a chair or any surface, so need to have someone around constantly if I have to go to the bathroom or do anything essentially which I hate so I’m really going to give physio a proper go of things- I need to be able to walk, sit and stand. Being isolated and dependent is horrible, as said before I’m going through a bit of a dark patch and feeling quite depressed- I guess it’s hard not to, I had all these plans for this year and next and they’ve been wiped out along with my poor knees.

Time is such a precious commodity, use it wisely, spend it with people you love, if you need the time to heal and regroup there is nothing wrong with that either. You can only give of yourself with what you have, so build the best you…

I finally slept like 6hrs last night so I feel a bit more energised (as in I could have a 20minute conversation with someone before falling asleep).

The constant yo-yo of emotions is exhausting, I’m ready for things to be done: miracle or get better and stronger because I don’t recognise myself at the moment and quite frankly I’ve had enough of cancer!

It’s been a rough few weeeks and I was right as I am in an ICU bed after rushing to get to the hospital. Thank God and all the angels we were able to manage to get there just in time via ambulance to the Glynwood in time. I have undisclosed pneumonia cough and recovery will be and has already been painful. It will take about three weeeks for me recover, practically!!!
My typos and autocorrects were beyond insane so I just had correct some of them now 🤦‍♀️- it’s been beyond the imagination and when I am able type and on less drugs I will)
Will update when I can but it could a few weeks…
Phew that was a lot of energy for me to use so reckon it’s nap time for sure
Thanks always to my love and are spectacular Laurie and Justin who I inspire my daily and I love them my whole heart.💜❤️💜

My scan results this week were as expected in many ways, the cancer is spreading in my lungs and ribs extensively which is causing terrible pain. Luckily the brain lesions are stable - thank God 🙏🏻
I am battling a lot with my lungs and ability to breathe especially when I have spasms that tear through my body - this means a change in chemo again which I hope to start next week.

I’ve been off the other chemo now for two weeks and am starting to feel like I can stand up now which is amazing as I’ve been bedridden for about 6 weeks 😳
I’ve lost 13kgs in that time and have terrible muscle degradation in my legs, they are so weak my bones feel like they could snap at the slightest bump.
We have made some accommodations at home already and am so grateful for my new shower chair (my family and friends are just incredible) as I find the water so therapeutic…my little healing space in my bedroom is also coming along nicely and I can’t wait to spend time there meditating and focusing on building myself up- eating is such a massive issue for me, my stomach has shrunk so much I am not getting the nutrition I need.

Speaking of things I need to get more of into my body is alternative treatments- homeopathy etc (which helps me beyond measure). I need to update the details on my Back-a-Buddy profile, and will do another post specifically on that and alternative treatment options but any donations or contributions to the fund will be so very greatly appreciated at this time🙏🏻 As medical aid doesn’t cover any alternative treatments.

https://www.backabuddy.co.za/champion/project/claire-stoop

The post with the link to the fund is pinned at the top off the page but I’ll put it in the comments as well.

I was also advised by my doctor to start to involve hospice in my case already, particularly for pain management as I find it so debilitating and I am hating that Laurie is seeing me like this 🤦‍♀️
She nearly broke my heart into a million pieces the other morning. I think it’s the first time I’ve gotten out of bed before 11:00 and was helping her get ready for school and she wanted to use a little vanity mirror I’d bought her a few months ago and this was the convo:
L: Wow mommy this will last me till I’m a teenager and can get a dressing table
C: I don’t see why not my sweetheart
L: Like, do you think you will still be here for my 13th birthday or even 17? That’d be wonderful cos you’ll never leave me hey mommy???
C: 😭😭😭
My heart breaks for my child and for my husband, I love them so much - they are my reasons to breathe and wake up every day, I don’t think they know how much they are a part of the reason I am still here….
This is a horrific thing to watch your loved ones go through and it is so hard to try and explain to a six year old what is happening- although she clearly sees how sick I am and is genuinely worried about me…she’s asking lots of questions about death and heaven so she is definitely aware that things aren’t following their usual trajectory- usually I am sick and then start getting better and then it’s back to normal, but that’s no longer my case and I hate seeing her little face watch me so intently to see if I am going to fall over or stop breathing 😮‍💨

We went on a little family break with my mom and sisters a few weekends ago to Zebula (so lucky to have the best family - immediate and extended) and I tried so hard, I was just in such pain I worry I ruined the memory for Laurie. Right now my focus is to manage my side effects as best I can so she can hold memories of joy in her heart of me, not this current image of me…
It’s scary to see…

Although today I put on makeup for the first time in ages(I am dressed in so many layers as I am battling to regulate my temperature so I’m still in jersey’s, vests and beanies) and am really trying to trick my body into believing that it can do things apart from sleep and writhe around in agony - my increased morphine dosage and a bit of red lipstick is helping slightly with that thankfully😉

I want to start this new treatment ASAP, sort out all my doctors appointments, try to do some admin but mostly I want to spend time with my little family and be awake for the next little while…
I’ve also got to plan Lauries birthday coming up later this month - I promised myself I wouldn’t let it stress me out but I have to…her bday is an important milestone for our whole family and my daughter deserves at least one day that isn’t about mommy’s cancer.

Being off of chemo has definitely got me in a better headspace, but I know I need to get on it ASAP (even though I’d really rather not 😬) I’d rather have more homeopathic treatments and focus on spiritual healing - which I am awakening my spirit too…I think my soul has been hibernating and it needs to get out here and fight for time and memories.

Never take a single second for granted, appreciate and give thanks to God for being pain free, being able to eat, breathe, move and love your family.

I know I have been beyond quiet of late and it’s for good reason. I have been exceptionally sick, in excruciating pain and unable to be awake for more than two hours a day.

I needed three blood transfusions and intensive homeopathic treatment. I have not been able to respond to message’s and in spite of telling people this still some have sent through 87 already
Messengers on my phone that I don’t think I will ever get to.
My apologies if you are one of those people I just don’t have the time or the visual ability to do so ..
My
Tumor marketer has tripled, my vision has deteriorated,I’m back in a wheelchair, my ankles and feet seem to have lost all cartilage and I can’t bend my ankles of knees, my body is in agony and I’ve had 3 blood transfusions without which I am sure I’d be hospitalised. I was so pale I was actually yellow. Spasms throughout my body are unbearable and all I want to do is sleep. I am unable to eat as well at this point and have lost about 10kgs so I and maybe manage a banana a day just enough so that I can take my meds without burning a hole through my stomach. All food tasted the same (which is disgusting 🤢 ) so I have no appetite.

I am having follow up scans this week and will decide the way forward soon. Things don’t look good however as we we’re told told to prepare for the worst.
I just really need to have my pain managed as I can’t go on this way. Even when I was in a coma I didn’t feel this much pain nor this close to death. If that’s controlled maybe I’ll be able to do something that doesn’t involve writhing in agony and hopefully be able to enjoy Lauries bday coming up soon and Xmas as well…

Will always try to update but very short updates at the moment. For now the main thing is I am alive. Losing weight rapidly, sleeping a lot, not responding to messages or calls and in a lot of pain.

Praying to God that things improve🙏🏻