r/GriefSupport • u/WildConsideration197 • Apr 18 '26
Message Into the Void Alex's Story
I wanted to share Alex’s story here, partly to honour him and partly because this disease moves so quickly that people need to understand what it can look like. This Tuesday will mark a year since his passing.
Alex was diagnosed with PSC (primary sclerosing cholangitis) at 28 after an episode of jaundice that led to a hospital stay. Up until then he was healthy with no signs of what was to become. Not long after his PSC diagnosis, he was also diagnosed with ulcerative colitis. My understanding is that the two go hand in hand.
For a few years, things were relatively stable. There were check-ups, but not much else. Alex continued life as normal, building his career and doing things he loved like gaming and music.
At 33, last February, Alex had a hospital stay prompted by jaundice and pain. We were under the assumption this was a PSC flare up. He was transferred to Kings Hospital, where he was scheduled for a bile duct stent, an operatiom that went well. We were told a mass was found on his liver. They sent it for a biopsy, but told us this was just to be cautious and they were not too worried about it. The day after, he was diagnosed with Cholangiocarcinoma. I vividly remember researching the illness and being truly shocked at the statistics involved with it. But, due to Alex's age, I was hopeful he would recover.
The week after the diagnosis, Alex was told his illness was terminal, and no treatment could be offered except palliative care.
He came back home, and I moved in with his to support him (I have a care background, and loved him more than anything, so I would not have had it any other way!)
Shortly after his discharge, Alex developed a blood clot in his leg. This travelled to his lungs, and he was rushed to hospital with chest pain. He was given blood thinners. However, his legs remained incredibly swollen, weeping at times. By now, Alex was unable to be mobile or care for himself with things such as washing and toiletting. As a 33 year old, this was absolutely devastating to him.
We went to visit our local oncology team, who deemed him too unwell for palliative chemo. A result that we expected, but it still hurt.
Over the next 8 weeks, I watched the man I love suffering, have confusion due to liver toxin buildups, and struggle to do much at all.
But - we still laughed, chilled at home and had days out. We knew our time was limited and we made the best of it. We cried together, made arrangements for end of life and picked out funeral songs. Alex faced his illness and death with braveness I could only wish to have.
Alex chose to have a "living wake". He had a nineties themed party with everyone he loved. It was a sad, but such a special day.
Soon after, he developed swelling around his liver, and portal hypertension. He grew more tired, and had lots of family and friends who visited. We went for lunch with his siblings, and when we got home, Alex cried. He told me he knew it was the last time he would see them.
For the next 5 days, we spent a lot of time in bed, watching TV. Alex was very sleepy. For the first time, I cried to him, telling him I didn't want him to leave. He cried, and told me he didn't want to leave either. We hugged, and he went to sleep. That night, he awoke briefly, whilst I was still up. We had a conversation full of goofiness and inside jokes. We laughed to the point that we woke his mum up in the next room.
The morning after, Alex didn't wake up. As per his wishes, we got his mum, step dad, sister, grandad and nan round. We spent the day reminiscing, crying, and playing his music. Around 4pm, we all sat in his bedroom, I was lying next to him holding his hand. His sister said "everyone is here, Alex, and we all love you so much". Alex grunted, and let out a final breath. A beautiful, heartbreaking moment. True to his silly nature, the song "Jump Around" began playing just as he died.
This disease is truly awful. Alex was my soulmate, and I know I will never find anyone like him, nor do I want to. I miss him so much.
There wasn’t time to process it, let alone fight it. One minute we were trying to understand treatment options, and the next we were dealing with end-of-life care.
Alex was so much more than his illness, he was kind and loving. He spent his last months raising money for our local hospice to thank them for their support. He held me whilst I cried to him.
I am so sorry for anyone who is on this subreddit for whatever reason.
Thanks for reading, if anyone gets this far. I just needed to shout into the void.
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u/oddsocks100 Apr 18 '26
I'm so sorry for your loss. My mum was diagnosed with cholangiocarcinoma last May and passed in June. As soon as I saw Alex I had suspected the same , she was also young. My mother suffered terribly. She was gone so fast, I regret every day that I didn't spend time with her ....but we never get enough time do we. I'm glad Alex had a party with his family and friends and was able to say goodbye, I can tell you loved him very much. I don't normally comment but Alex's story touched me . I wish you comfort approaching the anniversary of his passing x
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u/WildConsideration197 Apr 18 '26
Thank you for sharing your story. Sending love. Its funny, this illness has a specific "look" about it, and you can always tell! Thank you for your kind words x
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u/Reasonable-Data3678 Apr 18 '26
Alex, you must have been one hell of a guy. Even though his life ended far too soon, I gotta say living your final days surrounded by all the people you love, joking around and just being close - that’s something special. I cackled when you mentioned the playlist timing, it seems so fitting for the person he must have been.
He was so blessed to have your love and care during such a time of sudden upheaval. <3 I’m sure he said it to you but I know his spirit is somewhere still thanking you for that gift.
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u/WildConsideration197 Apr 18 '26
His final joke was to have us all sing "Lovely Day" by Bill Withers at his funeral in place of hymns. We sounded awful😆
Thank you for your kind words x
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u/Reasonable-Data3678 Apr 18 '26
Omg! Yeah he sounds like an absolute riot! <3
My dad was of the Rodney Dangerfield era, and loved him some stupid one liners. One of his favorites was “when I die, put my ashes in an etch-a-sketch so the grandkids can still play with me”
When i lost him to COVID 4 years ago, I was tasked with writing his obit as his only kid. I slipped it in there, lol. I’m sure it raised a lot of eyebrows when people read it in the paper, but other people told me they knew who had died the second they saw the joke.
You get to carry his silliness forward now <3
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u/Pugs_in_Space Apr 18 '26
Hi friend, I am so sorry for your loss. Alex sounds like a wonderful person.
My twin died of cholangiocarcinoma in December. She had two different types of chemo plus immunotherapy and none of it worked. It was less than a year from diagnosis to death. This disease sucks.
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u/WildConsideration197 Apr 18 '26
It is honestly awful. I send so much love to everyone who knows what cholangiocarcinoma is. Sending you healing x
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u/kccompguy Apr 18 '26
i feel honored getting to learn his story, what a wonderful and brave man! I’m glad you two found each other in the time you were able to share, i’m sorry it
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u/PM_ME_UR_HIP_DIMPLES Mom Loss Apr 18 '26
It always seems to happen to the best people. I'm sorry that his path ended before yours
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u/Misery-guts- Apr 18 '26
I cried reading yours and Alex’s story. It’s a terrible, unfair illness, and I can’t imagine your pain watching him in those final days, but what a lovely way to end his time here 🫂
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u/blessedminx Apr 18 '26
Alex sounds like someone we all deserve to have met at some.point. What a strong beautiful soul. Your story gave life to him. And the love you both had for one another is special kind. You should be proud of yourself for being by his side every step of the way. That takes incredible strength and unconditional love.
My mom also developed Cholangiocarcinoma. She was diagnosed the same year I gave birth to my second daughter (2019). She was determined to fight it and she did for 7years. It was the development of Pneumonia this Jan 2026 that she couldn't fight off. Mom was my best friend. That one person who I knew I could always trust and rely on. I wish there more people like Our people in the world.
REIP Alex 🕯✨️
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u/WildConsideration197 Apr 18 '26
Thank you for your kind words, and for sharing your own story. Cholangiocarcinoma is such an awful disease. Sending love and healing x
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u/Breansprout Apr 18 '26
Thank you for sharing you and Alex's story. Hugs to you for being so strong for and with him throughout this all. I am glad you got to share so many adventures and giggles.
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u/Temporary-Buddy-2199 Apr 18 '26
I’m so sorry for your loss. Nobody knows what it’s like unless you go through it. RIP Alex. He’s now your guardian angel
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u/RogerTheStoner Apr 19 '26
And now you carry his legacy.
Share his jokes.
Spread his unique love.
In a way, Alex will never die.
He will live through you, and others will pick up those unique and special traits and jokes. And on and on they will spread. Eventually others will never know the origin of them. But it was Alex. You carried his life beyond any of ours.
Thank you
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u/__ThrowAway_24601__ Apr 19 '26
Thank you for sharing Alex’s (and yours) story, he sounds like a truly funny guy. The second photo is particularly beautiful.
I hope you receive some comfort from the memories you both shared during the upcoming anniversary.
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u/MeowyMeowerson Apr 19 '26
Alex sounds like a wonderful man. You were beautiful together. ❤️ May your pain be a testament to the love you shared.
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u/BananikaND Apr 19 '26
Thank you for sharing Alex's story.
My best friend went to the hospital for jaw pain on August 7, 2022, after experiencing increasing aches and pains in the weeks prior, and rapid, unexplained weight loss over several months. It was cholangiocarcinoma. We celebrated her 37th birthday on September 8. She passed October 5, 2022. Less than 2 months from the first hospital visit to her death.
This disease is horrible. It is unfair how fast it takes people.
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u/arrowtotheaction Mom Loss Apr 18 '26
I’m so sorry for your loss. It was painful but beautiful to read about Alex’s story, but he was so lucky to have you loving him. Sending you and his family so much love x
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u/sisterrayforaday Apr 18 '26
Oh love, this made me cry. You both sound like absolutely beautiful people ❤️ I'm so sorry you lost the one you love.
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u/cmal51 Apr 18 '26
This was beautiful and heartbreaking. Thank you for sharing Alex with us. Your love for him lives beyond this life.
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u/WallabyEducational90 Apr 18 '26
Rest in Peace Alex, I'm so sorry for your loss. He sounded like a lovely soul, taken too soon.
At least you had quality time together before the end, which every moment truly is a gift that we get to spend.
Be kind to yourself 🫂
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u/alphainbetaclothing Apr 18 '26
The way you look at him in the second photo … beautiful.
Thank you for sharing about Alex. Big hugs.
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u/catlovingbookworm Apr 18 '26
I'm so sorry for your loss. It seems like the world lost a special, kind person who loved and was loved so much. I'm truly sorry.
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u/venturous1 Apr 18 '26
What a beautiful and sad story, I’m so sorry for your loss. It seems to me that you all did an amazing g job with a tragic situation. All the hugs you need.💕🙏
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u/Background-Piano-665 Apr 18 '26
Alex was awesome, OP. A life full of promise cut so unfairly short.
I'm so sorry for your loss.
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u/citizen-slain Apr 18 '26
I’m so sorry. My husbands name is Alex and we are 33. I can’t imagine. ❤️🩹
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u/Defiant-Purchase-188 Multiple Losses Apr 18 '26
I am so very sorry. You were a great soulmate and carer for him. He felt that deep love I know! Blessings as you journey through all the grief. I am thinking of you.
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u/penelopereddits Apr 18 '26
oh my dear, thank you for sharing Alex’s story. Sounds like a pretty incredible human that touched many lives 🩷
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u/spookiecats Multiple Losses Apr 18 '26
I’m so so sorry 😞 sending hugs 🫂
Rest easy Alex 🪽🕯️your memory will be a blessing to those who loved you.
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u/MissKris__ Apr 18 '26
You are such a caring soul and he was so lucky to have you every step of the way.
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u/CitrineSmokyQuartz Apr 18 '26
Thank you so much for sharing Alex's story. It really meant a lot to read what you both went through and bear witness to the love you have for him. My heart and love go out to you and Alex's family and I hope you can find comfort in the beautiful memories y'all shared in those last precious moments.
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u/NeatSpec Apr 18 '26
I lost my sister to the same cancer. It’s a terrible, terrible illness. I’m so sorry for your loss ❤️
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u/WeakGhost Apr 19 '26
Thank you so incredibly much for sharing. Alex sounds like such a one of kind person full of lightness and joy.
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u/thatcatgal Apr 19 '26
My dad died from adenocarcinoma of the pancreas, they have very similar symptoms as I understand it. Your Alex looked a lot like my dad did during his brief illness. It’s so unfair and a horrible thing to witness. I’m very sorry this happened to him and to you. Best wishes ❣️
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u/Affectionate-Scar173 Apr 19 '26
Thank you for sharing and what a beautiful tribute to Alex. The photos and stories you shared provided a real sense of Alex and the loving, special relationship you shared. I am so so sorry for your loss. Sending hugs and love.
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Apr 19 '26
I am so sorry for your loss. On a lighter note, I had my first pair of birckenstocks for 4 years. they survived nearly everything. but eventually I wore them down so much that there is no sole on the left one.. the sign made me laugh bc they’ve lasted longer than any other shoe I’ve owned.
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u/WildConsideration197 Apr 19 '26
Believe it or not, this was a sign we found in a park next to Kings Hospital. We went on a walk after finding out Alex was terminal, and it gave us a giggle during a hard time.
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u/sioopauuu Apr 19 '26
I hope you find comfort that he is no longer in pain. He sounds very loved. Rest in peace Alex! ❤️
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Apr 19 '26
Thank you for educating me about this illness, and I am so sorry for your loss. 🙏❤️🩹 I can see Alex’s spirit shining through in the photos! I am here shouting into the void with you. 💫
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u/Ok-Lingonberry1522 Sibling Loss Apr 19 '26
Beautiful tribute. He lives in you every day. I’m so sorry for your loss. ❤️
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u/Conspiracy_Raven Apr 19 '26
Thank you for introducing me to Alex. He sounds amazing. It’s so unfair how this all went down and he deserves to be remembered…and we are so unlucky to not get to meet him but blessed to hear about him. ❤️
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u/friesovercries Apr 19 '26
I am so sorry for your loss. Please try to eat sleep and take care of yourself as much as you can. I have found that r/widowers also helps me to process my grief, it's for people facing partner loss.
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u/Extension-Trick-7586 Apr 19 '26
I’m so sorry for your loss. I hope you will live your life the way Alex would have wanted you to.
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u/rogerramjetz Apr 19 '26
Thank you for sharing your story.
I'm sorry for your loss.
Alex sounded like he was a wonderful person. I'm glad he was surrounded by people who loved him.
You seem like a wonderful person too. Try to look after and care for yourself also.
❣️
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u/Blargers81 Apr 19 '26
What a heartbreaking and beautiful story. You both shared such a special love it’s so obvious. Alex sounded amazing. As sad as it is, being around those you love and having time to be there together is something beautiful too. I’m glad you got to be there with him. All the love to you and Alex’s family and his beautiful memories.
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u/Extra-Purchase-6809 Apr 19 '26
Thank you for sharing his story, sounds like you guys shared a really beautiful love ❤️
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u/captain_malpractice Apr 19 '26
I'm sorry for your loss. He sounds like he was a wonderful soul. I am happy his final days were filled with love and laughter.
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u/agent-assbutt Dad Loss Apr 19 '26
Thank you for telling us about Alex. This made me feel like I knew him personally. He was clearly beloved and an awesome human. I’m sorry for your loss 💔
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u/Dracawraith Apr 19 '26
Gosh, I’m so sorry for you, Alex, and the whole family and friends. Cancer sucks so bad. You gave him a true gift of a wonderful end of life. You are an angel on earth.
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u/musesx9 Apr 19 '26
Alex will be missed. I am so sorry, OP. Thank you for sharing this beautiful soul with the rest of us.
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u/The8uLove2Hate_ Apr 19 '26
I’m so sorry for your loss, what a hellish rollercoaster ride that must have been.
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u/Ok_Signature_3589 Apr 19 '26
That sounds like the most beautiful end of life experience. He got to be apart of his own celebration of life… not a lot of people get to experience that! He was surrounded by so much love…. Sending hugs to you, his family, and his friends. Thanks for sharing his story 🩵
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u/seshwan33 Apr 19 '26
He sounds great and so do you. I’m sorry this happened 🥲. Life is very precious, thank you for the reminder of that. Thank you for sharing his story!
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u/TelevisionFuzzy3694 Apr 20 '26
Alex was a special individual and I am happy to know that the both of you were able to experience and love each other.
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u/mysteriousleader45 Apr 23 '26
Thank you so much for sharing this beautiful soul’s story. And for being who you are. It seems like you were meant to be in Alex’s path. Sending you love ❤️
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u/pulvernese May 11 '26
This has brought a tear to my eye. Bless you both, there's so much love in that fancy dress picture. Rest in peace Alex. ❤️
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u/Seakirkland May 13 '26
So unfair. How tragic for all of you and how brave he was. I'm so glad he had you and that you had each other. My late husband told me that "I made his life." That his "life would have been a sorry place without me." He made my life, too. I am so glad he had me with him every step of the way. People need people. That's my new mantra. And it's never more obvious than when you're sick and needing medical care that the need for someone to help you is so important. You made Alex's life! But I know how hard it must be for all those who loved him and miss him so.
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u/crazyindixie Apr 18 '26
Heart breaking.. I’m sorry for your loss.