Second year without her

I haven’t been on this site fir a while. Lost my darling daughter to cancer in December 2018 - Em was 29, she was my eldest child , I also have 2 sons, and she was my best friend. We were so alike but she was the best version of me and I’m broken without her.
The first year was difficult but looking back it was also unreal. I returned to work, even taking on more hours and constantly kept busy. I started seeing a counsellor , went to a medium , attended a spiritualist church and somehow got through the first of everything without her.
This second year however has been unbearable- so very real and finding it hard to face a future that doesn’t include Em. I love my sons so very much and to be honest they are the only reason I keep going.
I’m in floods of tears as I write this (sorry for any typos as I can hardly see). I know many of you will understand so it helps a little to put this out there.
A broken hearted mum x

Dear @Karen7, I am so sorry to read that you lost Em, your sentence that she was the best version of you is totally heartbreaking, you loved her so much.

I think that sometimes to cope with grief we can just try and keep ourselves so busy, but then eventually we suffer from burn-out. I hope you find help here.

Dear Karen, i do not use this site much i am to broken. Lost my beautiful son Luca on his 21st birthdat 16 months ago after a three month stay in hosp.He was at home on what should of been his recovery and better future. I have just started post traumatic therapy. The second year is worse as first year seemed sureal. I cry for him several times every day, he was my friend to. I just an a lost soul no and shut of from life. If it was not for my husband i would not be here. I am in denial at times and still say this does not happen to me it happens to others. I it just horrendous wuthout our beautuful children. hug xx

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Dear Abdullah,
Thanks so much for understanding . Nothing much helps but knowing that others understand and are going through their own loss helps to feel less alone xxx

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Dear Tonia,
I wish I could say something that takes all of this pain away but losing a child is something no one should ever have to do. Youre so right to say the first year is surreal - you somehow get through it as though part of you has shut down. I felt as if it would all go away, that somehow it would be easier after every first milestone but I just see my future as a series of events without Em there to share in them and that is just unbearable. The biggest hug from one broken mum to another xxxx

We will never get throught this, therapist told me we have to try and find some sort of new. I can only do day at a time but every night i go to bed i hope i dont wake up to face another day without my Luca and all we would be doing and him seeing. So many hopes and plans for his better new life even though he would need more ops. I long to hold him so much and see his smile and calling me mum. Life is not fair and we all hate this rotton club we now have to try and fiqure out. Others ask me how i am or are you alright and i say no i am not alright i will never be. There are no words for us. Hus to you all xx

Oh Tonia - its just so so hard. I’ve had such a bad day of missing Em - trying to keep busy is so exhausting and only keeps sad thoughts at bay for such a little time. This time of year is so very hard as it was the beginning of the end, Em became so very sick for the last few months as the cancer took hold. Sending you love and strength to face each day xx

I know its so hard every second of every day. I sit in the space where Luca was on sofa ever day most of day. I made his bed up on it when we came home from hosp. I am surrounded by his things, his ashes are next to me we have not put them in the sculpture we got for them yet. \it is sheer torture without our beautiful children with us seeing life. All i can sa is take each day as it comes as i do , no pressure, no commitments just what you want to do not what others are telling you to do or should be doing. I could scream at them at times. I am completly broken without Luca here, the urge i get to hold him just cripples you,the desperation for them. Hug to you xxxx

You are so right - one moment at a time is all we can do. Its just so very hard to face every day without them - it never gets easier but to be honest I don’t want it too as that would mean not caring as much and I could never do that. I wish there was som way though to live in a positive way. Sending much love xxx

That is exactly how i feel, if it gets easier i will not care as much. Luca is on my mind every second of every day. We love them so bad, we want them to be here with us . My therapist says there is a way to live in a different wa y but we have to come to that by ourselves if and when we are ever ready. But i say i dont want to live like this, i dont want this life without Luca, i dont want a new normal i want my old life. I dont like this. Do you have a husband or partner to support you. I talk to another lady she lost her daughter a ear before i lost Luca, she was on this page, she still feels the way we both do, i dont think it gets easier. Big hug to youxxxx

Dear Tonia - yes I do have a husband and sometimes we deal with things in the same way and that helps though other times the anger and bitterness at what happened to our beautiful girl drives us apart. My Em was super health conscious, a runner and non smoker yet she got an aggressive cancer and I cannot come to terms with that. From diagnosis until her passing it was 18 months of sheer hell for her . I used to have religion in my life but no more - she was such a kind and loving person and I cannot accept how this could happen to her. Sorry if I’m ranting and angry but that’s how I feel most of the time. I have a job and lovely friends but I hide all of this from them as they never understand. I too have met another mum who lost her daughter to cancer - only we can understand this pain xxc

Hi tonia,
I am glad to see you again, I was thinking about you earlier this week.
x x x

Hug to you, still struggling very bad. Having cbt therapy once a week, but find it silly. Just want my Luca xxxx

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I am not religious but on the night they were trying to save Luca, i was holding my husband saying please god please, if you save him i will go to church. I hate the word god and anything to do with religion its rubbish and i get mad. I wont even say the word. My husband deals with losing Luca different to me but he is so good with me. He has given up work to see how we go because of me. He says one day at a time thats all. Luca should be here this should not of happened he was on recovery after three hard months in hospital, i cannot accept that he is not here, hearing him call me mum, us laughing. Its just not fair. They should be here living with us, i hate living this way without mybeautiful Luca as you do without Em. Is sheer torture. No words for this,for us. big hug to you xxxx

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Hi Tonia,
I used to thank god every night for my children and prayed to keep them safe - it was the only thing I needed from life. I no longer pray and am not sure what I believe any more but I hope there is something better than this world where we are re united with our beautiful children. I did visit a medium at the start of the year who was lovely - she knew nothing at all about me but described Em perfectly as being with me. It gave me hope and I cling to it in the darkest days. I hate this time of year - we always loved Christmas so much but it will never be the same and I just want it over. Sending love and hugs xxx

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Yes Karen i hate christmas too. Second one without Luca and i am completly forgetting it again. I used to decorate the house so lovely, Luca would laugh at me, i would put them up fist da of Dec. Its such a horrible way to carr on without our beautiful children with us and seeing life. Everything just seems so pointless now. I miss Luca,he was my friend to. Our love is so strong for them and for them not to be with us is torture. Our longing for them, to cuddle them. sending hugs always. I am here if you want to talk. Day at a time,thats all i can do, as you, xxxx

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Dear Tonia, I make sure I mention Em every day to someone. Just dropping her name in an ordinary way makes me feel better. Obviously at home we talk about Em all of the time but it’s important that others remember I had a daughter and how much I love her. Tell me about your lovely boy - what did he do? Things he loved? Em just loved life , she worked hard at everything she did , from her schooldays up to her working life. She loved running but most of all she loved her family and friends , she was the kindest person I’ve ever known and I was so proud of her my heart would burst. I think I told you I have two sons and I love them so much , they are my reason to keep going but its so very hard . Much love to you xxxx

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My Luca was a lovely gently boy and a good friend to others. We found out when after we lost him he had helped a girl from committing sucicide,she was heartbroken he had gone. He had a great friend in America,they had been communicating for four years by gaming together etc. Luca was going out to see him once he was strong enought and had recovered from his treatments. We often spoke about it in hospital together. Well his friend Farrell in America had a baby this year with his partner and its a girl but they have called her Luca. One of his school friends a girls had his name tattooed on her. His cousin has had a tattoo of a sunflowe on her leg with his name entwined around the stem. Luca loved the colour yellow since he was a toddler and knew colours. He was a great collector of games, new and retro. Japanesse books,anamie and figures, pokemon since he was two. He had his own lounge, walled out with shelves and all his collections, and his bedroom and a spare room of shelved Lego. Everything was perfect and all in order. It just breaks my heart. He was going to go to Japan, he was facinated by it. His dad and i have said we will go but i cannot face it yet. He was my friend , i also dearly miss that. He has a sister she is 32, great gap,we only intended to have one child. I actually struggle to see her, she left home 3 years ago,has Dyspraxia she is with her boyfriend,but struggles with life, we do not have the same relationship. I love her dearly ,Luca was always going to look after her when we were gone. He was born with dairy allergy and a poorly baby. He developed ulcerative colitus when he was comming up to 17. No meds ever worked for him and was constantly on steroids on and off. He never went into remmission. He started working with his dad from school but had to stop at 18 as he became very weak and lethargic. Sometime he did not had the strenght to open a bottle of water. He could not have anything with sulphate in, no raw veg,anything with dairy. No nuts,bran. only cooked fruit,no citrus, no fruit skin. He was on a limited diet to much to mention. He had constant iron infusions,cameras down his throat and backside, he detested them. We would joke about it, he would say iv got a serious condition and we would laugh. It started to affect his liver too, he was also on meds for his liver. he would have many toilet accidents,struggled to sleep had to sleep sitting up when he could get to sleep,usualy for coulple hours at time if lucky. He did learn to drive, his instructor understood and they would have to stop for a break for him and toilet etc. We did get him a car but he only drove it half dozen times he had no energy. His mates would come round here,i miss the laughter etc. He had couple accident out so would not go out , he blacked out too. In march 18 he came down and his legs, feet were badly swollen and i said we will have to go hosp,he hated going. He hated his appointments, we were transferred to Addenbrooks from our local hosp as they could do no more for him. So off we went i said it will be fine. They kept him in our local for 8 days ,we were waiting for bed in Addenbrooks. Off we went there, he hated it. His liver was in a bad way, his body was swollen all over, his liver was not letting the blood flow through it to his heart, blood vessels had grown of it to try and get through. He was going to have his complete bowel removed for a stoma bag. After 4 days there, he developed a lung disease,we were put into isolation for two weeks, masks, like now with covid. I was at the hosp from 7.30 in morn until 9ish eve, i slept there lots of times of a recliner chair. He had anxiety by now. Well eventually he got strong enough ,had a stent put through his neck,down to his liver and a shunt put in liver for blood to flow through. A 3 hour op took 9 i was out of my mind. Still swollen,he could barely walk,so i would take him downstairs in hosp in his wheelchair. They let us home after 3weeks for a weekend, it was great,we had to go back on the sun eve. Had his complete bowel removed, was in intersive care for 3 days, i slept there. He had also got 2 fractured vertabrae, he was in a lot of pain, his bones had got to weak from the steroids, he was given a back brace. Stoma fitted, was changing it, but his stitches and scar was not healing, a hole was there and infected. Beacause he had no immune system it would not heal. We begged to go home after 4 weeks, he was changing his bag, so they said yes. He was constantly hooked up to drips etc all the time we were in hosp, .The day we left was the best, he was still swollen etc,they said he would now need a liver transplant and have to be seen in clinic for his spine. But that was ok we would deal with it. He never moaned once, only broke down once couple days before we left. We had some great laughs in there. On 5 day home, he could not get upstair so i made him a bed up on the sofa in lounge, we have a big loung one. 5th day,his 21st birthday, all balloon around him etc,i was planning a party bbq for the sat it was mon, i was ordering food from m&s. He had told his dad that morn he was not feeling well,his dad said,not suprised after what you have been through. Lu a was always feeling unwell, so it seemed norn. He was sickj, so i called doc, she came out and said hes got to go back, and called ambulance. They came after what seemeges, they put him on drips indoors, i was holding one. Luca was unwell but talking. Off we went sirensgoing. I am crying now typing this, i cannot bear the siren noise now. We went straight to resuss, pulling him to bits, hooking him up, digging in needles pic lines again. The specare team came down, took him forscan,said his scar was infected said they were going to take him to critical unit to make him comfortable, took us to a room said they would get us once he was settle. In there 5 mins,they came and said Luca was taken turn for worse, we ran there, they were trying to save his life. We were at end of curtain listening to all of this for 1 housr 55 mins i told you what i was saying. No pulse,he never came back, they said he had heart attack. He had post mortom as they said they did not understand it should not of happened it was not on the adgenda. He died of giant cell myocarditus, a very rare heart disease. They said they could see his heart was not functioning right when they scanned his scar infection thats why they took him upto critical care to start treating him. They said if he had come back he would of needed heaart trasplant and been very ill in intensive care for over 9 months and no guanantees. I still cannot believe it. We had so many plans for the future. He was my life, i want him so bad. I am a complete mess. Do you know i never told him of or shouted at him, he was such a good child little and grown. Had lots of mates etc like your Em. Its shear torture. I look at all his collections, kissing them toughing them. I open his wardrobe door, scoope up his t.shirts hold them to my face and cry. Iv gone of to long sorry. Its is so hard to keep going its the hardest job we have to do. hug and love to youxxxx

Oh my dear - thank you so much for sharing your story and telling me all about your beautiful boy. How brave he sounds and uncomplaining especially as he had so much to deal with. Why is it always the beautiful young kind souls who are taken from us - I struggle every day with this. Em was always so healthy, she took great care of her body and ate healthily, loved her exercise and yet she got such an aggressive cancer that it took her in 18months from her diagnosis. We refused to accept that it was going to get the better of her and never stopped searching for answers. Her friends started a crowd funding page and we took her to new York for a second opinion. She never complained and was still always there to listen for her friends. She was my best friend as well as my first born, we spent so much time together and it is like a light has gone out in my life. She passed away on 18th December and I feel I’m counting down every day. I re live all if the terrible memories of the awful pain she was in and it tortures me - I just want to remember the beautiful, funny young woman she was. Like you I’m crying as I write this ! I put a brave face on every day and go to work- people think I’m doing so well but they have no idea. I send you love ! Thank you for telling me about Luca- now another person knows about your boy !! The biggest hug, Karen xxx

Thankyou for wanting to know about my Luca, like your Em, he was a beautiful boy. Did all what he should of done with his diseases, sticking to all the food rules, never smoked, never had alchol as he could not. It so so unfair, i say this all the time, Please dont always put on a brave face at work, if someone asks are you ok ,say no if you want to,i do. We are not ok,alright and never will be, we have to live without our beautiful children. We may learn how t live a different way but will always carry the longing, hurt, pain,unfairness of it all inside our heart never smiles and is broken. Luca was funny as are his dad and me i miss so much of that as you do. I jut hate the fact he is not alive for himself not just us,for him ,they should be here seeing life. Love to you always, xxxx