Lost my lovely Mum, I'm heartbroken and lost

Hello everyone, my first time here. I am a 32 year old man who has just lost his lovely sweet Mum to Cutaneous T Cell Non Hodkins Lympthoma. I had been caring for her for nearly two years after I was made redundant from my dream job after 6 months. Mum passed away at xxxx Hospital at the age of 68 due to complications with infections, specially Pneumonia and plurisy (wet lung). My father passed away 8 and a half years ago to Bile Duct Cancer. 

I cannot even describe the pain I feel, I was so close to her, she was an incredible person who put everyone else first before her self, so kind, generous and a beautiful person. I am absolutely destroyed by this and I just want her back so badly. I am so angry with the local surgery, three years ago they kept pushing that it was Psorasis then Dermatitis, she had to wait over a year to get a lumbar punch to prove it was this rare form of Non Hodkins, apparently also known as a type of Leukemia, with no cure and no reason why it happens other than age related or previous Hodkins diagnosis.

Her first round of Chemotherapy was on a drug called Caelyx, and it was working so well, her lympth nodes were shrinking in size and great response but then it started failing a year later. In the middle of treatment, xxx hospital decided to stop Chemo as they thought she was getting better, then second line chemo also failed. She broke down in tears in hospital when she was told there was nothing more they could do for this awful, cruel disease. She had two huge gashes in her left leg, where she had fluid retention in her legs and they constantly leaked, and I had to changed bandages every day and put cream on her.

She had beautiful long hair, all falling out because of the constant scratching, and her scalp and skin was so red and bleeding. I felt so powerless, I cry everytime I think of the awful thing she was through, I promised to protect her, I promised my father I would protect her no matter what, I feel like I failed. At Christmas, she had an accident in one of sofas, and fell through it into one of the wood beams, she fractured a bone in her spine and this was difficult to deal with and help her get mobile again. Just so painful to watch my Mum go through all this ordeal.

Five weeks ago she was kept in hospital after going to a routine appointment checkup because she had a Staph infection, MRSA. She was told she was going to be discharged the second week but then she was kept again for another week, then told she had a touch of Pnemonia. The hospital did not move her to a quaritined ward like they said they would to prevent infection, instead they just moved her bed over the other side of the same wards room. I was angry about this as well, so basically making her infections worse.

She then developed Delirium which happens when you have an infection, really badly and that's when the Pneumonia was getting worse at that point around week 4 being in the hospital. She didn't know who I was or other family members. She would lash out at nurses. This was all upsetting to see and I couldn't kiss her or hug her because of the infections. One day we got a call, hospital told us she tried to leave the ward because she just wanted to come home. She didn't know she was doing and managed to get to the elevator apparently, telling the nurses to back off with her crutch. I wish I was there, I wish I could of told her everything will be ok. The hospital I feel played some kind of negligence getting her the needed tests treatment before she had delirium. She kept pulling her candula out because of the confusion and that kept delaying the treatment of anti biotics which I might think be why she didn't recover. 

Eventually she was getting better, and responded very well to the treatment, she was up and about and all jolly. Then the awful news came that Mum collapsed on her bed and couldn't breathe. We were then told after many months of being told that the cancer had not spread, the cancer had infact metasisized to her lungs and the Pneumonia was building up fast. She could not longer breathe and was put on oxygen, and basically was unconsious. We were told in the room that she didn't have a good chance of coming round because there was too much Carbon Monoxide in her brain. We got a call the next morning that Carol, my Mum had passed away. I never cried so much in my life. We went to see her immediantly and it wasn't nice. They couldn't close her mouth because of the rigor mortis had set in quickly and one of her eyes was slightly open. I can't imagine how scared she was, how lonely and what an awful death to endure. They kept telling me she died peacefully, that was not peacefully, that was unfair and unjust. She was suffocated to death, she didn't deserve this.

 

We have the funeral in three weeks, and I am not sure if I want to go see her in the funeral home in her coffin. I don't want to say goodbye. I am literally in tears writing this as we speak. I cannot imagine my life without her. I keep getting up in the morning thinking she is downstairs as I live at home as I was caring for her. I love you Mum, so very very much. I'd do anything to just laugh and joke with her one more time, have a nice chat, a hug. I had so many plans, we were going to go to Norway and we had bought a new large fish tank, she was going to pick some fish out. All my dreams and hopes with my Mum scuppered by this evil disease.

I want to say that if you have Psorasis like symptoms, get a second opinion because I blame myself for not doing so for her, we didn't know any better about this disease and it often mimicks something like Psorasis. I hope in the future a cure will be found. I am blaming myself a lot, wish I knew more and did more. I am just so lost right now, lost interest in a lot of things we enjoyed and I have this huge gaping hole in my life.

  • Hi there...

    Just had to reply to your thread .... As a mum myself with cancer, l know how much you did for your mum ... I bet she's so proud of her boy ... I would be ... You were amazing .... And please look in your mirror and tell your self " you did good"  You will miss her... It will hurt like hxll .... That's the price we pay for having such wonderful mum's in our lives ... 

    I have cancer now ... And if I go at one time, I hope my boys or any one l love don't go to see me at chapple of rest ... I didn't go and see my amazing dad there... I wanted to always remember him alive and funny and being the kindest dad any one could have ... I felt guilty for a while but so glad now, looking back ..  only go if you really want to ... Only you can make your decision ....  I saw my mum in hers and it wasn't her ... Just a shell of the person you know ... I push that memory away ... I wish I hadn't gone .. but that's just me and how l felt ... 

    remember your mum at her funnyest ... Remember her smile ... Remember how she looked when we'll ... You see we had many years "before cancer" and cancer is just a small part of our lives ... We are not cancer ... and you said she had a rare cancer that has no cure, so there's no more you could have done ... If my lad did half of what you did for your mum, I'd be well pleased ....

    So Everytime those bad memories and thoughts start to overwhelm you, bring back that time when she made you smile .. keep thinking it untill it brings a smile ... You haven't lost your mum ... She's right there, tucked up safely in your heart ...  Don't forget she's a part of you, she made you ... Sending you a big hug ...  Chrissie x

  • Hi Chrissie, thank you so much for replying! I am so sorry you have Cancer, I do hope you get better soon. I like to think she was proud of me, that gives me some kind of comfort I guess, I am proud of her for how brave and strong she was fighting the disease off and infections. Thankyou very much for your suggestions and appraisals. I think I should start to do that too and tell myself I did the best I could. You are so right about that. That is true, having the most wonderful people in your life, you realised the old saying is true, you don't know what you have till it's gone. I do miss her crazy.

     

    I really hope nothing bad happens to you, you have a lovely family from the sounds of it. I agree with what you are saying, I went to see my Dad, let's say it just was not very pleasant and was my first time viewing someone so close to me in that state. It shocked me quite a bit and my Dad had deteriorated a lot in a short space of time. I had a bit of mental problem after that and it affected me for a long time. I may not go because of that fact but I have been told by funeral directors that my Mum is looking ok currently. I will make decision next week probably once she is ready. I feel the same as you, I know that's my Mum, but that's.....not really her, just a shell of who she used to be. Death is very scary and what happens to you afterwards, it can be quite a mental shock to the system and leaves morbid images in your head.

     

    I will try to do that, remember her for who she was and is. She was such a lovely, funny and intelligent woman. I loved her sense of humor and miss her voice in this house. In hospital, she was using a mobile blood pressure machine to prop up on to get more mobile and she walked around with it. She called it "Henry", it was so adorable to see. Sometimes she would go around the ward trying to help other patients. A very selfless person who cared more about others than herself. I will never know anyone else like that in my life I don't think. And yeah she had a wonderful smile, she was always so happy. 

    That is true about cancer, don't let it define a person. No matter what Chrissie don't let up, don't let this thing inside you beat you. I am rooting for you to fight it as hard as you can. Don't let it win. I don't know you personally but I want to say I am proud of you for how brave and strong you are bringing up your sons and fighting this condition. I am sure your sons are being a great help to you too and the rest of your family are so proud of you as well. 

    I will try that if I get bad thoughts, so many memories everywhere in this house just reminds me of what an awesome Mum I had. I owe her so much, for my life, for the creation of me, for giving me support in tough times and that unconditional love we all love from our mothers. Big hugs to you as well Chrissie X Keep me posted about your progress and hopefully you can get your cancer into remission. 

  • Hi. I'm really sorry you have lost your wonderful mum. The pain - there's nothing like it. I lost my mom a month ago, and while it's a tiny bit easier today than the day she passed, it's still almost as painful.

    It sounds like your mum went through a lot at the end. It makes me so sad when I hear about really sweet wonderful people going through so much suffering. 

    I think you should trust your gut in terms of viewing your mom at the funeral home. It was a very surreal experience sitting with the funeral director talking about all our options. I'd never thought about "viewing" or coffins or anything. My mom had never talked about her wishes. She left it up to my sister and I. We decided on cremation. And we decided not to do a viewing of her body. I did some research on it, because it's not something I'd ever given any thought to in my life, and apparently it can give some people closure, particularly for people that haven't seen the person in a really long time. 

    In my moms case, everyone who would be going to the funeral would have seen her at least in the last five years. No one was going to be traveling from a distance to come. The main reasons we decided against it, were first of off we did not want anyone touching her anymore. She had been hooked up to a bipap machine, and IV and had so many tests, radiation a year earlier, biopsies, broken leg...she had been through so much and all I could think of was, I just wanted her to finally be left alone!!!

    The other reason we decided against the viewing, was that my mom was a very low maintenance kind of lady. She didn't go to hair salons, paint her nails, wear make up or very much jewelery. I really don't think a stranger could have made my mom up the way she would have done herself up in life. So it would have been traumatising for me to see her looking so different, and I didn't want to carry that strange image of her throughout the rest of my life. I want to remember her how she was before she went into the hospital, when we would sit and chat with each other. 

    I wish you all the best in making your decision, and wish you all the strength to get through these really painful early days.