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.
