Our beautiful daughter aged 33, died in September 2024, following complications of CAR T .
She was a primary teacher, full of life, due to get married in April next year, sporty, gregarious, loved life. I know I will never have an answer as to why she got Diffuse large B-cell lymphoma (DLBCL), and I am at a loss about my feelings towards God!
I am sceptical about CAR T , and hope there will be more research into this.
If I had tried to persuade her not to have this treatment, I know she would have told me to butt out!
It’s so sad, I cry daily, but have a lot of insight and know that how I feel is normal.
Has anyone got any tips how to get your head around everything?
I have started going back to my usual activities as definitely don’t want to sit around all day
Oh @Ladyp I am so glad that you had the courage to post on our forum.
You must miss your daughter so, so much, she sounds such a full of life well loved person.
I think it is very natural to question your faith at such a time, but you have had the honesty to voice it.
Also crying I think is healthier than ‘stuffing’ down feelings ( I am not medically trained)
As for any tips of how to get your head around everything, well I think everyone finds their own path which is right for them.
I think it takes a long time and the loss will always be there in some form.
Don’t forget you also have your strong maternal feelings in the mix.
Some people find talking therapy helps to get your head around things.
Some people have bereavement services via the hospital, through their GP, local services or via national organisations like Cruse Bereavement Care.
Personally I think going back to your usual activities is a good start.
Really be kind and look after yourself, perhaps the holiday period will not be easy for you.
The Blood Cancer UK support line is there for you on 0808 2080 888 and we on our forum will be about over the holidays
Personally I think you are doing fine, please do keep posting
I’m so sorry to hear of your loss. My dad had car t also in September last year and it failed and then went into biospecific injections. He’s now been told last week he’s terminal none of all these treatments have worked for him, I’m weary as to why none have worked. His consultant said his cancer has behaved quite unusual for the same type of b cell lymphoma your daughter had. Sending you lots of love
Thank you for your message, I really appreciate it. It’s all very sad and I think for some it’s a very difficult cancer to treat. I’m obviously not a fan of CAR T, but some of my family members think it is worth a try. I think it needs more substantial evidence. People say it’s a game changer and for some maybe. I wish I had tried to talk my daughter out of it, but equally the options weren’t great. Sending you lots of love back and happy for you to message anytime
Pauline x