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
Hello there.
I am New to the blood cancer UK website.
I don’t really know where to start.
My wife Debbie passed away on the 2nd January this year to Acute myeloid leukaemia (AML) Leukemia.
She was diagnosed the first week in July 24.
She had just turned 50 years old.
Debbie was such a caring beautiful young lady who would do anything to help someone if she could.
We all thought that her treatment was going in the right direction, so did the consultant. Debbie went into remission with the first round of a very aggressive chemotherapy.
6 weeks later, it had returned with aggression.
The consultant tried other forms of chemotherapy etc, but it was not enough. Nothing more they could do for my wife.
I tuck time off work to look after her.
Gradually you could see decline in Debbie. It was so heartbreaking, and still is. I don’t want to go into all the details. She passed away in my arms on the 2nd January this year with family and friends around her, which she wished for.
Half of me now no longer exists. Lost very angry, melt down everyday.
Debbie was young, beautiful, my best friend, my wife, my companion…
Hi.
I felt I needed to reply to you as it’s such a difficult time for you and unfortunately will continue to be so for some time.
My daughter died aged 33 from blood cancer, just over 5 months ago so I know what you are going through.
I’m glad that you were able to be with your wife at the end, even though it was very sad I’m sure.
I have cried every day bar one for 5 months now and know that it is normal. No one grief journey is the same, but for me I just need to know that what I feel is normal, not a true Depression but extreme sadness.
I have joined a support organisation which has helped and to know I’m not alone. I have also read books about bereavement and found this helpful, again just to be reassured that what I am experiencing is normal.
I am told that the tears will become less one day, but who knows when that will be.
Perhaps find someone to support you, family/ friends or a church group or other.
CRUSE can provide counselling if this is something you feel you need.
No one can truly understand unless they have been through something similar, but I’m sure you’ll find someone you can reach out to.
Also Maggies centres at hospitals around the country offer bereavement support groups.
The fact that you have messaged on this site is very brave and the first steps.
I hope this helps- from me, who is going through bereavement. X
Please see my reply on the forum
Regards Lady P
Oh @Treeman and @Ladyp my thoughts are with you both and I cannot even imagine what you are both going through.
Thanks so much for having the courage to post so honestly.
I cannot even add to @Ladyp responses as everyone’s grieving is different, there is no right or wrong way.
Yes, I also needed grief support.
We, on our forum, and the Blood Cancer UK support team on 0808 2080 888 are there for you both.
Take so much special care of yourselves and please do keep posting and reaching out.