I asked above what support others had got from their children. This is what happened to me:
My son died aged 40 of non cardia stomach cancer, just 3 months after he was diagnosed.
Statistically, in his case, the most likely cause was genetic, given his young age and very prudent lifestyle and the fact that there was no Helicobacter in the family. I was desperate to find out the cause, mostly to protect his siblings but also to help me process my terrible loss. I took advice from a charity who told me that online tests were totally inadequate and that the only reliable route was through NHS geneticists who would analyse tissue samples and do sophisticated tests unavailable from most sources. I told my children this.
The necessary tissue samples, his biopsies formed part and parcel of his hospital records. I downloaded the form to obtain these and found that his Executor’s signature was required. I did not know who she was, so I advertised for anyone who knew, and emailed various people to ask. I discovered later that both my daughters knew yet did not tell me. They were against my finding out how he died, and tried to prevent me by gaslighting me and saying I was trying to get the medical records to pry on him, and that I would be invading his privacy.
I said to the younger one that I was sure that when I found the executor they would certainly agree to sign, “as few people were capable of the degree of cruelty needed to try to prevent a newly bereaved old woman from knowing what had happened to her son”. At that time I did not realise that she was the one doing it, and was deliberately keeping the identity of the executor secret from me to prevent me getting his hospital records. That obviously stung her, and she then contacted the solicitor and told her that I wanted the signature and that she herself did not think I had any right to know how he died. Luckily the solicitor disagreed, as she had had a bereavement of her own and had wanted to know why. She contacted me and invited me to send her the form to sign.
The biopsies were released to some NHS geneticists whom my daughter had found in the meantime. The geneticist also required my signature as next of kin. My elder daughter had been trying to get herself a test without the biopsies, been refused by one doctor, changed doctors and then fobbed off with a consultation with another doctor who just said she “probably didn’t have it”. No test. My son had also been trying, but until we got the biopsies he had had no response. After that the testing, a long and detailed task, very slowly went ahead and six months later we were all massively relieved to be told that my son’s results were negative for a genetic cause. The siblings were safe.
Some time after the biopsies went off to the geneticists I received a thick envelope from the solicitor which, she told me, contained my son’s written hospital records. It is still in a drawer, never opened.
It turned out that their father had thrown a tantrum at the suggestion that the cause might be genetic. It is well known that if a person does not want to know the result of a familial genetic test they can choose not to be told. He had opposed the test that might have saved his children’s lives out of pure vanity.
