Hi. I’m not sure what I am hoping to gain by posting here - perhaps I’m carrying a lot of guilt that I can’t quite shake. I lost my 76 year old Dad to Acute myeloid leukaemia (AML) 2 years ago this week. He had been living with a diagnosis of Polycythemia Vera for 3 years and had become obsessed with his “numbers” - keeping a spreadsheet of his blood counts after every blood test. But it was manageable with tablets and didn’t present too many physical barriers to him living a normal life. Then in October 2021 he started to feel unusually unwell with night sweats and fatigue. He was told at his regular GP blood check ups that he was anemic and was given shots to boost his iron intake. He had also had covid so Acute myeloid leukaemia (AML) was effectively hiding in plain sight. Despite his blood checks he wasn’t diagnosed with Acute myeloid leukaemia (AML) until February 2022 when his bloods revealed such low levels of oxygen it was a miracle he had managed to get out of bed every day. Apparently there was always a rare chance that his blood cancer could morph into Acute myeloid leukaemia (AML). He was admitted to hospital to begin a 3 week treatment of venetoclax and azacitidine. He was told the chances of the treatment working were around 40%. This diagnosis came out of nowhere and knocked us for six. But he was resolutely positive and optimistic and we, like him thought he could beat it. After a shaky start - we had to wait while they explored the origins of an old infection that caused a nightly spike in his temperature - he seemed to respond well to the treatment and our hopes were raised. However, 2 weeks into his treatment he contracted sepsis from a canula and after 4 days in ICU on a ventilator we had to say goodbye. The cause of death on his certificate was neutropenic sepsis. 2 years later and we still aren’t really coming to terms with his death. When I am feeling sensible I feel that his prognosis was so poor he was perhaps spared an agonising few months of failed treatments. But I am also angry and worried that we didn’t fight his corner enough with the hospital. Should we have held them to account for sepsis? We knew it was a risk - the hematology ward he was on was covered in posters about looking out for the signs of sepsis but he wasn’t in a quarantined room. He was sharing a room with another patient - divided by a curtain and the only PPE we had to wear when visiting was an apron. I know his outlook was poor and apparently his particular Acute myeloid leukaemia (AML) was extremely complex and difficult to treat. But his consultant had said his initial results after the first round of treatment were promising. To see his life end in such a heartbreaking way has impacted me and my sister so heavily. We are worried we didn’t do enough. I am not asking for answers. I know each case of Acute myeloid leukaemia (AML) is unique to the individual and I suppose I just feel better by airing my grief. I hope by posting this I’m not upsetting others who are holding out hope. It is so important to be positive and I wish all of you who are suffering and looking after those with these awful conditions well. x
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Oh @EmilyD I am so glad that you have found us and I am so sorry that you lost your dad 2 yrs ago.
Perhaps you do not have to have a purpose or reasons to post, we are just here for you any time you feel like touching base.
I think anniversaries are so hard and there are no rights or wrongs to thoughts and feelings and anger and guilt are so natural.
If you would like to talk to someone the Blood Cancer UK support services are there for you too on 0808 2080 888
Be ever so kind to yourself and thank you so much for having the courage to post.