[flora22Participant]

So many people live good lives after a myeloma diagnosis with good treatment. Sadly some have a diagnosis and sudden death. My father suffered from back pain in August 2020 & was diagnosed with stage 2 but aggressive myeloma in September 2020, he suffered a pulmonary embolism that September & due to the pandemic spent 4 weeks in hospital alone only coming home with delerium for a couple of weeks then back in hospital for a week before passing away alone in November 2020,due to pandemic restrictions. This has left me still so confused about what really happened.
Reading forum posts some die so quickly and others live with myeloma for years. It was all so sudden, shocking and remote due to the pandemic I feel I still don’t know what happened.

[mulberryParticipant]

I am sorry for your loss Flora22.
Your father’s illness and death were terribly short and shocking, made much more difficult to process because of the pandemic and being unable to be with your father.
I wonder whether the PALs team at his hospital might be able to find out for you information about the progress of your father’s illness and his treatment to give you some closure?
Even prior to the pandemic there were (& still are) some patients who do not live very long at all after their myeloma diagnosis. Sometimes these patients have other serious comorbidities and perhaps their myeloma diagnosis has been recognised very late.
I am sorry that your father did not experience the benefit of diagnosis, and that you are now left without him, and without closure.

[kh0305Moderator]

Hi Flora22
So sorry to read your post about losing your dad. So hard for you all, my heart goes out to you. The pandemic definitely made things more difficult and so sad that he was alone.
I don’t know what happened with your dad, but as mulberry suggests, the PAL team may be able to help?
My friends dad was diagnosed late with his MM following a fracture that did not heal after many months which triggered further investigations and he sadly passed away quite quickly as a result of the late diagnosis so it may be the same for your dad or a combination of that and other conditions.
I hope you are able to find out more information to get some closure. Sending much love to you xx

[emswParticipant]

Hi Flora22,

I’m so sorry to hear about your Dad. It’s awful beyond words to lose a much loved
parent, particularly in a pandemic. I had a similar experience, losing my mum 3 weeks after diagnosis in January 2022. I had the same questions about why it happened so suddenly, when some people seem live a long time the disease.
My family and I worked with local PALS service who were brilliant and the case has now been referred to the NHS Ombudsman for further investigation. I definitely recommend getting help if you want to look into it further- it’s such a lot to process and cope with.

I hope you are getting some sort of peace about your Dad’s passing and again I’m so sorry that you are going through this.

Emma

[Author]

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