[emswParticipant]

Hi,

I wanted to share my mum’s experience to hopefully prevent others going through similar.

My mum (who was 72) was rushed into hospital on Christmas Eve last year after experience bone pain for 3 weeks and blood tests found late stage kidney failure. After a week of tests late stage myeloma was diagnosed but treatment looked hopeful – she was even promised a SCT.

Unfortunately the initial treatment for the kidney failure was incorrect and she was given too much fluid. She was very ill after that but her kidneys only recovered very slowly. She was discharged on chemo three weeks later but her kidney function was still poor. Three nights later she began to vomit and was rushed into hospital. The hospital had no idea of the cause and didn’t scan her for 18 hours later – when they did they found a fluid blockage in her bowels. We were called by the hospital and told they’d “drain” the excess fluid and she’d be fine. 20 minute later we were called again and asked to come in as she’d taken a turn for the worse. We went in and she’d died, apparently of a heart attack after vomiting up the blockage.

We suspect that her death could have been prevented by better care, but i just wanted to share her story other could be aware of this complication.

I miss her very much.

Emma

[tony642Moderator]

Hi there,

I am so sorry to hear of your story. I think it is a general problem where Myeloma is a little-known disease and diagnosis can be missed and blamed on something else. I don`t blame you if you feel angry about it, Myeloma UK are trying to get knowledge of the disease made more widely available, and I am just sorry it was not able to be of help in your mother’s case.

It is difficult to know what to say in these circumstances, but keep your chin up and take one day at a time. Just think of the happy memories you have!

Sincere regards, Tony

[kh0305Moderator]

Hi Emma,
I’m so sad to hear about your mum. One of my friends lost their dad due to late diagnosis of MM many years ago and its such a shame that awareness is still low, despite the work of Myeloma UK to increase awareness.

I can only imagine how much you must miss her. Thank you for being so brave to share your story. I wish you and your family all the best during this difficult time and send you much love. Take care of yourselves xx

[emswParticipant]

Hi,

Thank you so much for your replies – they are very comforting.I’m starting to feel a little bit better about my mum but have become very anxious about my own and my family’s health as a consequence of the experience.

I’m not angry about what happened to my mum but it makes me very sad to think her passing could have been delayed with better treatment.

On a more positive note, my mum had a lovely life and was healthy and very happy up to the last three weeks. I’m very grateful to have had her for the time I did and hope that a cure can be found for myeloma soon.

[richfsModerator]

Hi Emma,

I am very sorry to hear of the loss of your Mum, and the confusion around her diagnosis and time in hospital. May I add my condolences to those that you’ve already received here.

I am glad to hear that you aren’t holding on to any anger, it can’t change things now. Sitting with the sadness that we feel, and the loss that goes on, can be more helpful than pushing it away or hiding from it.

Bereavement and grief inevitably have a huge impact on your life, for a long period of time, and it can often be difficult to talk about. It is good to remember and focus on the good times you had with your Mum, but also important to give yourself space to grieve. There are lots of avenues of help available which you may benefit from, local hospices often have a bereavement service, or you can meet with a bereavement counsellor from Cruse. There are other resources such as http://www.ataloss.org – although the range of information and services they have can seem daunting.

Do reach out to us on this forum, and the infoline.

Best wishes,
Rich.

[kh0305Moderator]

Hi Emma,
It is good to hear that you are starting to feel a little better. Hopefully the anxiety around your and your family’s health will start to improve over time, but if not, do seek out support as Rich suggested. Don’t feel you have to struggle along alone.
I am so pleased your mum had a happy and healthy life up until the last 3 weeks which will leave you with many happy memories of her. I hope you continue to feel better and we are all here for you if you need us xx

[mulberryParticipant]

Hello Emma
Thank you for sharing your family’s terrible experience with your dear mum’s myeloma, your loss and the failings of her hospital treatment.
They strike a chord with me as there were a catalogue of errors in my late mother’s care, a world away from the care that I have received as a myeloma patient at my current hospital.
I am still processing my mother’s death 18 months later, but would suggest that you try to remember your mother as she would want to be remembered, not for her final few weeks. It may be helpful to contact PALs at the hospital to record your concerns over your mother’s treatment if you feel this will help you, and to seek counselling as Rich has suggested. The suddeness of your mother’s death is bound to make you worry about your own health and the health of others you love, it will take time to be able to take health for granted again.
With condolences for your loss & thanks for your posting, Jane.

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