Dear All,
I found the Myeloma Beacon website when I googled, “losing a mother to myeloma”. I read the stories some of you had to share about your loved ones who died of this terrible disease. May they all rest in peace.
I too lost my mother to multiple myeloma on July 19, 2014. It is now exactly a month since that tragedy, and I still feel I am only having a nightmare. In solidarity with those of you who lost a loved one and in loving memory of my mother, I would also like to share her story …
My mother fell sick and was admitted to a hospital on May 22, 2014. She would die two months later on July 19, 2014 at age 67.
The first hospital she was admitted to diagnosed her condition as acute-on-chronic renal failure. Her serum creatinine level, at the time, was measured at 8.9. The doctor referred her to a second hospital with dialysis facilities where she remained until her last day. Only two days before she died, a bone marrow biopsy result indicated that she has multiple myeloma. A day later, the result of a serum electrophoresis test, arrived confirming the same sickness (blood sample had to be sent to a European lab in advance as this test could not be done locally).
For the first five weeks of her stay in the second hospital (24 May - 30 June), my mother was regrettably treated simply as a kidney patient. That she had acute anemia was already known at the first hospital, so she also received blood a couple of times and took Heam Up syrup regularly. These added with the antibiotics she was given after dialysis, pretty much summed up the treatment she got.
During those five weeks, my mother’s condition slowly deteriorated. She stopped eating, so food had to be given through a feeding tube. Because of the emphasis the doctors placed on her kidney failure, finding the right “dialysis diet” that still can be administered through a nasal tube posed another challenge for the caregivers.
In the end, hemodialysis did not bring any noticeable improvement in her condition. That fact was not lost on us, the children. However the visiting kidney “specialist” who came to the hospital three times a week for a couple of hours (to consult an ever increasing number of “kidney” patients) advised that my mother need to stay on dialysis for additional three months in order to determine whether her kidney failure has reached end-stage or not. This nephrologist reasoned that as the condition of the patient does not warranty a kidney biopsy, a three-month “wait-and-see-dialysis” is the only way.
At last, we the children took our concerns and complaints to the managing director of the hospital - sometime during the first week of July. We complained that, even if our mother had more than 15 dialysis sessions, her condition got only worse and worse. Although our mother recognized family members and visiting friends until the end (she never went into a coma), she was confused and had difficulty in communicating clearly. She complained a lot about back pain, neck pain and occasional headaches.
Following our complaint, we got a new resident doctor (an internist). By studying my mother’s files and observing the symptoms which were there all along, this doctor suspected multiple myeloma and ordered an x-ray (to check for bone lesions), bone marrow biopsy, and serum electrophoresis. With this doctor’s intuition, advice and care, we came to know that our mother had been suffering from multiple myeloma all along.
No doubt it was a good decision that we went all the way to find the illness of our mother even if it was too late. The downside is the agonizing grief that comes with knowing, especially after she passed away. They say, “Ignorance is bliss.” After her diagnosis and death, I could not stop my mind from racing to explain her condition: the pain she had in her bones (did she break any bones?); was her confusion due to hyepercalcemia? (She did not get any treatment for this). And on and on. It also pains me a lot when I think that the observation could have also been made at least a month ago as the same symptoms existed then. I say, it could have given me time to properly bid my mother good bye - to take her as a patient with a terminal illness rather than putting my hopes on hemodialysis.
On the day she died, my mother got breathing difficulties. She was gasping for air. She was still awake and looked at us when we called her name. After an oxygen saturation test, her condition was declared as alarming. She was admitted to the ICU ward of the hospital, where she died in less than 30 minutes. Pneumonia was already identified as a life threatening risk for her. Drug susceptibility tests had already shown that she had become “resistant” to all drugs (available in the country) except for vancomycin, which she took after dialysis. So in the end, multiple myeloma gave way to pneumonia and other complications.
I decided to write this story to share one perspective from a developing country. It is my hope that researchers, patients and caregivers will find this case useful. Hopefully, this might stimulate some collaboration among the community of researchers and caregivers possibly to alleviate the plight of cancer patients in developing countries. Proper and early diagnosis could go a long way to improve the lives of patients and their families.
In closing, I would like to dedicate the following short poem in loving memory of my beloved mother.
***
Birthmark
Mother, only at your deathbed
Did I notice that you have a birthmark on your head!
That your long graying hair has always kept covered
On your last day, mother, I had to accompany your body to the morgue ...
... You were then lying on a stretcher
I was behind you, and in front was the young porter
Who left me in peace after I have signed on an old register
Do you remember, mother, I was then alone with you at the morgue?
Did you hear me talking to you? Did you hear me crying?
Did you feel anything when I touched your head …
… and for that birthmark searched?
Mother, now I know yours is on the right side and mine on the left
I had to wait until your final days to discover that simple fact!
***
Forums
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• Page 1 of 1
Re: Multiple myeloma- The story of an African mother
Thanks for sharing your story , Ella. Although it is painful to read about what your mother went through, what also comes through is how close a family you are. How that must have helped her in her last days!
This theme of not getting diagnosed with myeloma in time to treat it unfortunately does come up here from time to time. It is a rare disease, but it is treatable if diagnosed.
It seems that myeloma often manifests as kidney disease, but most of us patients or caregivers don't know much about myeloma until a diagnosis is made.
So sorry about your Mom.
This theme of not getting diagnosed with myeloma in time to treat it unfortunately does come up here from time to time. It is a rare disease, but it is treatable if diagnosed.
It seems that myeloma often manifests as kidney disease, but most of us patients or caregivers don't know much about myeloma until a diagnosis is made.
So sorry about your Mom.
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Nancy Shamanna - Name: Nancy Shamanna
- Who do you know with myeloma?: Self and others too
- When were you/they diagnosed?: July 2009
Re: Multiple myeloma- The story of an African mother
Ella, I am very sorry to hear about the difficulty your mother went through, and how hard it was for you and the rest of your family. I know it must have been difficult for you to write what you did. Nevertheless, I think it is a help to those of us in the Myeloma Beacon community to get your perspective, as you had hoped.
Here in the United States, it is known that African-Amercians are at somewhat higher risk for multiple myeloma than Caucasians, with the risk for Asian-Americans being even lower. So one has to wonder how many cases of undetected multiple myeloma exist among African-Americans here in the US, and among Africans. It is a cruel irony that those (when comparing these populations) who are at highest risk are those who typically receive poorer healthcare.
Please extend my sympathy and condolences on the loss of your mother to the rest of your family.
Mike
Here in the United States, it is known that African-Amercians are at somewhat higher risk for multiple myeloma than Caucasians, with the risk for Asian-Americans being even lower. So one has to wonder how many cases of undetected multiple myeloma exist among African-Americans here in the US, and among Africans. It is a cruel irony that those (when comparing these populations) who are at highest risk are those who typically receive poorer healthcare.
Please extend my sympathy and condolences on the loss of your mother to the rest of your family.
Mike
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mikeb - Name: mikeb
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 2009 (MGUS at that time)
- Age at diagnosis: 55
Re: Multiple myeloma - The story of an African mother
Ella -
Thank you for posting your mother's experiences in her last 2 months of life. I can't imagine how difficult it was for you and your family to watch her decline and then at the last minute get the diagnosis that might have extended her life if it had been diagnosed earlier and treatment started. But, unfortunately this happens all too often in developing countries and in what is seen as more advanced countries like the USA.
It sounds like you were there for your mother all the way and pushed to have someone look more closely at her condition. The younger doctors who have been trained recently and have had more access to the latest in medical research are the ones who may help to improve diagnosis and early treatment in developing countries. Have you considered writing your mother's story and sending it to the hospital administration, the doctor who suspected myeloma to thank him, the hospital medical review board if there is one, the medical school where the diagnosing doctor trained, and anyplace else that could benefit from her experiences? I think that it is a good lesson on looking outside the box when what you initially see as the problem isn't improving with treatment.
Sincere condolences to you and your family in the loss of your mother. You did everything that you knew to do. She was blessed to have you as a daughter. Try not to dwell on what happened over the last 2 months of her life, but remember all of the wonderful things that she gave you during her life. I still miss my mother daily who died from an illness that they couldn't seem to understand. It has gotten easier over the last 15 years, but is still painful.
Much love,
Nancy in Philadelphia, USA
Thank you for posting your mother's experiences in her last 2 months of life. I can't imagine how difficult it was for you and your family to watch her decline and then at the last minute get the diagnosis that might have extended her life if it had been diagnosed earlier and treatment started. But, unfortunately this happens all too often in developing countries and in what is seen as more advanced countries like the USA.
It sounds like you were there for your mother all the way and pushed to have someone look more closely at her condition. The younger doctors who have been trained recently and have had more access to the latest in medical research are the ones who may help to improve diagnosis and early treatment in developing countries. Have you considered writing your mother's story and sending it to the hospital administration, the doctor who suspected myeloma to thank him, the hospital medical review board if there is one, the medical school where the diagnosing doctor trained, and anyplace else that could benefit from her experiences? I think that it is a good lesson on looking outside the box when what you initially see as the problem isn't improving with treatment.
Sincere condolences to you and your family in the loss of your mother. You did everything that you knew to do. She was blessed to have you as a daughter. Try not to dwell on what happened over the last 2 months of her life, but remember all of the wonderful things that she gave you during her life. I still miss my mother daily who died from an illness that they couldn't seem to understand. It has gotten easier over the last 15 years, but is still painful.
Much love,
Nancy in Philadelphia, USA
-
NStewart - Name: Nancy Stewart
- Who do you know with myeloma?: self
- When were you/they diagnosed?: 3/08
- Age at diagnosis: 60
Re: Multiple myeloma - The story of an African mother
Hi Ella
Your story of an African mother dying of multiple myeloma makes me realise how other people on other continents deal with this awful disease. I could tell you all about statistics, but it would not bring you peace of mind. It does matter on which continent you live on how much chance you have of living with myeloma. In England, we are well below America. I would think in Africa a lot of myeloma does not get recognised until it is too late.
The positive side can only be that would the right chemo have been available to your mother!! Plus chemo is not a very nice thing to go through.
We all have what if questions when we lose a loved one, plus we want to hold on to them as long as possible. In the end, acceptance of letting loved ones go, plus being at peace with yourself, will come.
I find since I lost my husband to multiple myeloma I cry for myself, but not for him. You do have to ask yourself would you like them here and to still be suffering. My answer always comes back no.
I hope you find your own peace as I do not think your mum would want you to dwell on the last few months of her life. Just try to remember the years before myeloma.
Your story of an African mother dying of multiple myeloma makes me realise how other people on other continents deal with this awful disease. I could tell you all about statistics, but it would not bring you peace of mind. It does matter on which continent you live on how much chance you have of living with myeloma. In England, we are well below America. I would think in Africa a lot of myeloma does not get recognised until it is too late.
The positive side can only be that would the right chemo have been available to your mother!! Plus chemo is not a very nice thing to go through.
We all have what if questions when we lose a loved one, plus we want to hold on to them as long as possible. In the end, acceptance of letting loved ones go, plus being at peace with yourself, will come.
I find since I lost my husband to multiple myeloma I cry for myself, but not for him. You do have to ask yourself would you like them here and to still be suffering. My answer always comes back no.
I hope you find your own peace as I do not think your mum would want you to dwell on the last few months of her life. Just try to remember the years before myeloma.
-
Eve
5 posts
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