26/12/2022
Rare and very rare cancers account for just over half of diagnosis, yet awareness is very low. The number of people being diagnosed with rare cancers is increasing, with the age of individuals being affected decreasing.
“Mrs Kanayo MaryCaroline Ibebunjo (Nee Chukwu) fondly known to us as Mummy KK died of bile duct cancer, in September of last year. Despite her going through regular visits, health checks and test, her GP and her doctors in the local general hospital failed her by misdiagnosing her pain and condition. She was finally diagnosed in July last year after several rigorous tests but not before the family had privately arranged for a scan which revealed an 8cm tumour mass in her liver and by this time, it was too late. She died within 3 months after diagnosis without ever undergoing her cancer treatment due to her kidneys shutting down as she had jaundiced and she had developed sepsis from a procedure to stem the flow of bilirubin and now virtually every of her organ was failing. The refusal by NHS medical consultants to offer her dialysis based on policy broke our heart. I sat and listened in this meeting my mum begging for the dialysis treatment even with her faith still raised high and the clinician specialist telling her they were giving her a more dignified way to die. Sad to say our medical system failed her again and again. She was first accidentally discharged after test and diagnosis without pain medication or informing the family. We had to ring the MDT team for them to explain mum’s discharge note diagnosis and treatment plan. They failed her family too.
After her death, it became vitally important that her death and her earthly loss made a difference, so no family or friend will ever go through what we did, the heartache and the pain. Our Pastor kept encouraging us to give voice to our pain. That pain has given rise to the birth of this foundation to get more awareness out there. It is so important, this is our voice!
Bile duct cancer known as Cholangiocarcinoma affects thousands of people in the UK, but there is currently little known about this very rare cancer. For my mum, at the start, death was not simply on the cards, or on the table according to the specialists, It was all the cards, the whole table. Without a procedure called a Whipple if caught early, one of the longest and largest operations one can have since it removes your pancreas and part of your stomach, the already low survival rate of one to five years was virtually zero for this cancer. They have more elegant ways of relaying this, but death was a fairly precise outcome; it was just a case of when.
An awareness campaign could help raise the profile of this deadly cancer across the public and healthcare workers, and encourage people experiencing symptoms to seek medical attention, help improve diagnosis as well as provide advocacy for the patients and their families.
The Government has said there are no plans to run a specific public awareness campaigns on bile duct cancer. Charities which represent rarer cancers are often smaller, overlooked, and do not receive the funding and awareness that the larger cancer charities receive. In the whole of UK, AMMF is the only Cholangiocarcinoma charity. For a cancer that’s so rare and deadly, with a rising case in number, you would think there would be more but there isn’t. This must change.
Because Mummy Kk was such a loving and giving person, our family and friends have decided to honor her through the "KK Memorial Foundation". It is also in memory of everyone who has lost loved ones to cancer.
KK Memorial Foundation, is a non-profit, charitable foundation whose primary objective is to raise public awareness and funds for rarer cancers. These cancers can often be very aggressive, not diagnosed until the latter stages, and have very limited treatment options. This is why raising awareness and funds is vital.
As well, KK Memorial Foundation aims to help underprivileged children of Nigeria.
Mummy KK’s lifelong affinity for people extended into a great interest in assisting disadvantaged children and youths as could be seen by her lifelong career as a Teacher and educator.
*Vision Statement* The bifold vision and ethos of the Foundation is: “to represent all of the smaller cancer charities and support the idea of working collaboratively, to lobby the government and community to raise awareness and funds for early detection tests and further research. To provide direct and on-going assistance to African children in need, with a focus on meeting their basic nutritional, shelter and educational requirements.”
*Mission Focus*:The Foundation will look at disbursing funds to two categories of projects that fall within the above vision:
-Raising an awareness and lobbying for rare cancer early detection tests with focus on Cholangiocarcinoma, as well as supporting AMMF and Kidney Failure institutes
-Supporting children in education
– existing projects run by other reputable and charitable organisations with focus on AMMF
– projects designed and implemented by the Executive Committee of the Foundation itself. In such cases, a third party may be involved in the implementation and administration of the project.
We know that Mummy Kk is happy that even though she is in Heaven, she is still helping people and will continue to do so, as long as generous people rise up to the call to offer support for her foundation.
So Family and Friends of Mummy KK, please join us in supporting this worthy cause and keeping Mummy KK’s legacy alive. We will never forget💕
Thank you.
