My name is Judith Neptial, and I am the founder of from me to you. I was raised in East London, prior to my diagnosis in July 2018, I was a part time phlebotomist and psychotherapist. I am a single mother of one and on the 31st July 2018 I was diagnosed with terminal cancer. This is my story. Initially I entered hospital to have reconstructive surgery on my bile ducts as I was born without a bile duct and had undertaken reconstructive surgery to rebuild them when I was young child. I consequently had been under the supervision of hepato-biliary consultant from a very early age. I had from time to been admitted to hospital to clear any blockages that could occasionally occur.
From around 2015 I started to have more issues with my ducts and the blockages became more consistent. During this time I had stents inserted and had my ducts ballooned in order to stop the blockages, they continued. The blockages became more frequent. I started to lose weight. I consistently complained of fatigue and weight loss to my GP and consultant. I had numerous scans all of which appeared to show nothing. In desperation in January 2018, I broke down in a consultation with my consultant. I could not go on, with the constant fatigue, stomach pains and weight loss. It was decided that he would carry out surgery to reconstruct my ducts, at no point was cancer ever mentioned.
In July 2018, I came out of the reconstructive surgery to be told that it had been a difficult surgery, due to them finding cancer. The cancer was terminal. Due to the way the cancer was positioned around my bile duct I would probably not live past the year. The histology report could not confirm the primary cause of the cancer. I was told to start a course of general chemotherapy (FOLFOX). The first round of chemo was okay. The cancer markers were positive, so positive that my team at recommended that I undertake another course of chemo straight away. I was unsure, as my body felt weakened but under their advice I went ahead. Within weeks my hair fell out, I started to become violently sick and extremely weak. I knew it was not working for me. In my next consultation I was told the cancer markers had increased, my blood pressure had soared to 200/100. I then started to talk to my peers. I found out that women from the BAME community seemed to have a more negative response to chemotherapy. I then researched the effects of chemotherapy on women from my ethnicity and found this to be a common theme.
In desperation I contacted The Christie Hospital, because up until this point in time my primary cancer had still not been diagnosed. I asked whether they could clarify what my primary cause of cancer was. At last! They confirmed it was bile duct cancer. The oncology team I was under did not seem to fully understand the intricacies of my primary condition, of being born without a bile duct and how this coincided with my diagnosis of cancer. I decided at this point to stop my chemotherapy.
Around about this time my worse nightmare happened my ducts became blocked and I was admitted to a hospital which did not specialise in my condition. In total frustration and fear I searched the internet to find an organisation in fact anyone that could help me to live. Eventually I found help, an organisation that could point me in the right direction, the relief was immense. Why did I have to search for this? Why had this information not been made readily available? When it could in fact help to save my life. I was then able to contact a senior consultant who understood my case. He then contacted me and gave me the name of two consultants who did specialise in conditions such as the one that I have. I was then nominated me for a clinical trial using immunotherapy which is currently where I am in relation to my health. I am in effect living with cancer not dieing but living.
If I had not challenged and researched my diagnosis I truly do not believe that I would be alive today. I learned the hard way that even in relation to our medical health we have to take control, we sometimes have to challenge perceptions even our own at times in order to live. Awareness, Knowledge and research can mean everything but the medical system can at times be a maze and sometimes we require help to navigate the system and peers who truly understand the issues that we have this is why From Me To You was birthed, We give to You our shared experiences of living with Cancer in the hope that you may do the same.