Chronic, acute, terminal then what!?
I cast my mind back to 2004 in India when I started with hot flushes and fainting. Then two campylobacter infections which didn’t clear up. Thought it…
Lived experience
Grief is not just because someone has died. Grief also encompasses non-death losses.
When we are diagnosed with a chronic disease such as many of the blood cancers the emotions we have can be very mixed. The word cancer is not often r…
Happy Birthday! Happy Anniversary!
A year ago I was celebrating my birthday totally oblivious of a ticking time bomb. Yes I had an enlarged spleen and my haematologist sent me for a CT …
Wes Streeting, the UK’s new Health Minister is a Cancer Survivor
This article was first published on my Patheos blog as UK Health Minister: Cancer Patient, Christian, Gay, Realist I was going to publish this yesterd…
D-Day: Defying Definition by Diagnoses Seven Years On
Seven years ago today, I was diagnosed with a form of Blood Cancer that has tried to destroy my identity and define who I am. Today, on my personal D…
Build your tribe and believe in Fairytales
When we are diagnosed with an illness that is life threatening we can feel very isolated. It is hard to admit to oneself that we have an illness that …
VIDEO: The truth about living with Myeloma, a type of Blood Cancer
Our friends at Blood Cancer UK (the leading British blood cancer charity) have produced a series of video discussions and made them available on YouTu…
“HOW LONG DO I HAVE TO LIVE?” Searching for a prognosis
I was so very ill when I was diagnosed with cancer in November 2022. At the first hospital, I was diagnosed with colon cancer along with some sort of …
Rest in peace – get your ducks in a row
In my work I have had the privilege of supporting people who have been bereaved. During the pandemic I worked with many souls who had lost relatives a…
When therapy is not enough.
In 2006 after a year in India I was diagnosed with CLL. Probably had it since1999 when I started with tooth abscesses and recurrent UTI s. Told I wou…
This is blood cancer awareness month. How to get diagnosed.
Be your own patient advocate! I was “too busy” with work and “too busy” being a caregiver to find another Primary. I kept going back to the same docto…
Six years of living with blood cancer
Today marks the day when, six years ago, my life changed forever as I was diagnosed with blood cancer. That night I experienced the first of many sle…
When Covid finally caught me
On April 21 the unthinkable and yet perhaps inevitable happened. I had worsening of my asthma and what felt like severe hay fever. After a spell in th…
Raising the Voices of Patients
Andrew and I are still active in the work that Patient Power (patientpower.info) does to help educate and empower cancer patients and their families a…
Safe Haven – when God leads you to a new peaceful place. Colchester here I come.
After a turbulent five years in many areas of my life, God has been suddenly remarkably leading me in the last few months. Following a string of God-…
How living with blood cancer humbled me and taught me to observe myself
I have noticed the older I get, the opportunity for me is to grow up too. Not grow down but up. What I mean is, be less entrenched in my strongly held…
You Have Three Brains!
Yes, it's true! I had the wonderful opportunity to speak, with Jana my partner and wife, with the Dream Factory Community, founded and lead by Nancy C…
A Complicated Web
Thoughts on what is and what isn’t CLL related. After 12 years of watch and wait I started treatment in 2017. I had Ibrutinib first and transferred to…
ASCO Debrief: It’s All About Your Genetic Markers, and More
After a couple of COVID years of virtual gathering, Andrew and I were able to attend the American Society of Clinical Oncology (ASCO) annual meeting i…
What to Look for After “Watch and Wait” for CLL Patients
Andrew and I have been through "watch and wait together" and he's got a few words of experience for those who want to know what the potential signs to…
CML: I am the world’s longest living Gleevec, TKI, and Kinase Inhibitor survivor
April 12 2022 was my 65th Birthday! I Really Did Beat Those 1995 Terminal Cancer Odds! I celebrate a milestone 65th birthday, after being diagnosed wi…
Five years of living with blood cancer uncertainty: No longer desolate. The battle between hope and reality
Another year has passed. Today is the anniversary, not of my actual diagnosis with blood cancer (that came 22 long days later), but rather the day I b…
Reflections of Safety and Fear
This last week has been the most traumatic since forever. My husband had a cardiac ablation. He developed a pseudo aneurysm of the femoral artery whic…
Follow up to my first post and the situation in Ukraine
After writing my first post for the Blood Cancer Uncensored website group, I just had to decompress and get out of the house and get fresh air- I am s…
The Hawaiian Prayer for Forgiveness – Ho’oponopono
Many thanks to this powerful and profound community, and especially to Adrian Warnock, for allowing me to be a member and share my thoughts. Adrian re…
Reflections on the loss of Tom Henry, everyone’s friend
I am really saddened by our loss of Tom. I think of him as "every-man's friend." He was so personable. With so many treatments today for CLL/SLL, I fi…
Rest in Peace. Tom Henry, The CLL Pharmacist and Patient
I am sorry to report the loss of one of our beloved authors here at blood cancer uncensored, and a regular attender of our weekly zoom call. Tom was a…
The dreaded cancer diagnosis. My Non Hodgkins Lymphoma story
When I was diagnosed in 2013, I was devastated beyond anything I could’ve imagined. My future just disappeared. I didn’t feel well, I was losing weigh…
Finding myself and becoming friends with my blood despite Essential Thrombocythemia (ET) and Myelofibrosis (MF) #ThisIsBloodCancer
Here is Debra Kay Patella’s story. She started out with Essential Thrombocythemia (ET) and recently morphed into Myelofibrosis (MF) both…
Diagnosed after looking at my own blood down a microscope – #ThisIsBloodCancer
My cancer story begins in the year 2000 on a sunny day in May. I was in nursing school, in a blood module, looking deep into a slide of my own blood c…
Jenni talks about her AML diagnosis, treatment and recovery: #ThisIsBloodCancer Interview
In this video I'm interviewed by Adrian Warnock. We talk about my experience of being diagnosed with Acute Myeloid Leukaemia at age 33, including my t…
Cancer free after 107 days of aggressive treatment for AML Nathaniel Nabena rang the bell: #ThisIsBloodCancer
Thank you to all of our readers who supported the campaign to raise the funding needed for Nathaniel. Blood cancer can be very brutal at times. But th…
The New Big Picture: #thisisbloodcancer
Piecing your life back together after a cancer diagnosis. Blood Cancer Uncensored is pleased to support the international #thisisbloodcancer campaign.…
Being treated for Acute Myeloid Leukemia during the COVID19 pandemic
Today Blood Cancer Uncensored is delighted to introduce our newest author, writer and "blood cancer recoverer", Jenni Elbourne. Today we share some sa…
How do you recover from an acute and aggressive blood cancer?
Let’s see how this goes then! Hi, welcome, thanks for coming, I’m El and I’m here to share my cancer story, my recovery and all the bits in betw…
Preparing for a Stem Cell Transplant
This is a video that should help anyone preparing for a stem cell transplant or any other scary treatment for their blood cancer. In it Adrian is chat…
Nathaniel Nabena stem cell transplant now funded!
We did it! Nathaniel's stem cell has today been fully funded. The GoFundMe page has hit over £200,000! It has been an amazing day of generosity. The G…
Lots of Nathaniel Nabena media coverage £40,000 raised. £160,000 to go
⭐️⭐️⭐️ Thank you to The Mirror for this amazing photos of our boy Nathaniel. Plesee keep visiting and sharin…
Adrian interviews father of 9 year old AML patient with 10 days to save Nathaniel Nabena
It has been a huge honor to recently get to know a member of our Facebook Blood Cancer Uncensored Facebook communty who is also sharing his story here…
The Mirror campaigns to help 9 year old blood cancer patient. Ten days to save Nathaniel Nabena
We have just days to find the funds to save our boy's life. Meanwhile Nathaniel is doing remarkably well. Lewis Hamilton is an inspiration to our boy, and it was amazing to spend a normal day watching Lewis Hamilton race in Formula 1 and attend our online church.
Initial GOSH chemotherapy diary for 9 year old AML patient Nathaniel Nabena. Treated thanks to donations
A huge THANK YOU to each and every one of you who have donated, commented, prayed.... without you, Nathaniel wouldn't be where he is now!26 APRIL 2021…
Escalation without connection
Following previous dental issues I started with urinary tract infections (UTI). Just put it down to age – the menopause does strange things to our wat…
From diagnosis till now: Progression
After a very quiet period I had started succumbing to minor infections- chest, mouth and urinary tract. Nothing major. My GP had instructed me to ring…
The journey from diagnosis to now – initial reactions
For a few months I hadn’t felt 100 percent. I had put it down to returning from a year in India. On the whole I had a very happy healthy and relaxed t…
Is yours bigger than mine?
Comparing size is not helpful. Ok - so we all worked out pretty early in our cancer journey that this particular life experience was unlikely to featu…
How can patients and their partners or carers best approach a blood cancer diagnosis together
The challenges, the pitfalls, the lessons learnt from over 20 years of a personal journey and learning from others through her work Patient Power Join…
When the Doctor Becomes the Patient – A Blood Cancer Journey
Some people find it is a bit strange when a doctor is the one who is sick. In this 30 min talk I explain what it was like for me, and share a few less…
Nathaniel’s health story and trip to the UK where he got diagnosed with AML
A BRIEF HISTORY OF NATHANIEL NABENA'S JOURNEY FROM AFRICA TO LONDON Nathaniel was a bright young boy growing up in Nigeria. He was doing well at schoo…
FCR Diary – Cycle 4 to 6 and my reflections
This post concludes my FCR chemotherapy treatment diary from two years ago. It is a warts and all story, and if you decide to read it please re…
FCR Diary – Home at last and Cycle Three
This is a continuation of my FCR diary from two years ago. If you haven't read the previous articles here they are: The Day Leukaemia Changed My Lif…
FCR diary – Cycle 2 as an Inpatient
Today we continue publishing my two year old treatment diary. Please remember these posts come with a health warning. My experience will not be your e…
FCR Treatment Diary – Gratefulness during Cycle One
Two years ago this week I started chemotherapy as part of the FLAIR trial. Here I share my diary from that time. Please turn away if you are the sort …
FCR Chemotherapy diary – Treatment Looms
A friendly warning message As I explained yesterday, I am two years out this week from starting FCR chemotherapy. Spoiler alert: the treatment worked …
Two years ago I started FCR Chemotherapy
This week marks the two year anniversary of me starting FCR chemotherapy. The FCR stands for Fludarabine, Cyclophosphamide and Rituximab. This is stil…
Why “remission” can feel like a crushing blow
I found finishing chemo and being told I was in remission the most difficult time emotionally. It was worse than the initial diagnosis time. Worse than actually going through chemo. Worse than being in hospital with life threatening infections.
Interview with Non-Hodgkin’s Lymphoma Surivor Sharon Edwards
Told by doctors she was going to die, Sharon Edwards has survived ten years following a diagnosis of high grade Non-Hodgkin's Lymphoma. Her type of DLBL was aggressive, and needed aggressive treatment. Sharon shares her experiences with us in this interview.
Facing your giant
There are things in life that have no apparent way out. All of the therapists on the planet, no matter how hard they try to solve the problems, cannot. We all need help. We need a Savior bigger than the giant.
Adrian’s First Walk in over Ten Weeks Shielding
So following yesterday’s change to the advice (and it was always only advice!) we decided to have a go at walking out. It was a bit scary. But we deci…
Super Survivor Andrew Schorr beat two blood cancers and is still fighting for patients
Grabbed some time with Andrew Schorr from Patient Power. Was great to hear about how he was one of the first cohort of patients to be treated with FCR…
Why Uncensored?
Some people have asked how we came up with the title for this site. The first two words are obvious since we are talking about blood cancer it makes s…
The Blood and the brain
In this interview with well known Christian pastor Matt Chandler, I explore his story and the two of us reflect on the common experience of facing up …