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What is blood cancer? Why Uncensored? Can my blood save a life? Where can I find some hope?
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…
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…
Spiritual Thoughts
Releasing my inner dragon! This Chinese New Year is the year of the Wooden Dragon! Why am I writing about this? Because as some of you know I use a dr…
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…
Don’t Believe what you are Told!
So rewind to 25th August. Getting ready for lunch with friends, I went for a shower and wee. Blood everywhere! Apparently its medical term is haematur…
“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…
Market Research on Car T Therapy–a paid study for USA residents from Health Union
This opportunity was sent to us by our friends at Social Health Network Blood-Cancer.com is conducting a market research study on behalf of a sponsor,…
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…
What’s new in blood cancer research?
It's not surprising that patients know a lot about their own health! With an informed community, we believe that the best treatment options can arise …
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…
Paid Research Opportunity for UK residents on Social Isolation During the Covid-19 Pandemic
From our friends at Evolve Fieldwork, contact person is Gretel Urdambidelus Rodriguez. The purpose of this research is to better understand your opini…
Covid Realities – was it real??
Was it real? Three years on after the beginning of the pandemic and I am still living in what seems to be a surreal nightmare. I seem to have lost thr…
A New Survey From Our Partners at Health Union for USA Blood Cancer Patients
Health Union is conducting the in America survey to better understand the impact and management of chronic health conditions. Survey responses also he…
I Live Here Now
For thirty-four years I lived on the south coast of England, about half a mile from the sea, with my husband Nick. It was where we brought up our thre…
Remembering Tom Henry: Pharmacist, CLL Patient, Advocate, Spouse, Father, and Friend one year later
February 9th, 2022 is a day many of us involved in the friendly supportive weekly Zoom meetings will recall. The day we learned our CLL advocate champ…
Watch and Wait, Watchful Waiting, W&W, and Watch and WORRY–what does it all mean?
There are now over 100 types of blood cancer recognized by the medical world with there being three main types: leukemia, lymphoma and myeloma. We kno…
Ask the Doc 2023 event with Doctor Mustafa Allergy/Immunology from Rochester Regional Health System
We were blessed to have Dr. Shahzad Mustafa again from Rochester Regional Head of Allergy and Immunology in Rochester, NY with us on January 21st. Alw…
Happy 2023! New Research opportunity with remuneration from our friends at Global Patients for CLL patients in USA
Hot off the press from our contact Miryam at Global Patients! At Global Patients, we are conducting a new study and would really value your opinion. T…
Covid and its Psychological Effects
Yesterday I had a therapy session, the first time since contracting Covid. I had been given the news my husband had tested positive as I returned from…
Does treatment for myelodysplastic syndrome keep you away from your loved ones? A clinical trial highlighted by PatientWing
We are pleased to introduce another group who helps connect people with blood cancers to pertinent Clinical Trials https://app.patientwing.com/campaig…
Diary of a Covid Test
Thursday Dec 15th - Freezing cold through to the bone, couldn’t get warm went to bed dressed for the Arctic. Negative Monday 19th - Hubby felt ill wi…
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…
Follicular Lymphoma Paid Research Opportunity for USA offered by Ancora.ai
Participation involves two parts: Part 1: A video diary recorded over 3 days for 15 minutes per day ($100 compensation) Part 2: 1- hour virtual interv…
Acute Myeloid Leukemia paid USA study by Ancora.ai
Acute Myeloid Leukemia A few details: Participation involves two parts: Part 1: A video diary recorded over 3 days for 15 minutes per day ($100 …
Be your own best advocate!
https://www.instagram.com/fiercewithjoy/ From the moment you first hear the news about a cancer diagnosis, you instantly become the central, most impo…
Tips for Living with Blood Cancer
Be grateful you are still alive Don’t sweat the small stuff! Learn to live within your constraints with JOY .... ...not sadne…
Link to Updated FDA Fact Sheet Clarifying that Blood Cancer Patients NOT in Active Treatment are Eligible for Evusheld
Blood cancer patients who are still having difficulty getting Evusheld can download the FDA's revised Evusheld Fact Sheet for Health Providers and sen…
Evusheld: UK parliament debates our petiton
In March 2022 I started a petition on the parliament website urging the rapid role out of this life saving medicine. This week the petiton was debated…
Results of LLS Study re: T Cell Response to Covid Vaccines & Antibody Response to 3rd Shot Among Blood Cancer Patients
The Leukemia & Lymphoma Society (LLS) has published the results of its Patient Registry study measuring (i) T cell responses to the Covid mRNA vac…
Cancer Friends: Conversations With Our Community
Andrew and I are blessed to have the opportunity to share not only our cancer journey as survivor/thriver and care partner, but now we are embarking o…
Multiple Myeloma Study Opportunity from ancora.ai–American Patients Only
Our partners from ancora.ai are pleased to bring us another study titled the Multiple Myeloma patients and Caregiver CAR-T Survey Study. Our Blood Can…
Highlighting Fierce with Joy Blogger Susan Hartman during BCAM 2022
In honor of this year's Blood Cancer Awareness Month, I spoke with Susan Hartman about her cancer journey and how she has embraced her circumstances w…
What’s Happening During BCAM 2022
https://powerfulpatients.org/2022/08/18/blood-cancer-awareness-month-2022/#:~:text=September%201%2C%202022%20Congress%20designated%20September%20as%20…
Celebrating BCAM and World CLL Day September 1st
This is a day when groups of CLL patients raise awareness of the need to recognise the effect of this chronic condition affects lives. Not just of pat…
Evusheld betrayal – UK Govt still gaslighting the immune suppressed rather than protecting us
This morning the BBC are reporting that the Department of Health has ruled out "for now" buying doses of the only preventative antibody treatment agai…
Getting to Tell Our Story and Why We Do What We Do
Andrew and I were recently honored to be interviewed by Bag It (bagitcancer.org) Executive Director Mindy Griffith about our journey as two-time bloo…
You are NOT alone. Join 1000 others like you affected by blood cancer
Blood Cancer Uncensored is not just a global website. We are also a Facebook forum which has just reached its 1000th member! You are most welcome to …
Medical Care Resources for Countries of India and Turkey
We were recently contacted by a group called Clinic Spots who provides resources for individuals looking for doctors and medical care for various fiel…
Paid Research Opportunity for United Kingdom Residents from Evolve Fieldwork for Non-Hodgkin’s lymphoma patients
This time we have an opportunity from Evolve Fieldwork Limited Ltd. for a short (30-minute) survey for United Kingdom folks for 35 GBP compensation fo…
Paid Survey Offer from Global Patients for CLL/SLL Patients in USA
Thank you to Miryam González of Global Patients for sharing this paid research opportunity! Please click this link for this particular study (and send…
CLL / SLL Treatment Side Effects Roundtable Discussion with Friends
This is an excellent video presentation produced by fellow CLL patient Michele Nadeem-Baker of Patient Power for The Patient Story and also group expe…
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…
A Personal Account of Massage and CLL
Please note: this is an opinion piece, not an endorsement for any particular type of activity (see editor's note, below). After two years of lethargy …
Blood Cancer Approved Summer Activities
As summer is here now and for some of us, this is the only time we can get out and enjoy better weather, I have compiled a list of safe activities for…
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…
Compassion fatigue, the Saviour complex and Benevolent detachment
How to share one another's burdens without carrying them First posted on Adrian's Christian Blog. Whilst it does include some references to Christian…
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…
Paid Research Opportunity for United States Multiple Myeloma Patients from Ancora.ai
Ancora is looking for a diverse set of patients to participate in one or more levels of this three part study to understand the journey and to gain in…
On World Blood Cancer Day – ITN video “This is Blood Cancer”
Simon Thomas is a TV sports presenter who's wife sadly died three days after a diagnosis of blood cancer. He presents this informative and engaging pr…
VIDEO: Learning to LIVE safely with COVID – including an outdoor wedding
Catch up with Andrew Schorr's latest videos on how he and Esther are managing to enjoy life whilst still being cautious because of his two blood cance…
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…
The Passion Behind Heal Mary: A group that is taking cancer and treatment seriously and making medical trial options accessible worldwide
As spring is slowly spreading across the land, I always have hope that flowers and leaves will appear again after a long, dry winter. And it is emergi…
Discovering Entrepreneurship after Blood Cancer Treatment
I participated in a profound call with my business mentor, Damian, on Wednesday this week. Our calls are wide ranging and can seem, at least to an out…
Spring is going to be busy!
Andrew and I just passed a wonderful milestone with the marriage of our one and only daughter, Ruthie -who is sandwiched between our two sons. The wed…
A Heartfelt Tribute to Blood Cancer Champion John Soper by Grandson Preston Norman
This post was shared by Christine Soper and Preston Norman. On January 19th, my grandad, "Poppy", John Wayne Soper, departed this life. He was an unbe…
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…
UK: 1 in 22 COVID deaths are now in people with blood cancer despite shielding and antivirals. 1/63 of all Blood Cancer patients have died from COVID.
How many more deaths will it take before the government finally buys Evusheld to protect immune compromised patients, and makes it much easier to get …
Could YOU help explain the plight of blood cancer patients feeling unsafe and unable to get the treatments they want?
We want to hear your stories. Sadly we are even hearing of people who tried and failed to get preventative COVID19 treatments, or the antivirals for w…
Lots of timely CLL and Myeloma information coming in later April
While we are still in "virtual" event mode (in-person events hopefully coming soon), Patient Power is offering three FREE online events before the end…
The Evusheld Fourth Vaccine Conundrum
When I got my first dose of Evusheld on February 15th here in Western New York State, the talk about the 2nd booster was a very quiet buzz around here…
Andrew & Esther Talk About Advocacy, ASCO, and Humanitarian Efforts
There's great need among cancer patients to self-advocate for the right and best treatment, and there are great organizations out there to support you…
iNews reports on Astra Zeneca’s criticism of the UK government for not negotiating to buy Evusheld
The staggering news that the UK government has not even bothered to open negotiations with Astra Zeneca about Evusheld is covered in the iNews this mo…
Andrew Schorr’s latest video update
We are delighted to welcome to Blood Cancer Uncensored our friends Andrew and Esther Schorr as our latest authors. Today we share Andrew's latest frie…
Astra Zeneca blasts UK government’s “commercially sensitive” Evusheld excuses as 1 in 13 Brits have COVID19
Ministers continue make excuses on a regular basis that they cannot discuss any negotiations that may or may not be going on with the maker of EVUSHEL…
Reflections on Bactine and Skin Care from our friend Seymour Brown
One of the great benefits of our Blood Cancer Group and specifically the weekly Zoom chat is seeing members' personalities come out after getting to k…
My Covid Journey
Many people with blood cancer talk about belonging to a club they never wanted to join. Last week I joined another unwanted club when I tested positiv…
Sign our petition to fund Evusheld for blood cancer and other causes of immune compromise. These preventative antibodies massively reduce the risk of Covid19 hospitalisations and death
We were elated at the approval of a treatment which provides a similar preventative shield as vaccines for those who don't make their own antibodies. …
CNN investigation reveals thousands of doses of Evusheld are unused on pharmacy shelves whilst blood cancer patients are still dying of COVID19
Soon after the US Food and Drug Administration gave the green light to Evusheld, a new drug to prevent Covid-19, pharmacist Tom Henry alerted his blog…
Highlights on Multiple myeloma
This information was up to date at time of publishing. Encapsulated in this article are some good resources to which you can subscribe to get latest i…
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…