Take a Walk – Exercise may help fatigue in some of us
Our doctors tell us to get exercise. Our blood cancer friends tell us we need to do some walking. Well today, I went to our nearby state park where we…
Hummus made with Beet and Ricotta
I think I am going to really enjoy making this recipe that our friend Tom the CLL Pharmacist has shared with the group. It looks like my food processo…
What is MRD and what significance does it have for me–CLL treatment reflections
Minimal Residual Disease or MRD is a common term used in CLL treatment and it can be tested from bone marrow and/or blood. It is often determined by a…
THE most dangerous time for blood cancer patients as only 20% told vaccines may not work for them
The plight and high level of risk faced by the hundreds of thousands of people with blood cancer, and others who are immune compromised, has been scan…
Encouraging news with CAR T treatments in childhood cancers!
Here is some very encouraging news about CAR T therapy as an option for children with Acute Lymphocytic Leukemia (ALL) and also the multiple myelomas.…
Interesting summary of current clinical management of CLL
It's quite a difficult wade through the medical-speak, but this is an interesting summary of the state of play in respect of the management of CLL. It…
Toxic Cancer Care? What a horrible prospect!
Here's an interesting seminar for the Americans on the high cost of medical care. Those with government provided health care need not apply! https://w…
Veggies for All–Summer Grilling!
This is one I think we can all enjoy. Perhaps even the kids if we put ranch dressing on it! I think the secret to tasty grilled veggies is in the mari…
Convalescent plasma improves survival in blood cancer patients with COVID-19
We learnt recently of data that shows a man made and hence purer and stronger antibody cocktail can save lives in patients who do not make antibodies …
Chronic Myeloproliferative Neoplasms
In keeping with Blood Cancer Uncensored's overall goal of providing support for all blood cancer patients and support people, this is an attempt to pu…
A Full Plate AND Blood Cancer
When I was a child, my mother read to me a book entitled, Alexander and the Terrible, Horrible, No Good, Very Bad Day. It is a remnant fr…
It is NOW time to give monoclonal antibodies to ALL blood cancer patients who don’t respond to vaccines
This morning the RECOVERY trial reported crucial and encouraging results. It shows that the Regeneron man-made monoclonal antibodies against COVID19 s…
Treatment Diary Part 2 Encouraging Signs: Obinutuzumab and Venetoclax
Spoiler alert - it's working!! This is an unashamedly encouraging post, because that's my reality. In the third month of this year long treatment regi…
A growing family needs more leaders: thanks to Sue and Phil for stepping up!
Blood Cancer Unceonseed the website, the Facebook group and the weekly zoom call are all growing! (see the group for more details or email us) Soon we…
Living my life at 3am: an illustration of fatigue
Does this resonate with you? For many of us with blood cancer fatigue is so far from being "just tired" it is hard to explain its debilitating crushin…
Vaccinations and you (it’s not just COVID!) What vaccines should you be offered?
As blood cancer patient, what do I need to know and what vaccinations should I be offered or be seeking? Covid-19 has put vaccination front and center…
Tips for Managing Neutropenia
Recently, questions were raised about diet when diagnosed with neutropenia. This summary is a result of the need for a user friendly guide for what to…
Treatment Diary Part 1 ….. and so it begins: Venetoclax and Obinituzimab
"So it looks like it's treatment time" was the message I sent to family and close friends following my video consultation with my consultant at the en…
Four Years from diagnosis: acceptance, ongoing challenges, looking better than I feel
There is no point me retelling the story of what happened in the nineteen days between getting sick with pneumonia and the 20 May 2017, the day my dia…
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…
Video: The Blood Cancer Uncensored family on social media and Zoom
We are not just a website but an online community of people who have blood cancer or a loved one who does. Join us on our weekly Zoom (details on our …
Happy One Year Anniversary Blood Cancer Uncensored!
Today is the date that marks one year of Blood Cancer Uncensored as a website and Facebook Group and Page. Last Saturday, we held a ceremony and prese…
Funding Blood Cancer Families and Research. How to donate or get the help you need.
This article is for two groups of people. The first is those moved by the plight of those wirh blood cancer who would like to donate to help with the …
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…
Ask the Expert: It’s okay to not be okay – Listening to your body
Matt Wilson is a personal trainer and coach who has a really great understanding of the mind- body interface. He asked me to have a free flowing conve…
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.
Resources, resources, resources…
No - I'm not randomly blogging the titles of Beatles hits, (although not a bad idea...). Generally I wax lyrical about my experience of going through …
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…
Dandelion Corn Bread
There are a few things I love about spring! One is things coming back to life after a cold, barren winter, another is all the beautiful birds coming b…
Just how bad is my immune system? How immunocompromised am I?
Blood tests which predict Immune System function and what they mean Individual medical advice is required to adapt these general comments to your clin…
Sense and Sensibility
Generally, my inane ramblings have been motivated by whatever my emotions were doing on any particular day. But recently, I just haven't been able to …
New treatments in Hodgkin lymphoma
Our friends at Patient Power havd a great new video about some new developments in the treatment of one of the more aggressive types of lymphocyte blo…
Leukemia, lymphoma or both? The curious case of CLL and SLL
One type of blood cancer that seems to cause a lot of confusion has two names. For more than twenty years what was once thought to be two different diseases has been considered as one. And to make matters worse this disease is both a leukemia and a type of non Hodgkins lymphoma (NHL). No wonder it gets confusing! Some people even think the doctor told them they have four different diseases (Leukemia, Lymphoma, CLL and SLL).
Confessions of a Closet Sneezer
I admit it. The Covid pandemic has caused me to behave in ways I never would have thought possible. I snapped at a small child for sneezing near me! I…
Sporting Heroes
So today is World Cancer Day. I don't really know what that means or what it is supposed to achieve but I'm going to use the opportunity to tell you a…
The anxiety of waiting
So I guess at sometime in our lives, we've all had anticipation anxiety. You know - the apprehension you feel when waiting for information, or results…
An Easter Spread
I was going to make deviled eggs yesterday for church. I use farm fresh eggs. They just don't peel well after being boiled! And I, personally, was rea…
How Easter offers hope to suffering blood cancer patients
In this video Lynn Bailey one of the members of our Blood cancer Uncensorsd community mixes his own story of handling the shock that his own diagnosis…
Have I got the right Doctor for me? Advice on finding a real expert for a second opinion
Seeking a second opinion, when and why you might want to. Note that this is written largely from a UK perspective, and references specific UK legislat…
Playing in the Poison Ivy
On a recent Zoom chat, I was asked to give my personal update, and all I could think of was the poison ivy I'd recently contracted. Here it is, MARCH …
Blood Cancer and Physical Jerks
Oh I know what you're thinking! The first thing that popped into your head when diagnosed with leukaemia was "how will this affect my fitness regime?"…
Why and how to get antibody tested after COVID19 vaccines
Don't tell me what percentage of blood cancer patients the vaccine works for. Tell me if it has worked for me! How do I get tested?
Which test do I need? What do the results mean?
Which test do I need? What do the results mean?
The Art of Being
Finding a way through Anxiety I have a Being Chair, also known as a reading/praying/napping/eating breakfast, watching-the-world-go-by chair. It's a g…
UK shielding not over yet for blood cancer patients
This is just a short article to make the point that although the headline is that shielding "ends" on March 31 the truth is we are far from safe yet a…
Cancer Community and Social Division
As a cancer patient, I wonder sometimes if I have become more sensitive to the world around me. Speaking entirely personally, I know I have become far…
Grappling With The Fear
I feel like I've been beat up, pummeled, and bruised by this world. CLL was not the first thing that happened to me that threw me for a loop. I have h…
Hawaiian Chicken
I saw this recipe for Hawaiian Chicken on Facebook and decided to check it out! I hope you enjoy it if you try it. The vegetables are my favorite supe…
How to Bake Sour Dough Spelt Bread
I am going to show you how to become your very own baker. It is so much easier than you think! And you do not need a bread maker machine. In fact sour…
The Unseen Assailant
Finding a way through the unknown I've never been great at the unknown. I like to know where I'm sleeping, what I'm eating, what the plans are for eac…
Sour Dough Spelt Scones
Today I introduce a new section of our site. A home for awesome (=A1), heavenly, mostly healthy. and easy to cook recipes. Several of our authors plan…
People Power
Finding a way through words I'm a people person. I remember my daughter once saying in a supermarket, "Mum's made a new friend!" after I'd spent the p…
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…
Relationships and Blood Cancer
Jeremy Camp with first wife, Melissa, who died of cancer. See the movie, "I Still Believe"! &nbs…
The journey so far…
My "New Normal" really began in September 2017 when I walked, slightly dazed, out of my doctor's surgery at the end of a busy work day. Routine blood …
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…
Letters to Mom
This is more or less written for me as I cope with the grief of the loss of my mom last month. I also wanted a way to remember my childhood, and was t…
Ibrutinib and Venetoclax Together in CLL
Blood Cancer Uncensored is honoured to have been selected as a partner site to the CLL Pharmacist, and is delighted to welcome their founder Tom Henry…
Two more vaccines successful in clinical trials – working in UK, South African, and South American variants. Some data in immune compromised
Yesterday we had some more great news on the vaccine front. Since all the current vaccines work in a similar way because they use the original COVID19…
Misinformation and Blood Cancer
Blood cancer is so rare and divided into so many variants…
Dramatic early COVID19 vaccine effect in Israel: 60% reduction in infections
A dramatic plunge in positive coronavirus swab rates have been seen in the first 50,000 over 60's vaccinated in Israel. Very encouraging data has been…
Do Covid19 vaccines stop the disease spreading?
Vaccines work by preventing infections altogether or by reducing the severity of disease. But do the new COVID19 vaccines also prevent us from passing…
Are COVID-19 vaccines made from aborted babies? What is HEK293?
No babies were aborted in order to make COVID-19 vaccines. But a human cell line originating from an embryo was used (HEK293). This article briefly explains the science and ethical thinking about the vaccines.
COVID19 infection, antibodies and vaccination – video explanation
Right now 1 in 30 Londoners are infective for COVID19 and the NHS here is in crisis. What do we know about how the body fights this disease. Why do some people end up in hospital? How can a blood saturation monitor help you? What do we know about antibodies?
Why is the UK delaying the second dose of COVID19 vaccines – the evidence explained
The UK Government medical advisors have made a pragmatic decision to delay the second doses of COVID19 vaccines to up to twelve weeks. It is believed that this is better for the whole population. We examine why.
What is the evidence for the use of COVID19 vaccines?
Over the next few articles, I will answer questions about COVID19 vaccines based on their published clinical research. Today: "Do some people get COVID19 despite being vaccinated?"
How well do vaccines work in blood cancer patients? The evidence for Chronic Lymphocytic Leukemia (CLL)
How well do vaccines work in patients with blood cancer? This study looked at treated and untreated patients with CLL to assess vaccine response rates.
Volunteering for a monoclonal antibody COVID19 clinical trial
It must be stressed that this is of course still an experimental treatment, although there is clearly a lot of emerging evidence that antibodies are important in fighting COVID19. So there is a reasonable hope that recipients of this treatment like this will most likely experience at least some degree of protection from the COVID19 virus which is not dependent on their own immune system.
Top Blood Cancer Uncensored Posts of 2020
Blood Cancer Uncensored was born during the first lockdown. Many of these posts outline reliable information about COVID19 in an easy to understand style.
How prayer helped me in my blood cancer journey
This website is run by a group of authors of various faith backgrounds. And I am always on the look out for new volunteers of all faiths or none. We a…
Should Blood Cancer Patients take the COVD19 vaccine?
All I want for Christmas is a Covid19 Vaccine. Tomorrow the UK will become the first county to vaccinate members of its population with an authorised and fully-tested vaccine against Coronavirus. Considering most of us had not even heard of coronavirus a year ago this is a remarkable feat of modern science.
Finding Christmas
What a strange year 2020 has been! Prior to the beginning of this year, I believe many of us had plans, hopes, and resolutions which quickly faded as …
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…
