How to persuade your British GP to give your teenagers COVID-19 vaccine to protect you
This is another crucial update to our “warn, test, protect and treat” four point plan to stay alive as this virus continues to rage around us and gove…
USA blood cancer patients – Monoclonal antibodies now available if you have you been exposed to COVID19 or are you at high risk of exposure. When will the UK catch up?
Regular readers will be aware that we have been speaking passive immunity for COVID19 for over a year since the USA approved Regeneron's cocktail for …
Strength in Weakness
Anyone who has a chronic illness is likely to have heard the words “keep strong!” They are normally well meaning words. And in one sense there is noth…
Help on the horizon for Polycythemia Vera with rusfertide (PTG-300) as a possible option to reduce erythrocytosis in some patients?
This sounds like something we need to keep our finger on. Looks like a huge breakthrough and we will be looking forward to the 2021 EHA Annual Congres…
Can Intravenous Vitamin C cure my blood cancer? An approach to supplements and healthy eating
I was recently asked what I thought of high dose vitamin C infusions. The lady who asked explained how frustrating it was to just watch and wait rathe…
Blood Cancer Updates – IgG and other blood testing, antibodies and biotech news
These are Barbel's recent picks from things happening in blood cancer research or for things that will help you all to gain understanding of blood can…
Ham and Cheese Quiche
This one is from allrecipes.com and adjusted by me slightly. The actual recipe is posted at the bottom of this page. The things I changed are in bold.…
Navigating the Covid-19 Vaccine Debates and Concerns of Efficacy for Blood Cancer Patients in the United States
UPDATE: The FDA has made a new decision July 31, 2021 on the use of REGENERON-COV in that some of us who are considered vulnerable to SARS-CoV-2 virus…
Four steps to save the lives of blood cancer patients from COVID-19: Warn, Test, Protect, Treat
I’m going to keep this post really simple. There’s a longer article that explains it in more detail. But I offer here a four step plan that can save o…
Free will or free speech?
Recently, I've been asked to sign a couple of petitions "demanding that the government" undertake various actions relating to cancer diagnosis and tre…
Lies about Vaccines and the Immune Deficient: Open Letter to UK Government, MHRA and APBI code of practice authority
The sad thing about this outrageous false Government communication scandal is that an opportunity was squandered to make the important point that immu…
10,000 Page views this month here at Blood Cancer Uncensored
Over just the last 30 days this site has received over 10,000 page views! This would not be possible, obviously, without you the readers. Especially t…
How to make sense of your blood test results – a CLL Society Webinar
Our friends and partners at the CLL Society has put on this excellent webinar to help you decode your blood results. Although it is targeted at CLL pa…
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…
DIY Antibody replacement – starting Subcutneous Ig instead of IVIg
For those of us with a compromised immune system, it is often advised to have infusions of Immunoglobulin to help fight infections. Three years ago wh…
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…
Starting on SCIG (the subcutaneous form of IVIG)
After over a year without my IvIG because it was deemed too risky for me to go into clinic (due to COVID19) finally it’s been possible to get on a hom…
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…
Advocating for my own care and choosing my own doctor
Back home we lived our lives. But something wasn’t right. Tiredness and lethargy took over. I hadchosen my own consultant when my GP told me I had to …
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…
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…
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…
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…
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…