bloodcanceruncensored

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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 yesterday but the political violence directed against Donald Trump  struck me as something I ought to write about, especially after witnessing a peaceful transition of power over here in the UK.  Sir Keir even evoked the Christian concept of Servant…

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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-Day, I can report I have been slowly learning to defy those definitions and cling onto hope. My identity is not merely a diseased and damaged individual.  I am still in an ongoing battle to live beyond such labels, and it is far from easy. This…

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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 haematuria. I consulted Dr Google – the red urine could be because I had eaten beetroot for dinner the night before. OK let’s go with that! Next day it was even worse so I e-mailed my haematologist who asked for a photo sample! He said if it didn’t clear up…

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"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 potential cancer shadow activity in the lower lobes of both lungs. No matter what kind, it had metastasized. Also, there was a great big mass hanging off the side of my pancreas, over my stomach and the top portion of my small intestines. It had…

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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 and friends. No one had in my lifetime experienced mass deaths to the extent of Covid. In wartime it was different. Not as immediate and raw. Telegrams were often sent to relatives saying, “missing presumed dead”. There was a glimmer of hope. Yet…

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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 would die with it not of it. Managed on W and W til 2017. Lived a normal life with no restrictions. Then started on ibrutinib. Terrible side effects, cramps, joint pains and completely fatigued all  the time, Switched to Acalabrutinib which did not…

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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 doctor. I kept taking a list of symptoms to him for over 15-years. Since my 20s I have had weird infections (respiratory, intestinal, skin), enlarged lymph nodes, severe fatigue, to list a few. My White Blood Count (WBC) was always high and out of…

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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, to understand the treatment experiences of blood cancer patients who have received or discussed CAR T therapy. If you complete the screening survey and qualify for the study, you may be asked to participate in a 30-minute interview, which would be…

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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 sleepless, tearful nights.  Or was the day that changed my life the 28 April 2017 – the day I got sick, was admitted to hospital, and remained severely unwell with pneumonia for several weeks? Both dates are forever etched in my mind.  The gap between…

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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 the empowered patient can brainstorm together with their doctor.  While there are many different treatment options available to you through your oncology team, clinical trials offer a range of different treatment options that should also be…

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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 the hot tub, I noticed I was beginning to feel unwell and took a covid test “just in case.”  A very thick black line appeared almost instantly.  I have been really very careful to reduce my risk of catching this disease as low as possible. I couldn’t…

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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 opinions on the link between socially isolating due to COVID-19 and quality of life in UK. 30GPB for participant referred who complete the study. If you enter the study, would you please say you saw this on Blood Cancer Uncensored? CONTACT Gretel…

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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 three whole years of my life. The worst thing is missing the birth of my second granddaughter and seeing her and her cousin grow into such good pals. New Zealand is a million miles away now. But more than that it’s losing contact with other family…

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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 help us and our partners better understand the real experiences of people living with different health conditions. This survey may take 10 to 15 minutes to complete. Our contact person with Health Union is Rackel Nderi. http://bit.ly/40j5M28 If you…

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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 three now grown up children, where we worked, where we worshipped at the local church, where we made lifelong friendships. It was easy to walk across the park to the sea or to cycle along the promenade. Then two years ago we moved six hours north to a…

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Remembering Tom Henry: Pharmacist, 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 champion friend Tom passed away. Let’s take a little time and remember Tom this week! Come along with me as we reminisce! Introducing Tom Henry the CLL Pharmacist ‘I want you to feel empowered to advocate for your care, to question what seems wrong…

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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 know that navigating all the terminology when first diagnosed can be tricky. A common phrase used for the chronic conditions is watch and wait or similar as the title of this article suggests. We are hoping to help cast some light on this for you who…