bloodcanceruncensored
Blood Cancer Uncensored
Join the uncensored conversation about blood cancer – the most common cancer in children, the 5th most common cancer in adults, and the 3rd most fatal.
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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…
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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. Always a pleasure when he gives of his valuable time to hang out with us.
Hot topics again were Blood Cancer and Covid 19, Sub Cut/IVIG treatments, and health and wellness in general.
I am adding a plug in defense of Benadryl as some folks are…
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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. The purpose of the research is to account the experiences and preferences of people diagnosed with cancer in the United States.
The study will take the form of a 30-minute online. As a token of appreciation for their time, participants will…
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