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 dragon as a meditation focus. It started as I looked at ways to stay positive after being diagnosed with a second cancer. I was fortunate to see my tumour twice, first during the cystoscopy to diagnose the cause of haematuria and then whilst they performed a TURB procedure to biopsy and stop the bleeding. I chose to have spinal anaesthesia so I could recover quicker. So getting up close and personal with my tumour I gave it a name! Tommy! I wasn’t ..read more

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 is not going to go away quickly. Immediate reaction is often is this a death sentence? It was at one time when one was diagnosed with CLL. I remember being told you will die with CLL not of it. But I would probably get an infection that my body would not be able to fight due to a compromised immune system. Since then there have been many different drugs developed . In the beginning it was FCR. However, the big pharmaceutical companies h ..read more

Our friends at Blood Cancer UK (the leading British blood cancer charity) have produced a series of video discussions and made them available on YouTube. This one is called “The truth about living with blood cancer”. Tris and Scott discuss how life has changed for them as a couple since Scott’s myeloma diagnosis. The post VIDEO: The truth about living with Myeloma, a type of Blood Cancer appeared first on Blood Cancer Uncensored ..read more

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 to take the sample to the GP. On the Monday it was a Bank Holiday so I rang 111 who got the on-call doctor at the Primary Care Centre to ring. I was told to bring a sample to the Primary Care Centre a ..read more

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 flopped over onto renal veins. At that point it was not known if it had both encased veins and was smoothing them or was just smothering them. No matter which one it would end up being, it was inoperable ..read more

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 there are Commonwealth War Graves across the UK and Europe. The standard memorials each had their own stories. So what about deaths from Covid? Sometimes people died alone without their relatives there ..read more

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 change the side effects. Somewhere along the line developed high creatinine levels and chronic kidney disease so stopped medication.  Managed to carry on working full time ti ..read more

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 range. My Primary said I worked too hard, I traveled too much, I didn’t get enough sleep. After breast cancer I had radiation pneumonitis and several rounds of pneumonia (because of undiagnosed CLL). I took ..read more

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 scheduled at your convenience. At the time of the interview, you will be asked to be at a computer with an internet connection so that the moderator can share materials for you to review. You ..read more

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 them feels so long as I go through spring each year and relive the experience of those 22 days. Today, as I mark this sixth anniversary, I realize that I have changed a lot over the year ..read more