Chronic, acute, terminal then what!?
I cast my mind back to 2004 in India when I started with hot flushes and fainting. Then two campylobacter infections which didn’t clear up. Thought it…
Think Differently
Grief is not just because someone has died. Grief also encompasses non-death losses.
When we are diagnosed with a chronic disease such as many of the blood cancers the emotions we have can be very mixed. The word cancer is not often r…
Happy Birthday! Happy Anniversary!
A year ago I was celebrating my birthday totally oblivious of a ticking time bomb. Yes I had an enlarged spleen and my haematologist sent me for a CT …
Spiritual Thoughts
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 dr…
Build your tribe and believe in Fairytales
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 …
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 haematur…
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 a…
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 wou…
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 thr…
Covid and its Psychological Effects
Yesterday I had a therapy session, the first time since contracting Covid. I had been given the news my husband had tested positive as I returned from…
Diary of a Covid Test
Thursday Dec 15th - Freezing cold through to the bone, couldn’t get warm went to bed dressed for the Arctic. Negative Monday 19th - Hubby felt ill wi…
Tips for Living with Blood Cancer
Be grateful you are still alive Don’t sweat the small stuff! Learn to live within your constraints with JOY .... ...not sadne…
Celebrating BCAM and World CLL Day September 1st
This is a day when groups of CLL patients raise awareness of the need to recognise the effect of this chronic condition affects lives. Not just of pat…
A Complicated Web
Thoughts on what is and what isn’t CLL related. After 12 years of watch and wait I started treatment in 2017. I had Ibrutinib first and transferred to…
Reflections of Safety and Fear
This last week has been the most traumatic since forever. My husband had a cardiac ablation. He developed a pseudo aneurysm of the femoral artery whic…
Medical Market Research – love it or hate it? A bit like marmite or vegemite
Here in the UK in a masterpiece of marketing genius the makers of Marmite (similar to Vegemite) created the slogan "You either love it or hate it". In…
The effects of Covid on our life
Rewind to Mid March 2020- we were alerted to this pandemic emerging and actually chose to shield before all the myriad of letters, texts and leaflets …
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…
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…
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…
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 …
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…
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…