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 til 2018 then went part time. Eventually retired from NHS . As an employer they were the worst in terms of reasonable adjustments for disabilities!

So went on developing my private practice as a psychotherapist. When Covid hit I worked on Zoom with contracts with Sudden- a charity supporting people bereaved mainly from Covid, School Wellbeing supporting school staff and finally an abuse agency . Also did some pro bono work with Trauma Resource  Network using EMDR. Lovely experience with amazing colleagues who really understand trauma.Had several supervisees, student and qualified  counsellors and life was good.

All came crashing down in September 2023 when I was diagnosed with another cancer – sarcomaloid carcinoma of the bladder- aggressive fast growing and incurable! So I researched and with the help of Seymour and Annette and her husband found options! Had been told four times that I could not have any treatment and would die within five months! So I started self advocacy and even got someone to offer radiotherapy. By the time I persuaded them it had spread! Three months after diagnosis when I was told it was confined to the bladder! Asked to see a professor who researched bladder cancer but was told it was still incurable. So have just about finished radiotherapy- just two more sessions after Christmas.

My life as I knew it has come to an abrupt end. Having to arrange to give up my work, say goodbye to friends and family and prepare for the end of life care and all that entails.

Still functioning until they tell me the staging of my cancer,still fully coherent. So what does end of life look like? Haven’t a clue, still very much in the land of the living! Doing mindfulness meditation and ACT therapy- acceptance and compassion! How does one accept? No idea but one thing I do know is that Yalom’s  Existential Psychotherapy , a book that I bought at the beginning of my journey as a therapist 25 years ago is my go-to book yet again. Life is a preparation for death! We all go there eventually!  It’s inevitable. But not quite yet! I just hope it comes peacefully and with minimum suffering for my family and myself. When the end does come I will die with not of CLL. But I fear the CLL treatment has damaged my immune system so much that it allowed me to develop this new cancer. Most normal people fight these cancers off.Hindsight is wonderful. Think dying of CLL would have been preferable! 

So, no therapy can ever prepare one for this.  Have stopped seeing my therapist. I am now living life to the full, grateful for every single second I can still able to enjoy life. 

Blood Cancer is indeed the best kind of cancer but it makes us prone to other cancers what are not so good ! There are so many options now to put blood cancers into remission and or MRD. Unfortunately I drew the short straw and succumbed to a rare cancer that is not treatable successfully. But I don’t believe in the medical model. I believe the power of positive thinking can do far more than the medics. I intend to prove them wrong! Am busy training my dragon to eat this tumour! He is my source of guided meditation. 🐉🐲