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 scan to check it out, routine procedure. No abnormally high blood results or swollen lymph glands. Didn’t even get the CT scan results as the time bomb I was completely unaware of exploded out of the blue! No warning, no pain. Had a fainting incident and a few hot flushes. In hindsight it was probably a warning but I didn’t feel ill.

Got up one morning at the end of August and was planning lunch with dear friends. Rasberry wee filled the loo! Wasn’t unduly worried as we had eaten beetroot the night before! Send e mail to haematologist who asked for a photo sample! Weird experience. Came back with advice- if it doesn’t clear in 5 days see your GP.

It didn’t. And it was bank holiday so rang 111, told to go to Primary Care out of hours with urine sample. Some guy looked at it and announced in the waiting room in front of everyone there was no blood so go home! Next day saw GP who did blood tests and another sample. On the following Friday got urgent call, to go and see him. He was lovely but did I needed to go to. A and E urgently.

The rest is history as they say! 18 days in hospital, cystoscopy, bladder wash and two more CT scans. Eventually they decided to operate. Given two blood transfusions then a TURB procedure. Trans urethral resection of bladder under spinal anaesthetic. Saw my tumour for the second time. Was let out the day after. Had to wait till mid October for the biopsy results. Sarcomatoid carcinoma untreatable incurable aggressive and fast growing with 5 months to live! Those word were etched in my brain forever.

 I could not believe that in 5 months I would no longer exist! Told family and friends. Then started clearing out! Gave up my client work and explained to my supervisees that they need to find a new clinical supervisor. None of them did, they wanted to stick with me! In hindsight that just spurred me in and kept me focused on life.

I made a new will. Sorted out my financial affairs, cleared out my wardrobe, and my books. Then discussed with my husband my wishes post death. No funeral. Just simple cremation with my ashes to be scattered. He was in total agreement but also in denial- it was surreal. 

After four doctors telling me there was no treatment and after hours of research I went on The attack! Gave one all my research and she disappeared to speak to her colleague who agreed to send me to see a radiologist who agreed to palliative radiotherapy. She told me it would not work but I wanted a chance. This happened over Xmas daily except weekends and bank holidays. My son and family came over with my five year old granddaughter and we struggled to make it a normal Christmas for her sake. They returned home on January 9th. Will never forget the look on my granddaughter’s face when we were saying goodbye. She asked why I looked so sad! I said because I would miss seeing her every day. Her dad managed her distress and his own thinking we would never see each other again. Words cannot express that feeling.

Gradually the fatigue and side effects of radiotherapy eased. My haematologist decided to treat my CLL with zanabrutunib, he believed my CLL was fuelling my tumour. Within six weeks my spleen had shrunk and the enlarged pelvic lymph glands had gone. He thinks zanabrunib could stop the tumour growing. I believe in him!

Fast forward to summer and my tumour is stable yet still no further treatment. My daughter, husband and four year old granddaughter visited from  New Zealand – such a delight to meet her. Yet we had a repeat of the first goodbye with my son-goodbye thinking we would never meet again. Heart rending.

All the time I believed they had got it wrong! I pressed for a second opinion from a professor and he concurred with the first diagnosis. So I insisted on a third from a different hospital- Jimmies where I get my CLL treatment. Within minutes of him reviewing my last CT scan he said that the tumour was resectable (operable) and he would take it out! Was so shocked I was speechless! Relieved doesn’t cut it. I felt vindicated!

So 12 months after the initial events I am still alive, seven months after my expected death date I am still very much alive. My dragon is working away fighting my battles and my resolve to live is stronger than ever. Still waiting for surgery but full of hope that cancer is just an interval in my life not the end of it. CLL has been a walk in the park compared with bladder cancer. My haematologist reassures me there is no way I will die soon. He has faith in his hunch. I have ultimate faith in his opinion. We are all terminal, none of us gets out of this world alive. But for now I am going nowhere celestial! 

Eternal gratitude to Tal, my America friends who have fed me research papers and my family and friends in UK and New Zealand. All in their different ways have given so much support and encouragement . Above all my wonderful husband who is constantly by my side every day.But also my fierce dragon who is protecting me for now!🐉🐲🌞💞

Now off to celebrate my birthday that I shouldn’t be alive to see!🎂🥂🍾Here’s to the next year!🤞🙏🏻