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 was just one of the hazards of living in India. Even ended up in the government hospital because I was so poorly. Given the strongest dose of antibiotics and huge does of rehydration sachets. Never ever thought it would lead to a diagnosis of CLL. But in hindsight I had had several UTIs and tooth abscesses in the late nineties. Lost six teeth and
didn’t think anything of it all.

Returning to UK and my GP suspected all the symptoms were indicative of something going on. He said “ I think you might have leukaemia “. Was so shocked. He sent me to see one of his friends a haematologist at the local hospital. Lo and behold I was diagnosed with CLL and told to go away and just have regular blood tests. Then I didn’t even realise it was a blood cancer.

My GP said I was not going to die of it but probably with it! He explained it was a chronic illness and may not even progress. In those days it was just FCR.Now I have had Ibrutinib, acalabrutinib and currently on zanabrutinib. Still hopeful that after20 plus years CLL is truly chronic! So after having haematuria last September I was diagnosed with sarcomatoid carcinoma of the bladder- aggressive, fast growing untreatable and incurable. I guess you could call this acute. But more than that I was told I had five months to live- terminal.

I could not accept the thought of not being here anymore. I was so shocked I considered taking my life but because I loved my husband so much I couldn’t do it- despite everything I managed to get palliative radiotherapy after begging for some treatment. I still didn’t believe I was dying so researched everything and asked for a second opinion at another hospital. I saw another surgeon who told me he could remove the tumour. He did. Then against all the odds the second biopsy showed the tumour I had was not malignant and easily treated should it reoccur. Within six weeks I had gone from terminal illness to no longer having cancer. The emotional rollercoaster hit a huge high.

So what is the psychological differences between chronic and terminal diagnoses? For me having being diagnosed with CLL there was no urgency, was in watch and wait for many years. Even under treatment I was not worried about dying because there were so many different treatment options. I was never acutely ill. With the terminal diagnosis the blow was instant and the prognosis given was time limiting. Emotionally there was a huge difference. In the latter case I started to make preparations for my death, this was in a practical level. I got rid of possessions.

Made a new will, planned my after-death wishes and began to wind up my psychotherapy practice. On one level I was detached from the process and disengaged but the thought of dying never left me. Saying goodbye to my family was
the most painful. Bittersweet. Horrendous.

So what about now? I have had a reprieve for now. The Dance with death has focussed my mind on my own mortality, I am acutely aware we all die sometime- no one gets out of this world alive. Am still reeling in disbelief. However gradually it’s
sinking in that I am not imminently going to die. And the realisation I can start to live again is sinking in. All the things we haven’t done in the year since being given a terminal diagnosis now can be factored into our diaries. Slowly but surely we are planning for a future which a year ago did not exist. Gratitude that now I just have one cancer that is chronic. And chronic really is a walk in the park compared to terminal and acute. I am very pleased about that!