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 referred to when being diagnosed – in my case I didn’t actually realise that leukaemia was a blood cancer. It was only when the disease progressed I bothered to find out. And I thought my world had come to an end! Reality is it didn’t, It changed my regular blood tests and hospital visits but I carried on as normal. Holidays, visits to family in New Zealand and cruises with my new man. Even got married again, something I had never really thought an option.

I put it down to the fact I didn’t feel ill. I carried on working for the NHS past my normal retirement age and continued to build my private practice. Fully intending to work for myself in my latter years. My disease was chronic. My decline was gradual. Yes the first two treatments were successful but stopped because of side effects. I never once thought I am going to die of this condition.

A year after I retired along came the pandemic and it was then that I realised CLL had left me extremely vulnerable . I retreated into isolation with my husband barricading ourselves from any perceived risk. For the first time my disease was restricting what I could do. I hated the isolation but threw myself into working online, something that I had no concept of prior to Covid. I developed skills and abilities I never ever contemplated. So that was a bonus! Then I acquired contracts with agencies supporting those affected by the epidemic, teachers, bereaved families and those traumatised. Work I felt had a purpose. So that evened the balance a bit. But I felt vulnerable. 

After the restrictions came off my freedom never really returned. So my grief was for loss of socialising, meeting people and seeing family , going to the cinema and concerts. Crowds were no longer an option. I developed FOMO and was jealous of those who could get their life on track. My other loss was my beloved cat Marley who I had acquired as a four year old. He lived til he was 23, but he developed cancer and died in my arms in my garden Unser the amazing care of Serenity Vet services who came to our home to dispatch him to his forever home where he was free of pain . 

Still didn’t give up hope. My little granddaughters kept me amused on FaceTime. I believed there would be a time when we could visit them again. Nothing can compensate for the joy of a physical hug and cuddle though. Another loss.

As the world returned to a new normal I was actually looking forward to a long retirement and set a date to close my private practice. August 2024. It would have been a loss because I really enjoyed my work. It kept me connected to humanity in all its guises. But I accepted I needed time for us as a Couple .

No more poignant was my colleague and dear friend losing her husband in June 2023 and my former bridesmaid and fellow college student from way back losing their son in July. It then bit me how vulnerable we all are. It also made me question my beliefs and values. I started supporting them and ensure they were given signposts to professional support that I as a friend could not give. All these friendships meant a lot to me. The dynamics of each changed when they lost their relatives, In some respects they became deeper but also so different to the previous way of being, a shift is how I describe it. I hadn’t directly lost someone but they had and it altered things, not just for term bit also me. One thing that was reinforced was that I could not bear to think of my beloved husband going through my funeral and grieving I. Full view. I discussed it with him and we both agreed that neither of us wanted the traditional funeral with people who had been close or that had t seen us in years followed by a wake. We decided that direct cremation was what we both needed. So we have that reciprocal arrangements whoever goes first. Some people may be shocked at losing the opportunity to say goodbye. Yet another loss but so very important for us both to protect each other. Still undecided what we want for our ashes- but so far we have a partial plan. I could be put with my mum and dad in the family grave. But I would rather be with the man who has unselfishly cared for me with no thought for himself. Love. So whoever goes first it is love that will be lost.

Going back to 2018 I left my job with no fuss or farewells. I had lost a colleague a year before- she died of blood cancer. She also had severe crippling arthritis. I remember being told casually by my then boss that she had died. I attended the celebration of her life. I had asked other members of our team if they would also go. But no one else did. I brought back copies of the booklet the family had compiled in remembrance of her life. I placed one in each of my colleagues in- trays. Not one person even acknowledged receiving the booklet. I had lost a dear and respected colleague but more than that I had lost respect for that team who could not even share her passing.

Since that my friends have lost a son and another lost a husband. Now that is true grief. But their loss has made me closer to them. In the same year I was diagnosed with terminal cancer. The loss there was the hugest I have experienced since losing my parents. I am experiencing a range of emotions and a roller coaster of feelings. I cannot contemplate not existing. However I want to leave a legacy. I retrained as a counsellor and psychotherapist in 1999 and my diagnosis left me having to make a decision to stop taking clients . I finished that work after having a month off. I gave the students and counsellors I supervise the names of other supervisors and told them I was not well. I gave them the choice to move on. It broke my heart. Yet actually one one did choose another supervisor and she came back to me once I was feeling better. My legacy to them is my 25 years of experience that I have passed in in our supervision sessions. Now I have been given a reprieve those relationships are continuing. It made me realise how much I valued my training and how much I would miss my work. Not like retirement. But like a premature end to the career I chose and worked so hard to find success.