Ho Ho, Oh No! Did you say blood cancer?

In the Autumn of 2003, I had an abnormal cervical smear test result, which led to an operation. When I saw my gynaecologist again, I told him that I felt so, so rough with no energy. He then sent me for a blood test.

In mid-December that same year, I went back to see him again, expecting him to tell me that I was anaemic. He said: “I have never had to tell anyone this before, but you have chronic lymphocytic leukaemia. Go back to your GP.” I hurried out the door.

I kept on saying those three words, so I did not forget them.

I could not get a GP appointment till the new year. When I looked on the internet, it suggested a 5 to 10-year prognosis. I immediately wrote out my Will and funeral music.

I was in shock and remained in my bubble till well into the new year. I sort of wanted to pull the leukaemia out of me.

I asked myself a lot, ‘why me?’

I did tell some family and friends over the phone. I regret not telling my son in person, so that he could have had support and process the news.

When I rang my sister to tell her, who lives 250 miles away, she did not say anything and changed the subject. I did not hear from her till I rang her at Easter. She has never mentioned my diagnosis.

I told other people about my diagnosis through Christmas letters and cards. One card crossed over the Atlantic with one from a friend in Los Angeles. She had been diagnosed with the same blood cancer, at the same time. We immediately reached out to each other. It has given us a very special, supportive bond over the years.

We always spend Christmas Day with my husband’s family. His mother had died of leukaemia twelve years prior. Again, my diagnosis was not mentioned.

I was going through all the different motions over Christmas, the new year and my birthday in early January. I put my familiar smiley mask on and was the ‘hostess with the mostest’.

I told work, but I could not really explain what I didn’t understand myself. Some people asked me how I was, others avoided eye contact. I could see colleagues in huddles.

It was the first time that I had sick days in the whole 15 years of working there. With hindsight, I think that open and honest communication and negotiation with my employers would have been key to understanding each other’s needs.

As I was on ‘watch and wait’ I did not need treatment, just regular check-ups. I will never forget that one of my friends offered all their redundancy money to me, so that I could get treatment immediately through private healthcare. Even though having treatment early would not have helped, I was so touched by the gesture.

I still get flashbacks of my diagnosis. I can relive it as vividly as if it were yesterday. On the anniversary of my diagnosis, I am aware of being very withdrawn and I get survivor’s guilt. But I do celebrate my anniversary in my own way.

It is a day of reflection for me and my life – I think about what I want to do and with whom.

I would say to others diagnosed over the festive period, that if you have received this life changing news, you will probably be in shock. It can be even more difficult to process the shock during the whirlwind festive period.

Try not to go searching on the internet. There is a lot of unreliable information out there. We are all unique, and research and clinical trials mean there are kinder, more targeted treatments becoming available all the time. I count myself a very lucky girl to still be on ‘watch and wait’.

Just stick to reliable, informative websites like Blood Cancer UK, join their online forum, and if you would like to talk to someone or have questions, please do contact their wonderful Support Services Team.

Most importantly, be ever so kind to yourself. I believe that open, honest, two-way communication is key, and you will find out who your real friends are.

I became a Blood Cancer UK ambassador to give something back for the support they have given me, and I feel so privileged to support others through their forum. So, please do feel free to drop in and say ‘hi’.

If you're worried about or have questions about blood cancer, the impact of coronavirus, or would like to talk through how you're feeling, please don't hesitate to contact our free and confidential Support Services Team.