Blood Cancer Uncensored is pleased to support the international #thisisbloodcancer campaign. Please consider sharing your story of what blood cancer means to you. This can be in text or video format. Email us on bloodcanceruncensored@gmail.com for a chance to be featured on our site. Today Sue shares her story of diagnosis and treatment and the experience of living with CLL.

In writing about my CLL journey I thought I would start with a quick potted history. I was diagnosed in 2010 after a routine blood test and a couple of weeks before I lost my soul mate to pancreatic cancer. I was treated in 2014 with Bendamustine Rituxin and went into remission. Unfortunately after only eighteen months it started to come back. I started the Clarity Trial in 2016, (Ibrutinib and Venetoclax) , achieved MRD negative at the end of 2019, and came off the trial when I went down with Covid in March 2020.

They say having CLL is a rollercoaster journey and certainly there have been ups and downs. On the down side I hated Watch and Wait, chemotherapy wasn’t much fun, neither was the recurring cystitis I had during the trial. I also was very low when I relapsed after BR. Then of course there was Covid. A week in hospital, five weeks in bed at home, the DVT in my leg I ended up with and the problem with cramp that the DVT has left me with.

However there have also been many upsides to my CLL. One of the first things I did was to retire from my job as a supply teacher and make the most out of my retirement. None of us would have chosen to join the CLL Club but I have made some very good friends and met so many lovely interesting people throughout the journey. A wonderful counsellor helped me through the early days when there was less support than there is now, I had a wonderful experience at the Penny Brohn Cancer Centre before chemo, and family and friends have helped me during treatment. When I had Covid, friends kept me supplied with cakes, biscuits and pastries that kept arriving at my front door and my excellent medical team sent medicine out to me to help me. My reiki friends sent me distant healing and others friends sent me prayers. I was lucky to get on the Clarity Trial, I was lucky to survive Covid and very lucky not to be suffering from long Covid . On the plus side as well, having had Covid I have produced a very good number of antibodies following the vaccinations. Interestingly I’m taking part in the CLL-VR study (vaccine response) being carried out in Birmingham so am kept up to date with results and the studies that they are working on.

I also feel I have grown as a person. I’ve read a great deal and learnt so much. I’m very interested in complimentary therapies and nutrition. I invested in a rebounder before chemo and bounce for about twenty minutes every day while listening to music from my choir. It has a real feel good factor. Standing on a podium to tell my story at a CLL conference is something before CLL I would have never had the confidence to do. I became involved in setting up a CLL Support Group at the Christie, now the Manchester Haematology Support Group, have become a patient advocate at Leukaemia Care and also have provided support for other CLL patients by becoming a CLL buddy.

No one knows what the future holds but there are more treatments available now than when I was diagnosed. I now just try to keep as fit and well as I can with a healthy diet and exercise. Hopefully no more treatment for a good while at least!