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Major life events that took place leading up to my diagnosis
“Our roller coaster started with the excitement of moving into a new home with my pregnant wife, Sophie and our two children. My dad had kindly offered for us to stay with him whilst I worked on renovating our new house. Then, whilst on a family holiday, I received the heartbreaking news that my dad had sadly passed away. This was a huge shock to us as a family and bought our worlds crashing down, and is something we struggle with today.
Coming back to his place was tough, but we found comfort in the memories that we had made, especially the extra time that our children, Sophie and I spent living with him before his passing. The change in living arrangements enabled us to spend more quality time together. We were still grieving throughout the year and when upon finishing the works in our house ready to move in when something we never expected happened. We lost our little boy Louie at 36 weeks. It was tragic. This was the final straw for me. I just wanted my family and I to move into our new house so we could start to progress everything that had happened.
In October we moved into our new house and I was off work for a while after losing Louie. I was struggling myself but I couldn’t come to terms with how Sophie must be feeling. I just wanted to be there for her to help her through. Our children were also feeling the same pain and grief we had been hit with, twice, within six months. We were getting by, but we were all struggling to come to terms with what had happened. At an attempt to help distract ourselves from our pain, we picked up our puppy Wilson the day after Louie’s funeral, which looking back now, is probably one of the best things we could have done. But overall, I was generally feeling rundown, I assumed this was due to all the grief we had experienced.”
My diagnosis
“I went back to work on reduced hours in December but noticed that I still felt very run down and poorly. I thought I had a chest infection and once I’d broken up from work for Christmas, Sophie suggested that I should see if I could get some antibiotics because a few days prior, I had a fever and was sweating at night, coughing – all the symptoms of a chest infection, really.
On Christmas Eve morning, I went to an urgent care facility and explained that I had experienced some chest pains and due to my dad’s history, the surgery wanted to run a few tests like an ECG and some bloods tests which I thought nothing of. I was told I needed to go to hospital to get the tests done, by the time I arrived at the hospital the care team could tell I was really unwell so I was put on a drip to rehydrate me and given some paracetamol to reduce my temperature.
I was seen by a doctor who felt my tummy and glands and asked me lots of questions which raised my suspicions. The doctor went through a whole list of things that could be wrong with me and one of them was a type of blood cancer. I asked the doctor what the likelihood of my condition being cancer was and she replied that she couldn’t say until the results of my blood test came back, but they had explained that my white blood cell count was 17,000 – they should be between 4 and 11. The hospital advised me to come back in 4 days time as the results of my blood tests should have come back from the lab.
I left the hospital and did feel slightly better however I think that’s due to being on a drip most of the day. Although I did find myself questioning how all of this was even happening. Sophie was concerned and was convinced that after the year we’d had, only more bad news was coming our way.
We tried to enjoy Christmas as much as we could despite everything that had happened to us earlier in the year. I went back to hospital on the 29th December and I remember thinking that I would get my results and everything could soon start to get back to normal. But instead, my white blood cell count was now being recorded as 25,000, so they had increased. It was at this point that the doctor mentioned a type of leukaemia and I thought, it is going to be the worst case scenario.
After the doctor confirmed that it could be a type of leukaemia, we decided to book a last minute holiday, the doctors said it was fine to go away for the week. But the day I got back from holiday I received a phone call from my GP asking me to go in for a chat. By this point I just wanted to know what was going on so I asked what the likelihood was of my blood results showing that it’s leukaemia. My GP surgery was reluctant to tell me on the phone and said that they needed to see me for a consultation. I pretty much knew then that, I was going to be told I have leukaemia. I will never forget hearing the words, ‘Karl we have a high suspicion that you have chronic lymphocytic leukaemia.’ A week later I met with the consultant who officially confirmed my chronic lymphocytic leukaemia (CLL) diagnosis. I felt like I was sort of on a conveyor belt of horrible things happening.”
Treatment
“In terms of treatment, it was a case of Watch and Wait but I had a full head to toe examination from my GP and CT scans to check everything, to check my spleen and to check my lymph nodes. I had a camera up and a camera down, as my stomach was uncomfortable, which was a result of my spleen becoming enlarged.
I started having fortnightly blood tests to monitor my white blood cell count. My consultant wasn’t too concerned with the results, as they remained between 20,000 and 30,000. The plan was to monitor me every six months, which was good news. During this period, I continued working but took a step back from my regular duties to accommodate my appointments. After receiving the news that my white blood cell count remained stable, I increased my workload and started focusing on how to live with this condition.
However, in May, my white blood cells shot up, so my consultant decided to monitor my blood more closely with more frequent tests. Throughout the year, my white blood cell count continued to rise, recorded at 80,000 in October 2023, and in December, another test showed they had increased again to 180,000. My doctor decided that my treatment plan needed to change and that in January 2024 I will undergo chemotherapy and immunotherapy (Obzitubinab and Venetoclax).”
Living with CLL
“The biggest feeling I felt was, why has this all happened. After the year we’ve had, it just felt like nothing good was going to happen. Going forward now I’m not trying to think too far ahead. I want to reach remission and I focus on the possibilities of new treatments being developed. I do try and think as positive as possible. I want to make plans for my family and me and not hold back on doing things. I don’t want my diagnosis to rule my life, just because I’ve got cancer. I’m hoping to get back to work and then I’m going to look at life after treatment.”
Leukaemia Care would like to thank Karl for sharing his story especially in light of such significant life events.
Support services
If you or a loved one needs advice or support regarding your diagnosis, please get in touch. You can call our free helpline on 08088 010 444 and speak to one of our nurses. Alternatively, you can send a message to our team via WhatsApp on 07500 068 065 (services available Monday to Friday, 9am – 5pm).
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