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It started with tiredness. We have all at some point used the phrase ‘I had to drag myself out of bed this morning’. But in my case, this was very accurate. It wasn’t just that I still felt tired when I needed to get up for work, my whole body felt heavy and exhausted. It was taking so long to come round in the morning, still yawning and rubbing my eyes mid-morning. Then by 2pm my eyelids were heavy and I was exhausted again. Once home I would sit on the sofa and often fall asleep.
This was in April. By June, I made the decision to visit the GP. My GP was supportive and arranged for lots of bloods tests and for me to return to see him. I returned and he said my white cell count was slightly raised. He arranged for repeat bloods every two to three weeks. By August they hadn’t changed so I was referred to haematology. I saw haematology in October. He arranged for bloods (which I had that same afternoon) and for an ultrasound on my spleen. He said it would be six to eight weeks before I got the ultrasound done and I would see him again in eight to ten weeks to discuss results.
The following weekend I started with a cold and bad chest. Within 24 hours I felt horrendous, so weak and so poorly. I went to the GP Monday morning and was admitted to hospital with a chest infection and sinusitis. I remember feeling alarmed at this point but tried to push it to the back of my mind. I came home the following day with antibiotics and an outpatient appointment for the Friday. I was due to fly to Spain for a week the day after and was so looking forward to that holiday. The doctor gave me the all-clear to go and gave me the same antibiotics to start again if any symptoms returned. During the appointment, he said he was unhappy with my white cell count. I explained what was happening re: haematology and he told me to look for symptoms of cancers. This made me panic but all I could think about was the holiday. To add to my anxiety, he said what my white cell count was, and I knew it was higher than it had been at my last blood test.
The holiday was amazing, with stunning temperatures all week. I cherished every second of that holiday. I knew something was coming. I knew I had leukaemia. I had already been googling, even though I knew it was the worst thing in the world to do. I didn’t discuss any of this with my husband. I just soaked up the sun and made the most of it. I bought a jotter and pen and did lots of mindfulness activities. I had taken a copy of Fern Cotton’s ‘Happy’ and I read it and worked through the activities. I knew what I was doing; I knew I was mentally preparing myself for what was to come.
The activities helped my anxiety lots. I have suffered with anxiety and depression since my first diagnosis of breast cancer in January 2013 and still suffered the occasional panic attack. At the end of the holiday I wasn’t quite ready to come home; another couple of days would have been perfect!
We arrived home after midnight and went straight to bed. The following morning, we went through the post and there was a letter inviting me to attend Ward 24 at midday the following Wednesday to discuss my results. I went to work Monday, Tuesday and Wednesday morning and left at 11 to go to my appointment. The time between opening the letter and going to the appointment was like an out of body experience. I couldn’t concentrate, I couldn’t sleep.
We know the hospital extremely well; all my breast cancer treatment had been done there. But it wasn’t until we looked at the list for the lift that we realised Ward 24 was actually the chemotherapy ward. No words were needed between Hubby and I. Sitting in the waiting room was horrendous. So many memories from my breast cancer treatment came flooding back. It was like my nightmare was beginning all over again. The room we were taken into was exactly the same as the one we were taken into on 24th January 2013 down on the breast clinic ward. The colours, the pictures, the sofa and the feel of the sofa material were all too familiar. The consultant told me I had chronic myeloid leukaemia (CML). He went on to explain what it was, told me about the Philadelphia chromosome. The weird thing was, I heard the word leukaemia and was devastated, yet within five minutes was saying ‘well, it could be worse’. I was told about the advancements in drugs for CML and was told it was something you died with rather than from. My specialist nurse, Emma, spent time with us answering any questions we had. We left the hospital with an information pack and an appointment for a bone marrow biopsy two days later.
The biopsy wasn’t pleasant but had to be done. A lovely nurse held my hand and I talked nonstop to her to get through it. That day I left with my imatinib, a chemotherapy drug that I would take forever. I started taking it the day after. Reading the side effects was the most difficult bit for me. I was still taking medication for my breast cancer and suffered joint pain as a side effect of that. I had been diagnosed with arthritis in my knees, hands and neck, as well as osteoporosis. My body had been dragged through the menopause at 40 from the side effects of chemotherapy. I struggled with all this already, yet to everyone else I was a ‘survivor’. People thought I was amazing for what I had endured, successfully beating breast cancer. But to me I was still living with the aftereffects; it had never left me. Plus, mentally I had never recovered. So, reading that imatinib could cause joint pain, muscle pain and fatigue made my heart sink! And I couldn’t imagine how I was going to mentally cope with another cancer diagnosis.
I saw my nurse and went for bloods weekly to begin with. I suffered mentally. It was the ‘forever’ aspect that I couldn’t get my head around. I suffered terrible guilt from putting my children, husband, parents, family and friends through this again. Support from my specialist nurse has been amazing. I was referred for psychotherapy, which I am still having. I was also referred onto an anxiety course which I found really helpful and I have been able to access free treatments. There is a support group led by the specialist nurses every couple of months which has been positive.
The imatinib has added to my joint pain and the fatigue is hard. I haven’t worked since my diagnosis and have recently applied for ill health retirement. I am a Headteacher and there is no way I could physically or mentally do my job. That has been hard to come to terms with and has been part of a lot of my discussions with my counsellor. I take things a day at a time—it is still early days and I am trying to be kind to myself.
My three-month check was very positive. The drug is working and is reducing the percentage of leukaemia cells in my blood. That makes the side effects easier to cope with.
I am often told that I am ‘looking really well’. I have also been told that ‘the lord only gives things to those that are strong’. NOT HELPFUL. I don’t want to be strong, I’d much rather be cancer free! Oh and of course I also get the ‘you’ve beat it once before, you can do it again’ remarks.
I am lucky to have an amazing family around me, as well as great friends. Plus, I have reached out to local support groups and like being with people who ‘get’ what you’re going through. I joined ‘We can survive singers’, a choir in Barnsley which has been so uplifting and provided amazing support.
Spot Leukaemia is very important. My advice is this – you know your own body well. If something doesn’t feel right, get it checked. If you aren’t happy with the outcome, persist.