In May 2015 I had some terrible sore throats but was very unconcerned as I do have a tendency to this, especially being a primary school teacher who uses her voice a great deal! It got progressively worse and I went to my GP who tried to persuade me to take some time off, but I didn’t feel as if it warranted time off. She took some bloods and I presumed this was fairly normal. She then asked to see me 10 days later after a course of antibiotics. I thought she was just being thorough.
On returning to the doctors 10 days later, I was met with a few anomalies in my blood results and they were repeated. She also said that she thought a referral to haematology might be beneficial and said that she had made the referral. I was a little surprised and asked why, to which she responded that she just wanted things checking out. I asked her if she thought I had glandular fever as I had had it as a child and I must admit that my sore throats were pretty awful; it felt like I was swallowing over glass and my glands in my neck were enlarged. She was non-committal, but I think that I just thought it was a glandular fever problem.
On returning home that night, my letter to haematology was waiting on the door step. I was surprised but also impressed. My appointment was the next Friday at 11:45am, which worked out well as I could nip up to the hospital in my lunch break and then be back in time for PE. I convinced my husband that there was no need for him to come as it was just an over-zealous GP referring me; a waste of time him coming as there was nothing wrong.
Well, what an hour faced me! An examination by a doctor who took my history. He examined my neck and I was very aware of the lumps and bumps, but I’d had them for a while and they always popped up if I was run down. He asked if I had enlarged lymph nodes under my arm pits or groin. I said no but he then said he could feel something and asked if I could stay for blood tests. I said no as I had a PE lesson to teach, but he was persuasive and said they wouldn’t take long and the results would be instant. I complied and then was asked to go and see the consultant. I was very jokey and asked why, reminding him about PE!
On entering the new consulting room, I was faced with a sea of faces, faces I was to get to know very well: a nurse specialist, a consultant, and an auxiliary. I was stunned, and sudden realisation dawned on me that there could be something wrong.
I was examined again and asked if anyone was with me. I was scared. I was also awkward, saying I had to get back to school. However, I was direct and asked what they were looking for. No one would actually say but the words ‘non-Hodgkin lymphoma’ sprung to mind. I asked if that was their thought, but they refused to say. The next steps were a biopsy of a lymph node, and if that showed anything, a lymph node removal, and then if that showed anything, a CT scan.
I left the hospital in a daze and drove back to school. I was late for my PE lesson, but stayed till the end of the day. I was so shocked I told everyone what was going on. It was like drowning in a sea of untapped emotions. I was like a zombie and Google became my best friend and my worst enemy.
All of the tests were carried out within a three-week period. It was the summer holidays by now, so I didn’t have to take time off work, which somehow made me feel better. I was at a garden centre with a friend when the phone call came, asking me to attend an appointment with ENT the next day and asking me to make sure I took someone with me to the appointment. I felt sick but kept myself jovial and positive.
The next 18 hours dragged, but my husband came with me. The consultant welcomed me and cut right to the chase. I had a blood cancer which would need chemotherapy. It was non-Hodgkin lymphoma, which would need to be treated straight away. I would be ill for my second son’s wedding, but it was curable. He had booked an appointment at haematology the next day to discuss treatment. I was stunned, shocked, horrified, in denial. I couldn’t speak and didn’t want to talk to anyone.
Due to the quickness of the next appointment, my husband and I didn’t have a great deal of processing time. At haematology the next day, we were asked what we understood of the diagnosis. We relayed the information given but we were then met with shock number two as we had been told incorrect information; my condition was a sub condition of non-Hodgkin called chronic lymphocytic leukaemia (CLL). It was incurable, though treatable, and treatment wouldn’t commence till it was warranted, till I was ill enough, which could be many years.
Our initial response was of relief that I would be well at Josh’s wedding, but the underlying question was: what had I been told? I was told it was a curable and treatable lymphoma but now I was facing an incurable leukaemia; this still confuses and upsets me.
Watch and Wait began. It was a relief to be able to carry on as normal but a huge stress to know that you were waiting for something to happen. What was I looking for? What was the time limit? It was like treading water in a raging sea, sometimes you felt like you were drowning.
I knew a little of CLL as I had an aunt with CLL. She had had some treatment in her late 80s but was doing well. I looked up a lot on Google and used sites such as CLLSA and Leukaemia Care. I quickly grew to hate the word cancer and Macmillan. Everywhere I looked there were adverts for Macmillan and Cancer Research. I just didn’t want to belong to the club. I looked well and felt okay and just could not accept the diagnosis. I put on a very brave face but every time I looked in the mirror I was confused. How could I have cancer? I read booklets, used Google, read other people’s stories. I understood what was happening.
10 months after diagnosis, my blood picture had changed dramatically, as had my CT scans, with lymph nodes everywhere, including my lungs. After a lymph node had swelled to a huge size in my neck and I had to have an emergency appointment at haematology, my consultant prepared the way and advised that treatment might be on the cards. I worked for as long as I could, but my energy levels were dipping and by 2 o’clock I just wanted to find a hole and sleep. After an appointment in July one Tuesday, it was decided that treatment was to begin. I wanted to start ASAP, so it was decided that the Friday would be ideal. I worked on the Wednesday, cleaned the house on the Thursday and began chemo (FCR) on the Friday. Let’s get this done!
Treatment was a relief, as something active was being done. Chemo wasn’t without its ups and downs and a new vocabulary came to be, neutropenia being the bane of my life! Life became small and confining but it felt positive, as after the first round my lymph nodes had gone down substantially. It felt like a real fight but in a positive way. ‘I can do this’ was my mantra. I felt determined.
I’m now in remission and praying for the longest remission ever! I mostly feel pretty normal, although my immune system is apparently pretty battered. I am back at work and feel grateful for the treatment I have had and to have survived the journey of chemotherapy. I think about CLL all the time, but I feel like I can live again with it and enjoy life and be thankful.
Whilst treatment is over, it’s back to the old Watch and Wait story. But this time, I know what I’m watching for and waiting for. The anxiety has lifted a little, but you still worry about how long your remission will be.
An update from Bethan
“After treatment I enjoyed five years remission when I returned to work. A year ago, I found a few lumps in my neck so I was monitored closely and this spring I went downhill very quickly, suffering from dizziness, bruising and fatigue. In May of this year, my consultant agreed and confirmed that I had relapsed. My blood picture was poor with extremely low platelets, hence pretty severe bruising and HB as well as a rising White cell count. The consultant was keen to begin treatment ASAP after I had had a routine CT scan to act as a baseline for treatment. However, this then threw up another complication as the radiologist found some anomalies in my lungs which had to then be seen by a chest specialist. Treatment was delayed for 2 weeks. The chest team were again excellent and it was decided that the lung nodules were secondary to the cll and recent relapse so will be monitored throughout treatment.
Throughout the two weeks delay, my energy levels hit the floor and I felt unable to go far on my own. The dizziness stopped me from driving and it is the worst I have ever felt. Everything was zapping my energy and I couldn’t even be bothered to put any makeup on! Very quickly it was decided that I needed a couple of units of blood. This did perk me up slightly to be able function better!
I am currently eight weeks into treatment with Venetoclax and Rituximab. I am unable to work throughout the treatment but I am enjoying the summer sun as well as binge watching series on Netflix!!!
Personally she has not accessed any Leukaemia Care Services but has supported others with fundraising and is a keen follower of the charity. Looking back on her own leukaemia journey she wants to raise awareness of the signs and symptoms during blood cancer awareness month. She said “The symptoms of leukaemia are so similar to other issues especially that of menopause in women. It is also so easy to ignore the signs and put them down to other things, or even make excuses for them. Being aware of a whole picture can prompt people to go and seek advice.
Relapse symptoms have been rather different to the first time round; bruising, night sweats, anaemia which presented in the form of dizziness and fatigue.
Spot Leukaemia is an excellent way of really being aware of true stories that may support others in understanding the signs and symptoms of blood cancer.”
The most common symptoms of leukaemia are:
- Bruising or bleeding
- Repeated infections
- Fever or night sweats
- Bone or joint pain
- Shortness of breath
Are you currently experiencing any of these signs and symptoms? If so, contact your GP and ask for a blood test.
For more information on the signs and symptoms of leukaemia visit: www.spotleukaemia.org.uk
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