Carrie Findlay

When Carrie began experiencing neck pain and flu-like symptoms at the beginning of 2018, she took herself to the GP. However, over the next few months as Carrie’s symptoms worsened, she was repeatedly told that she simply had a virus. Eventually, Carrie’s symptoms were recognised, and she was diagnosed with chronic myeloid leukaemia (CML).

I had awoken during the night after feeling pain in my neck. Restless, I went back to sleep, but when I woke up in the morning, I had a very painful neck. It was a strange feeling that meant I was unable to move my neck from left to right; this lasted for around a week.

My concern and initial thought was that I had slept funny and I thought nothing else of it. The neck pain then eventually eased but never fully went away; there was always a dull ache in my neck and still is to this day.

By mid-February, I was now feeling extremely ill. Symptoms included aches, nausea, pain through my whole body like nothing I had ever experienced before. This felt like someone was stamping over my whole body 24/7 and was an experience I will never forget or have had ever in my life; as a kid I was never at the doctors or had any illnesses. This was the time that I wanted to go into hospital for help, but I was away at the time.

I was very concerned when I got home. I made an appointment for my GP to examine why I felt this way as the pain was so unbearable. The neck pain had also returned with vengeance.

The GP checked my chest and had a feel of my glands before advising that all I had was a cold that would go away in a few days and I should just use the normal remedies. Now, I have had a cold and a flu before, but what I was experiencing now was neither and I did say this to the GP but who questions the GP, right?

My husband and I had a holiday booked and that we had to go on due to being non-refundable. I was not up for it, but I thought some heat would be good maybe to sort out my pain. I felt so ill that I hoped the holiday would make me feel better (they always say rest and relaxation helps).

I was still feeling very ill into the first week – glands were swollen with a feeling like needles that were sticking into them – but with the heat of the holiday, I slowly and gradually felt a little bit better.

We returned home and then for the first few days I felt amazing, back to my old self. This did not last. After a few days all the unbearable pain returned. It was cold and winter, so I made a further GP appointment, but with my practice you never get the same doctor. This was beginning of March.

I was again checked over, my breathing was fine, chest was fine, but my whole body was rigid with pain and my muscles were so tight you couldn’t press on them, they were just rock hard. The GP told me it was just from the cold like everyone experiences these symptoms when in recovery.

Exhausted about explaining this is not just a cold, I was prescribed muscle relaxers, told to take them for a month, see how you get on.

I continued to take the muscle relaxers. These did nothing for the extreme pain I was in, and after a month had passed there was no change at all. I was now by this stage reaching the end of my pain threshold as it was unbearable, and the constant neck pain was just the worst. I was continuing with my full-time job without any time off and just trying not to think of the pain.

I returned to the GP in mid-April in floods of tears, as by this time I just could not deal with the pain. This was the first time I was diagnosed with something other than the cold/flu.

The GP, which was another doctor, checked my glands all over my body and had the inkling that I could possibly have glandular fever; “kissing disease” is what she called it. I had never heard of this ever in my life. I was sent for blood tests, which didn’t exactly confirm glandular fever; it confirmed I had a virus, but nothing was ever really followed up.

I was given more muscle relaxers to take, and advised the aches would go in time, it was just one of those things that takes a long time to clear up if ever. Great, I thought!

By May I was still taking the muscle relaxers and constantly still in pain whilst feeling no better. I would go to bed at night scared and worried about what was wrong with me and worry that every night I would not wake up the next day. So, my sleeping pattern now was also a mess, as everything played in my mind constantly.

In the coming months, things started to happen. I was plagued with continuous viral ear infections, and eye infections that again I had made numerous appointments for the GP (yes, all different doctors) and was just given drops to clear the issues, but they all kept returning.

I was beginning to believe I was a hypochondriac and imagining that all the things that I was feeling were just in my head. I did not really understand what was happening to my immune system.

I continued for the next few months in pain and generally feeling unwell every day, tired and being able to do hardly anything. I had gone from being someone who was quite active, to not being able to do anything within six months, and when I tried to do anything, my muscles ached or I strained them so was unable to do the things I enjoyed.

Move forward to August and September and I was still in the same situation. I had just best get on with it and deal with trying to shake off this “glandular fever” – which I was told would take years to clear as one doctor stated – and get this out of my head.

Then I had some further symptoms to add. My new symptoms were now my hair continuously hurt, not my scalp but just the general moving your hair around to wash or dry was painful. I had this for weeks and it still continues to this day, but comes and goes. I went back for another visit to the GP (guess what… another doctor) and was given some scalp medication; this made no difference at all.

Mid October, the night sweats started. At first, I thought I had a cold (as that is what I was made to believe with my various GP visits), but the sweats started very quickly. I would wake up during the night with my clothes saturated at two or three in the morning. I would have to get up and get dried and then get changed, then back to sleep. This continued for a few weeks and I returned to the GP first week in November. Now, lucky enough this doctor said the right things to me, and it felt right that I was under her care. I was then sent for more blood tests, many tests that included WBC. I waited for the results and went back for a follow-up. The results showed my white blood count had increased. Again, I was told this could be due to a virus and asked to have the repeat blood tests in three weeks.

Blood tests results again showed another increase in my white blood count. I was told to wait one more week and then have more blood samples taken. This seemed concerning but we were finally getting somewhere. I was also sent for an x-ray on my chest to make sure there were no further issues; now that was a worry.

The x-ray came back and showed shadows on my chest, which the doctor requested a full body CT scan that I was sent out to have done within the next week. I was feeling anxious now and my mind was thinking lumps.

I was contacted and asked to make an appointment to see the GP – this was one week before Christmas – to review the blood tests. At no point did I think I’d be told I had an illness or disease that would be something that would be serious, so I was relaxed but intrigued into what the blood results were.

I remember going into the GP office, where I was told my white blood count had gone from 11 to 15.2 to 20.3. This could be due to a number of reasons, so I was told not to worry. The GP advised she had spoken to Haematology at the local hospital and I could have one of the following: virus, blood disorder, or leukaemia. I was shocked to say the least at the word leukaemia. She asked if I had anyone waiting for me to help me get home, but I wasn’t expecting that word to be associated with me; I am young, vibrant and, apart from this story, never in health trouble.

So, a phone call came my way and it was from a Dr Bourantas from our local hospital haematology department. A well-mannered and caring conversation followed, stating tests results, and that the x-rays were clear. I had also had the CT scan results returned by then and, although it was initially thought what showed on the x-ray could be tumours, these were confirmed as nodules, which everyone has so at least that was one less thing to worry about which was very good and a relief.

However, I had signs of a something called chronic myeloid leukaemia (CML)… Dr Bourantas totally talked me through what CML was, how it could have happened and explained my future with CML with simplicity and made an appointment. I was shocked with the fact that I had signs of this leukaemia, but a little relieved that I wasn’t imagining for all these months serious pain, viruses, and swollen glands. I remember being at home in a bit of a daze and shock and now having to wait over the Christmas and New Year period for my haematology appointment.

My first appointment was first week in January at the Haematology clinic, same week as my birthday. This is where I met my haematologist Dr Bourantas. He is a charming and happy character, and he made me feel totally at ease from the first minute. We talked through what CML was, as I was not aware of it before.  Dr Bourantas couldn’t explain where I got it from he said it’s very difficult to say where or why you get Leukaemia.

My white blood count was now 23.2, and I was taken in two days later to have a bone marrow sample taken (surprisingly not as bad as I thought or what I had read online). We had a little waiting period to get confirmation from the bone marrow that I had the BCR-ABL gene and to confirm that I had CML from Hammersmith Hospital.

I remember back to that call from the doctor to tell me I had CML. He said, “You have CML, chronic myeloid leukaemia, but it’s okay, it is treatable, and you have your whole life ahead of you.” I was started straight away on TKI chemo meds.

Yes it was scary to be told I had leukaemia, but my haematologist made me feel that I didn’t have a ball and chain to drag around, which is sometimes what is associated with having cancer. He always said that I would get better and that I had a long life in front of me; he made me have the confidence in myself to not feel restricted and restrained by CML, but to embrace it and live life.

I feel very lucky in the fact that I was caught very early in the progression of CML and that there are TKIs available to help us, and having the support and knowledge from an amazing haematologist makes the journey a lot better.

I have been diagnosed with CML for one year and six months now. I am taking my TKI, which like all medication comes with its side effects, but it is a small price to pay for something that does such a great job. I am in major molecular remission (MMR) and, with fingers crossed, my TKIs continue to work for me and let me live the life I want to live.

I know everyone experiences things differently, but I would strongly advise if you have any concerns or symptoms that you don’t know what they are, or are making yourself worry, please go to your GP and be persistent in being properly checked over. Leukaemia is very easily missed and, looking back I now, believe there is not enough emphasis and awareness around it. It could be that you do just have a virus or something else, but it’s better to get it checked out properly.

Having CML is difficult and life changing, but you can still live your life and enjoy the same things. Yes, you may get tired more easily and there are other side effects, but if you try to keep yourself motivated and eat healthily, combined with keeping as fit as you can be with a positive attitude, I feel this goes a long way; positivity is good for the mind and soul, and don’t let CML beat you.

Malignant Diagnosis, Surely?

Leukaemia Care, as part of a Malignant Diagnosis, Surely? campaign, have launched a petition to insist that NHS England treat myelodysplastic syndromes (MDS) as a cancer in everything they do. Do you agree that MDS patients have a right to understand their illness properly? If so, sign our joint petition below.

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