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My long road to diagnosis

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04 Feb 2019

A year after giving birth, Kelly was looking forward to getting back to work and normality. But month after month of exhaustion and illnesses led her to suspect there was something the doctors were missing...

A young child and a woman embrace

After giving birth to my son and enjoying a year of sleep deprivation and all the joy that comes with it, my little man finally started to sleep through the night. My partner and I high-fived each other with the smug thought that we were finally going to get some sleep.

Alas, it was not meant to be.

As I returned to my job as Head of Physiotherapy at a London trust, I was struggling. My energy levels, despite getting at least 6 hours sleep a night, were in my boots.

I knew juggling work while looking after a young child would be challenging. But before having my little boy I’d been the girl who would go to work, come home, continue to work until midnight and be up again at 6am ready to start again. Now I could barely get through the day.

I was also getting sick, a lot. Every few weeks it would be something new. If someone had something, they would inevitably share it with me! I worked in the NHS for 15 years and NEVER had norovirus, but in space of 4 months I had it on 3 different occasions. Now I know pregnancy and sleep deprivation can affect your immune system – but this was relentless.

The first of several visits

Eventually, I went to my doctor. I complained of recurrent infections, swellings in my neck area that weren’t going down, fatigue and shortness of breath, abdominal pain, fevers and shivers and generally not feeling myself.

They did some blood tests and found out that I was anaemic. I was signed off work for a month while given a course of iron tablets to treat the anaemia. “Brilliant” I thought, “they’ve found out what’s wrong and in a months’ time things should start to be on the up”. But a month passed and I wasn’t feeling any better. 

It was at this point while off that I hit a real low point. I couldn’t see how I could continue in my job while feeling this way. By its nature the job requires a lot of emotional resilience to help you to be able to support others, and mine was at an all-time low. On returning to work from my period of sick leave I tendered my resignation.

It was a sad day as I have never been out of work since the age of 16, but a necessary decision nonetheless. I needed to focus on looking after my health and my little man, and once better I would return to the workplace.

Multiple GPs give me the all-clear

There were further trips to the doctor and still no improvement. I continued to get recurrent infections. The lump in my neck was getting bigger and a second lump had also formed at the base of my neck. Multiple GPs assessed me and told that it was just a lymph gland. Nothing to be concerned about.

After at least 9 months of feeling unwell and at least 6 months of going to the GP, I was getting to the end of my tether. I just wanted to feel like myself again. I wanted to do more than just baking or watching movies with my little boy. I wanted to be able to take my son to the park and run around after him, to take him to interesting places and show him the world. But I could barely carry him to and from his nursery. That was not the mum I wanted to be, and I felt so guilty for that.

On a follow-up appointment with my GP, I asked for a chest x-ray to be done. The GP agreed, but informed me that it wasn’t lymphoma and it wasn’t any other cancer, because nothing in my blood pointed to this. But the x-ray had shown something around the heart area and the GP referred me for a CT scan.

Days later, the phone rang from a ‘private number’. It was the hospital. “The consultant would like you to come in today to see him, as soon as possible”.

No explanation why. No time to arrange childcare for Alexander. No time for my fiance or anyone to come with me. It either wasn’t good news or the consultant wanted to take the Friday before Christmas off on holiday. I hoped it was the latter.

Holding back my emotions

As I talked about my medical history with the consultant, a heavy feeling came over me and I held my little boy close. He informed me that I had been referred under the two-week rule (urgent cancer pathway) which was news to me. The CT had found abnormal lymph nodes in my neck, chest and abdomen and he thought it was most likely lymphoma. They wanted to do the biopsy on the spot.

I tried to hold it together for the sake of my little man, but a tear ran down my cheek. Partially in anger at the fact that I had been dismissed up to this point.

Every few minutes I found myself engulfing my little man in a hug, trying not to think about the future and hold my emotions in. It took everything in my power to not show my fear and pain in front of my young son. Children at that age are so impressionable, and I didn’t want this to become a lasting memory.

Our Christmas celebrations were muted that year. A week later on 28 December 2017, I got a call from the hospital asking me to come in. We were due to take our little man to ride the Santa train and see the festival of lights at Longleat but as we made arrangements for him and set off in the car to drive to the hospital, I knew the news that I was going to receive.

For months, I had suspected it but not shared my suspicions. For months, I had started to question if it was all in my head. On 28 December 2017, at about 1.30pm I was diagnosed with lymphoma.

And life as I knew it would never be quite the same again.

This article was adapted from a longer article on Kelly's blog 'My Lymphoma'. If you'd like to read more about Kelly's experience with blood cancer visit her blog here

> Learn more about the signs and symptoms of blood cancer

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