The Long Road to Diagnosis

I have been nervous about writing about how I was diagnosed mainly because I feel it should have been identified earlier. The process of getting my diagnosis of lymphoma was a long one. It is not clear at what point I started getting symptoms and moved from just being run down to having lymphoma. But as the anger and feelings around getting diagnosed start to subside I feel like I can share how it happened. It is also important for people to know that sometimes you need to persevere and trust yourself when you think something else is going on. So here it goes, here is how I got diagnosed with Hodgkin’s Lymphoma.

After having my son and enjoying a year of sleep deprivation and all the joys that comes along with that, he finally started to sleep through the night. We high-fived each other with the smug thought that we were finally going to get some sleep and start to regain our energy levels. Alas, it was not meant to be.

As I returned to my job as Head of physiotherapy at a large London trust, I was struggling. My energy levels, despite getting at least 6 hours sleep a night, were in my boots. I found it difficult to concentrate and get through the day. I  knew it was a challenge being a mum and juggling work while looking after a young child but I was the girl who before having my little boy would go to work, come home and would continue to work until midnight and be up again at 6. Now I could barely get through the day, and on days I had my little man and wasn’t working, I couldn’t get through without having a rest during the day when he did.

I was also getting sick, a lot!! Every 1-2 weeks it would be something new but all run of the mill virus’ or infections; sinusitis, chest and urinary infections, gastroenteritis, colds, tonsilitis, if someone had something they would inevitably share it with me! I mean, I had 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 that pregnancy and sleep deprivation can affect your immune system but this was relentless.

The impact that this had though was that I became unreliable something that did not help me settle back into the work place after having a baby. I would return after short bouts of illness for a week or two and then be off again. In fact, in the six months I was back at work I was off with short illnesses for about half of this time. This was not me, this is not who I am and this was not how I wanted to be.

Eventually after reoccurring infections, with another bout of tonsilitis  and abdominal pain, I went to the GP.  I complained of recurrent infections, swellings in my neck area that weren’t going down even when feeling better, fatigue and shortness of breath when trying to do anything, 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. They also identified some vitamin deficiencies and all combined they could have resulted in the symptoms I was experiencing. Brilliant I thought, thankfully they have found out what’s wrong and in a months time things should start to be on the up.

But a month passed and apart from a light improvement in my concentration, I wasn’t feeling any better so I was signed off for a further two weeks and continued with the iron tablets. A repeat blood test showed no improvement in my anaemia but my other deficiencies were improving.

It was at this point while off that I hit a low point. I couldn’t see how I could continue in my job role while feeling this way. The type of job I worked in requires by its nature a lot of emotional resilience to help you to be able to support others, both patients and staff and my emotional resilience was at an all time low. My finance works abroad a lot, so it meant frequent periods of just being myself and my little man and the responsibilities that come with this. I couldn’t see how I could continue feeling this way and trying to do everything.   On returning to work from my period of sick leave I tended my resignation. A sad day as I have never not worked since the age of 16 but a necessary decision at that time none the less. I needed to focus on getting my health better and looking after my little man and once better I would return to the workplace. I was also fortunate that my skills could be put to good use assisting my finance with business elements of his company so I could keep my brain active and ticking along.

Further trips to the doctor over the coming months and still no improvement in my anaemia and I continued to get recurrent infections. I knew the lump in my neck was getting bigger and a second lump had also formed at the base of my neck. But multiple GPs assessed me and felt that it was just a lymph gland nothing to be concerned about. Oh how wrong they all were! They then began exploring whether I was in early menopause because of the hot flushes and night sweats; thankfully, and as I already knew, I wasn’t.

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 had finished work now and I just wanted to feel like myself again. I wanted to be able to take my son to the park and run around after him. I wanted to be able to go out on day visits to cool and interesting places and show him the world. But I could barely carry him to and from his nursery without feeling tired and out of breath. It’s a relentless exhaustion, that no amount of sleep can make better. It’s like a boat that’s had the wind taken out of its sail and struggles to move across the water as the weight weighs it down. I wanted to do more than just arts and crafts, baking or watching movies with my little boy. This is not the mum I wanted to be, and I felt so guilty for that.

Now as a health professional, I had done my own research around my condition and based on my background had come up with two options. Lymphoma or sarcoidosis (a rare autoimmune condition). On a follow-up appointment with GP, I asked for a chest x-ray to be done to check for sarcoidosis. The GP agreed to do the chest x-ray but informed me that it wasn’t lymphoma and it wasn’t any other cancer, because something in my bloods didn’t point to this but that it might be chronic fatigue. I pointed out however that I had an unresolving anaemia, which wasn’t improving with treatment.  (Hopefully you can see why I was maybe a bit angry). They also ran tests to check for autoimmune conditions but ultimately these came up with nothing.

Two weeks later after all further tests had been completed I returned to the GP. The x-ray had shown something around the heart area but it wasn’t clear what it was. An anomaly it was called on the report. I went for an urgent second x-ray to provide different views which also showed the same anomaly so the GP referred me to the respiratory consultant and for a CT scan.

The timing of this discovery wasn’t great as two days after the repeat chest x-ray I was off on a three-week adventure to New Zealand to see my sister and to have some fun. We had only booked it a couple of weeks earlier but with everything going on, I needed an escape and we needed to have some quality family time. And where better to get both, and some lovely winter sun, than New Zealand. So off we popped knowing that on my return I would need to see the consultant and would hopefully finally find out what was going on.

On our return, there waiting on the doormat were two letters; one for CT scan with contrast, the second was for respiratory consultant appointment three days later on 22nd December. So we made plans for someone to look after Alexander and off we went to have the CT.

The next day, with Jon at work and Alexander eating lunch next to me, the phone rings with ‘private number’ on the call screen. It was the hospital. The consultant would like you to come in today to see him, in fact as soon as possible the lady on the phone stated. No explanation why. No time to arrange childcare for Alexander. No time for my fiance to get back to come with me. No time for anyone to be able to come with me. So off we went, lunch in hand, iPad on standby to the hospital. Now, there were two reasons my appointment could have been moved; one it wasn’t good news or two the consultant wanted to take Friday before Christmas off on holiday. I found myself hoping it was the latter.

The consultant was lovely and as he sat me down and asked me about my history and what had happened up to this point, a heavy feeling came across me and I held my little boy close into me on my lap. He asked me if I suspected or knew why I was referred to him and I told him my thoughts on either having sarcoidosis or lymphoma. 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 extensive lymphadenopathy (abnormal size and shape lymph nodes, part of the immune system) in my neck, chest and abdomen and although it could be sarcoidosis, he thought it was most likely lymphoma. He had requested me to come in earlier so they could do a neck biopsy to identify which it was. They wanted to do the biopsy then and there.

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 knew something more serious was wrong with me but felt I had been dismissed up to this point. I waited for couple of hours in the waiting room for the biopsy. An ill prepared mother with only a few snacks and an iPad to entertain, my little man was a star being so very patient with mummy and entertaining patients and their relatives with his infectious charm. But every few minutes I found myself engulfing him in a hug, trying to hold and keep the emotions in and keep the thoughts about what this could mean for the future and for my little man at bay.

The neck biopsy was done and it took everything in my power while they were inserting the needle and taking the clippings to keep any pain or emotion at bay and not show my fear and pain in front of my young son. The nurses were fabulous at trying to entertain him and thankfully had digestive biscuits available to give him a little treat. This is however one of the hardest things I have ever had to do as a mother and as a patient. Not because it’s been the most painful or worst thing but because of my overwhelming need to protect my son from what was happening. I didn’t want this to become a lasting memory that he stored in his young impressionable brain. I didn’t want him to hold this memory and forever let it shape his relationship with medical professionals or hospitals. Nothing was more important.

Following the biopsy and as we celebrated a muted Christmas I knew that if I received an appointment from a respiratory consultant I had sarcoidosis but if I received an appointment with haematology I had lymphoma. A week later on 28th December 2017, I got the call. “Did you know you had a haematology appointment today?” they asked me. I did not due to Christmas post but they could still see me if we could get to the hospital by the end of the day. 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 back home and 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. And the worse case of the two options was going to come true. On 28th December 2017, at about 13.30pm I was diagnosed with lymphoma. And life as I knew it would never be quite the same again.

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