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My diagnosis with non-Hodgkin lymphoma

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21 Mar 2016

Reflections on my diagnosis with non-Hodgkin lymphoma and all the symptoms and events that led up to it.

He opened his diary, glancing at me before returning his gaze to the open page, "How does 4th January sound?" He said nonchalantly. I looked confused but nodded, he continued "shall we say 9 o'clock?" That was it, the date was set.

I drove home not quite knowing what to think, should I have said something more?  Should I be behaving differently? Should I feel different?

So my blind date was set, and I had 12 days to think about the upcoming event; blind date was a fairly apt name really, as while I already knew the name of my date I had no idea what to expect, or for that matter, what to wear?!  All too soon the day arrived, it was 8.30 and I was nearly ready to go, it was all I had thought about for days what to wear; should I  wear make-up, does it matter, really?  I decided to go casual and as I was shaking so much I skipped most of the makeup! However, as always, normality prevails and I washed and styled my hair ready for the day’s events, the nerves were really beginning to build now, what would it be like, how long would I be there?.. Although in a strange way it felt like a joke almost surreal.

Overlooked symptoms

You could hardly blame me really, after all has it been a fairly long courtship, I mean I'd been chasing this day for almost two years.  It's hard to really pinpoint exactly what triggered events nothing major happened at all, but all of a sudden things seem to be different, a non-specific urine infection had sent me to the doctors and I commented that it felt different to previous infections, which I added, I had not suffered with for decades.  Then there was the severe abdominal pain that woke me in the night from a dead sleep, but paracetamol fixed that and anyway I was at "that age" apparently.

Then there were the night sweats, yuck! Any thoughts of waking up a bit hot with a damp forehead could not be further from reality, try having a shower (very hot) then throwing yourself in your pyjamas under a quilt, proper wet!  I literally had to strip, towel dry then either change the bed or sleep on a towel, which, given it was usually a 2 AM shower, was my preferred solution.  I mean there are only so many nights you can completely strip your bed, remake it then get up for work at 6 AM.

Fruitless GP visits & the fortunate referral

I was beginning to feel like a hypochondriac,  I made trip after a trip to the doctors being sent away each time with various comments like "there's nothing wrong with you", "do you like yourself?",  "perhaps you're depressed" One even asked if I'd been having women's thoughts! To this day I'm not sure what he meant!?  Symptoms ranged from 'apparent' painless migraines where I suddenly lost peripheral vision, loss of feeling in my arm, abdominal pain and weird rashes that popped up just about anywhere.  Individually probably not much but collectively they were really beginning to bother me. 

Finally I ended up pouring my heart out to yet another specialist, after being referred due to a lower backache that would not quit, combined with an apparent unusual hormone level in my blood; which incidentally turned out to be the best red herring in the world. I am forever grateful that he suggested that I went to see his friend and colleague, a hematologist, who could finally get to the bottom of whatever was going on.

CT scan and hospital admission

And so it began, as I was apparently not really that 'symptomatic', lots of reassuring words were used and the scan was arranged along with yet more bloods, I was wondering if I might start to resemble a sieve! oh how naive, this was just the beginning.  Sadly the reassuring words seemed to miss the radiographer, who felt the need to tell me after my CT scan, that my confessed fear of needles was, "the least of my worries". She was right.  A not so little lymph-node attached to my bowel had put on weight and was considerably bigger than regulation size, lovely.  A biopsy was needed, which meant an overnight stay in the clinic, great, I was hardly prepared and had not packed anything; after all everyone was telling me I was fine.

My protests of not wanting to go in an ambulance fell on deaf ears, and I walked  to the ambulance in hiking boots and a white hospital gown; which I might add I was holding onto very tightly given they have no back!   I'm sure there is a very important reason why this is but I'm convinced it's purely for abject humiliation!

Biopsy & diagnosis confirmed

So what's a biopsy? Well they needed to take a tiny sample of the node and send it away so that clever people could put it under a microscope and tell me exactly what was going on.  The trouble was the offending node could not have been in a more difficult place, so it was back to the CT scan for a guided biopsy with one of only 3 doctors qualified in the UK to perform the surgery.  The ‘surgery’ basically meant spending 45 minutes face down while somebody in another room slowly guided needle with the aid of the scanner.... To be honest not painful just weird... And having to lie still, and I mean still, has always been pretty difficult for me!

So I retired to my small little room to spend the night with a nurse who every 30 minutes checked her neat little biro circle that had been carefully drawn around a gauze which was covering my small wound, it became quite an event checking that I had not bled Beyond the biro boundary. During times of stress it is amazing how and what things affect you, this lovely nurse made a throw away comment that if there is going to be a “drama” it would be at 2.00am…as that was always the time for a drama, I did not sleep a wink before 2.30am.  

The following morning, relieved that I had escaped the 2.00am curse,… my wound had behaved and I was ready to go home, a relief really, given my current situation was a secret, and no one in my family knew of the unfolding events; a longer absence would've been noticed. 

I opened the front door relieved to be home and my eyes were drawn to a family picture staring back at me, The picture had been taken 18 months earlier, ironically on the same day I had received a letter saying a recent examination, arranged during one of my regular GP trips, has shown an enlarged spleen and lymph node, the following words seemed to jump out of the page 'query lymphoma'. 

Panicking I had called my surgery and arranged to see my GP… the letter had suggested referring me to haematology, but it was decided that there was nothing they could do that my own surgery could not…so I saw the practice nurse…a week later I was back, "It’s fine you have an excellent blood" I sighed with relief still clutching the letter, "go home and stop worrying"...... I'm sure I heard him mutter hypochondriac as I closed the doctor’s door.

But now on 23 December at 3:30 PM the results were in, my phantom nemesis had a name, Follicular non-Hodgkin's lymphoma, Grade 4B. Now the grading was (and still is) a bit of a mystery to me, but it seemed to be linked to how far the 'stuff' had progressed... And mine was in my bone marrow, a pretty major organ by all accounts. 

Read more about Wendy's experiences of non-Hodgkin lymphoma

Find out more about non-Hodgkin lymphoma


Lizzie Goates

Helen, thank you so much for this incredibly insightful blog. From horrible intense night sweats, excruciating abdominal pain to questions such ‘are you having women’s thoughts?’ (Which I will also forever wonder what is meant by this??)You’ve written a really astute blog on the difficulties of getting an initial diagnosis.  I cannot begin to imagine what you have been through and I really would like you to know we are continuing to fund research into this disease, as well as raising much needed awareness around blood cancer. Keep up the excellent writing it is a huge benefit to others.

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