It all began one evening just after I had tucked my son into bed and was heading to bed with our 4-week old daughter, ready to nurse her for the umpteenth time to try to shift my mastitis. My husband strode out of the bathroom and presented me with his upper thigh; “does this look normal?”. “No” was my swift and direct response to his question about the golf-ball sized protrusion, followed by “you should definitely get that looked at”.
The GP referred him urgently to the hospital, suspecting an inguinal hernia, which apparently can be quite serious. Once he had an ultrasound it became clear it was a swollen lymph node. Quite swiftly it was decided that the best course of action was to surgically remove it – there and then and under local anesthetic, which they did – and not very delicately.
In the days and weeks afterwards, including over Christmas, he suffered horribly from Lymphedema and nerve damage. Finally, in the New Year, the histology results came back – “Negative for Cancer; Reactive Lymph node”.
Phew – we were relieved, or at least we should have been.
I didn’t feel relieved. I felt restless. The phrase “Reactive Lymph node” kept running through my mind. Why was it reactive? What was it reacting to?
I have a PhD in immunology, and this wasn’t making sense. Why were the doctors not asking questions? Rob had had no signs of infection. No illness, no injury, cut or abrasion – nothing to explain a “Reactive Lymph node”. When we raised these questions, we were told that “in the UK we practice evidence-based medicine” – i.e. doctors don’t go hunting for disease, they wait until it presents itself. In general I think that evidence-based medicine is all well and good, unless the presentation of disease is sat in a jar of formaldehyde in the hospital basement.
A month or so later a lymph node in Rob’s neck, near his collarbone, swelled up. It was a weekend and I was fed up with the lack of action surrounding Rob’s health. This was “evidence” and I was not going to let this one go.
I spent the weekend researching. As I mentioned, I have a biology-based PhD – I am used to using search engines to find relevant scientific and medical research. I am also able to read, interpret and assimilate the information – a skill set I never dreamed I’d use for my husband’s health.
By Sunday lunchtime I had “diagnosed” my husband with Lymphoma and/or a large abdominal tumour, probably metastasized.
I didn’t sleep that night. I knew. I was the only person in the whole world who knew how ill my husband really was.
Fear set in.
First thing Monday morning I booked the earliest doctor’s appointment, dropped my son off at a friend’s house and drove Rob and our daughter to the surgery. In the doctor’s office I sat down, put Sofia on my boob and resolved not to leave until we were given a viable course of action.
Luckily, our GP is a very sensible and intelligent man. I am sure he could detect my fear. He was also perceptive enough to detect the choice phrases and medical terms (that I had memorized the day before) I was using to alert his attention to the seriousness of the situation, without terrifying Rob.
Rob was put on the Cancer-query pathway. In NHS terms this means you get to see a Consultant Oncologist within two weeks. I left the GP’s appointment relieved – thankful that I had been listened to, taken seriously and that we had a way forward. I think Rob was a bit numb.
However, my feeling of relief was short-lived.
Two weeks is a hell of a long time when you know your husband has Cancer, but you have no idea of the severity, the spread or the prognosis. Family life continued, though sleep was pretty elusive.
The day finally arrived.
Just as Sofia filled her nappy we were called through to the oncologist’s office. I handed her to my Mum who would join us on hospital visits as our mobile babysitter so I could continue to nurse my daughter through the delays and unpredictability of the NHS, while being child-free for the important bits.
Ridiculously, upon reflection, we had built this appointment up to be the one where we would be told what was wrong with my husband – essentially I was expecting a diagnosis, or at least a preliminary one. I mean, I had diagnosed him from the literature, surely to an expert in this field it would be obvious?
After taking Rob’s medical history again (notes do not get passed on or if they do, they do not get read), the oncologist examined Rob. By “examined” I mean he felt his glands in his neck in much the same manner your GP does when you have a common cold.
That was it.
He then declared Rob Cancer-free.
Rob was good to go. He had just got the “all clear” from the Consultant Oncologist, who also happened to be the Head of the Department. It was the news he had been waiting for. He was not dying of Cancer!
I, on the other hand, was furious. How could he feel his glands and declare him Cancer-free? My eyes stung with tears of frustration and I did not get up to leave.
I ran through every single symptom – every symptom, that from my literature search indicated Cancer – and not only that, but metastasized Cancer. Despite this, the oncologist told me “none of those symptoms explicitly indicate Cancer”.
My response? “None of them rule it out”
Poor Rob. He so desperately wanted to believe the oncologist – after all he was the expert and he was saying “infection”. I just couldn’t let that happen, I knew he did not have an infection – tempting theory, but it just did not fit. I trusted my research. I was standing my ground.
“My wife has a PhD in immunology”, Rob said by way of explanation for my insistent questioning, which was being met with some bewilderment.
We went round the loop of the infection argument again. At each point I countered with a reason why it was not an infection – no fever, no illness, it first presented months ago, his visits to the tropics didn’t fit the timeline, no scratches, no abrasions, no sores… The list went on. Again, I resolved not to leave until we had a viable way forward.
We were at loggerheads, so I concluded with this:
“You cannot rule out Cancer without conducting a single diagnostic test.”
On that point, there was no room to argue. Though the honest, and somewhat defeatist, response from the oncologist was “I don’t know what tests to request”.
No problem – I have a list! The top of which was a fine needle aspiration/biopsy of his swollen supraclavicular lymph node (the one in his neck). Add in some blood work and a CT scan and we’re good to go!
Of course nothing is quite that quick and simple – his immediate response was that the ENT (Ear, Nose and Throat) oncologist had been on holiday and was backed-up for weeks. But, he booked blood work and an x-ray and set the wheels in motion for more specific diagnostic tests. It was a way forward at least, even if it meant more waiting.
The next few weeks were fraught with uncertainty, confusion, frustration and fear.
Continue reading this story HERE
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