Ragged Clown

It's just a shadow you're seeing that he's chasing…


Hurry up and wait

The story so far:

I went to see my GP to get advice on my phantom smells on a Friday in March. She said, “I don’t know what that could be but let’s do a blood test.”

She called me half an hour later and said, “I talked to my colleague and he said you should have an MRI. I booked you in for Monday”. Uh oh!

Monday came. MRI techs were awesome. Tech calls me an hour later. “We need you to come back for another scan tomorrow.” Uh oh!

That evening, I was at the pub with my wife and friends when my GP called. “I’m sorry Mr Clown. I have bad news. You have a brain tumour. I don’t know anything else. You’ll have to wait to see a consultant to learn more.”

I’m sorry Mr Clown. I have bad news.

So far, everyone has demonstrated NHS efficiency at its finest but then I had to wait two weeks from learning I have a brain tumour to actually speaking to someone about it. That’s inhumane.

Just Waiting
Everybody’s just waiting

Could they not at least have a nurse call me and tell me what to expect? Nope. I have to wait for the very busy neurosurgeon to speak to me. He’s very busy so it takes a long time to get an appointment. I wait.

Wait in line
‘Till your time
Ticking clock
Everyone stop

Neurosurgeon says I have a glioma. It’s very big. Too big for radiation. The phantom smells are seizures. I have epilepsy. No more driving for me and I have to take these pills for ever more.

Doc says I have to have surgery but surgery doesn’t seem like a good idea to me. Doc says “Let’s get a better MRI scan and see.”

I have the MRI and then wait three weeks for the results. Results: the scan was no good so I need another scan. I wait another three weeks for the results then wait some more to see the neurosurgeon to tell me what was on the scan. I wait some more.

Motionless wheel
Nothing is real
Wasting my time
In the waiting line

Meanwhile, I have done some research. Surgery is controversial for low-grade gliomas and there’s no evidence that it does any good. I ask for a needle biopsy instead. Doc says needle biopsies are not reliable because the tumour might have different mutations in different areas. I ask for a second opinion from someone who is not a surgeon and am referred to a neuro-oncologist.

More research: Seizures are transient events but mine last all day. I try to argue my case with the surgeon. He says “No, no. You just don’t understand. These are complex partial seizures.” I argue my case some more and point out that my epilepsy pills are making no difference. Doc agrees to refer me to an epilepsy nurse.

The epilepsy nurse changes my medication and I try to persuade her that my seizures are not seizures. “No, no.” she said.

“You just don’t understand. These are partial complex seizures.”
“I don’t think so.”
“Well, they are. If these pills don’t work, we’ll increase the dosage until they do.”

Everyone’s saying different things to me
Different things to me
Everyone’s saying different things to me
Different things to me

I wait a very long time to see the oncologist. She agrees that I should not have the surgery and a biopsy would be a better idea. She also agrees that my seizures are probably not seizures and refers me to a neurologist.

Patients 1 – Doctors 0

I wait a few weeks for another appointment with the neurosurgeon and he schedules me for a biopsy. Doc says the histology results will tell me what kind of tumour I have and will be available in a couple of days. I can’t have them though until the molecular profile comes in. That might take a few weeks. It would cause me unnecessary stress to get the initial results and then have a molecular profile that might tell a different story (NARRATOR: it would not cause Kevin stress).

The surgery went very well and my surgeon was amazing. No pain and the scar was gone in a couple of weeks and now I have a titanium plate in my head. Just have to wait for the results. I’m waiting.

My scar is healing nicely.

Ten weeks later and I am still waiting. The results were in a couple of weeks ago but they thought it would be good for me to wait some more. Only one more week to go.

Ah and I’ll shout and I’ll scream
But I’d rather not have seen
And I’ll hide away for another day

The nurse, doctors and techs of the NHS have been amazing but there is something seriously broken about the way the system as a whole works.

In what world is it acceptable to wait eleven weeks for the results of a biopsy?

In The Waiting Line by Zero 7

While I am waiting for my biopsy results, I finally got to see the neurologist. I only waited four months for the appointment and then 90 minutes past my appointment time. The neurologist agreed that I don’t have epilepsy and my phantom smells are not seizures. Huh! Who could have predicted that?

Patients 2 – Doctors 0

Can I have my driving licence back please?