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.”
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.
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.
Everyone’s saying different things to me
Different things to me
Everyone’s saying different things to me
Different things to me
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.”
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 will cause me unnecessary stress to get the initial results and then have a molecular profile tell a different story (NARRATOR: it would not cause the Ragged Clown 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.
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?
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?
So many rabbit holes! Incomprehensible!
I don’t think professionals in the health care system completely understand unless they have also had a cancer diagnosis or other life-threatening illness. The first nurse I saw for my stem cell transplant had had breast cancer 20 years earlier. Too much radiation then was causing her esophagus to tighten now and other harsh side effects. She knew what it was like from the other side. She was a life-line for me in a very scary time.
The system has so many inadequacies. It seems blind to the patient’s perspective sometimes. The “we know best” attitude is infuriating. Okay, many times they do know best, but the attitude of superiority and maintaining superiority is maddening.
With some nurses and with one doctor, I felt like it would be best just to accept that they see me as a body mostly. I changed doctors when this happened.
This emotional ordeal with a life-threatening diagnosis is unconscionable. My heart is with you.
I agree, Claire. The gulf between a doctor who will listen and a doctor who won’t is vast.
I’m hoping that a proper diagnosis will allow me to escape the world of the surgeon and enter the world of the oncologist.
At the very least I will be able to walk to the hospital with the oncology department instead of taking an hour bus ride to the hospital with the neurology department!
When I was in therapy, there was a metaphor that seemed useful. The therapist said that the two of us were trying to find our way in the dark, meaning my childhood memories. The therapist hoped to hold the flashlight on my path so I could find my way. In other words, we were walking together, not one leading the other.
That was how I felt about my nurse who had had cancer. We were walking together on my difficult path rather than she was leading me.
I am reading the book, The Beekeeper of Aleppo. I think it is an excellent book about the disconnection and despair of Syrian refugees.
This sentence reminds me of how I feel sometimes in the health care system:
“But her error, however small, reminds me that she is human, that she has limitations, and this makes me afraid.”
I’ve been thinking of you and wondering…. Now I know you’re still waiting which is truly insane. Love to all.
Waiting. Waiting. Waiting.
Kevin
We have a world-beating free health system, the envy of the world is what we are often told. The reality as you have been discovering is a system that overall is not fit for purpose. There are some excellent professionals but few if any are prepared to step up above the parapet to get action on basic problems of the system of care.
I hope you find an excellent professional who first listens to you and talks to you then as an equal and discusses. MDTs seem to be the exception rather than the rule. If run properly they seem to avoid the ego problem which is a recurring problem IMHO.
If there is a relevant clinical trial they seem to be useful as there is better monitoring and keeping to time-scales. There are Pros and Cons
Best wishes
Graham
Best wishes
Graham
There aren’t any trials for my kind of glioma and I’m probably not gonna get treatment anyway. I just want to know what I have.
Also, the oncologist won’t take me without biopsy results. I like the oncologist. She listens.
11 weeks to wait for biopsy results is just plain cruel!