Ragged Clown

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


Jul
14
2022

I gots to know

Callahan: I know what you’re thinking: “Did he fire six shots or only five?” Well, to tell you the truth, in all this excitement, I’ve kinda lost track myself. But being this is a .44 Magnum, the most powerful handgun in the world, and would blow your head clean off, you’ve got to ask yourself one question: ‘Do I feel lucky?’ Well, do you, punk?

[The thief gives up trying to retrieve his shotgun; Callahan picks it up and starts to walk away, lowering the hammer.]

Thief: Hey! [Callahan turns around] I gots to know…

Story so far…

I have a diffuse low-grade glioma. It’s too diffuse for surgery and too big for radiation. The only other possible treatment is chemotherapy but the kind of chemo given depends on the type of glioma. The tumour is slow-growing — I’ve probably had it for at least 5 years, maybe 10 — but most gliomas eventually transform to a higher grade, at which point they grow faster. I might be around for another 10 years with no treatment or my tumour could transform tomorrow. I can’t have treatment without a biopsy but the biopsy might say I can’t have treatment anyway.

Do I feel lucky? Well, do I?

My oncologist thinks I should have the biopsy. She thinks I might be the kind of person who just likes to know stuff. She might be right. She said biopsies are pretty safe and it’s better to know than to not know.

If my tumour has a particular mutation, then there is a pretty good chance that a particular kind of chemo — PCV — would be worth a try, though there is zero data on whether chemo-without-surgery does any good. The oncologist says that PCV should not be too hard to bear for a fit young man like myself (she might have said ‘handsome’ too, but our memories are hazy on that).

One more argument in favour of biopsy: I feel like I’m stuck in a kind of limbo where I am under the care of a surgeon but I am not going to have surgery. The oncologist won’t accept me as a patient until I have had a biopsy so my biopsy is my ticket out of limbo.

In the waiting line — Zero 7

We saw the neurosurgeon yesterday so he could talk me through the process of a biopsy. He will drill a hole in my skull and stick a needle in to grab a sample and send the sample away for testing. The risks are fairly minimal and the recovery is usually quick. When the results come back, we’ll see what to do next.

Wait in line
‘Till your time
Ticking clock
Everyone stop

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

The neurosurgeon was on good form — plenty of smiling and laughter — and he answered all my questions. He even invited a junior colleague to come join us and enjoy our banter. We shared a joke about how losing your sense of taste is not the worst thing in the world as long as the beer still tastes good.

I think I feel lucky.

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9 responses to I gots to know

Claire ATX July 14, 2022

Luck be a lady tonight!
Let’s keep this party polite
Never get out of my sight
Stick me with me baby, I’m the fella you came in with
Luck, be a lady tonight.

From Guys and Dolls, Frank Loesser

Rosa May July 14, 2022

You knows what is best for you! Probably!
Love to you and G x

John Dowling July 14, 2022

Hello Kevin.
You sound in great spirit, always a great sign.
If it helps, I try to tip the balance for success, if I need treatment that could benefit my wellbeing, I would do it while I was stronger, recovery comes much quicker the younger you are.
Serendipity can be wonderful, however you won’t find gold unless you look for it.
Bonne courage my friend
Johnboy France

Graham July 16, 2022

Hi Kevin
You will have to decide for yourself what to do including do nothing. Quality of Life today vs Quantity of Life in the Future is a balance that changes with age. Do I have a working parachute when I jump out of the aircraft?
I am less happy that your oncologist is sort of blackmailing you in not taking you on without a biopsy.

    Ragged Clown July 16, 2022

    To be fair to my oncologist, she didn’t actually say she couldn’t take me on without a biopsy and I never really asked her anyway.

    NHS policy is to assign you to a surgeon initially and then assign you to an oncologist after you have had surgery (most people with brain tumours have surgery). I am in a weird spot since I am not having surgery.

    I’d guess that, if I really wanted, I could transfer to the oncologist but there is very little that she can do for me without a biopsy anyway.

      Graham July 16, 2022

      If they want to they can assume a diagnosis- it is a bit like they were doing with your epilepsy diagnosis.
      Some centres are better than others – my Torbay oncologist told me that I was the only patient she saw annually for a
      check-up that required no treatment.
      I think some parts of NHS are more regimental than others.

  • Beverley Birleson August 4, 2022

    I enjoyed reading your blog & found it informative. The only thing I’d like to add is that PCV has been around many years now without a change in it’s direction. This is literally the only choice. There are a few options on the horizon that are hopefully going to be available soon, so search for trials that you could be included on, as you don’t want this to be your only hope

      Ragged Clown August 4, 2022

      I’ve read a few studies that say PC (PCV without vincristine) has almost all of the benefits of PCV but with far fewer side effects. Only good for oligodendroglioma though.

      TMZ is the chemo of choice for astrocytoma. It is easier to tolerate but less useful unless you have MGMT promoter methylation.

      There are practically zero drugs on trial for low-grade gliomas but a few for glioblastoma.

      The only trial that shows promise is one for a targetted therapy if you have the (rare) BRAF v600 mutation but it’s not yet available in the UK.

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