Low grade limbo

“So, let’s start with work,” says the kind man behind the desk. “Are you able to work or not?”

“Well, yes, kind of… only, not always,” I reply. “Sometimes. It depends.”

“Ah,” he replies. “For the benefits office, there is no middle ground: you can either work, or you can’t work.”

Macmillan Cancer Support have hooked me up with one of their benefits advisors. It’s a standard session to assess me post-diagnosis, to ensure cancer patients get the help – financial or otherwise – that they need.

Together, we were trying to define my working position in language that chimes with the official definitions. I’m self-employed, but often can’t work because of fatigue, or poor mental health, and I only work part-time anyway (through choice) because of childcare.

So, I do work, sometimes, but if someone else employed me, I probably wouldn’t make much of an employee. And a lot of the time I work, I’m not getting paid. A lot of the time I’m writing something like a book for which one day, if it’s a success, I hope I will get paid in the future.

Is that working? If you’re not earning, or at least not earning yet, and you’re not quite sure if you’re going to be earning for the work you’re doing, only not doing because sometimes you’re too sick to work, is that working?

Can you see the problem?

It’s the latest edition of what I call the low grade limbo.

I’m stuck in the middle. I’m sick, and not sick. I’m working, but not working. I’m dying, but not dying. I have cancer.

Only I don’t.

A similar conversation occurred with my life insurer, when I telephoned for a claim form.

“I have a brain tumour,” I said, trying not to make it sound too dramatic. (To be honest, it’s pretty hard to say that without sounding dramatic.)

“I see,” said the operator. “Is it benign or cancerous?” (Yes, she was that sympathetic).

“Er, well,” I replied. “It’s neither. Only, it’s both.”

“It has to be one or the other,” the operator replied, clearly staring at two mutually exclusive tick-boxes on her computer screen.

“It’s cancer,” I said, afraid that might be the end of my insurance claim right there.

“It’s cancer, er, it’s going to be,” I qualified. (Some calls may be recorded for training purposes).

Low grade gliomas are not benign. My consultant brain surgeon made that clear from day one. I told him about the insurance conversation, and he shook his head with familiarity.

“There’s nothing benign about these tumours,” he said, a professional opinion his colleague later clarified for the insurers.

Low grade gliomas are essentially a dormant future cancer that are nevertheless slowly growing.

They’re not yet cancer, but they will inevitably become cancer. Officially they’re not malignant tumours, but they will be. Since they cannot be cured – even if a surgeon manages to take most of it out – they’re essentially malignant cancer. Only not yet.

And anyway, they keep on growing and will finish you off even before they become malignant if they first win the battle with the rest of your brain for skull space.

Either way, no-one would call it benign. And the limbo doesn’t stop there.

Even the world’s best brain surgeons are in two minds about what to do about low grade gliomas. Some would go for surgery upon identification. Others would watch and wait, only resecting when the tumour starts to get mischievous. The evidence for longer survival isn’t conclusive either way. (And irrelevant to me, since mine isn’t operable).

Then there are the oncologists. Some say radiotherapy straight away. Others, including mine, says wait: radiotherapy is my trump card to use only when necessary. And again, no conclusive evidence either way on life extension.

Even one of the most cited scientific papers on low grade gliomas is called The Dilemma of Low Grade Glioma.

And still I’m not finished.

As I learned at a very useful and revealing Brain Tumour Charity information day the other week, some health authorities are so strapped for cash (or so ignorant about the impact of LGG on patients, someone argued) they don’t allocate low grade brain tumour patients a neurologist, oncologist or specialist cancer nurse,

We’re just sent packing, with six monthly MRI scans and an appointment with an epilepsy nurse. Essentially, come back when you have cancer.

Luckily for me, my team in both London and Essex do allocate a multidisciplinary team to low graders.

My specialist cancer nurses are experts in brain tumours, and clearly understand that just because I don’t yet have a malignant one, that it being there and slowly growing has huge impacts on my life: seizures, physical disability, memory and speech problems, problems working, drugs, the side-effects of drugs. MRI scans. The stress of waiting for MRI results.

Low grade glioma is a life lived in limbo. This became one of the central issues of the information day, and it was a revelation to me that others were having the same experience.

For me, it means constantly changing my drugs. I’m never quite sure if a step up in seizures is down to tumour growth, or just my drugs not working for me. Or a combination of both.

It means living my life in six month chunks, from MRI to MRI. I’m never quite willing to plan too far ahead. But nor am I so pessimistic that I’ll leave the calendar blank for months after every scan.

It means that sometimes I feel great, go out cycling and you wouldn’t know I had a terminal illness. Other times, I feel crap, can barely get out of bed and have to cancel appointments.

On top of all that, there’s a one in three chance that I don’t have a low grade glioma at all, but rather something even more serious. More limbo.

Now please don’t get me wrong.

I’m definitely not wishing away the limbo. With the certainty that my tumour will never go away, the only other certainty I have is that it is going to kill me.

For now, I’ll take the limbo.

But as I’m learning more and more – and which I plan to write about here sometime soon – cancer is tricky. It’s clever. It’s astonishing. Actually, I’m amazed.

I am in awe of cancer.

In whatever form you have it, just when you think you have a handle on it, cancer changes and surprises you. You read something and you think you understand, but then it changes and all the cards are back in the air again.

For cancers of any kind, there are no simple answers. There are no miracle cures. There are no certainties. To have cancer – to have had cancer – is to be in limbo for the rest of your life.

For each of us, it’s just a matter of degrees.

5 Comments

  1. revealing. You’ve reminded me of the wonderful downward spiral i am inevitably on, but also educated me further. Anyway I don’t care I am buying a house and doing some gardening. Take that cancer.

  2. I’ve been reading your blog for months because your ‘story’ timeline pretty much matches mine but your a few weeks ahead! Strangely although I don’t know you I somehow feel that I do.

    I’ve been holding off contacting you because I wasn’t sure if you would actually want to speak to too many other people blighted by the confusing / daunting / scary / weird would of having a brain tumour. But today I decided it’s time to say hello and thanks for the clarity about the lack of clarity we are facing.

    I’m being seen at the NHNN with a biopsy likely in the coming weeks as they think I have Gliomatosis. Again I can’t get clarity though. Some websites say its low grade, other say it’s grade 4.

    It’s scary but as you say I don’t feel that we are treated in the same way as people with ‘real’ cancer. My brother had testicular cancer recently and there was a nurse there to support him after his diagnosis. With me things were a bit different but that’s another story.

    I will stop my ramblings now but thank you for this blog. I’m actually going to show the above post to a few friends who don’t understand what’s going on with me. I simply couldn’t explain it as well as you.

    If you fancy dropping me an email at any time I would love to swap experiences. Totally understand if you don’t want to however – I can actually say “I know how you feel” with truth!

  3. I just stumbled upon your blog during my monthly “low grade glioma news check”. I totally understand what you are saying about living in a limbo, and having a benign cancer. However about surgery (while it may not be nice to hear it) that while a class I evidence doesn’t exist (as it would require unethical ramdomised surgery) overhelming evidence points now that aggressive and maximal surgery means better outcome in the terms controlling epileptical seizures and also with overall survival.
    http://www.ncbi.nlm.nih.gov/pubmed/23087667
    http://www.ncbi.nlm.nih.gov/pubmed/18981880
    http://www.ncbi.nlm.nih.gov/pubmed/18323558
    http://www.peerviewpress.com/aggressive-brain-surgery-suggested-idh1-mutant-astrocytomas-presented-asco

    Just my 0.02 cents, my neurosurgeon said that low grade glioma isn’t a death sentence, as his own elementary grade teacher had glioma removed some 30 years ago.

    1. Thank you so much for contributing to this, and I like nothing more than a scientific paper.

      I’ve seen a lot of these before. And I completely concur with you – the evidence suggests maximal resection (above 95% – or to put it another way ‘aggressive and maximal’) leads to better survival rates (but not cure). Sorry if I gave anyone the impression otherwise. (I do link to a few papers on this in the reading section, and also from a few other blogs). The point I was making is that the jury is out on whether the surgery for LGG should be right away, or later on, and that there’s no evidence that sooner or later leads to longer survival rates.

      And I’d say too LGG definitely isn’t a death sentence, because you can live with one for a very long time – that’s kind of down to luck. Some turn malignant quickly, some end up never turning malignant (because you die from something else first I guess). But they do grow, albeit slowly, and if you can’t do surgery, then sooner or later you run out of space. Again, it’s a question of how slowly (or quickly) it grows. Again, luck I suppose.

      That’s completely a layperson’s perspective, but based on my three surgical opinions – which all concur with each other – and a truck load of reading. That’s the thing about brain tumours, each one is slightly different, and each one is in a slight different place.

      In my case, the docs wouldn’t get even close the 95% resection target, because mine is very diffuse throughout the lobe, has blood vessels running right through different parts of it, and is very close to vital parts of my brain for movement, speech and other motor skills. (In short, the outcome even if they could get it out, would not be good, because of the damage they’d do while they were in there).

      It looks a bit more like a coral, winding its way into the spaces in my brain, than a lump as some people assume a brain tumour would look like. There is an MRI vid early on in the posts on this site, which gives you some impression.

      So, fantastic contribution and thank you, and good luck with your continuing journey. Please keep reading, and contributing of you feel able.

      1. Happy to contribute, as taking a part to someone else’s blog is always pretty personal, even more when blog is about serious thing like… this. But having also a low grade glioma kinda gives me a perspective (and some kind of right IMO) to speak out as I don’t have a blog or website of my own.I am just glad if you don’t mind if I do it right here now and then. I don’t know if you want to see this but recent study claims that resection vs. watch and wait gives supreme results: http://jama.jamanetwork.com/article.aspx?articleid=1386639. Still I don’t know if this helps or makes things worse, but here it is.

        About survival and statistics, well I have made up my mind after the diagnosis and speedy resection, I wanted to know everything. Doctors were very optimistic as I don’t have any side effects etc. from the tumor or surgery. And some of the newest research claims that my kind of tumor with gross total resection means 95% certainty of living at least 17 years. Well that is great! But what good are those positive statistics? How could I know if I am part of that 5%? or I get hit by a truck? We just have to live our lives, hoping for the best and not thinking too much about the worst possible scenario.

        Sorry about the spelling and such as I am not a native english speaker (and I can always play the brain tumor-card). I guess get well is kinda stupid, but good luck or live-long-and-prosper, you get the idea!

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