Cheshire Cat Hunt: it’s a no brainer

Firstly, a warning that this post talks about prognosis for glioblastoma grade 4 (GBM4), so if you’d rather not know, stop here.

I’ve decided on an alliterative title today, don’t say it too fast.

On Monday, I met my consultant oncologist, Dr Sarah Pascoe, at Derriford Hospital. I had encountered her some years ago when she came to talk to us on a paramedic training day about the management of neutropenic sepsis, which is a life-threatening complication of chemotherapy treatment. She had made quite an impression then.

I like her at once; she’s friendly, warm, open, straight-talking and has a sense of humour. We talk generally, and in detail about Hunt the tumour and how he might behave in future. The treatment on offer is:

Six weeks of radiotherapy, which will be daily on weekdays, with weekends off.

Six weeks of oral chemotherapy daily, with a drug called Temozolomide; this runs concurrently with the radiotherapy and enhances its effectiveness by making the cancer cells more vulnerable to it. I will also get an antibiotic to prevent a type of pneumonia that is common with this treatment, which affects the immune system and makes you especially vulnerable to infections, and also means your body is unable to deal with them.

Following this treatment will be a six month course of chemotherapy with oral Temozolomide, taken for four days, with 24 days off.

A big concern for me as you know is in weighing up the value of treatment over months and which has some significant effects, with quality of life. That’s a particularly tough call when the prognosis for GBM4 can be limited to months. Dr Sarah is clear that my surgical result and fitness gives me a good chance of the proposed treatment working well and that I should tolerate it well too. The aim is to prolong symptom-free life.  Of course there are risks, in particular: infections; somnolence that might go on for 6 weeks post radiotherapy; sickness; blood clots; and fitting. Those can be managed however.

If I opt for no treatment I’d be looking at months, and I would be unwell with neurological problems for a significant part of that. The evidence, she says, supports the treatment in terms of quality of life. So, it’s a no brainer. Dr Sarah says that in some cases she would not recommend the treatment because it would not give a good quality of life, so we are clear on that.

When Hunt recurs, treatment options depend on where the recurrence is: this might be around the site where he originated, which is my right parietal lobe; or it might be elsewhere in the brain where he’s not accessible. So he might or might not be surgically accessible, or vulnerable to radiotherapy.

I ask about swimming during the treatment (and that’s the huge advantage of oral chemotherapy).

Are you swimming in swamp water? Asks Dr Sarah.

No, moorland rivers or the sea… 

She sees no reason why I can’t swim if I feel up to it, with the proviso that I must not swim alone because of the risk of fitting.

I sign the consents.

I go to have my bloods taken, and am given an appointment on Monday for a CT scan to measure me for my radiotherapy mask. This will hold my head still while the radiotherapy takes place. The treatment should start in the next three to four weeks.

DWP

Because I have a GBM4, Sarah will issue a form DS1500, which means I get full ESA including the support group rate and full PIP with mobility allowance, no questions asked. So my struggle with DWP is at an end.

As an aside, I had called them on the previous Friday because I still hadn’t got to grips with the medical and work assessment forms, and the deadline was 6 April. I had my histology, but was unsure whether I would get the DS1500. On this occasion I spoke to a lovely woman who was clearly old school, and who told me not to worry about anything, and annotated my files to ensure I’d not have any problems She checked I was in touch with Macmillan, which I am, and explained the support they can give including excellent benefits advice (in sharp contrast to the initial experience in which the advisor insisted that Macmillan ARE NOT BENEFITS TRAINED). It does highlight the culture of DWP which has changed from one of being there to help and advise, to one of being there to identify and punish scroungers.

I leave Dr Sarah, get my ticket for the bloods, and buy a cup of tea and a Bakewell tart with which to take my dex. I  walk to the table, and as I go to put the tea down, the strap of my bag slips from my shoulder and falls, so I spill half the tea over the table and my arm. Once the mess is mopped, I open the Bakewell tart. I peel off the layer of sugar icing, and find a heavy, tasteless, clag, like sawdust spilling from a corpse. I feel a bit shaky.

There’s something quite final about being officially terminally ill, to the point where even the government will admit you’re not going to recover. The Bakewell tart feels like the shape of things to come.

 

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Histology Results

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First, a warning; there’s some unexpurgated information about brain tumours here, including prognosis. It comes further down, under the Result heading.  It’s the kind of information that I didn’t want to know for sure at the start, although I did have some idea. It’s also the kind of information that I can’t resist forever. I’ve always wanted to know things, to find out. I’d balk at the thought of being completely in the dark; my paternal grandfather in the 1960s was never told that the illness that killed him was cancer. So there ensued a game of charades which from what I’ve been told involved various efforts to avoid upsetting my grandmother (a strong and capable woman) and various others, including my grandfather who was clearly dying and who said to my mother at one point of course you and I both know what I’ve got.

My grandfather was a man who’d grown up in extreme poverty and violence; he was one of eight children whose father had lost a leg in World War One; he and his brothers would go to school via the soup kitchen in Plymouth for their only meal of the day. He worked his way to Australia on a ship aged 14, spent a couple of years on a sheep ranch, and returned to Devon to join the police, where he attained the rank of Superintendent. He was 6’5” tall, always smartly-dressed, hard-drinking, charming, tough to the core, and funny. A few years ago I was called to an elderly Plympton man, who I took to hospital in the rapid response car. He’d been an apprentice barber around the time of the war, and it turned out my grandfather Jack Roper used to go to that barber’s for his haircut, where he’d always spoof the barber for the cost; sounds about right said my Dad when I told him. A man who knew life.

That pressure is on everyone. What an odd notion, that you are protecting people from accepting, understanding, planning, tying up loose ends. Isn’t that opportunity a golden one? It’s denied those for whom death comes suddenly, but I’d argue it’s a chance to prioritise, consider what’s important, right a few wrongs. I spoke to a few people I felt I needed to clear misunderstandings and arguments with (one contacted me) after being diagnosed, because each was a little thorn that I held and I couldn’t let them fester. It was a good thing to do and I’m glad I had the chance. Of course I’m an extravert who communicates – I say what I think, I discuss, I’ll talk about more or less anything. Many people are more private. Atul Gawande talks about that, and around the end of life it’s about identifying what is important to you. For that to be easy, those closest to you also need to understand and it’s one of the difficulties with the crisis management of end of life, how others respond and what kind of process is kicked off; Gawande talks of end of life patients being maintained in intensive care right to the end in the US, which is of course utterly futile, and horrible too. Avoiding the acceptance of death (and ageing) is an art form in our culture. Each important person in your life will go through the process of accepting your death in her or his own way, and at their own speed. But the conversation has to be had in some form, and your wishes have to be made clear.

I’ve had a few message conversations about death with kindred spirits from Facebook whom I don’t know personally. Isn’t that odd? Or is it? As one says, maybe it’s harder to talk about your feelings with people you feel responsible for – certainly that was how I felt today, leaving my parents in the café while I got the news, then relaying it over tea and lemonade afterwards. But they knew the score, and I felt I had to process the information myself without worrying about how they were taking the news. So the protection instinct is there, modified.

I’ve slightly diverged from talking about prognosis; I imagine some would rather not know in anything other than vague terms, and since there are no definites in game of percentages, median survivals and averages, that would appear to be a reasonable strategy to take. I already know the prognosis for metastatic breast cancer, and of course there are many variables there according to where the mets (what Mr F calls seedlings) lodge in your body and so on. I looked up the GBM4 a couple of weeks ago, peering at the information rather as the babysitter in a 1970s slasher film peers around the basement door to investigate a noise. It was the point where I felt I needed to know.

Result

I’m sitting in Fal in the bay again, waiting for Mr Fewings, and Louise Davies the neuro oncology nurse. I chat to a woman awaiting breast cancer surgery; she’s having the same kind of op that I had first time around, in January 2011. Full circle. I don’t mention that this might be related. We talk about the surgery, and about the woman’s grandchildren. Finally, Louise appears and calls me in.

It’s a small room, white cement, metal windows. I sit in a black chair by the desk.

We begin with how I feel, the weakness and the strange numb/burning patch on my leg. The weakness is steroid related, classic. It’s no longer predominantly left sided, and the upper arms and thighs are most affected. Mr F also notes I’ve put on a noticeable amount of weight since he last saw me, in the classic steroid pattern, and related also to the effects of a significant dose of dexamethasone over six weeks or so. My cheeks are so swollen they’ve gone numb. The leg is a nerve problem, which he demonstrates. It’s a nerve that crosses the bulge in one’s gut over the pelvis, and it can become stretched. It enervates precisely that area. It’s the side I’ve been lying on, and makes total sense. So I’m glad to know that’s not Hunt-related. I’m to reduce the dexamethasone as of tomorrow, 4mg in the morning and 2mg at lunchtime over a week, then 2mg and 2mg. That should improve how I feel in myself, reduce the effects and improve the weakness.

The nausea I had intermittently shortly after reducing the dose last time can be treated with Ondansetron if I need it, thus avoiding upping the dexamethasone again.

Now we move to the results.

I asked to record the meeting on my iPhone, so what follows is the transcript with some extraneous phrases removed. I didn’t listen to it again till this morning, and what’s really interesting is that, despite being focussed and concentrating, I actually got a couple of key points wrong on asking Plum to spread the news. Then from Plum’s post there were a range of interpretations, some of which I think missed the negatives altogether. The lesson is clear; no matter what your interest, you hear some things that haven’t been said, you miss some things that have been said, and you read the message in your own way. (Of course there are implications there for informing those close to you about your wishes as I’ve been discussing)

So my cancer discussions are going to be recorded from now. Back to Mr Fewings.

He’s matter of fact, and talks clearly; we had already discussed the two options after the surgery so I am prepared.

I’m expecting this to be metastasised breast cancer.

It’s not.

It’s a Glioblastoma (WHO Grade 4), abbreviated to GBM4, an aggressive, primary brain tumour. This is the one that most people thought Hunt was not.

It’s 45mm x 30mm x 23mm.

Mr F:

Usually with a glioblastoma there’s an area which is obviously the tumour… and then around that is a patch and a rim of obvious tumour, intertwined with areas of brain, and then as you get away from the tumour there’s still patches of tumour, and then microscopic rootlets through a widespread area.

[He’s drawing a diagram as he speaks; there is a lot of scribbling].

Yours however looking on the scan and from the operation, was very well demarcated with a clear plane and so the main bulk of it, phhhhp! has plopped out.

So because it is a glioblastoma, you will still have to be managed as per the glioblastoma, which is chemotherapy and radiotherapy.

But with respect to your prognosis I would expect and hope that it would be better than the average, because it’s all been removed, with the caveat that it won’t have all been removed there will still be some microscopic rootlets.

Better than average means half the people do worse than average and half the people will do better than average. But I expect you to be in the good half rather than the bad half.

Unfortunately this problem, despite this being removed, is incurable.

The treatments are aimed at keeping you as well as you are now for as long as possible.

Without treatments, it’s likely that this disease process would take your life within a number of months, maybe six months plus or minus a wee bit, but with treatment your life should be considerably longer than that, say add on about another year…and as I’ve said hopefully in your case maybe even longer than that.

I ask Mr F about the oedema and the blood brain barrier, as I’d read that oedema constitutes a failure in the blood brain barrier. So is there cancer all around my brain?

No, just the tumour site, that’s all.

I ask about the tumour; the fact that it’s grade 4 is the most important information, because that describes its high level of aggressiveness.

I ask for and am given a copy of the histology report.

We briefly discuss radiotherapy which should be over 6 weeks with a tablet chemotherapy drug called temozolomide alongside. On Thursday morning I have an outpatient’s appointment with my oncologist who is, Dr Sarah Pascoe. She will go over the plan, discuss the options, and then most likely the planning will start so I’m to look forward to spending a few hours at the hospital. Louise my nurse tells me that fatigue is the main side effect of brain radiotherapy. Mr F says there may be an indicator for stereotactic boost as it’s well-defined, so more focused radiotherapy is a possibility.

I feel I have enough to think about at this stage, ready for my appointment with Dr Pascoe who is the expert.

I then ask Mr F about the lung nodules, which showed on the CT scan and which was a part of the reason I was drawn to the idea that Hunt was a met from my breast cancer. That and the bad luck of having two unrelated types of cancer within 5 years. Is there a god?

Whilst they noted them, a 3mm nodule and a 5mm ground glass nodule, it was noteworthy but of no major concern. However if this had turned out to be a seedling tumour, they would be other seedlings, but because this has turned out to be what it is I’m happy to ignore that. Also you have the abdominal lymph nodes related to your microscopic disease, the gut stuff.

At your operation when it was removed I said, ‘ah it’s going to be a met’ and the others though the same. About 1 in 20 are like this, and as I say they do tend to do better than average because the main bulk has been removed. If one can remove about 90% of the main mass of it that does confer some benefit, and with respect to the actual area of abnormality, 99.9% of yours has been removed.

Me: So that’s as good as it can be really.

Mr F: Absolutely yeah. So it’s not great news, of course it’s not, I’m not going to pretend it is…

Me: Yes I was ready for that, I knew it wasn’t. It’s nice to know it’s got a positive to it than just being shit and more shit.

Mr F: Indeed! You are well, no cognitive problems or neurologic problems, you’re a bit crap at the moment if you excuse the expression – courtesy of steroids which we’re happy to reduce down – and you’re seeing Dr Pascoe on Thursday for a plan of action for your other treatments.

I thank Mr Fewings and the other staff who have been excellent.

So in summary:

Only around 1:20 GBM4s is demarcated from normal brain tissue in the way that Hunt was. 99.9% of the tumour was therefore removed. A very good result for the more usual GBM4 would be to remove 90% of it.

Hunt is surrounded by an area of microscopic tumour rootlets, which can be treated by radiotherapy and chemotherapy in tablet form; potentially some more focused radiotherapy can be used in this case.

With no treatment, I would expect to live only 6 months, give or take.

The median survival for a GBM4 is one year. 50% of patients will live for less, 50% for longer.

I am expected to be on the longer side, which could mean 18 months, or even more. There are no guarantees.

So my news wasn’t as I’d expected at all. As Mr Fewings said: you never know.

I feel slightly shell shocked, suddenly tired, and half relieved by the thought that what remains of Hunt can be irradiated and chemically shrivelled, with of course my shrivelling prayer joining the fray. I feel some visualisation coming on particularly after a funny message last night in which kneecapping featured for the real Hunt. Now I see Hunt the tumour as the Cheshire Cat’s ghostly smirk. You haven’t got rid of me yet, he leers. I see the smirk exploding in stars with stereotactic rads and some blue stuff that burns, forms an acrid, fizzing smog and makes him cry. Sometimes only vicarious violence makes me feel better.

For now, Louise and I head to another office, and she runs through my folder of information. I can plan and monitor everything using the folder, including my food intake, signs and symptoms and pretty much anything else I can think of, but I suspect I won’t if past form is any indicator. Louise ensures I’m ok, explains the steroid reduction for about the fourth time, and points out that she’s written it in my folder. The page is cleverly marked. Now it’s a case of allowing everything to sink in, and preparing for the oncology appointment.

I am glad to know what’s what, even relieved. Of course few of us knows when or how we’ll die though I can probably predict with more accuracy than most that I’ll be dying of smirking Hunt as he re-materialises, sooner rather than later.

I think of some of those sudden deaths I’ve been to as a paramedic; the young lad driving home from work on a Friday, losing concentration momentarily, thinking about his night out perhaps, and clipping the verge. Hanging from the car, still alive but I can’t reach him and I doubt he’ll survive. I talk to him, touch his shoulder, chat about all sorts and tell him he’ll be okay while the fire fighters get him out. I hope he doesn’t know what’s happening but if he does he’s not alone.

The elderly man, a non-injury fall, sat on the floor next to his bed at 3am, unable to get up. I’m not a happy bear, I’ve not been a happy bear all day… as we lift him he goes into cardiac arrest. His wife knew he was going she says.

My grandmother, ooh, I’m going, I’m going…we hold her, tell her she won’t fall, misunderstanding.

And the baby, handed to me by a woman whose eyes beg me to help, while they know it’s too late. I see the tiny mouth, blanched almond white from attempts to breathe life back; the little nub at the centre of the lower gums where the ghosts of tiny teeth will never appear, the minute finger nails, dark blue.

The unhappy bear knew he was about to die. The baby just stopped breathing in its sleep, warm, fed, loved. The young man? Maybe an oh shit and disbelief, the terror. And the loved ones…

I’m still not dreaming. I don’t have nightmares, or terrors. I wake each morning in the early hours thinking about my illness. But I don’t dream. Why aren’t I dreaming? Or why aren’t I registering the dreams I have?

My fear, the slasher in the basement, is that I am going to lose my mind after all.