Histology Results

IMG_1432

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.

Advertisements

Moorgate meanderings

IMG_2798

Today my best friend is Nat; kind, friendly and professional, she’s one of the Moorgate HCAs. She runs around after me, and several others, and chats as she goes. Nothing is too much trouble, too silly. We end up having an in-depth conversation about cancer; Nat’s perspective is one more that adds to all of these chance encounters with people I might never see again add a little bit more to my worldview and my ability to adjust to the fact that only a month ago I still believed I was physically strong and in some kind of control…but that’s simply no longer the case.

When politicians criticise the lack of compassion and vocation in NHS staff, when they pontificate about how to bring it back by making nurses less professionally qualified and giving them lessons in bedside manner or whatever Victorian phrase of the day they’ve decided to impose, I have an overwhelming urge to lob a truck load of used bedpans into the commons. Yes, there are people in every walk of life who lack compassion, empathy and the ability to interact on a human level with anyone. A fair few of those can be found supping subsidised drinks in Westminster, and there are of course some in the NHS. I had colleagues whose attitude left a lot to be desired – but they were few and far between. People don’t do the jobs we do for money. They do them because they like people, are interested in them, care about them. In addition to that, Florence Nightingale would struggle with the ability to manage the clinical picture of multiple patients with complex conditions on a neurological and neurosurgery ward without the professional training and experience that role now requires. Our un-esteemed Secretary of State for Health recently used the term ‘ambulance driver’ instead of ‘paramedic’, which belittles and displays such ignorance of the complexity and skill of the work that NHS staff do.

Forgive the rant at this stage, but I hope you can see from what follows that this is necessary. The ridiculous assumptions made by our political masters (and yes, they are mostly men in case you hadn’t noticed) and their judgements on the rest of us owe nothing to evidence. They’re meant to become tabloid headlines, to bully and blame. They’re aimed at covering up the waste and expensive results of their own short-term cost-cutting approach. Their policy fiascos and convoluted management systems aim for something called efficiency while they dump financial and human costs elsewhere and destroy the human beings who are providing a value in the kinds of terms they know nothing of. Is it the predominance of representatives from the public school system in our political establishment that causes this? Children sent off by their parents to dens of bullying at 8 and brought up to survive in the colonies? People who’ve suffered and survived, and truly believe as IDS argued that they’re helping us to pull ourselves up by our bootstraps by being cruel and removing money and support to those who already have very little?

Back to Moorgate. Opposite me is a person who’s been in this area of the hospital for a prolonged period, through the system of intensive treatment, high dependency and this bay. She’s moving on to rehab today, and there’s a constant stream of visits from various hospital professionals who’ve come to say goodbye. There are hugs, stories, many of the staff are close to tears. It’s a privilege to be lying here, back in the immersive theatre of this big hospital; but it’s also quite uncomfortable to be an accidental witness to such a momentous day, an intrusion into someone else’s life. That’s because it’s apparent that we’re witnessing a day that most of these people thought would never come. I marvel at the numbers of people involved in this one story of intensive care and the slow beginnings of some recovery; overhear snippets of stories from the staff, the jokes at her Dad’s expense over the rugby. We all wish her luck as she leaves, and a surge of love for this woman I don’t know and her family, and all the staff so delighted to have achieved what is an apparent miracle threatens to overwhelm me; I know too that she will need care, and support, and empathy, and resources, most likely for the rest of her life. Real support. The support that our NHS is still managing to provide – just – under this onslaught of cuts and privatisation.

It’s nice to have the contact and the interest of someone else’s long-term and subtle problems, and fellow patients have some variations on the theme which are incredibly interesting. I’m no expert, but I have encountered a case involving a young girl who would suddenly become hypoglycaemic (low blood sugar) which can lead quickly to unconsciousness and death.The cause turned out to be a pituitary tumour. It’s the mummy gland, the one that runs all the others in the body, and when it goes wrong all kinds of random things happen. So, we forge friendships over curiosity and medical history, and then tales of childhood and life stories, and arrange to meet for lunch in the summer, in Port Gaverne. We collude on jamming the huge windows open, and as I attempt to insert a bed bay book it slips out and falls. We’ve just gained a bed, and now joke about a Moorgate ward book-related traumatic brain injury arriving from downstairs to fill us up again.

One of my fellow patients lives alone, and has asked for a couple of days in one of the community hospitals since she’s feeling nervous about leaving Derriford. The OTs arrive and check her out. There are no beds for her, because of winter pressures. I resist the urge to butt in; the cause of the acute shortage of community hospital beds is government cuts to council budgets of 35% since 2010; prior to that there had also been lesser cuts. The beds have been closed because there is no money to fund them, and we have been lied to about the provision of community care that was supposed to take their place. This is expensive, and so it hasn’t been provided. My new friend becomes increasingly upset by the problem as her time to leave draws close.  Later I email her and she tells me her GP complained to Derriford that she should never have been sent home alone, and that she is now staying with friends. One more small story; one independent woman, vulnerable for a time through no fault of her own (I don’t ask for much, she said), abandoned because someone thinks we’d rather have tax cuts than pay for such vital resources.

I have a visit from Raman, Mr Fewing’s registrar who is lovely and chats about the surgery. Then Mr Fewings himself, like Tigger, manifests by my bed.

Morning young Ropes!

That’s my old RAF nickname. How did he come up with that?

We chat, he’s still 50% GBM 50% metastasis on the tumour. He says I can go home when I feel ready, but not to go unless I’m absolutely sure I feel up to it. I don’t today, but think that tomorrow I will.

It’s brain surgery, yes, but when it goes well it’s fine! If it doesn’t, that’s another matter,  He says. Mine has gone well. He boings off.

Zoe the physiotherapist arrives; I know her from years ago when both of us worked for a kids’ charity called Chicks. We catch up briefly, then she starts to assess me. I’d thought my left-sided proprioception problems had largely resolved with the steroids, but quickly realised they hadn’t. Zoe says I’ve compensated for them, and they are certainly much less severe. She asked me to close my eyes and moved my left hand into various positions which I had to replicate with my right. Again I felt a physical shock looking at what I thought would be a mirror image and finding my right hand doing something so completely different; fingers extended when I’d thought they were flexed, wrist turned the other way. My walking is very odd, and I’m slumped over with my shoulders raised to my ears. People have been commenting about that for many months. So I’m to draw up my core, engage it, and consciously drop my shoulders. It helps. For stairs, I must remember the left sided problems and be conscious that I don’t know what my left hand is actually doing. I feel very weak, but there’s a definite improvement from pulling up and getting the right position.

Another patient arrives on Thursday, who’s had a brain biopsy. She has two scars the length of mine, and a whole head bandage. She’s remarkably resilient and eats only a few hours after her surgery. We both have right parietal tumours, are of a similar vintage, and compare notes. She’s quite overcome to know there’s someone who’s had related experiences, and it is remarkable. Both of us took some time to act – her precipitating event was a seizure.

We talk more about it, then she tells me her tumour is the result of treatment for childhood leukaemia.

From the ages of 7 to 11 she had active leukaemia, at a time when the survival rate was only 14%. So for every hundred children diagnosed, 86 died. The treatment then was crude and I suspect experimental; now things have changed massively and the survival she tells me is around 95%. But back then, they gave her radiotherapy to her whole head. That’s what cured her, she says, and she’s gone on to live her life, to have children. Now it’s biting back, and there’s a huge amount to deal with.

In the night, an elderly man appears in the bed opposite mine. He’s distressed, and wails. He hates the blood pressure cuff, the pulse oximeter clip on his finger. He has a headache. He’s trying to get up but can’t. The emergency alarm goes off and there are stampedes in the corridor as the medical team respond to a cardiac arrest in another bay on the ward.

I’ll have to do something here…about this.

Our wraith man – next to my bed, staring at me. Mark the nurse whisks him away; tonight they couldn’t cover the shift to find a walker for him so he keeps escaping. They’re understaffed as it is.

I get up for a wander at 5.30, and lovely Rachel, another of the HCAs, makes me a cup of tea and gets me some biscuits and a slice of cake. I eat it at the nurses’ station and she tells me how she keeps falling asleep on the bus back to Tavistock and missing her stop after the night shift. I sympathise, remembering my early morning drive back across the moors when I used to work in Newton Abbot; usually I’d get as far as Yar Tor, but once or twice, especially after an overrun on top of the twelve hour shift, I’d be nodding off in a layby on the A38. The eyes go, focus pulls off, you’re powerless. So I’d stop and sleep for ten or twenty minutes, then press on. Sometimes it’d happen four or five times. I’d arrive home wide awake and unable to get to sleep, beyond exhausted.

I feel good today and decide to have a shower. I’ll be discharged this afternoon, by the time my discharge letter and medications have been sorted.

It’s a wet room with a loo by the door and a wide space where the shower sits on an adjustable pole with a flexi hose. I’m happy to see it’s at shoulder height; my head needs to stay dry. So I undress, leave my pyjamas round the corner, and lay my clothes on a rail at the far end from the shower. Then I turn it on.

The spray hits me square in the face as the showerhead rears from the holder, then arcs up and sprays the entire room. It’s lovely to have water on me. But my head is supposed to be dry. I try to grab the shower head and it turns, spraying the side of my head, before I think to turn it off with my wobbly hands. Now I have wet hair, wet pyjamas and wet clothes. Nothing new there then. When I manage to sort it out, the shower is lovely. I’ve wound a towel round my head, and spend some time just standing, letting the water run cool over my body.

The dressing has unstuck, and so the nurse replaces it over damp hair. She offers to take a photo of the scar, which she says looks lovely. That’s the one you see here, with the odd lump of my swollen ear to the left hand side. The scar extends to perhaps 3cm from the top of my head.

Another Tigger boing in from Mr Fewings:

Morning young Ropes!

I’ll be called in the week after next for the histology results; whichever of the two possible outcomes are malignant (it’s definitely not an abcess) and indicate radiotherapy as a beneficial next treatment option. So I know enough to keep me going.

At 4.30, it’s home time. Mum and Dad pick me up, and I manage the walk in two stages. Sausage, the dog formerly known as Bun, is ecstatic as I reach into the car. It’s lovely to know I can cuddle my dog again. We’re having the pesto I made last week for dinner, with spinach tagliatelle. Family, good food, dog. Hunt gone.