The tuna in my head

07:30 Friday 15.9.2017

The third vomit was messy. I missed the bowl and dribbly puke ended up on the floor.

But at least the honey I’d put into the porridge meant the vile bitter taste had been ameliorated somewhat.

I lay back down on the wooden floor of the hallway, contemplating my situation with some bemusement and puzzlement.

I didn’t feel in any imminent danger, but certainly didn’t feel like standing up. The headache, my constant morning companion for the last few weeks, was insistent. But I was fully cognisant.

Discussed options with 111. My new reality was that my world comprised a small patch of wooden flooring from which I really didn’t feel like moving. I’m not even sure I could have, even if I’d wanted to.

I dialled 999.

———

The paramedics were professional. Precise. Polite. Efficient. Vital signs all checked out; they used a nearby standard lamp to rig up an IV paracetamol feed to bring near instant relief for the headache, and decided I needed hospital. A hasty kiss with my partner and I made it into the ambulance.

———

The Doctor shut the door. That was enough of a sign, a small clue, another adjustment to a new reality. I knew the news would be bad, but it wasn’t conclusive. They needed more tests to be certain of diagnosis, so I needed to be in a different hospital, where the specialists were. 

There was no point in asking the ultimate question “How long have I got?”, as they simply didn’t have enough information.

Blue-lighted in an ambulance across three counties to arrive at the John Radcliffe at midnight. The expected scenes of high impact action from ER didn’t happen. Instead.. calm. Quiet. Surreal after that pellmell dash.

———

I look at my roommates and think I’m lucky. There are three others in the ward. Tracheostomies and colostomy bags. Infinitely tender care from the staff, carefully shaving their stubble, but barely a reaction from them to their carers’ ministrations.

The next day my much relieved but still anxious girlfriend visits, which was lovely. I haven’t told Mum and Dad yet as there’s too much unknown, not enough certainty, too much doubt. What could I say? They’d only worry.

The unexpected pause over the weekend brought me to a low on Sunday night, simply because I knew the medics didn’t know what was what. The waiting, the not knowing, the doubt all leads to fear for the future. 

I needed a plan.

———

Monday morning hustle and bustle, the hospital has come alive. More scans and tests rapidly ensue. The tuna in my head has been matched to one on a kidney. This is good news. Primary on the kidney, secondary in the head. I can live with that. It could have been far worse. Seems like organ cancers like to migrate to the head. Head cancers don’t migrate to the body’s organs.

An interesting choice of words “Based on the evidence, this is what we believe”. No guarantees.

———

I have an outline plan, enough to make the call, enough to clearly explain my new reality. This has happened, this is what’s going to happen. It’s all under control. Until this is all sorted, this will be my world.

Mum and Dad took it well. After that it was easy to tell everyone else. 

There are a lot of tick boxes, lots of luck. The headaches in my head were caused by a build up of pressure as brain fluid wasn’t draining, due to the tuna partially blocking a drainage ventricle. Steroids rapidly brought that under control, the medical staff relaxed. 

I relaxed.

I was moved to a luxurious single occupancy room, with ensuite facilities.

I relaxed some more.

Three times a day I get my vital signs checked - everything’s fine. I’m fit. I’m healthy, “a teenager’s blood pressure”, flattery will get you everywhere my dear. I just have a couple of inconvenient lumps. The question they need to answer is, what’s the detailed plan of action going to be? There are lots of choices, lots of options, all with consequences. But we do now have time on our side, there’s no grave imminent danger, no need for a “smash & grab raid”, as one nurse described it.

In the meantime, would I like a cup of tea? And a biscuit?

———

The meals are fine. They are plentiful and nutritious. And free. But they are uniformly bland in flavour and texture, which of course suits many of my fellow patients. My usual and preferred diet is fresh salad, fish, veg, fruit.. I decide to eat mostly in the Prêt à Manger café downstairs. Something to look forward to in the monotony of waiting (and because I’m a food snob…) 

  Meat and two veg - not really my cup of tea

Meat and two veg - not really my cup of tea

Besides, although I have the now mandatory DVT socks, I need to be mobile, active, and take a promenade up and down the main stairs, about eight flights from top to bottom, half a dozen times while listening to the BBCR4 Today show, then porridge with banana and honey for breakfast, with a decent flat white and a slice of normality, away from the incessant bleeps and chimes of vital signs. 

 My gym...

My gym...

———

Here at the John Radcliffe, 3’s cellular network sucks, and I’m barely able to maintain a connection for a conversation. It’s so bad, even texts sometimes don’t go. More often than not I have to walk down a couple of corridors to a private interview room on the edge of the building where the network is a bit stronger to make a call, I simply can’t do this from the comfort and convenience of my own bed. I’m happy I can walk, many others here can’t.

There’s a sketchy unsecured WIFI hospital hotspot. And BT charge a tenner a day. That would have cost me about £180, and it’s not even that good (I measured it - see below). Fortunately I can log in for free. Had I had to pay for that, then my blood pressure results would have been off the charts. There are plenty of people here for whom £10 a day is simply far too expensive, out of reach. 

  BT’s exorbitantly-priced “premium” hospital WiFi service isn’t even that good

BT’s exorbitantly-priced “premium” hospital WiFi service isn’t even that good

In a stressful hospital stay, communication is key. Family, loved ones, friends, colleagues - all need and want to know what’s going on. They need reassurance. Patients need to feel remembered, valued, not forgotten. 

In my case there was the luxury of time to consider all the options. But, fantastic that the NHS is, things take time and this time needs to be filled somehow and not getting online is a bummer.

And then there’s the effect of the steroids which are massively interfering with my sleep patterns. Three hours sleep and BOOM! I’m awake.

02:00 Tiiiiiick…. toooooock

03:00 Tiiiiiick…. toooooock

04:00 Tiiiiiick…. toooooock

05:00 Tiiiiiick…. toooooock

Time drags, crawls, grinds to a halt.… Opportunities for boredom and introspection abound. This isn’t healthy. It’s not conducive to good outcomes. Need to keep occupied. Need to be online.

The service from the National Health Service, from the folk that provide copious quantities of tea to the Head head surgeon, is exemplary.

Do whatever’s necessary to achieve the best patient outcome. Patient First. Balance sheet second.

It’s a shame the same can’t be said of the telecoms industry, who should adopt a user or patient-centric approach to determine needs and deliver on that, rather than provide the bare minimum functionality their technology choices can provide, and deliver a sub-standard service at a price many can’t afford. I wonder who the product manager is for this service and wonder how they can defend it.

———

Two cancers. Two different locations. Three different teams. Lots of options. Discuss. 

———

Wait. Wait. Wait….

To keep me amused and occupied, I finished a blog entry about WiFi and published it on LinkedIn here.

  I’m sorry I’m not a Dr, I’m a patient trying to escape.

I’m sorry I’m not a Dr, I’m a patient trying to escape.

———

I’ve had an idea.

So - you’re in hospital and want to keep in touch with friends, family and loved ones. Worry is the enemy. Worry is caused by not knowing. Carefree communication is key.

Download an app.

On my wrists, I have two scannable NHS wristbands with all the relevant ID on - MRN number, bar and QR codes  etc.

I use the app to scan the wristband bar codes so the app recognises I’m a patient. Maybe it cross references to an NHS database to double check validity of patient status. I could maybe supplement this with manual input of NI number.

It’s geofenced to the hospital.

The effect is to remove any tariff limitations from your regular monthly cell phone tariff - minutes, data, TXTs. It overrides whatever you have with unlimited everything, AND gets you on to a decent 802.11ac 5Ghz FREE WiFi connection. 

Carefree communication all the while you need it, so your family and friends can keep in touch. There’s nothing worse than saying to your Mum “The operation’s going to be on…” and the signal drops out. It is in fact, fucking unacceptable.

When you leave the hospital geofence, your original tariff resumes.

This does of course pre-suppose the hospital is flooded with suitable telecoms infrastructure.

Make it happen.

———

Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting. Waiting

———

Friday 29.9.1017: 04:15.

Choices are: radiate or operate?

Radiotherapy is less disruptive, but causes swelling and the little shit inside my head has taken up all the spare room anyway. There’s no space left for it to expand into. So it needs to be made smaller and the only way to do that is to go in with a manual intervention and perform a full or partial excision.

It’s right in the middle of my head, on top of my brain stem, 4cm in from the back of my skull, which is now covered with Matrix-style plastic discs. 

 Back of the head selfie...  Remember the truth: there is no cancer.

Back of the head selfie... Remember the truth: there is no cancer.

I’m in the queue, nil by mouth since midnight, waiting to go for surgery. Feels very lonely.

———

Wheeled into the anaesthetics room, the team introduces themselves, tubes all plugged in, coloured scans are on screens, I start to feel… odd. 

And blink.

———

You know those fisheye camera shots, where the person in the foreground has a much larger head than everyone else? That’s the first thing I saw when I opened my eyes a fraction of a second later, with what seemed like the entire team peering in at me, the amazing Mr Plaha in the background waved and smiled.

I have it on good authority that my first question was “Where’s my iPhone?”

My first sensation was “Ow! My balls are on fire!”... Did they operate on the correct lumps?

“Here have this, it’s a little treat”.. a largish plastic syringe was emptied into my mouth - flavoured alcohol? Like one of those cheap disgusting super-sweet alco-pops designed to get kids hooked on booze; it turned out to be morphine.

Seemingly it was an eight hour marathon, due to excessive blood. Now I quite like the idea of having lots of blood inside me, the problem is having lots of blood sloshing around a brain. So although a chunk of this tumour’s been taken out, to keep me safe Mr Plaha had to leave more in than he would have ideally liked.

Eight hours on your front causes chaffing, and although they make every effort to alleviate the symptoms, it can’t all be prevented. So burning bollocks, for a short while, is a small price to pay for a successful and skilfully performed operation. 

TMI?

There’s more to come. I didn’t read about this stuff in the Macmillan PDF.

———

Transferred to the Intensive Care Unit (ICU). “Coming around” takes a long time and many people experience vomiting. I was pretty hungry having not eaten anything since dinner the previous evening, so ate a Bland & Bland Shepherd’s pie. From about midnight to about 5am, I puked up once an hour, eventually gagging on a thoroughly empty stomach, despite being given maximum doses of anti-nausea drugs. And of course this emptied any pain killing tablets also, so we switched to intravenous paracetamol.

Further shots of morphine seemed to aggravate the puking, and didn’t dull the headache, which surprised me as I had the impression it was a pain panacea. But then it turns out there are different types of pain… 

———

Two of the dearest people in my world came over for visiting, but I wasn’t really communicative for most of Saturday, being totally wiped out. Boring for them but I was hugely grateful they’d made the effort to sit by and take care. I could at least listen to them burbling away in the background.

Started to perk up towards the end of the day, managed to eat a couple of small cartons of ice cream, the instant sugar hit being part of my biological reboot.

Later that evening I was back in a four person room on the Neurology ward.

———

Sunday they started to clean me up, removing unnecessary cannulas. Some years ago I did the MCA Ships’ Captains’ Medical Certificate, and part of this involved learning how to insert catheters, using prosthetics. This time around I was out for the count when mine went in, but I was certainly awake when it came out and it feels - odd, a very strange sensation indeed. Not painful, but uncomfortable and peeing afterwards is a sensitive affair and guys, you’ll probably want to sit down for the first 20 or so pees as you’re not really sure what’s going on down there.

I’d had a bed bath and was sat in a chair reading a book when my girlfriend arrived, which cheered her up no end.

Later managed to walk unaided to the loo, 5 yards away.

New reality, new expectations, little victories. Take what you can.

———

Another Monday MRI scan. Was able to get to the Prêt à Manger café for a coffee, using the lifts. 

New reality, new expectations, little victories…

Everything’s settling down. Still taking paracetamol tablets and steroids, and seemingly the entire hospital supply of laxative. Constipation is almost inevitable, with the drugs and general inactivity, so get used to some discomfort.

The scans checks out OK and rumours start I’ll be let out later in the day, but in the end we play the cautious card, so here I remain in the tender care of Hotel JR for a while longer. Which is fine with me.

———

Wed 4.10.17 16:30

“Home, home again, I like to be here when I can. When I come home cold and tired,  it’s good to warm my bones beside the fire” 

Incredibly, less than a week after pretty intensive brain surgery, I’m back home, and very relieved to be here too. While I have received extraordinary levels of care and attention, and hospitals are great places for treatment, it seems to me that they are less good for recovery and rest. They are necessarily industrialised places, and care comes first, so those long steroid-induced insomniacal nights are punctuated by bleeps and whirrs of monitoring devices, central corridor lighting bleeds into the bedrooms, and occasionally a really serious-sounding alarm has to be responded to so there’s a general rushing whoosh as a nursing team rapidly reacts… there’s little opportunity to get uninterrupted rest.

And of course hospitals are full of ill people and the chance of infection is high.

It is though with some sense of trepidation that I prepare to leave. Although I haven’t been here that long, it’s still been nearly three weeks and it feels safe inside. I have begun to feel institutionalised. Outside feels unsafe, insecure. As I wander around the hospital in my regulation green pyjamas and especially with my post-op dressing on the back of my head, I identify as a patient. I’m one of us, someone special. That identity starts to disappear as I change back into civvies for the first time in nearly a month. 

 On the left:  My Punk dressing, stapled neatly into place. C’est brutal, mais ça marche... On the right: A week later the dressing came off. My medical team is delighted with the quality and rapidity of the healing process. I need to keep an eye out for any weeping of clear fluid, as this could be a sign of infection, which could result in nasty complications…

On the left: My Punk dressing, stapled neatly into place. C’est brutal, mais ça marche... On the right: A week later the dressing came off. My medical team is delighted with the quality and rapidity of the healing process. I need to keep an eye out for any weeping of clear fluid, as this could be a sign of infection, which could result in nasty complications…

 My brother arrives, collects up my bags and I bid a fond and thankful farewell to as many of the  fabulous staff as I can.

———

We patients chat - swap stories. We’re all here to recover, we each have our own stories to tell. Tragic. Inspirational. Reassuring. I think we are seeking reassurance. But a couple came in and it sounded like he was going to have pretty much the same treatment as I’d had. While I couldn’t say “This will happen to you too”, I could say “This has been my experience, and it’s been OK”… I’m talking, living, breathing proof that the system can work. She seemed relieved.

Hope it helped - but I never saw them again.

———

On visiting hours. 

Visiting hours are not really there for visitors. They are really there to provide an exclusion zone so that the medical staff can focus on the daily round of treatment of their patients. 

There is precious little privacy in a ward, it is inevitable that as a patient you will hear if not see very intimate details about your fellow ward members. It’s quite one thing to share these details with the nurses and doctors looking after you, it’s another to share intentionally or otherwise with other patients.

But to my mind there is a common bond, an unspoken understanding that what happens in a ward, what is shared in a ward, stays in the ward.

If your loved ones, friends, family, rock up early or linger late, they intrude into this intimate, caring world. Sharing intimate health issues with completely random strangers is quite a different experience from sharing with trusted medical staff, or with other ward members. It’s frankly none of their business, and they have no business being there.

In any case, the medical staff are intensely busy during the morning - the night staff have to complete all the medical checks on all their patients, they have to hand over to the day care team, who then also have to complete their checks and prepare their charges for the day ahead. 

I was lucky, I could pretty much look after myself, shower, toilet unassisted. Others though needed help shaving, needed mechanical hoists to get them out of bed and into wheelchairs, needed catheter reservoirs emptying and changing and so on. 

In my view it’s inappropriate for friends and relations to gatecrash all this, becoming an intrusive nuisance, for no real benefit to anyone except their selfish selves. 

So help your hard-pressed medical team to better look after you, respect your patient peers, and insist on prompt visiting time keeping from your folk. 

Thank you.

———

Friday 13.10.2017

Two weeks ago today, I had an eight hour operation on my brain.

Today I had two and a half hours of meetings at my new client’s premises in central London, spending time with the team and starting get under the hood of what they are about.

Go figure.

———

On steroids. 

These tiny wee pills have helped save my life, so thanks very much. But there’s no such thing as a free lunch and the side effects I’ve experienced are: lack of tiredness - getting 3 hours sleep in 24 and not being tired isn’t much fun. Weight gain as I seem to be constantly hungry - even recognising I’m feeding the steroids and not the body doesn’t seem to help much. Constipation. Lack of libido - ‘nuff sed. Taste - my mouth seems to be permanently lined with a weird-tasting layer which interferes with flavour. Nothing other than tea seems to even temporarily cut through this, and I don’t even like tea. Constantly thirsty, despite all the tea.

Ugh.

———

I have (had):

  • Two cancers - one primary, the other secondary
  • Two locations - head and kidney
  • Three teams - head surgery, head radiotherapy, kidney extraction
  • Two specialist nursing teams - head and kidney
  • Two hospitals - John Radcliffe (head surgery) and the Churchill (head radiotherapy and kidney extraction)

A single point of contact would be most useful as I tend to get conflicting messages about meetings and treatments from time to time. 

———

27.10.17 Four weeks after brain surgery and six weeks since ambulance paramedics arrived at my house…

The particular form of radiotherapy I’m having is called stereotactic radiotherapy. Part of the process involves making a customised thermoplastic mask and helmet combo, which in my case was made a couple of weeks ago, and into which my head has now been snapped into position. 

Part of its function is to hold my head absolutely still, as the room-sized microwave has sub-millimetre accuracy, and the last thing the team needs is for my head to bobble about a bit, ruining the physicist’s previous two weeks of planning the best angle of attack on the remains of this wretched tuna in my head.

As mentioned, it’s in quite deep, sitting on top of my brain stem, being fed by a blood vessel, and there’s a lot of brain structure to get through, ideally with minimum collateral damage.

If you’ve ever had an MRI scan, then it’s not really comparable, as you’re not inside a tunnel, you’re not inside the machine. Here I’m lying on a similar table or platform, looking through the plastic mesh facia of my mask, and can see a large disc three feet away from me. There’s a red LED glow diffusing through the mask’s plastic lattice. 

The staff, having settled me in as comfortably as possible, are talking numbers, presumably 3D coordinates. For form’s sake, an alarm sounds as they leave the room for their radiation-proofed control centre. They have a Spotify playlist running, some soft rock indie band, which is quite pleasant, really. The machine whirrs and bleeps - the large disc moves in an arc around my head, first to the right, then to the left, the LED glow goes green. The platform I’m lying on rotates also, so they can bake each part of the tuna…

..and within 20 mins it’s all over. The mask is removed and I’m free to get up and leave. 

Disappointingly there’s no microwave oven style “Ping!” when it’s all over.

There’s no sensation of anything happening inside my head - the brain isn’t equipped with pain-sensing nerves in the same way as hand and fingers. I guess evolution never expected the deep insides of our brains to be prodded and probed in this way. 

I get a cup of tea from the café and jump into the cab for the ride home. Only four more blasts, one every other day, and this phase of my treatment will be concluded. Hopefully. 

 The man in the white plastic mask

The man in the white plastic mask

———

My cornucopia of chemical compounds... left to right... 

  • Anti-sickness pills to overcome the effects of radiotherapy
  • Stomach protector to overcome the effect of the steroids
  • Steroids to overcome the swelling of the tuna and brain caused by radiotherapy
  • Paracetamol to overcome any discomfort or headaches
  • Laxido (the clue as to what this does is in the name) to overcome the effect on digestion of all the other drugs…
Chemical cornucopia.png

———

10.11.2017 - delay and disappointment

Here we press the pause button.

The kidney team advise that they don’t yet have enough information about what’s going on inside my body to make the decision about the optimum treatment that will incur minimum risk with maximum benefit, the best outcome.

Despite very strongly suggesting previously that removing the kidney, while being a major intervention and trauma to the body, was their preferred approach, their revised view is that there is no evidence that the risk of this intervention at the moment is required or necessary.

So the plan now is to let everything settle down, take a more cautious approach, and in three month’s time assess once again after a load more scans and tests.

So I’m living with an alien inside of me, which from one perspective is in itself a risk - all the drama I’ve been through so far has been caused by this kidney cancer spreading itself to my head, and all the while it’s still there, the risk of this repeating, or something similar happening, is there. On the other hand, the kidney cancer was probably there certainly for many months if not years before part of it broke off and migrated north.

The difference now though is that I know it’s there - sometimes I feel like I can feel it. 

However, the medical teams deal with all this on a regular basis, I am not unusual, not the first and sadly not the last either. Their expertise, skill and professionalism has got me to where I am now, which is pretty damn amazing. No one’s expecting any major incident to happen, I can carry on as normal.

So the new reality I’m adjusting to today is different from the one I was expecting yesterday, and the new reality has plenty of great things in store.

———

I cannot speak highly enough of the NHS. From the moment I pressed the last 9 of 999 only six weeks ago through to now, the care and attention I have received has been exemplary, extraordinary. The original paramedics made the right call to get me in for a scan. The local hospital made the right call to get me into the John Radcliffe, probably the best place in the country if not the world for this kind of thing.

The brain surgery team there, lead by Mister Plaha. made the right call on the treatment, which despite be very high risk, was performed flawlessly, professionally, with astonishing results.

I owe my life to the entire John Radcliffe team.

Thank you.

IMG_7646.jpg