“I wouldn't be here today if it were not for the NHS. I have received a
large amount of high-quality treatment without which I would not have survived.”
Stephen Hawking
Mother phones me up on Sunday as usual and she can tell that
I’m not feeling great. It’s another three or four weeks at least until my next
operation to drain the fluid from my lungs and it feels like a lifetime away.
I’m supposed to be going on holiday, to Lindisfarne (to interfere with the
girl’s latest archaeological dig on the island), but I don’t think I can make
it at the moment with my breathing problems.
I took the dog into the woods just behind my house this afternoon and I
was wheezing like an asthmatic Darth Vader on a souped up treadmill. “You need
to phone the hospital and tell them they need to drain your lungs again
straight away”, Mother insists. “Yes, yes”, I say, “I know”. “I shall be
ringing you again in a few days to check you’ve done something about it”,
Mother continues to nag. I’m clearly not going to get any peace until I’ve
contacted the hospital, so I sit down with Tori on Sunday evening to compose an
email to Gus, my specialist oncology nurse explaining my current discomfort and
my fears that my lungs simply won’t be able to take my next holiday.
I’m awoken by a phone call at 9am on Monday morning, it’s
Gus, “Would you like to come in and see Dr. Wheater at 3pm this afternoon?”.
Yes, I would indeed, and I tell him so. Five minutes after hanging up I get
another call from Gus, “Oh, and Dr. Wheater says can you pop into the X-ray
department and get a chest X-ray first”. “Will do”, I reply.
I get to the hospital, nip into the X-ray department for a
cheeky chest X-ray and make my way to the oncology centre where I observe the
usual ritual of checks and tests before my name is eventually called by Dr.
Wheater. I look around to Dr. Wheater’s door but he’s not there, I turn around
to the other side of the room and spot he’s hiding in a different office. “This
is my Monday consulting room” explains Dr. Wheater, “You normally see me on a
Wednesday in the other consulting room.” Tori and I take a seat in his
alternative office and explain the current state of play. Dr. Wheater it
appears has a cunning plan which he started to explain at my last clinic. My
latest CT scan revealed that although the pazopanib seems to be holding things
in check below the lungs, things in the lungs seem to be deteriorating somewhat.
The suspicion is that the Pazopanib is slowing down and becoming less
effective. It is therefore time to consider transitioning to an alternative
drug. As luck would have it a new drug has been approved by the National
Institute and Care Excellence (NICE) just today called Cabozantinib, like
Pazopanib it works by inhibiting growth of new blood vessels within a tumour,
consequently preventing it from spreading further. My friend Marianne kindly
sent me a link to the relevant pharmaceutical journal after my visit so I could
read up some more. But what Dr. Wheater actually recommends next is a different
drug called Nivolumab. Unlike Pazopanib and Cabozantinib, Nivolumab works by
boosting the immune system, allowing the patients own immune system to attack
the cancer. Nivolumab however only has about a 25% chance of working, if it
does work however, it is likely to have very few side effects and could work
for a long period of time. Dr Wheater has some patients who have responded well
to Nivolumab since it was first available 18 months ago and most are still
doing fine. It therefore sounds like a bit of a gamble, but will have a
potentially big pay-off. A 25% chance of working may not sound like very good
chance to you, but for a patient that’s had an uncomfortable year on
chemotherapy with no expectation of ever getting better, 25% sounds like very
good bet to me. Anyway, even if the Nivolumab doesn’t work there’s is still the
Cabozantinib now to fall back on.
However, before I can be transitioned to the Nivolumab I
need to get my lungs under control. Today’ X-ray shows a large amount of fluid
build up that is causing my discomfort. Dr. Wheater’s recommendation is to get
a few litres drained off to make me more comfortable and to see me through to
the full operation next month. Sounds like a plan to me. A quick phone call is
made just to check that it can’t be done then and there, it can’t, but I can
expect a call in a day or two when a bed becomes available. I head home and
pack an overnight bag in preparation for the call.
The call comes at 6pm on Tuesday evening. The Bed
Coordinator tells me they now have a spare bed available and can I come in
between 7 and 8? Of course I can, having had the procedure done before I have
no trepidation whatsoever, just an expectation of relief when the fluid is
drained off my lungs. I arrive in ward D2 just before 8pm and am directed to my
bed by Alice, a very jolly Caribbean nurse. Alice informs me that a doctor will
be along shortly to see me. My bed seems quite agreeable, I have a window bed
for the first time ever and a view out over the quad. A doctor duly arrives and
we talk about why I’m here, fortunately we seem to both concur on the purpose
of my visit, which is a good start at least. I list my medication to the doctor
who notes it all down and the doctor inform me that he will register me with
the respiratory department so that they can come over and perform the procedure
as soon as they are free. He states that they won’t be able to do it tonight,
which is no surprise, I wasn’t expecting to have it done tonight anyway, I
assume they just want me in situ so they can come and see me in the morning as
soon as they are ready. I draw the curtains and don my smartest jim-jams.
Having ensured I’m safely installed in my hospital bed Tori leaves me for the
evening. I look around the ward at my fellow patients, they don’t seem very
chatty. David in the bed opposite is asleep already, Paul, next to him lies
motionless and mute, and Ben at the far end seems to be ranting about something
in a South African accent, after listening to him for a few minutes I decide
he’s clearly off his tits and decide not to bother engaging in any conversation
with him. The patient in the bed next to me has just been carted off by the
porters for his radiotherapy so it looks like I’m not going to have much
conversation. Thankfully, I have a fully charged iPhone, a Twitter account, and
friends in America on a different time-zone who I can talk to through the
night. My online friends turn out to be very helpful as sleep evades me all
night.
My friend Sandra in Seattle is entering a cribbage contest
this evening so she keeps me posted throughout the night on her progress. Meanwhile,
Liz in San Francisco is booking a trip to Alcatraz island. I’ve always fancied
visiting San Francisco so she too keeps me updated with her progress through
the night. Later in the night Ben seems to have got out of bed and is wondering
around the ward aimlessly, fortunately the nurse, who realised he was looking for
the toilet, intercepts him and quickly points him in the right direction before
he could relieve himself somewhere less convenient. I’m a little worried about
going to sleep after that for fear of being accidently pissed on by a befuddled
South African. My twitter friends are however keeping me amused and I also
receive a rather curious email from the executive editor at Rutgers University
Press who wants to talk to me about the possibility of publishing this blog.
I’m quite flabbergasted. Although I’ve structured this blog like a book on the
off-chance a publisher may pick it up, I never seriously expected that to
happen. I started writing this blog for many reasons but fame and fortune where
not among them, not that a book deal is very likely to give me either of those.
I started writing stuff down for a number of reasons. Firstly, I find it quite
therapeutic and a good way to organise my thoughts. Secondly I decided I wanted
to be quite open about my illness, as I find that an easier way of dealing it,
and I’m keen to raise a bit awareness around kidney cancer. My cancer is not
one of the most common cancers and I had no idea what a possible cancer care
path might involve, hence I was keen to share it with anybody who might be
interested or indeed setting off on their own cancer care path. The third and
more narcissistic reason is to record a bit about me that perhaps may outlive
me and possibly be of interest to my children and even one day, grandchildren.
I may never meet my grandchildren, if I ever have any, but it’s comforting to think
they may be able to read this to understand who their grandfather was. The
final reason why I write this blog is because once I started, my mother kept
nagging me to carry on, carrying on is therefore by far the easiest option. I
have no idea whether this email from a potential publisher will ever amount to
anything, but it’s a nice thought to ponder as I lie here with my comatosed and
crazed cohorts.
Daylight finally breaks from the conveniently positioned
window and I anticipate that the ward will soon begin to bustle with activity.
It does. More nurses arrive, cleaners start busying themselves around any
possible nooks and crannies that could conceivably harbour any germs, and the
breakfast trolley arrives. After breakfast the nurse comes on her rounds and
asks if she can take a look at my arse. I assume her curiosity is down to
professional rather than personal reasons. It turns out she’s worried about the
patients’ pressure points getting sore due to all this lying around in bed. My
arse, as it happens, is proclaimed to be in tip-top condition so no treatment
is necessary. However, as the bottom inspectors make their way around the ward
I over here that many many of my fellow patients seem to have failed the bottom
inspection and now have to have some kind of ointment rubbed into their rosy arse
cheeks. When the bottom inspectors work is done I get my first visit of the day
from a doctor. He tells me that I have been registered with the respiratory
department and someone should be around to see me as soon as they are free. I’m
hoping they come fairly soon so I can be out of here by lunchtime, but I guess
they may have a few other people to see first.
Tori won’t be coming in until a little later today because
today is results day for the boy. Tori needs needs to take him into college for
the last time to pick up his grade for his Art Foundation Course. His grade is
actually quite academic as he has already accepted an unconditional offer from
Loughborough University, but we’re all keen for him to have done well anyway.
At 11am I get a text from the boy informing me that he has got a distinction,
so I offer to take him out for a meal tonight to celebrate, even if the
respiratory team don’t come until this afternoon, I should still be out in time
to go for a meal.
The patient in the bed next to me never returned after he
was wheeled away last night so a new patient, Aubrey, is slotted into the space
next to my bed. Observing my fellow inmates, I realise why there wasn’t too
much of a party atmosphere in the ward last night. David opposite me was unable
to tell the nurse his date of birth and isn’t aware of where he is. I consider
myself to have been through a fair amount of turmoil over the last 18 months
but at least I’ve remained mentally alert throughout it all. David’s wife has
come to visit him now and it sounds like is gradually coming around to his
situation, I hope he’s back to normal soon. Both Paul and Aubrey are unable to
move from their beds without assistance from the physiotherapy team and a large
metal contraption that looks like a complicated sack trolley. Ben on the end can
at least move about freely, but after last night’s antics I rather wish he
couldn’t.
There’s no sign of the respiratory team but I’m visited once
again by a doctor who assures me that I’m on the list and that they should be
here this afternoon. Tori arrives after lunch and hunkers down in the chair
next to my bed to wait with me for the repository team. My eyes become very
heavy in the afternoon after my sleepless night and I feel bad that I spend
most of the afternoon dozing as Tori sits patiently in her chair and sews and
crochets.
By 5pm I’m starting to get concerned that the respiratory
team will be going home soon and I may have taken up this bed all day for no
reason. I ask Alice what time they finish for the day, as if they finish at
5pm, I’d rather just go home and come back and try again tomorrow. After a
sleepless night and long and tedious day on the ward I’m starting to get a
little frustrated. Alice makes a few phone calls to try and find out if the
respiratory team still plan to visit. She spends half an hour ringing around
but despite her best efforts she is unable to confirm if anyone is actually
coming or not. Alice eventually finds me a doctor who apologies for the delay,
but assures me I’m on the list but I will have to stay another night and wait
for the respiratory team to come and see me tomorrow. I remain calm and polite
but without raising my voice make my displeasure clear. Having to spend another
night with the living dead does not fill me with excitement.
At 8pm Tori eventually gives up and goes home to tell Peter
that we can’t celebrate his results tonight. I settle down hoping that my
tiredness may at least allow me to get some sleep tonight. I hadn’t however
counted on Aubrey’s snoring. During my various hospital stays over the last 18
months I’ve heard quite a variety of snoring. I’ve endured various volumes and
techniques of snoring but none of them could possible match Aubrey’s mastery of
the art. He posses an expansive range of snores and a volume switch that Nigel
Tufnell would be envious of. At 1pm I realise that sleep, is once again, not on
the menu. I walk out of the ward, unchallenged, and find a chair in the waiting
room outside where I recline with my head against the wall trying to catch a
quick forty winks. After an hour or so I head back to the ward in the hope that
Aubrey has run out of steam. I get back to the ward to complete silence and
climb back into bed. Aubrey was however just toying with me, as soon as my head
hits the pillow he embarks on a new snoring overture he has just composed and
is delivering with a gusto that I thought his frail figure would be incapable
of.
At 6am Aubrey awakes and I clearly must have fallen straight
to sleep as the next thing I know it’s 9am and the breakfast trolley is serving
cornflakes and porridge. After breakfast the bottom inspectors make their
morning rounds and cream is once again applied to the backsides of most of my
fellow patients. My pristine arse however escapes inspection today. Having not
made the cut for the lung drain yesterday, I’m hoping I must be fairly near to
the top of the list today. Tori arrives at about 10am and settles herself down
in the chair once again for a day of sewing and patient watching. David
opposite seemed to be getting his senses back last night and was having a very
lucid conversation with his visitor but he has sadly once again descended into
not knowing where he is. Paul is bundled onto his physiotherapy trolley,
Hannibal Lecter style, and encouraged to stand up straight before being lowered
into his chair for a bit. Aubrey has a busy day of consultations and
radiotherapy and his bed is constantly being wheeled away for his various
sessions.
At lunchtime, I finally get my first doctor visit of the day
and by now my only question is for information on the illusive respiratory
team. Once again, the best he can offer me is that I’m on the list and they
should be here as soon as they are free. I think I might be starting to get a
bit of a reputation know as an awkward patient, but all I really want is some
reliable information of when the respiratory team will come and see me. I
appreciate that they may not be able to give me an exact time slot, but an idea
of what day, or hopefully even whether it will be morning or afternoon would
make the wait more bearable.
Alice isn’t on shift today but Debbie seems to be running
the show today. By 3pm I ask Debbie if she can check with the respiratory
department to see if they plan to come today or not. She is unwilling to do so
and is understandably preoccupied with a number of patients in a far more
critical condition than me. I decide to try and contact the respiratory
department myself and google them on my phone to find their number. I get
through to the administrator and explain that I’m an in patient in ward D2
awaiting a visit for the respiratory team to drain some fluid from my lung and
can she confirm roughly if and when they expect to be with me. I give her my
details and she looks me up on the system and confirms that I am not on their
list. I’m getting seriously unhappy now. I hate being the awkward patient that
makes a fuss, but I am just here for a straight forward procedure that only
takes half an hour and I’ve waited around for two nights and two days and now
have lost all confidence that I’m even going to be seen at all. Everyone is
being very helpful and I remain steadfastly polite, but everyone seems to be
following a predefined script that is not quite working out in this particular
scenario. I’m grumpy with the system, not the staff.
At 4pm Debbie comes to see me and tells me that they need my
bed for a more critical patient. The room I am in is next to the nurse’s
station and I think is the location of the more serious patients that the
nurses need to keep a closer eye on. I am therefore being moved to the other
end of the ward into a quieter room. I’m perfectly happy to give my space up to
a more needy patient, but if I had been seen a little quicker I would have been
out of their way by now. I’m ushered into the waiting room while the beds are moved
about. There’s only an hour left now before the respiratory department
presumably go home so I decide to wander down to the other end of the hospital
myself just to see if there’s any chance of a visit today. I introduce myself
to the receptionists and she goes off to find somebody to help me. The
extremely helpful doctor who performed my lung drain last time comes out an we
recognise each other. I ask her why I was told by the respiratory department
that I was not on the list but told I was on the by my ward doctors. She
clearly explains that there is more than one list. The ward did not actually
register me until 10am on Wednesday morning but since then they have been very
busy all day with other patients who were registered before me. They have also
been extremely busy today because they run an out patient day clinic on a
Thursday so that patients can come in and have a lung drain without any need
for a hospital stay. I would have been better off being booked in as an
outpatient and simply attending the Thursday clinic. Useful information should
I ever need the procedure performing again. She then tells me that they have
seen all of the outpatients booked in today and they are currently with another
in patient, but I am next on their list and will be round later this afternoon.
Having finally got some good clear information I walk back
to my ward and find my new bed. My new fellow patients seem a lot perkier than
the last lot on desolation row. I settle into my bed content that I know now
what is happening and confident in being seen later today.
At 5pm I’m visited once again by the on-call doctor for the
ward. I think the respiratory department might have been bending his ear after
I had been making a nuisance of myself by contacting the respiratory department
myself. He confirms the information I found out on my little reconnaissance
jaunt. It is however now home time for the respiratory team so I’m starting to
get a little concerned that it might be getting a little too late now.
At 5:30 two new doctors amble into the ward and they make
their way to my bed. “Mr. Jago?”, they enquire. “That’s me, the complaining
patient from D2.”, I confirm. The wry smile on their faces confirm that my
reputation has indeed preceded me. They ask me what they’re expecting them to do
and it coincides with what they think they’re going to do. Tori asks if I will
still be able to go home this evening and he confirms that it will be alright
with him but they will need an oncologist to confirm my X-ray results following
the procedure before they can let me go and that might be a little tricky given
the current time. “Never mind”, I said, “I’m very pleased that you’re here so
I’m happy to carry on regardless.”
The curtain is drawn around me and the furniture slightly
rearranged to enable the doctors better access to me and their ultrasound
machine. I perch on the end of the bed and rest my arms on a pillow mounted on
my bedside table so they can easily access my side. The first step is to take a
look inside me with the ultrasound scanner. I’m daubed in a cold jelly and the
hand held scanner pressed to my side. The scanner reveals a large quantity of
fluid on the lungs, as evidenced previously by the X-ray. It’s a little more
fluid than the doctor expected and he says that perhaps he’ll drain off 2
litres off rather than the more normal 1.5 litres. Having located the best
point for entry a cross is drawn on my side in pen. I’m then injected with a
local anaesthetic to numb the area, there is a little pain as the needle probes
deeper and new nerves are reached, but nothing too bad. The doctor probes
around a little to make sure there is no pain and asks how I’m feeling. Unable
to resist quoting some Pink Floyd I tell him that “I have become comfortably
numb”. “Is the right answer”, confirms the clearly Floyd appreciating doctor. A
thin needle with a pipe attached is then inserted and the fluid begins to drain
out. At first it’s a little bloody, but it soon starts to flow through the
colour of Stella Artois.
The doctor talks to me as the fluid drains. We discuss my
upcoming trip to Lindisfarne and the doctor explains some more details about
the mechanics of the procedure I am undergoing. At 1.5 litres he asks me how
I’m feeling and asks if I’m happy to carry on to the 2 litre mark. I’m anxious
to get as much of this lung piss out as possible so ask him to please carry on.
The straw coloured liquid continues to flow freely and after we’ve hit the 2
litre mark the doctor turns the tap off and stems the flow. He gives me the bag
to hold to feel the weight of the fluid drained off me. Two kilos is a fair
amount of weight to loose in 15 minutes. Tori takes a brazen snap of me holding
the bag as it’s such a relief I want to capture the moment for prosperity.
There was a little bit of blood in the initial drain that has discoloured the
bag that now looks somewhat like an oversized vacuum packed beef stock pouch.
Relieved of my lung gravy |
Once drained of the appropriate amount of fluid the doctor
slowly withdraws the needle at the head of the pipe and shows me what he has
just rammed into my side. I’m rather pleased he showed it to me afterwards and
not before as it is not an insignificant piece of equipment. I’m bandaged up
and although the respiratory doctor is happy for me to go home, I can’t be
discharged until I have had another chest X-ray and it is checked by an
oncologist. A simple enough procedure but at 6:30pm now seems like it might be
hard to find the staff. The respiratory doctor assures me he will do we he can
to now expedite my departure this evening. I thank him for staying late to get
this done and bid him goodnight. I’m feeling instantly better and am able to
take much deeper breaths already which is making me far less grumpy. As much as
I’d love t go home tonight I am primarily relieved that the procedure has finally
been completed.
My new nurse comes to see me and gives me a cardboard bowl
to urinate in. I’m not quite sure why they now need to monitor my urine but it
seems like he too has a script to follow and I’ve caused enough fuss already so
I quietly acquiesce. I ask if its OK for me to walk down to the X-ray
department to get my X-ray as I know where it is and I’m feeling fine now. The
correct procedure is however to wait for the porter to come and take me down to
the X-ray department in a wheelchair. I agree. It looks like I’m going to have
to follow the correct protocol which will probably mean one more night in
hospital. Oh well. Five minutes later however the respiratory doctor who
drained my lungs reappears, I thought he would have gone home by now. He’s
clearly been talking to the nurse and says I’m free to walk down to the X-ray
department and get my chest X-ray without the assistance of the hospital
porter. He say’s that if we are able to get an oncologist to check the X-ray
tonight he is happy to discharge me and get the formal paper work filled out in
the morning. Most accommodating. I happily wander down to now deserted X-ray
department but manage to find a junior doctor on his way out for dinner. It’s
not his department, but he kindly slips behind a locked door to tell one of the
radiologists that they have a new punter. The radiologists pops out and says he
will be with me shortly and asks Tori and I to take a seat in the waiting area.
Within another five minutes the radiologists reappears and I’m ushered into the
X-ray room. My limbs are gently manipulated into position like one of those
wooden artist manikins and my X-ray is taken. The radiologist tells me that the
image is now on the system for a doctor to check. If can just find an
oncologist, I might just be able to leave tonight after all. It’s not too late
to get a table at my favourite Indian restaurant to celebrate my son’s results.
As I walk out of the X-Ray department and make my way to the
stairwell (I think my newly drained right lung can now handle a single flight
of stairs), who should be coming out of the oncology day centre but Dr.
Wheater. I wave and he says hello but he has a look on his face to suggest he
didn’t expect me to still be in hospital on Thursday night. He’s coming towards
us so we wait so I can thank him for arranging to get me in for this lung drain
and tell him that it has just been completed. As Dr. Wheater approaches I tell
him that I have now had my lung drained, have just been for an X-ray to check
everything is OK and am now on my way back to my ward. “I’ll come up with you”,
says Dr. Wheater kindly, “so I can take a look at the X-ray and hopefully get
you on your way tonight”. That was a spot of luck. As we walk up the stairs Dr.
Wheater says to me, “I hear your famous.” Oh dear, I immediately think to
myself, my impatience and nagging this week has got me a bit of a reputation.
“I hear you have a blog about your cancer”, continues Dr. Wheater. “Oh. yes”, I
said much relieved, “I have been writing a bit about my cancer journey for my
blog but don’t worry I written very favourably about you.”. He doesn’t seem too
annoyed with me, and explains that he was sent a link by another doctor who has
come across my blog. We make our way back to my ward and Dr. Wheater logs in to
one of the computers and calls up my recent X-ray which he is able to compare
with Monday’s X-ray. My right lung is slightly bigger than it was on Monday but
it is still half the size of my left lung. The difference I can feel seems
bigger than the difference between the two images but it is what Dr. Wheater
expected. He zooms into the X-ray to look for any air pockets that may have got
into the lung. There don’t appear to be any and Dr, Wheater is happy for me to
go home.
I thank Dr. Wheater again and draw my curtains around my bed
so I can change out of my pyjamas. Once dressed, I pick up my bag and head for
freedom. The nurse catches me in the corridor and has prepared my discharge
papers already. What an incredibly efficient last two hours I have had, shame
about the preceding forty-eight. I thank the nurse and get into the car. As
Tori drives off I ring the boy and tell him we are on our way home and that we will
be going out to our favourite Indian to celebrate his results.
Note 1:
I regard the NHS as a truly remarkable, world class health
care organisation, criticising it is not something I feel very comfortable
doing. In this week’s chapter however I certainly ran into a several problems
with some of the NHS systems and protocols, and I’m sure many other people have
been frustrated at times by them too. Nonetheless, the staff throughout my stay
in hospital were helpful, caring and highly professional whilst remaining
within the parameters of their roles and correctly prioritising the most
critical patients. I may have been frustrated by this particular hospital
visit, but I still believe that the NHS provides the best possible care
available. Indeed, with government cuts and attempts at privatisation it is
utterly amazing how great the NHS remains.
Note 2:
Sadly the potential book deal mentioned in this chapter seemed
to fizzle out. But I’m still open to offers.
Your blog is well worth publishing. I hope someone wakes up and notices!
ReplyDeleteIt proved to be Very helpful to me and I am sure to all the commentators here! stage 4 mesothelioma
ReplyDeleteIt's a fascinating read mate. I love your writing style.
ReplyDelete