"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.
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.