"Cancer, like any other illness, is a bore." - Alan Bennett
I’ve received another letter from Southampton Hospital asking me to go in and see Dr Alzentani yet again as part of the pre-checks for my up coming pleurodesis operation. I’ve already been in twice for 2 lengthy examinations and consultations and I’m not really sure what else he has left to check or tell me that he couldn’t do last time. Tori rings up to query the necessity of yet another hospital visit, but the chap she speaks to is most insistent that we we need to come in once again as Dr Alzentani apparently needs to talk to me again. We arrive at our planned appointment on Tuesday morning at the allotted time. After signing in at the reception desk a nurse comes out to great us and explain that they have no idea why I have come in today. I explain that we too have no idea but the hospital was most insistent when we queried it. The nurse says that as I’ve travelled an unnecessary 60 miles to be here Dr. Alzentani has kindly consented to see me anyway in case I have any questions, otherwise I am free to go. I do have some questions for Dr. Alzentani as it happens so I take him up on his kind offer.
Tori and I are ushered into Dr Alzentani office and he spends five minutes apologising for the mix-up and explaining the inflexible hospital protocols and procedures that has inevitably led to this confusion. I’m not at all concerned about the mix up and I’ve become very familiar with the NHS red tape now so I’m not annoyed. Indeed, I’m quite happy to have the opportunity to have a quick chat with Dr. Alzentani as my condition has considerably worsened over the last week and I’m a little concerned that I’m not going to be able to hold out until next Monday when my planned operation is. Amongst my wheezes and heaving breathing I manage to ask Dr. Alzentani if he has any concerns with me making it until next Monday without a previous intervention of some kind to re-drain my fluid filled lungs . He seems genuinely concerned by my breathing problems and sends me off for a chest x-ray post-haste before making a decision. A porter duly arrives in a chair and whisks me away to the x-ray department. I probably could have walked, after all I walked here, but it seems easier to take a ride with the porter.
After my chest x-ray I return to the waiting area outside Dr. Alzenatni’s office to see if he wants to do anything before my operation next Monday. The nurse comes out of the doctor’s office and informs me that Dr. Alzentani has looked at my latest x-ray results and has admitted me to hospital. There is a bed is being prepared for me on E ward so I can have an emergency lung drain straight away. I haven’t seen the image from my recent x-ray, but I think I can assume from this update that it doesn’t look too good. Tori and I wait around for around 20 minutes waiting for confirmation of my bed before the nurse suggests we go and get some lunch and she’ll ring me on my mobile when my bed is ready. We head slowly downstairs to the canteen and just as I’m opening my prawn sandwich my phone rings to tell me to come up to Ward E as my bed is ready for me. I quickly wolf down my sandwich and head up to ward E where a respiratory doctor is already waiting for me. I sit on the edge of my bed, the curtain is pulled around us and the doctor proceeds to scrub up and lay out her various instruments ready for the procedure. She doesn’t appear to have an ultrasound machine like they have used in the past so I raise the subject with her. “Not necessary”, she replies, “I can hear where the fluid is by simply tapping your side.”. She obviously knows what she’s doing and I’m perfectly happy for her to crack on so within five minutes of being on the ward, she’d administered the local anaesthetic and gouged a hole in my side with her scalpel and inserted a thin tube into my right lung. The straw coloured liquid immediately starts to flow and I can also feel a few warm drops as they slide down my side. “How much shall we drain off?” she muses aloud, “A litre or a litre and half?”. I suggest as much as possible and she reminds me that she needs to leave a fair amount for the operation next week. I tell here that they drained 2 litres off recently and it seems to be full again so she agrees to drain off 1.5 litres now. Once the target drainage has been agreed upon she rushes off to deal with another patient and the ward nurse is left in charge of ensuring the correct amount is actually drained off. The nurse has been instructed to drain the fluid off in spurts of 500ml and then give me a twenty-minute break before draining off the next 500ml. The nurse clamps the pipe when we reached the 500ml mark and I’m left alone with Tori for a while before they drain off some more. The nurse dutifully returns every twenty minutes and removes the clamp until the appropriate amount is drained off. After the third and final 500ml the tube is pulled out and I’m stuck back together again.
Last time I had this procedure done I had to wait around in bed for 3 days before anyone turned up to do it. I’m most impressed with Dr. Alzentani ability to get things done so quickly. I’m sent for another x-ray to compare with the previous one and once a Doctor has inspected it ten minutes or so later I’m discharged from the ward and free to go home. The fluid drained, as always, makes a big difference and I can take slightly deeper breathes again giving me the confidence that I will now be able to last out until next Monday when I have my full pleurodesis operation.
The following day however, and it feels like the fluid has pretty much built back up again. I can’t possible go back to the hospital again, I’m just going to have to wait until my operation. I spend the day in a chair so as not to overly exert my lungs and start to count the days down until my operation next Monday.
On Thursday I have an appointment at Salisbury hospital to see the gastroenterologists. The appointment was requested by Dr. Wheater about 10 months ago when he had concerns that the pazopanib was having a detrimental effect on my pancreas. I’m not really up to another trip to hospital, but I’ve waited so long for this appointment I feel like I really shouldn’t miss it. I’m not however up to driving so Tori bundles me into the front of her car and sets off. We stop off at Tesco’s as Tori needs to get some shopping in. I’m not up for a walk around Tesco’s so I remain in the car as Tori heads off to get the required groceries. A minute after she’s left and the car detects the fact she hadn’t locked the doors and automatically locks them for her. No matter, I have busied myself crushing some candy on my iPhone while a wait for Tori. After a couple of rounds I get bored and put my phone away. It’s getting a bit airless in the car now so I press the button to wind down the windows. Nothing happens because Tori has taken the keys with her and the windows wont work unless the ignition is on. I try the window on the driver’s side, but that doesn’t work either. I try to open the door expecting that opening it from the inside would override the lock, it doesn’t and the door remains steadfastly locked. I lean over to the driver’s side again and press the button to unlock all doors. Nothing is happening, the car has imprisoned me and my one functioning lung is failing to find enough air in the car and I start to panic. I gasp, wheeze and splutter in vain before thinking the best thing to do is probably to try and remain calm and breathe as normally as I can. As I’m trying to calm myself I see Tori emerge from the supermarket with her trolley full of shopping and I go back into panic mode. I bang on the windscreen as hard as I can with my hands and feet but no one sees me. Eventually Tori saunters over with the shopping and opens the boot. I start banging on the side windows and finally she spots me and unlocks the doors. I open the door and spill out onto the car park floor gasping for life. I really do need to get a sticker for Tori’s car that reads “Husbands die in hot cars”. It takes me twenty minutes to regain my breath and for Tori to convince me to get back into her car.
We eventually arrive at Salisbury hospital and after a short wait I’m called into the gastroenterologists office. I try and tell him my recent medical history, but I’m unable to talk properly as I simply can’t get enough air to speak. The doctor acknowledges that I have clearly got much more pressing problems than the one I have come to see him about so he suggests getting a blood tests and making another appointment for a few weeks’ time when they have sorted my lungs out. I shuffle out of the hospital, still gasping for air, feeling like that was a total waste of time.
Friday, and I’ve only got three more days to hang on before I can go into hospital for my operation. I spend the day in bed as I’m finding moving about more and more uncomfortable now and the slightest movement is leaving me quite breathless. Every now and then the Times publish a list of the 100 greatest novels in history and I’m always a little embarrassed that the list contains so many novels that I haven’t read. Every now and then this gets to me and I’ll read a couple of classic novels. Being stuck in bed seems like a perfect opportunity to catch up some more. I’m not really capable of holding a book, but I can download an audiobook and listen to that. I therefore spend the afternoon with Mark Twain and his account of Huckleberry Finn’s journey down the Mississippi.
Saturday is Tori’s birthday. We had planned to go out somewhere and have a meal but that is clearly no longer an option so I spend another day tucked up in bed with Hucklberry. I’ll take Tori out for a meal after my operation.
On Sunday I have become locked into one position and cannot even sit up. I’m now worried how I’m going to get to hospital as I don’t think I’ll be able to sit in the car. I’m currently lying on my right side so the fluid in my right lung is pushing down on the bed. If I lie on my back or my left side, the fluid pushes against my good lung and I can hardly breathe at all. If I sit up the fluid weighs down on my other organs and causes more discomfort. Tori and I decide we need to call an ambulance and get me into Southampton Hospital a day early so at least I’ll be there and they should be able to make me a little more comfortable that I can manage at home. Tori rings 111 rather than 999 as she feels its not probably an emergency worthy of a 999 call. Tori talks to the call taker on the other end of the phone, but my condition does not seem to align well with her predefined set of scripts and so the supervisor is called for. She too is unable to find a suitable script and so eventually a Doctor capable of making a non scripted decision is found. The doctor agrees that I need to go into hospital and that I need an ambulance. She rings the ward at Southampton General hospital and arranges with them for me to go in today and then she arranges an ambulance that will take me to Southampton hospital (60 miles away), rather than my local hospital in Salisbury.
After 4 hours however, the ambulance has not arrived due to higher priority calls. Tori rings 111 again and gets hold of the same doctor who manages to bump me up the priority list and after another hour the ambulance finally arrives. It’s a very uncomfortable journey in the ambulance, I’m strapped to the trolley leaning on my right side while Tori and my children follow along behind in the car. I’ve not eaten for 3 days so I have nothing to throw up and have to content myself by filling the cardboard puke hats with a nice yellow bile that I seem to be summoning up from somewhere deep within me. The ambulance crew are from Swindon and are unfamiliar with Southampton Hospital so after we arrive I direct them up to Ward E. My bed is waiting for me and I’m transferred into it. I was hoping that they might perform another quick temporary drain but its almost midnight now and I suspect they’ll just settle me down ready for my operation first thing in the morning.
Surprisingly I do manage to snatch a few hours of sleep during the night and by 6am I’ awoken as the ward is bustling already. I am told that I have been bumped up the list from number 4 to number 2 and that I should therefore be going into theatre at about 10am, so its just a short wait now. At 8am patient number 1 on the list is wheeled off to theatre and I’m told that I will be next. Because of my operation I have a nil by mouth sign on the bottom of the bed so the breakfast delivery trolley passes me by. I’m not hungry anyway I’m just happily waiting for my operation.
At 10am my bed is wheeled into the operating theatre and I’m asked to move onto the operating table. I’ve been so desperate to have this operation that I’d completely forgot to be nervous or anxious about things, now that I’m in the operating theatre I’m starting to get a few butterflies. I move off my bed and onto the operating table. I can’t however lie on my side on the operating table so I’m in a great deal of discomfort, a mask is put over my mouth and I breathe in as best I can. They ask me If I am in any pain and I confirm that I am, I’m asked to breathe again and then that’s it. I’m out of it.
I awake in the dig room on Lindisfarne in the middle of my daughter’s archaeological dig. Although I’m quite clearly in the dig house on Lindisfarne the bloke standing next to me insists that I am actually in the recovery room and my operation has finished. I’m not sure if I believe him or not but I suddenly notice that both my lungs are working and I’m breathing properly for the first time in months. At present the anaesthetic hasn’t worn off so I’m in no pain whatsoever I just lie their savouring each lung full of air. I must have dozed off again as the next thing I remember is that I am back on the ward. The anaesthetic is still holding and I feel amazing, at this rate I’ll be able to go home soon and get on with life again. Later in the afternoon however and the anaesthetic has worn off and I feel like rather than having just had an operation the doctors have spent the time just been beating my ribs with a baseball bat. I have a cannula fitted on my right wrist however that is hooked up to a morphine dispenser. All I need to do is press the button and it will automatically release some morphine into my cannula. I’m told there is a safety mechanism fitted to stop me overdosing so I decide to test it by continually pressing the button to get as much morphine as possible before it eventually beeped telling me I’ve had my limit.
I keep my morphine button close to hand over the afternoon and although it was supposed to be removed in the evening the ward nurse allows me to keep it for the night. I make good use of her kind offer. In addition to the morphine cannula in my right arm I have a second cannula in my left arm (should they need to pump me full of anything else), and I have a thick pipe sticking out my side and flowing into a bottle of yellow fluid. The bottle is also fitted with a suction pipe attached to the wall to ensure the pipe only drains fluid and does not suck anything back up into my lungs. This assortment of plumbing means that although I can get out of my bed, I can venture no further than the chair beside my bed before my various pipes and hoses are at their limit. I’m therefore unable to make it to the toilet and a number of cardboard bottles have to be left as an alternative.
The patients on the ward seem to have swapped around somewhat since my arrival and only one of the original patients here when I arrived on Sunday night is still on the ward by Tuesday morning. Gordon has in fact been here for 3 weeks already and shows no sign of leaving anytime soon. From our fourth floor ward we have a large series of windows that look out over Southampton. There’s a dome thingy in the distance that Gordon likes to remind us is next to his house in Marchwood. Gordon, like most of the patients in this ward (expect me and Eric) is a cardiac patient. He too require an operation but I think they are waiting for his health to improve before he’s up to it. Despite living in Marchwood, Gordon’s accent immediately gives him away as a Yorkshire man. He tells me that he moved down south when he joined the army many years ago and has remained down here. He has a large family including 4 sons, a daughter and many grandchildren many of which seem to be constantly popping in to see how he’s doing. Although rather like Ken last year, he takes quite a shine to Tori and asks when she’s coming to visit me again.
Next to Gordon we have another new patient called Mark who is here after his inbuilt defibrillator went off a couple of times for no apparent reason. He’s been flown in from Guernsey so they can plug him in and run a few diagnostics on his software to see what is setting off his defibrillator. Next to Mark is Eric. Like me Eric seems to be having a few breathing issues but they don’t seem to have taken him away from an operation yet. On my side of the ward we also have two new patients whose names I have not yet learned as they have been mainly talking amongst themselves. The main topic of their conversation seems to be taken from the Daily Mail Book of Common Scientific Misconceptions and I feel that any conversation would be simply correcting their misconceptions which I suspect they may not be grateful for and are more likely to misconstrue as arrogance on my part. As their conversation ensues I’m rather glad I didn’t intervene as they move onto politics and they turn out to have rather unpleasant far right views that I don’t have the energy to argue with. The chap in the bed next to me it turns out will not be happy with simple reintroduction of capital punishment unless it is accompanied by the denial of a free trial, which is apparently pointless anyway for these scum. I decide to simply ignore the patient next to me apart from the occasional hard stare when he looks in my general direction.
On Tuesday afternoon Dr. Wheater pops up to see me. I was supposed to be attending his clinic tomorrow but I guess he’s heard I’m on the ward and decides to fit me in now. He looks through Dr. Alzentani’s notes from yesterdays operation. There doesn’t seem to be anything extraordinary. He notes that a biopsy has been taken and that I should have a results next week. It all seems pretty academic though, we already know I have stage 4 renal cancer and malignant tumours in lungs, liver and tummy, what worse information could the biopsy result give me? Dr. Wheater confirms that it is now time to give up with pazobanib and move me onto the second-line treatment. As we previously discussed he wants to try me on a relatively new immunotherapy drug called nivolumab. He’s already explained that there’s only a 25% chance of the drug working and now he tells me that even if it does work I am unlikely to see any results for at least the first few months. I’m still happy to go ahead with the treatment though so Dr. Wheater say’s he’ll go and book me in for my first two transfusions. He heads back to his office and returns half and hour or so later with news that he has booked me in for my first treatment session a week on Wednesday and then another one two weeks later. The good news however is that as I live so far away I shouldn’t have to come in every fortnight for my treatment, I should be able to get a nurse to visit me home and give me the immunotherapy intravenously. I’m holding out a lot of hope for the second line drug so I’m really hoping for a change in my fortunes with this medication.
On Wednesday morning after singing the praises of President Trumps Sabre rattling rhetoric against North Korea, the far right patient ironically on my immediate left is taken away for surgery. It turns out he’s having quite major heart surgery today and is likely to be in intensive care for a few days afterwards so we’ll probably be getting another new patient in. I’m keen to be going home soon now that I can clearly breathe again even though I am quite a bit of discomfort around the chest. I’m visited by the doctor on his morning rounds, and after giving him the best cough I can muster his advice is for me to remain here from one more day and remove my drain and send me home tomorrow. Keen as I am to leave, if he has concerns worthy of keeping me here another day, I’d rather just go along with it rather than jeopardise my treatment by leaving too early. It’s just as well I didn’t go home today because the excitement level builds on Wednesday afternoon when the hospital radio team make a visit to harvest a few musical requests from E Ward for tonight’s hospital radio request show. I’m asked if I have any favourite songs that I would like played on tonight’s show. The hospital radio team consists of two volunteers, the first of which seems to be a Tommy Saxondale lookalike and the other his glamorous young lady assistant. I have lots of favourites songs I tell the assistant but I think I would like to hear “Dazed and Confused” by Led Zeppelin. She doesn’t seem to recognize the song but writes it down on her list anyway and assures me that they will be able to find it.
By 8pm Tori has gone home for the day and I settle down for what should be my final night in hospital. At 8:30 however I put on my headphones and plug myself into Hospital Radio to see what my fellow patents on E Ward have selected for tonight’s show. Things get off to a very good start indeed as Margery from E Ward has requested “Wish You Were Here” by Pink Floyd. I had worried a little about the musical tastes of my fellow patients but Margery has given me hope with her fine selection. Jeff selects some Johnny Cash and Stephen goes for “Rocket Man” by Elton John. I always preferred Kate Bush’s cover to the original but so far the patients aren’t doing that bad. Whenever Saxondale hits upon a request he knows something about he blethers on for ages imparting his musical wisdom. He seems to know a great deal about Reg Dwight and Bernie Taupin so the introduction to “Rocket Man” is rather lengthy. It all seems to go down hill after that though as we are subjected to some Barbara Streisand and then some god-awful dirge from Les Miserable. I’m still waiting for my Led Zeppelin, but next up is Maurice. Maurice didn’t have any songs he could think of but asked if they could play him a nice hymn instead. Not wishing to let Maurice down a search of the hospital radio archives has thrown up a copy of Harry Seacombe singing “The Lord’s My Shepard”. If I wasn’t plumbed into the wall I’d have gone and found Maurice and given him a piece of mind. With the exception of “Take it Easy” by the Eagles the following songs are equally dire and hard to make there way through, but I’m not giving up until I’ve had my Led Zeppelin. The last song of the show and finally my name is mentioned. The DJ has no interesting talk on Led Zeppelin to offer his audience but at least has the decency to finally play my song. As the thundering bass line, rolling drums and screeching blues guitar wail out across the hospital airwaves I feel like I am finally having my revenge of Maurice.