In Trouble Again

It's Friday. I've calmed down somewhat from the stress of earlier in the week, and I'm getting used to the routine. I turn up, wait in the big waiting room, then the radiographer (who always introduce themselves, first name terms, which is nice: Kathryn or Pira or Claire or Colin or...) take me through to the little waiting area. Then it's through the double doors, round the bendy corridor to the RT machine. Kit off, on couch, some realingment of me on the couch then ZAP!!

But on Friday I went through the bendy corridor to the RT machine and saw two people I'd never met before (a man and a young woman) standing in a corner. She was doing stuff, while he watched. I waited.

After a moment, the radiographer said, "Are you all right Carol?"

I replied, "I'm sorry, I just don't like getting undressed in front of people who haven't introduced themselves."

I got sent to the naughty room.

Of course I didn't. The radiographer introduced them immediately, I got my kit off... all continued as normal.

But it was interesting to note that the 2 newbies were a student radiographer and her male trainer. What? Courtesy and respect weren't part of that module?

Trust Me I'm a Doctor: Part 1

I was stressed going in Monday morning, 10th September.  Partly because I was on my way to my first radiotherapy session, again: scary. Also because the appointment time had been changed as “Dr Carnell would like a word first”. No-one likes to hear the phrase “The doctor would like to see you” – it’s inherently scary, too. Still, Godfrey and I reasoned that she probably just wanted to apologise after the balls up last week. Dr Carnell’s Registrar Dr Khan plain forgot to let us know the first treatment  the previous Monday had been cancelled, and so we wasted a fraught trip to London to face the unknowns of radiotherapy for nothing.

An apology? What were we thinking? Dr Carnell explained the reason she wanted to see me was that the proposed treatment had been changed.  The only thing she said, to acknowledge the grief we'd been put through, was “I gather you were messed around last week, but I wasn’t here” Hmmm. I always thought that the buck stopped with the Head of the Clinical Firm, and ultimately the actions of any of the staff in the firm lay with the Consultant in charge regardless of whether they were in the vicinity.

When Godfrey and I first met Dr Carnell, around 6 weeks post-surgery, she  said I needed to have the perimeter of my right lung bathed in radiation using IMRT “which is ideal for this kind of situation”. She described in glowing terms (oh yes, pun definitely intended!) the benefits of IMRT over the conventional, conformal radiation and explained how rogue cancer cells could be lurking anywhere where the tumour had touched my lung or chest wall. That’s a big area: from my collar bone down to the base of my ribs, then sweeping out to the right.

She explained that side effects with IMRT are in general, less severe than for conformal radiation. The radiation is beamed at the target areas from thousands of different directions which means they are able to more effectively avoid healthy tissue and vital organs.  The process was well suited to treating concave surface areas such as the interior of the chest wall, and also where there is constant movement.  When I went in for the planning meeting a week or so later, one of the things they did was study my breathing pattern. It all made sense.

Moving on to Monday, at the quick meeting squeezed in immediately before the first treatment, and Dr Carnell explains the real reason for the delay in starting my treatment. In planning the IMRT the physicists had realised that there was a significant risk of something called ‘radiation pneumonitis’ (RP). This is basically an inflammatory process in the lungs which in the worst cases can lead to scarring and fibrosis in both lungs, with people ending up as a “respiratory cripple”.  So instead, my treatment plan had been revised, meaning the planning had to be re-done using conformal radiation: “back to the old-fashioned way.  Any questions?”

“Errr, what is a respiratory cripple? Sounds like something to be avoided”. “Yes” chipped in the RT department nurse, also in the room and up until then, silent. “I’ve seen it, it’s not something you want to have.”
“Which is why we want to change the plan” explained Dr Carnell, pushing the amended consent form towards me.
 “Do you want me to re-sign that?” I asked
 “Doesn’t really matter, I’m a witness” said the nurse, sitting on the treatment couch, observing.
 I was feeling confused, Godfrey sensed an information vacuum.
“What about the side effects? “  he asked.
”About the same” replied Dr Carnell.
“What about the scarring on the heart?”
“About the same.”
“What about the lungs?”
“About the same.”  

Getting information out of this woman was like getting blood out of a stone.

“What about Carol’s oesophagus?”
 “The side effects on the oesophagus might be a bit worse, you might need to avoid firm food for a while.”

“Will it recover?”
 “Oh yes, after a few weeks.”
The nurse chipped in, “In any case, we can treat that. We can give you things to ease the symptoms”.

Godfrey was still puzzled at the change in the modality. Dr Carnell said they'd tried several times with the IMRT approach, but nothing was safe. Conformal radiation seemed to be the best bet. "The optimal solution?" he asked. "Yes."

So I signed, and we waited for the first treatment. As we waited, we tried to take in the salient points of the lightning quick consultation. Godfrey was saying, there’s something wrong, this doesn’t sit right. He sensed a lot of defensiveness. It wasn’t so much what was being said, as what wasn’t being said.  Afterwards, he began to get more and more concerned. “This doesn't make sense” he was saying “Why did we get all this spiel about how IMRT was so much better, only for Dr Cornell to tell us now, at the last possible moment, that you’re going to have the old fashioned treatment?  How can it be that IMRT’s ideal for treating you one day, and now it could virtually kill you? The medical staff must have known this was the intention when they cancelled last weeks’ appointment, why didn’t they say anything earlier? Why bounce us like that? How come Dr Carnell doesn’t take responsibility for not letting us know about the delay in treatment? So what that she wasn’t here, isn’t she responsible for her staff?”

By the time we got home, Godfrey was bouncing off the ceiling with worry and fury. We looked up RP, and ye gods, it definitely is something to be avoided. In essence, your lungs become leathery and fibrotic and can no longer do the oxygen exchange thing. You can reach a point where you can’t breathe at all, and die. It’s irreversible. A small section of lung can be affected initially, then it can spread through that lung and even into the other side. If you don’t die, you’re on oxygen, gasping for breath, unable to walk more than a few yards.

There are 5 grades of RP:
1) Mild dry cough not requiring treatment
2) Cough requiring narcotic cough medicine or breathing difficulties during activity
3) Severe cough not responsive to narcotics and breathing difficulties when resting, intermittent oxygen or steroids may be required
4) Continuous oxygen or assisted ventilation
5) Fatal

I don't want to be unfair to anyone in this blog, but I do want to be true to my emotional state."State" being the operative word. The more we looked into RP, the worse it got. Some of what follows is, with hindsight, a bit blamey, a but harsh. But that is how I was feeling.

Recent thoracic oncology papers state that 5 - 15% of people treated with RT to the chest area get RP: that’s including lung, breast, oesophageal cancer etc. Not all of them get it severely: sometimes it’s just mild breathlessness or a cough, and sometimes when it’s mild it goes away again. The danger of  getting severe RP (Grade 2 or higher) might be an acceptable risk when you have something terminal. But I don’t. Not at the moment, now the thymoma’s been removed. All I have is a few slow growing cells at the end of a minor blood vessel.

RP is caused by the RT: your chances of getting it vary with the total dose, the volume of lung treated, the fraction size and whether or not you receive chemo at the same time. The critical dosage is 45 Gy: I’m to have 50.4. Over a wide area. And, it’s caused just as much by conformal radiation as IMRT.

We’d been worried about the seemingly extensive nature of the IMRT: I get in principle how it would work for a solid tumour, but couldn’t see how it could be used to treat the ‘rind’ as they call it, where the lungs lie against the chest wall, without doing damage to a load of lung tissue. I’d put my worries down to not understanding fully. Now though, it seems I was right: how come I instinctively knew that, but Dr Carnell, with all her qualifications and experience, didn’t?

We began to play back our previous meeting in our minds, and realised that we didn’t really like what we remembered. When I’d asked questions on our first meeting in the Macmillan Centre on the 6th August, she’d said “it’s all very complicated, you need to have studied oncology for 6 or 7 years to understand this stuff.”  I was somewhat taken aback by her seemingly paternalistic and patronising tone. She also pulled me up when I mispronounced a technical word, like I was some hapless medical student. Today, she’d seemed less than open when answering Godfrey’s questions, and not really explained the reasons behind the change in treatment modality. We couldn't understand how the side effects I was now facing from conformal radiation would be "about the same" as before, since one of  the benefits of IMRT was said to be less severe side effects. Dr Carnell hadn’t felt the need to apologise for the anxiety and stress caused by her staff not telling us of the changed start date. She’d seen us alone the first time, this time she’d organised a witness.

There's a feeling you get sometimes, when someone's giving you unexpected news.It's hard to put your finger on: but there's a sense that words are being used in a very particular way, and meanings are shifting. You run the script back through your mind,and everything seems to be correct, yet the sense is you're in trouble. There was something of that going on in the meeting today, a sense of manipulation; a lack of a true connection.

The only outright euphemism I spotted during the meeting was the nurse saying, "we can treat that", for oesophagitis. Yeah,right. So can a crystal healer, or a reflexologist. The question isn't whether it can be treated, but whether it can be cured. But, as Quentin Crisp said, "Euphemisms are not, as many young people think, useless verbiage for that which can and should be said bluntly; they are like secret agents on a delicate mission, they must airily pass by a stinking mess with barely so much as a nod of the head. Euphemisms are unpleasant truths wearing diplomatic cologne."


The fact that I was looking for euphemisms, for things unsaid, for half truths, for unexplored areas, says it all. I was panicking, and confused, and I had lost faith in my doctor.


STOP! I want to withdraw my consent to RT, altogether. I’ll take the risk of the tumour re-growing, thank you very much.

Trust Me I’m a Doctor: Part 2

By Tuesday morning, after a sleepless night, I’d decided. Unless I got some answers, I was going to pull out of the radiotherapy.

I rang the hospital and asked for an urgent appointment with Dr Carnell, to try and get those answers. She agreed to see me at 1 pm, before my scheduled 2nd treatment at 1.30.

Because of my NHS experience, I’ve met loads of doctors over the years. Most of the doctors I’ve met have been extremely bright and totally committed to doing the best for their patients. Many have been funny, warm, and thoughtful as well. Many are also big-headed: but personally, I accept that as part of the package. You need a certain amount of self-belief if you’re going to cut people open or prescribe poisons for a living.

Being bright, committed and even a bit egotistical doesn’t make them infallible. Every week in the press there’s stories about clinical mistakes. Of course, I do understand that the reason these stories make good copy is that mistakes are relatively rare. I also understand that in RT more than almost anywhere else there’s controls: double checking of plans, calibration of machines, routine monitoring of dosages, regular scans: all possible steps are taken to eliminate error.

I've absolutely no doubt about the skills, knowledge and experience of Dr Carnell. Still though, at heart the decision to treat or not to treat, to handle things this way as opposed to that way, these are all judgements. I want to be included in those judgements. No-one (except Godfrey) has my interests at heart as much as I do. The chances are that I’ll agree with whatever decisions are being made, but I want to be part of the decision up front. I don’t want to wait till afterwards and then complain.

The thing is, I've thought a lot about life, and death, and that grey area in between. I spent a year working as a care assistant for severely physically disabled people. I'm talking about people who, in the main, were fully aware, had normal cognitive ability but no motor control. Think 'locked in syndrome'. Most couldn't speak, couldn't move their arms or legs, and were doubly incontinent. Most couldn't swallow so couldn't eat. Some had degenerative conditions and would die young, some had a normal lifespan. They were there because of MS, or strokes, or an anaesthetic accident, or head injury. I'd rather die than live like that.

So when it comes to clinical outcomes, I'm not interested in pure survival rates. I'm interested in quality of life. I would rather live well for the next 10 years then die prematurely of cancer, than live out a normal lifespan with severely compromised breathing..

I can understand doctor-speak, at least a little. I’m used to being treated by doctors as a colleague, and can’t and won’t accept being treated as a know-nothing patient. Doctors however, are not used to treating patients as colleagues. So Dr Carnell and I might have a communication problem. I’m sure it will be resolved, but there’ll be some difficult moments in the meantime.

I sensed that Dr Carnell and I could be heading for one of those difficult moments.

Godfrey and I had decided that we wanted 4 other options to at least be discussed:

• Watch and wait. 
• Treat just the pedicle: the surgical margin - where we know there are cancer cells. 
• Treat the pedicle and the area immediately adjacent, and maybe the biopsy site. 
• Seek a second opinion. 

 It all sounds so reasonable, in writing, but on the journey in, I was a mess.

Was I being a fool, everyone else in the world would just shut up and take what was on offer, what did I know, who am I to question a consultant, did I know how lucky I was to even be able to access treatment, supposing I do refuse treatment and it comes back: I’ll kick myself ………………..and

Not inspirational

I’d rather live well and die young than risk being a respiratory cripple, why hadn’t Dr Carnell known at the start what the potential problem was, how come the physicists had to tell her, UCH has a reputation for treating aggressively which is good when you have a carcinoma but maybe doesn’t apply to me, conformal radiation is going to harm me just as much as IMRT maybe more, maybe………… and....


I can’t cope with this, I’m going to make a fool of myself, I haven’t had to strut my managerial stuff in years and don’t know if I can still hack it, I’m panicking, I’m going to cry.


When I got there, Dr Carnell was in a clinic room with another of her registrars, Dr Ball. “Need another witness, do you?” I thought.

I started off by explaining that I knew UCH, and the Oncology department, was on top of its game. That the excellent results they produced were a direct consequence of the aggressive approach they took to cancer, and that it was precisely for that reason I had wanted to be treated there. Then I said “You seem to be treating my tumour as aggressively as if it were lung cancer. If it had been lung cancer, then the risk of side effects such as Radiation Pneumonitis (RP) might be worth it. But it’s not. I had a slow growing, semi-malignant thymoma, which has been excised. Why can’t we just keep an eye on me, and if the tumour comes back, excise it again?”

Dr Carnell explained that it was precisely because the tumour was slow-growing that it needed to be treated so soon, and so aggressively. Where the residual cells are, right up against major blood vessels and my heart, would make future surgery very problematic. The best option is preventative. RT works best on fast growing cells: thymomas do not respond well to RT. Waiting for it to grow and then zapping it would not be straightforward. “The time to treat it is now, when there’s only a few cells involved.”

“But the standard treatment for Thymoma is excision, not excision plus adjuvant RT.”

“Yes, but yours could not be completely excised, there are still cells at the margin. And because you are so young, it will re-grow enough to cause problems later in life.”

I knew about the incomplete excision and regrowth, of course. Hadn’t realised about the complexities of future surgery.  So it looked like ‘watch and wait’ was not as simple as it sounded. But still, the innocently named “side effects” terrified me.

“So, if we need RT, I’m very worried about the potential for severe RP. This hasn’t been mentioned before. I’d rather not be treated and take my chances, than have any risk of that.”

“Yes,” Dr Carnell replied  ”It’s precisely to avoid that that the treatment protocol has changed. The revised approach is to irradiate just the tumour site and a very narrow column of lung immediately in front. There’ll be 3 beams of radiation precisely targeted towards the same area and the rest of your lung will be left clear. YOU WILL NOT GET RADIATION PNEUMONITIS”.

She said, “I don’t know what you’ve been reading, but really, you need to have studied oncology for six or seven years to understand properly what we are proposing to do. You just have to learn to trust me.”

I got cross. I don’t take well to being patronised. I’d heard the ‘years of training’ line before, and I wasn’t impressed. If the CERN Physicist Prof Brian Cox can explain the creation of the solar system with perfect clarity using a pepper pot, a sugar bowl and an ashtray, then I’m sure Dr Carnell could explain my treatment to me. Frankly, it's her job to explain things to non-specialists. That's what all professionals have to learn to do. Also, there's plenty of people like me, who want to understand what's going on and who don't want nursey reassurance. I'm quite capable of reassuring myself, if I have the information.

I said, “I’ve knocked around the NHS system for far too long to take any doctor on trust. Also, as to what I’ve been reading: I’ve not been in the chat rooms, I’ve been reading proper medical journals: the Journal of Thoracic Medicine, Journal of Oncology, BMJ: that sort of stuff. Probably some of the same stuff you’ve been reading.”

“I’m not stupid” I said, “I will understand if you explain”

Then she told me something I didn’t know: that UK treatment protocols were considerably more conservative than international standards. Therefore, a lot of the stuff I’d seen wasn’t comparable. OK, that was news, and reassuring news, to boot.

I asked for a drawing, and Dr Ball said he’d try to pull up the actual planning picture on the computer, if that would help. Very much, yes. In the meantime Dr Carnell drew a sketch, and I began to see what she was talking about. She was proposing to just treat the pedicle and the area immediately adjacent, in a slim column alongside my sternum. That’s OK. That was one of our preferred options. The big sweep across the whole lung had gone. I’m not sure what the plan is for any further microscopic tumour cells elsewhere in the pleural cavity, but I guess if they exist, and re-grow, they will be away from major vessels and will be operable. That’s for another day.

Why couldn’t she have said all this yesterday? The grief, the stress, the time spent reading medical journals, the sleeplessness, the worry, all could have been avoided with a full explanation up front. This extra appointment could have been avoided. Instead, we’ve had to spend half an hour having a meeting which must have been difficult for each of us, and I’m sure we both had better things to do.

Dr Ball couldn’t get the planning pictures up on the system, and suggested taking me to the planning offices to look at my images on their computers. Yes please. I felt the nerd in me rising up, excited. A chance to look at the RT planning process! Yippee!

Red Line Encircles Target Area: Excision Site, Heart and Anterior Chest Wall.

He showed me the pictures, and they demonstrated clearly the treatment zone and the angled beams. He explained, again, that the risks of RP were very low, “less than 5%”, and that most people who got it, only had a very mild form.

I said, “Yes, but that means for every 1000 people you see with cancers in the chest, 50 of them will get RP. For each of them, they’ll get it 100%.” I know I’m stroppy. That doesn’t mean I’m wrong.

“But nearly all in a mild form, which is treatable. In all my years as a doctor, and all Dr Carnell’s years, neither of us has seen or heard of anyone getting it severely. You don’t need to worry about it.”

“Why’s it on the consent form, then, as a known side effect? Can it be taken off?”

“No, it still needs to be there because it is a risk. But a very small risk.”

OK then. now I understand what's intended and I'm less anxious, I’ll accept a very small risk.

I’m going to remember the words of Dr Carnell :
"YOU WILL NOT GET RADIATION PNEUMONITIS".

We’ll see.

Meantime, I’ll work on my trust issues.

Monday Morning Blues

It's Monday morning again. Radiotherapy (RT) starts today (again). I’m anxious, of course, again.

Actually, it's not so much 'again' as still. I thought that after last weeks' fiasco I'd calm down, have a relaxing week off, enjoy the sunshine, and just chill. It didn't work like that.

Instead I've spent the entire week churning with anxiety. I've felt angry, and stressed, and victimised. I hate feeling victimised.  The trouble is, I'm completely in the hands of the medics. I try and understand what's happening, but I can't really know, not deeply. We're into the realms now of cellular activity, and biochemistry.What do I know about such stuff?  I got biology 'O' level, 40 years ago, but failed chemistry. Twice. I'm not qualified.

I rang UCH on Friday to check that all was well and they were expecting me - I'd had nothing in writing and after last weeks fuck up I wasn't going to trust in a beneficent universe. The chap on reception said yes, all was well, "if there was a problem someone would call you" "They didn't call me last week....."

Then later, we had a call from one of the radiographers asking if we could move Monday's appointment because Dr Carnell, the oncologist, wanted to see me. We weren't expecting to see any oncologists, just RT staff. I got the impression during the phone call that Dr Carnell wanted to explain what happened last week,why the planning was taking so much longer than expected. By Friday evening, my poor old frazzled brain was running out of control, speculating all kinds of nasty stuff. Have they found something new? Looking in detail at the planning CT scan, is there something else wrong? Do they want to do chemo, now, as well? Has the cancer spread?

At the end of the day I have to trust whatever I'm told, But because it wasn't clear at the start what was wrong, over the last 4 or 5 months I've seen many different doctors, and they've all told me different things.Sometimes contradictory things. They all have a different approach, which I do understand, but still. It's just little old me turning up at all these appointments, and whatever is going on inside doesn't change, but the words,and the approach,and the potential impact on my life, does change. It's all very unsettling.

Toppesfield Footpath

We tried to make the most of the good weather this week by going out for a walk in the lovely Essex countryside. Ended up waist deep in nettles. The footpaths where we were clearly hadn't been used in years. We got scratched, and stung, and bitten, and hot and sweaty ; and the lovely village pub with a sign outside saying "Open All Day!" was shut. Bugger.

WTF???

It’s Monday morning and Radiotherapy (RT) starts today. I’m anxious, of course.

I’ve been anxious since we were first told I needed RT. It’s the radiotherapy itself, the relentless draining of my energy, the sunburn, the possibility of side effects, the huge unknown-ness of the process.  And the worry that despite all the best efforts of the staff, some cells will still be missed and we’ll be back to the beginning all over again. That and the travelling, the mind-numbing exhaustion of commuting into London 5 times a week with hordes of strangers. The delays and breakdowns, and the sweaty heat, and fast food smells, and the screeching of the brakes and umbrellas dripping on my feet and the lack of space and the noise.

Faceless people crowding in

I’m also scared of how I’m going to feel. I don’t like the feeling that as time goes on, I’m going to get gradually weaker and weaker. It feels as though I’m just starting to get myself back together after the operation, and I’m not ready to go back to being an invalid again. Not yet.

Going into London for RT is not like going into Brentwood for shopping. It’s a big deal. Comes with a whole stash of fears and anxieties, some rational, some not. My everyday mental filters dissolved away and all those 4-in-the-morning worries and questions started blipping through my mind, unchecked. Here’s a selection:

“What if the staff get the dosage wrong? I’m going to die.”

“How will I cope with all of this treatment? I don’t have the strength.”

“I can’t deal with this commuting.  There’s too many people and too much noise.”

“What if my heart or lugs are damaged? I’ll end up an invalid. I’m too young to be an invalid and way too old to start wheelchair racing”

“What if I panic and start to cry?”

“I’m going to see the same staff every day for weeks. I need them to like me. What if they don’t like me? What if I don’t like them?”

“I hope they know what they’re doing.”

“Supposing the machine’s calibrated wrong? The first we’ll know of it is the smell of burning…..”

 “I’m going to meet the same group of other patients every day in the waiting area. What if one of them latches on to me? How do I get rid of them without being rude? Does it matter if I am rude? Will I latch on to someone else, and they’ll have to get rid of me? Should I just hide in a corner with a book? What are the rules for all this?”

“I’m going to feel so ill; I’ve barely got over the surgery…”

“How am I going to cope, especially once I start getting tired?”

“I hate the aqueous cream I’m using on my skin. It reminds me of when I had eczema, smells medicalised and I don’t feel clean.”

“If that woman on the mobile phone behind me doesn’t SHUT UP I’m going to have to kill her”

“What if the RT doesn’t work? I’ll have gone through all of this and have to go through it, and worse, all over again.”

“Everyone else copes, why am I such a wimp?”

Still, whenever a challenge has come along in my life I’ve never been ready. Just like everyone else. Somehow, we all have to just reach down inside ourselves and find the strength to deal with it. But it’s not easy, it does take a certain girding of loins, a gritting of teeth, and a conscious putting of the fear to one side. You just have to rise to the occasion.

---

When we got to the RT department, we waited with trepidation for a few minutes, then we were called in to meet the radiographer. “Hello” she said, “My name’s Kathryn. We’re surprised to see you here today, your appointment’s been cancelled. Dr Khan was supposed to call you, but I’m guessing that as you’re here, you didn’t get the message.”

WTF? I reeled in disbelief. “Why?”

“The treatment planning is taking longer than expected, and the medical physicist hasn’t finalised his workings yet. You’ve been re-scheduled for next week.” 

There’s nothing you can say or do at times like this that make any sense. Clearly there was a fuckup, but it wasn’t Kathryn’s fault: the blame lies with Dr Khan. She was nowhere to be seen.

I felt like just walking out, slamming the door behind me like a petulant child. But I was too confused, and too polite. And hospital doors don’t slam effectively anyway, they kind of glide shut. Also, I thought there must be questions to ask: but I couldn’t think of any. Godfrey managed to avoid an awkward silence, by asking what had happened, why the treatment planning was taking so long. Kathryn didn’t really know, but it was clear that the hospital knew some time last week that the treatment wasn’t going to happen, and had delegated a member of the team to liaise with me, and it seemed likely to us that she’d just plain forgot.

I pulled myself together somewhat, and was able to bleat out a few comments about how stressful this trip had been, and how having got myself into treatment gear, it was extremely distressing to then be sent home untreated. Kathryn replied that the hospital might refund the ticket costs, seeing as it was their mistake. “But you can’t refund the stress though, can you” I said. Nope.

So that was that. We left.

It was only afterwards that we began to process what had just happened. Back on the tube and train again, back into the auditory nightmare that is modern commuting, the babel of voices, the shrill ringtones, the relentless chundering of the wheels and the mind-numbing repetitiveness of the station announcements.  Godfrey and I can’t talk to each other much over the cacophony so we sit in silence, with all the uncertainties and questions we had on the way in plus some new ones:

“How come the RT, which was urgent 3 weeks ago, can now wait another week? Won’t the delay mean the cells are still growing? What if some of them use this extra week to slough off away from the treatment area and move into the other lung? Or elsewhere? How’s anyone going to know?”

And “If a doctor can’t be bothered to make a simple phone call, what else can’t she be bothered to do? “

And “Why is it taking longer than expected to plan this. They knew exactly what my situation was when the first appointment was made. Have they found something unexpected? What are they not telling me?

And “Why on earth is the doctor the person who’s supposed to call me to tell me the appointment’s been moved? Haven’t they got more important stuff to do? Why is it a doctors job anyway, appointments are an admin thing and she's a highly qualified technical wonk, completely the wrong person. Couldn’t the receptionist have done it? It’s only a bloody phone call, for God’s sake.”

And “Those cells are growing, right now. I can feel them. “

And “Why are the trains so busy at 3.30 on a Monday afternoon.  I can’t bear all these people around me. If that woman on the mobile doesn’t shut up I really am going to have to kill her.”

And, because anxiety makes me feel scared, and fear makes me hostile, “Who are all these people? What are these languages being spoken? They’re not tourists, and they’re not poor, they’ve got top of the range mobiles and plenty of bling, why are they even here taking up all the room in this carriage and squeezing me out?”

On Tuesday, Dr Khan did manage to call me, to apologise. So that was all right then. Forgiven and forgotten.  Actually, no. I hate this modern trend for apologies making everything OK. That works when you’re 4 years old and learning contrition, but for grown-ups, it just doesn’t wash. So although I accepted her apology – what else could I do? – I tried to make her understand how exhausting and draining the whole situation had been, in the hope that she would decide she never wanted to have such a conversation again: and so next time, she’d remember to make the phone call.

On Friday, we’ll call the hospital and check that the appointment is real, then no doubt the build up of anxiety will start all over again. Happy days.