So far, so good. Friday had come and gone without me ending up on the day unit having my bloods checked! I was so relieved. I was starting to feel a wee bit better, and was looking forward to Dermot coming home so I could have a sensible conversation with someone, instead of staring in to space like a zombie.
I’d done it. I’d got through the second round of chemo, and it hadn’t been as bad (thanks to the swap in GCSF injections). Later that evening, however, I started to feel a bit shivery, but thought nothing of it. Then I got goosebumps on my arms. It was 8pm. I didn’t feel quite right, and was a little worried.
What was running through my mind
- it’s late on a Friday night. That means if I did have a temperature I’d have to go to A&E rather than the lovely day unit - It’s a Bank Holiday weekend, so A&E was likely to be heaving with drunken people - If I don’t take my temperature then it can’t be high so I don’t need to act on it - I haven’t got my chemo bag packed (bad girl) and don’t know whether I can think clearly enough to pack it now
I keep quiet about how bad I was feeling, but did check my temperature. It was 37.4C (almost at the magic number of 37.5C - do not pass GO, go straight to Jail / Hospital). Gulp. I was still shivering on the couch under my sick blankets. I took my pulse - 90. My resting heart rate is 60-65, so this was high. I told Dermot. We both carried on watching TV hoping it was a blip.
Face the facts
Over the next hour I felt steadily worse. At about 9.30pm I checked my temperature again. Bollocks. As I suspected, it was now 37.8C (Congratulations you have a golden ticket for A&E). My pulse was now over 100. I was properly poorly. I rang the emergency oncology bleep holder, who was lovely, and told me that I’d need to go to A&E, as there were no beds on the Oncology ward. I somehow packed a bag, we frantically charged our iPhones, and set off to hospital.
As we expected, A&E was incredibly busy, with a good 3+ hour wait to be seen. It was a struggle standing up at the reception desk as I felt so weak, and not a place you want to be with neutropaenic sepsis, surrounded by drunk and disorderly folk in the waiting room. Neither of us wanted to make a fuss - we could have pulled the ‘I’m a consultant surgeon / ex-Medical Director’ card, but didn’t. I was curious to see if the ‘golden hour’ for getting IV antibiotics into patients with neutropaenic sepsis actually happened.
The oncology nurse had rung our details through, and the receptionist was expecting us. She found a nurse to take us to the one remaining empty cubicle, in the Children’s Area. I collapsed on the trolley, grateful not to have to stand up anymore. I really felt lousy. One thing I noticed in the cubicle is that the ceiling lights are very, very bright, and were actually hurting my eyes.
And then this is where West Suffolk A&E excelled itself, all due to the excellent care and attention I received from staff nurse Paolo. He is one of the wonderful Portuguese nurses. When he first came in, he said that he was going to treat me for presumed neutropaenic sepsis. I instantly felt better - someone was doing the right thing and I could stop trying to be a doctor and just be a patient. Paolo was competent and caring and I knew I was in safe hands. Within 40 minutes, I’d had antibiotics, fluids and paracetamol, and my pulse was coming down.
I discovered that one of the problems with having a tunnelled chemo port in my chest is that in West Suffolk, only the oncology nurses are trained in taking blood from them, so it meant having a cannula in my arm (something that hadn’t been explained to me when I decided on what port I would have). Another thing that occurred to me was that Paolo couldn’t take blood cultures from my port, which would normally have been done on the oncology ward. You take cultures from anything and everything in sepsis. I didn’t think to ask him to bleep the emergency oncology nurse, and didn’t want her to be bothered at that time of night. I was fairly certain that I wasn’t seriously ill, but I’d like to know how essential it is that port cultures are taken in septic patients.
Dermot and I then spent the next 2.5 hours waiting to be seen by a doctor. Again, we could have pulled the ‘Do you know who we are’ card, but didn’t want to make a fuss. We knew how busy the department was, and I had already had the treatment I needed. I was trying to persuade Dermot to look up my blood results on the computer in the room, but he correctly said “No”. The thing going through our minds was whether I would need to stay in overnight. If all I needed was IV antibiotics, I wouldn’t get another dose until 8am the next morning, and Dermot reasoned that he could bring me back in for that, so I could sleep at home. However, as most of you know who have worked in acute hospital specialities, it always feels very risky sending someone home after 11pm, and the rule of thumb is to keep people in hospital, and re-assess in the morning.
Puzzling blood results
We were finally seen by a lovely consultant at about 1am, who told us off for not saying who we were. My bloods were back, and they were all normal apart from my white cell and neutrophil count, which were very, very high. In neutropaenic sepsis, the neutrophils are very, very low (<1). In a normal (non-chemo) patient, a high white count is worrying and indicates a serious infection. The consultant was at a loss to explain my bloods.
I was fairly certain that I didn’t have a serious bacterial infection, and thought the high blood cell count was due to the bone-marrow stimulating injection I’d been given. But because I’d never had blood taken at this point in the chemo cycle, I didn’t know for sure. The A&E consultant had no experience in this field, and so it was decided I’d be staying in. Joy.
The West Suffolk team were wonderful, and within minutes of the decision being made that I was staying in overnight, I was being whisked to a side room on a trolley by a very cheery porter, via Radiology for a chest x-ray. I no longer cared that my bald head wasn’t covered up, and was desperate for some sleep. How little I knew…
Being a ‘proper’ patient
Emma, the nurse who admitted me, was wonderful. She carefully explained the lay out of the ward, and what would be happening to me overnight. I would have hourly observations (not much sleep), would be given some more fluids overnight, and would have my blood sugar checked as well. I wanted to make sure that no-one took my blood pressure from my ‘cancer’ arm, so a green wrist band was put on the arm they could use. I must admit I was a bit puzzled by this. If I’m asleep with that arm under the covers, and the nurse coming in to do my obs didn’t know about the band, they could easily use the wrong arm. Surely it would make more sense to put the band on the arm they couldn’t use…? It didn’t matter in the end as I was awake most of the night.
Once I’d been hooked up to a drip and stabbed, Dermot went home to get some sleep. The only thing I had left to do was to wait for the on-call Medical Registrar to see me. All the nurses who came in during the wee small hours introduced themselves (lots of “Hello, my name is…” action ), and couldn’t have been nicer. I think it was a bit upsetting for some of them to see someone young like me having chemo, but I was too tired to care.
I had to take a ‘selfie’ complete with fake smile and rosy ‘chemo cheeks’, but I felt a lot worse than I looked. I was woken up on the hour as promised, and at around 2.30am, the Med Reg came to see me. And this is where the night became very surreal. I’m fairly certain he/she won’t be reading this blog, and I don’t want to upset him/her, but feel I have to give my interpretation as a patient and a doctor of what happened. I’m using he/she to preserve anonymity.
When you go to see an unwell patient, there are a series of questions that doctors routinely ask (we call it Taking a History). These cover a wide range of things - from what is happening to you now, to any previous illnesses you or your family might have, what drugs you take, do you have any allergies, do you drink or smoke. It helps the doctor work out what is wrong with you. In this electronic age, most hospitals have patients’ clinic letters and other documents online, so as your doctor, I get a sneak preview before I come to see you, which is very helpful. Especially when waking someone up in the middle of the night who might not remember all the salient points I need to know.
When the Med Reg came in, his/her opening line was, “I’m very busy and I have to go to another ward. Where’s Dermot?”. Hmmmm. Not the best first impression. I know that the Med Reg job is the worst in the hospital and they are always very busy, but I was a sick, frightened patient and he made me feel like an inconvenience. Also, I’M the patient. Why did he/she want to speak to my husband before me? I think this doctor was daunted at the prospect of treating ‘Dermot’s wife,' as he clearly knew who Dermot was, and possibly didn’t know that I was also a consultant surgeon.
The first question we ask patients about their illness is meant to get information about what happened to them, i.e. how did their current illness start, how did they feel etc. As a very junior doctor, I used to ask ‘What brought you to hospital?’, and would get the inevitable “An ambulance, doctor”. It takes some time to find a patter that suits you.
Then the Med Reg asked me, or rather, told me, “So I gather you know you’re having treatment for breast cancer..?”. I was in shock! Umm, yes I do know, thank you very much. Do you think it’s normal for 40-year old women to be bald?
Affair? What affair?
I calmed down, and he/she asked me a couple of questions to see if he/she could work out where the infection might be, and then asked me, “Are you and Dermot all right at home?”. Again, my jaw dropped. What on earth did he/she mean? Yes, it was the middle of the night, I felt like crap and had had no sleep, but was he/she asking whether Dermot was having an affair? Was I an alcoholic? The mind boggled? I told him/her I didn’t know what he/her meant, and he/she explained he/she wanted to know whether we smoked or drank socially.
After a very brief examination (just listening to my chest and looking at my throat with the magic iPhone torch - how things have changed), he/she asked if there was anything else I wanted to tell him/her. Before I spoke, I was a bit surprised at the cursory physical examination. I’m a sick, septic patient, with no obvious source of infection, and thought he/she should have examined my legs for a possible clot, felt my tummy, listened to my heart, felt my pulse etc, etc, but hey, I’m just a surgeon.
The final blow
Since he/she hadn’t asked me anything about the breast cancer (not even what side it was), or the chemotherapy, I thought I’d tell him/her I was a consultant breast surgeon. I may have been a bit mean, but I wanted him/her to know that I was not a normal patient and this wasn’t his/her finest hour. I gave him/her a brief summary of my cancer ‘journey’ (God I hate that word!) and the details of the chemo. I hadn’t had copies of my clinic letters so I didn’t know what information he’d/she’d already seen. He/She then asked me why I was being given chemotherapy first before surgery, as he’d/she’d never heard of that being done. Really? Are you really asking me to give you a lecture on the treatment of breast cancer at 3am?
His/Her parting words to me were, “Why did you let it get so big before getting it looked at?”. I was furious, and would have said something witty and cutting and sarcastic back if I had’t felt so rotten. I was insulted and offended and upset. It’s funny now, but it wasn’t at the time.
Hospitals are not good for sick patients at night
I then settled down to ‘not sleep’. I quickly learned that acute medical wards are the worst place to be in the hospital at night. You simply get no rest. It is also very difficult to turn over in your sleep when one arm is attached to a drip stand. It’s also difficult to pour a glass of water when your arm is tethered.
No rest for the wicked
I was very lucky to have the relative peace of a side room, but no room is soundproof. Together with the incessant ‘bing bong’ of my fluid pump and all the others on the ward, there was an elderly man who was disorientated and confused. Every 5 minutes he would shout, “Help me! Save me! Take me Home!”. One of the ladies in the bay opposite would then shout, “You’re a horrid man! Shut up!”. He would then reply, “You’re a horrid woman!”. This would continue all night. I felt so sorry for everyone on that ward - the sick patients who needed sleep to recover, the nurses trying to placate and not lose patience with the confused man, and at the same time having to see to the needs of all the other patients, as well as dealing with the constant stream of new admissions that arrive during the night.
Taste of your own medicine
Every doctor should spend a night in hospital to see what their patients actually go through. When you pitch up at a patient’s bedside bright and chirpy at 8am, (or maybe a bit later if you’re a medic), there is a high chance that they will have had very little sleep, will be feeling rotten and will not be thinking clearly when you ask your probing questions. Be patient with them, please. Maybe ask them how they slept?
What a difference a day makes
Come the morning, I did feel better. It’s amazing what 2 litres of fluid can do. I knew I hadn’t drunk enough in the last week, and I was desperate to get out and go home. Dermot came in to see me, much earlier that I thought he would, and disconnected my beeping fluid pump. He’d given the medical consultant a friendly text that morning to let him know that I was an in-patient, and to ask what time he’d be doing his rounds. Naughty, I know.
I only had 2 complaints about the care I received as an in-patient, and on the whole, I couldn’t fault the care or attitude of the staff looking after me. The first complaint was that no-one came gave me breakfast. I was given a lunch menu card to fill in (but no pen to fill it in with), but no food. I didn’t mind too much, as everything still tasted odd and I rarely eat breakfast anyway, but when it got to 9.30, Dermot said something. They had simply forgotten. All I wanted was some toast, but they had run out of bread, so it was Rice Krispies and warm juice.
A little cause for concern?
The second was that I hadn’t been assessed for VTE prophylaxis. This is a scoring system that assesses your risk of developing a clot in your legs or lungs. Almost everyone admitted to hospital these days is written up for a blood-thinning injection to help prevent this, and they are measured for TED stockings - high compression stockings that also help prevent this. I wasn’t given stockings, and I wasn’t given an injection. Now, I was admitted in the wee small hours, and was on the ward for less than 12 hours in total, and these things can slip the mind when a doctor is busy, but my risk for getting clots was high as I was a septic patient having chemotherapy.
The medical consultant then arrived to do his morning rounds. We know him socially, and he was a bit weepy and emotional when he saw me with a bald head. He wanted to give me a hug and a kiss - and I felt really awkward, as I’m sure did the poor junior doctor stood in the doorway. Thankfully we didn’t hug/kiss as I was still possibly septic, and in my neutropaenic phase of chemotherapy. I felt I had to explain to the junior that this wasn’t normal ward round protocol….
Doctor, heal thyself (again)
We then had a discussion about why my blood count was so high. He asked me what I thought, as I was the expert. This shocked me a little. I’m not really an expert in blood counts during infections on chemotherapy. I’ve never had anything like this before. How on earth am I meant to be an expert? Isn’t that your job? Surely you’re not asking me to diagnose and treat myself after the night I’ve had?
I had been expecting this though, and had been Googling during the night. I’d also got in touch with a lovely oncologist in Manchester earlier that morning, who had told me that my count was high due to the injection and I should be sent home on oral antibiotics. I suggested that the consultant could ring either my oncology consultant or the oncology nurse to find out what to do, and helpfully gave them her bleep number. Maybe you do have to become an expert in your own illness? But it’s hard to do this accurately when you’re ill yourself.
Half an hour later, everyone agreed that I was fine, that it was the injection that had raised my white cell count, and I could escape home. Although spending a night in hospital was not on my list of things to do during chemo, I’m really glad that I did. It will certainly make me think twice about what I say and do, the next time I look after a patient.