1^st round of chemo complete and no significant side effects and slept well. Work with dry mouth and a slight headache. So far so good. Another four days of this to go.

Talked with the doctor team. It’s good to see the nurse joining in so that she is properly briefed. Also, so I don’t have to say the same things twice. Talked system safety with Stephanie who recognizes the contributions of aviation safety to medicine.

It’s important however, to distinguish differences between aviation and medicine, and avoid a one-size-fits-all solution. Jim Reason has written extensively about the differences, so I’ll try to avoid repeating. But first, obviously there is so much more attention paid to the customer in medicine than there is in aviation, and, for the time being, cost of care, although importent, is not nearly as critical a factor in medicine as in aviation.

Other differences, pointed out earlier, are that medicine is not overseen or regulated in the same manner as aviation. It’s not clear that it needs to be. The DF model of system safety introduced after the Betsy Lehman accident, and the “To Err is Human’ report seems to work well here. The question is, how well does it work at other hospitals? This is an area where I think there is a need for self-monitoring, something, I think, that IHI is working on, that would allow hospitals to report incidents, accidents, and near misses, and do trending and root cause analysis. Judging by what I read, DFBWCC is rare for having an explicit system safety program, and other hospitals are either in ignorance or unable to afford it. One of the roles of the system safety advocate, therefore, should be to encourage the hospitals to adopt a system, and show it can be implemented incrementally.

Appetite slowly coming back. One thing I realize is that in hospital you really can’t eat at the right pace. Yesterday, I was never without a bottle of Gatorade to hand, and lots of small meals. This morning, I had mushy Weetabix and poached myself an egg – probably a breakfast that only an Englishman could relish. But the mere act of preparing the food increases appetite – something I don’t think they’d let me do in hospital.

[later]

Read over some correspondence with Jim Reason and emailed the two US contacts he had sent me, Jim Conway, (IHI), Susan Sheridan, (CAPS). Copied Jacobsen and Sloan. Not sure what will come out of this, but adversity sharpens the mind – just hope my writing is not littered with too many dilaudid/deluded ramblings.

[later]

Read up a bit on the 1994 Betsy Lehman accident. I think I must have heard about it when it happened, but it never really registered at the time. I certainly had not realized that it happened at DFBWCC. Reading about it brings tears to my eyes. And then my left brain kicks in and asks: what did we learn from this? As in aviation accidents, we must accept that accidents happen and avoid casting blame. As Jim Reason points out, blame is all too often associated with the individuals on the sharp end of the chain (not the right word), and the organizational errors are not even considered. We must be careful however to strike a balance, and not fall into the mentality of blaming society for all our ills. The pendulum swings – but there is no point of equilibrium.

Yes, with hindsight, any accident could have been prevented, but the fact of the matter is that accidents will continue to happen, and we best serve mankind by understanding how accidents happen and developing methods to decrease likelihood and minimize outcomes – straight safety management in other words.

A topic that I have been considering in system safety is a role that could be likened to that of a project manager in software development. Call it a patient coordinator. Such a role may already exist for all I know, and I am fully aware of the problems of keeping a team of highly skilled individuals together. Not all teams need a patient coordinator – but perhaps some do – particularly where there is a cultural gap between the patient and the team. A patient coordinator would be able to integrate the twin skills of nursing and medicine, and taking notice of the peripheral issues impacting the case, such as potential problems in nutrition, transport, nursing procedures, pain control. The coordinator would be responsible for bringing any issues that impact the case to the attention of the specialists, and also to report back to the organization on any organizational issues that are uncovered.

Don’t expect that something you tell a PCA (Patient Care Assistant) will make it back to the nurse, or something that you tell the nurse will make it back to the doctors, or that something you tell the doctors will make it back to the specialists. When I was admitted, I found I had to repeat my story several times over to each of the different doctors that I was introduced to – indicating that they had not actually talked to each other. In fairness, I should add, that there is also benefit in trying to triangulate the case by getting different viewpoints. At any rate, the role of patient coordinator is something that might help to fill the communications gap.

A fair night. Such a joy to wake up in my own bed next to Mo, and Diggory somehow snuck up there too. Mouth is very dry and I realize that I am dehydrated, but curiously, do not have a thirst or an appetite. I’m on my fourth 12 oz bottle of Gatorade since last night. If I can be more physically active today, I think some of my thirst and appetite will come back. In the meantime I need to take it easy so that the body does not reject the nutrition. It’ll be easier to be more active since I don’t have those darn tubes trailing behind me anymore. Mo is monitoring my temperature carefully – I was borderline 100.5 last night but it’s down to normal right now.

Quiet traditional home day today. Decorated the Xmas tree, listened to Xmas music, and watched TV. Simple pleasures!

Mo is here taking down the posters and packing stuff away. I’m going home this evening – yeah! Dr. S Stopped by and gave us the good news. Now the bad news is that I start IVAC (round 2 of chemo) on Monday.

I woke this morning with a clear head and a certainty that I was on the mend. I had not let myself dare hope that today would be the day, and indeed, in discussions with the other doctors, they seemed to think that I would not be able to go home until Monday. But Sloan and Jacobson are my cancer doctors and they get to decide. They want to push on with the chemo before the Burkitts cells get to build up again. My WBC right now, having been zero, is above the norm, and is presumably creating antibodies to fight off the nasty secondary infection. So, I should start to feel better. What I feel right now is tired. My muscles ache which is hardly surprising since I have not had much chance for exercise over the last three weeks.

[2:45]

Colm came in. He’s monitoring the infusions of the various chemicals, such as potassium, into my body to keep the blood chemistry correct. He’s also just shut off the PCA (pain control) to see how well I do without it. Here goes…

[9:30 pm Stow]

Got home about 8:45 and got sorted. Still not much of an appetite, but boy, it is good to be home, lying in bed upstairs with Diggory crashed out beside me. He has that doggie 6^th sense that allows him to sense mood, and although obviously excited to see me, he has been very restrained. I looked at myself in the mirror – I look pale, but already I can feel energy from familiar and happy surroundings leak back into me. And oh, the bed is so much more comfortable.

Another brutal night. I don’t know what it is about this secondary infection that makes it this way. A lot of doctors were helping me but I had this fantasy in my head that not all of them had my best intentions at heart. Yelling and retching every 19 minutes or so all through the morning when the doctors stopped by. [With hindsight, I realize that the fantasy was a side of effect of the dilaudid]. The doctors confirm that mucositis is what I have but there is not much apparently that can be done. We just have to rely on my rising numbers of white blood cells to make enough antibodies to see it off.

I was still very mucousy and distraught when Mo came in this morning. It’s good to see her and she can give me a read on my long-term progress. She can only get a window during the day. I can start a day feeling crappy and end up fine, and vice versa. Anyway, she says that I’m looking much better than when she last saw me on day 18. I actually feel a bit worse. But no matter, I need to do what I can to get fit. Mo helped me with breakfast and re-nuked many of the items that I had allowed to grow cold.

I felt drowsy and slept a bit and then felt stronger. There wasn’t a lot of time to do anything. We talked about how Miranda already knows that I won’t be home at Xmas. After this weekend pass (fingers crossed) I go right back in to chemo. Supper’s here so will stop now.

[later]

Did some more work, updating the journal and posting to the website. Recent entries have been pretty sparse, reflecting, perhaps, my mood and energy level. Have not, for example, had the energy to pick up my Aubrey-Maturin book for several days.

[later]

Felt tired and went back to bed where I slept for a few hours. The lips are now the main problem area. They are swollen and not properly lubricated. I use Vaseline but that’s not the same. I can’t close them when I’m speaking because then they stick together. When I do close them then I have to use my tongue to ease them apart. I tend to sleep with my mouth open. No real appetite. I made myself eat the lemon chiffon pie and the custard. Remarkably, tea tastes almost like it should and I do enjoy it.

[later]

Took another nap because I felt tired, and slept uninterrupted by nature’s calls, and woke with renewed energy. The nurse says I look better too. Oh, if only – if only I can get a good night’s sleep and avoid the nightmares of the last two, I would be so happy. I do feel I’m getting better. Some of my coughs now are normal coughs, not ones that require me to expectorate crap into a bowl.

Vitals: Oral temp: 99.2, O2 97 percent, pulse 112, blood pressure 116/70