Goodbyes

The last time she spoke to me she told me that the nightmares were back. And she asked me to bring her some Tropica. The second last time she was confused, and thought that she saw her granny standing outside the door. She called 'gogo!' and I held her hand and told her that her granny would be there later. Today I held her hand and stroked her bald little head. I told her I am there and I am always thinking of her. But I do not know if she heard me.

The end seems to be close now.

She is unconscious, breathes with difficulty, and has no movement of the right side of her body. After my emotional goodbye I found myself, on my way home today, wondering what I would want if she was my child. If I would be able to watch her slowly drifting away, unsure if her nightmares were even now torturing her during her last few days?hours? If I would approach the doctor and ask if there was an easy way to end her suffering? I am not one to easily speak out on contentious issues like euthanasia, but in this case... knowing that she is probably suffering, knowing that there is really no hope for cure...

I left the hospital with a very heavy heart - knowing that her bed may be empty when I return on Tuesday. But I will never forget her, never forget the unexpected special companionship we shared. I may not be a better doctor but I will forever be a richer person for having known her.

Aspirations

One day...

I want to be ridiculously well-read

I want to run a marathon on every continent

I want to ride the Trans-Siberian Express.

Shopping

I had a unusually quiet call Sunday night - only 3 C-sections and one admission, a little 960g baby who luckily did not need ventilation. In between I managed to get in an uninterrupted block of four hours' sleep. And for those who think that on-call sleep is never quite as good as 'the real thing' - wait until you have a baby at home! Suddenly the bed in the dark recesses behind the labour ward, still with the same bed linen as three calls ago (two weeks?) allows me to fall into the deepest most enjoyable sleep.. even if it only lasts a few minutes or hours.

So for a change the post-call afternoon yesterday was not spent all grumpy trying to catch up on lost (forever?) sleep. Hubby was also at home, and we decided to take the monkey on a lunch-date. It included a stroll through the mall and a very tasty lunch - we ate while Emma charmed all the waiters and the chef with her million-dollar (toothless) smile :). And the stroll (as always) included a visit to the bookshop...

I have to confess, I am addicted to books. There are times when I just don't allow myself to walk past my favourite bookshop (usually when the budget gets extremely tight) but these times usually do not last more than a few weeks. Yesterday, luckily, I had a few hundred rand in vouchers to indulge myself... and it was hugely satisfying to pay R8 (the amount that remained) for three brand-new books. Now just to get the time to read them, and the other 20-something books stacked on my to-read-pile...

On death and dying

For those to whom the title sound vaguely familiar, I am borrowing it from a lady called Elizabeth Kubler-Ross, whose book of this same title has been staring at me from my desk from underneath a steadily thickening layer of dust, for the last (yes, you guessed it) three months.

Do I remember myself saying distinctly that children with cancer are not busy dying? Maybe I should reconsider such a bold statement...

In January, my second week at oncology, I was working in the very busy and sometimes chaotic oncology outpatients clinic (a small stuffy room in the back corner of the ward that can get quite claustrophobic with patients, mothers and doctors competing for the last gulp of fresh air). Most of the patients who were diagnosed the last few months of 2008 and had spent a few weeks/months in the ward were sent home for Christmas, and most of them came in those first two weeks of January to be readmitted to continue on whichever protocol of management they were busy with over the festive season. All of the readmitted kids needed bloods to be taken, forms to be filled in, treatment to be planned... Suffice to say it was a very chaotic outpatients clinic and I was hopeless and cluelessly stuck in the middle of it (luckily with a very helpful and unusually mild-tempered consultant). Into the midst of this chaos one afternoon entered a very worried-looking young lady (maybe around 20 years) with her younger sister who, at first glance, needed immediate attention. She was as white as a sheet.

Now just for background, I did my internship in a secondary hospital and spent 4 months in O+G. After I had spent a bit of time diagnosing and resuscitating women with ruptured ectopic pregnancies, I acquired the sometimes impressive ability to quite accurately predict a haemoglobin (Hb) count. Younger doctors and students tend to look at you as if you are going mad when you predict an Hb of 4 or even 3 (normal is around 12) - they do not expect the patient to still be alive and kicking with such a low count. In O+G I saw a few ruptured ectopic pregnancies causing massive intra-abdominal bleeding and very low Hbs. And (unlucky me!) on day one of my gynae rotation in internship I learnt that when you see a patient with such a pale tongue, you run. Not as in run away, but as in run to the blood bank/ emergency blood freezer/ wherever you can find blood urgently. As in URGENTLY.

So on this afternoon, in the madness of oncology outpatients, the very worried older sister quickly explained that the patient (10 years old) had been treated in 2005 for a cancer found somewhere in her abdomen. They came in with her old file, impressively thick, and said that she was feeling a bit dizzy... And yes, you guessed it (again), when I asked to see her tongue I felt my stomach roll into a tight ball and my brain just saying "run! run! run! blood bank! emergency!!"

Her tongue was the same colour that I remembered so clearly from those ectopic pregnancy days. I told the intern with the little authority I could muster (after she had been watching me for two weeks basically being clueless and helpless in a new ward) "this patient has a Hb of 3! we need emergency blood!"
Obviously it was not quite the same as someone with a ruptured ectopic pregnancy who is actually busy losing blood into the abdominal cavity, but I think all the times I resuscitated those patients came in handy. Before long my patient, lying on the bed with big, scared eyes, was receiving the first of three units of blood and I had time to listen to the story and open the file.

This little girl was initially diagnosed with an ovarian germ cell tumour in 2005. It was successfully treated and managed and she was discharged with a clean bill of health after completing therapy. However, in the course of the management, she had received a lot of strong, very toxic chemotherapy. And now it seemed as if she had leukaemia.

An urgent full blood count with blood smear confirmed the presence of a massive predominance of blast cells, and a bicytopaenia (with the very low Hb she also had very low platelets, which could cause her to bleed from basically anywhere). Her Hb, in fact, was even lower than my confident prediction - is was 2.5. Eish. An urgent bone marrow biopsy confirmed acute leukaemia, the type fitting with the presence of DNA damaged cells (the damage obviously caused by her previous chemotherapy). This beautiful little scared, big-eyed girl had another cancer. Yes, you heard me correctly, she was 10 years old at the time and had just been diagnosed with cancer for the second time.

Treatment was commenced immediately, and early in February I assumed the responsibility of looking after her daily progress in the ward (instead of struggling through outpatients I was now promoted to being responsible for all the patients in the ward with leukaemia or lymphoma). From the first day I realised that this girl was different. She had a way of looking at you that was way beyond her years. She was always friendly, full of jokes, and willing to help. But underneath all the jokes she was really mature and perceptive for her age. Before long we surprisingly found that we had become close friends. Yes I admit that I saw the danger and possible pain of getting emotionally involved but I could not help it - we were just on the same 'wavelength'. We understood each other, we talked about the future and future plans, she joined me on ward rounds, we talked some more, we had a picnic under the big tree opposite labour ward to celebrate her 11th birthday...

She did relatively well through her first two cycles of chemo, and completed the third cycle this week Tuesday. Then on Wednesday she started having convulsions, yesterday morning she could not see properly anymore, and today she cannot walk on her own anymore. The CT scan of her brain showed nothing much, no obvious tumour, but she is rapidly deteriorating.

Suddenly I am not just a doctor in the ward, I am a friend who worry and worry and wipe away a tear now and then, trying to remain outwardly professional while inside I am heartbroken.

Is she dying? I do not know. But she may be. And she is going to. Her prognosis is poorer than the other leukaemia patients, considering that her cells are damaged by the previous chemotherapy and mutate just so much easier. Just the other day after saying goodbye I watched her little forlorn figure skipping back down the corridor to the ward, turning around to wave goodbye with a smile stretching from ear to ear. Now, that cloaked figure with his scythe (the one that Axel Munthe* and Marcus Zusak* described so well) was hovering ever closer...

I just hope that the companionship we shared the last few weeks and the little love I can still give will make a small difference - even if just to help her accept the inevitable.

* Two of my favourite books of all time "The story of San Michele" - Axel Munthe, and "The Book Thief" -Marcus Zusak

General update

After not really blogging for about three months and after spending the last 2 evenings devouring three years worth of excellent blogging by a person I know/?friend ;)/colleague, I have a head exploding with post-ideas and plans. So much so that I really don't know where to begin. I want to post a monkey-update (she has reached a whole list of milestones since the last update!), I want to explain why my Comrades-plans sadly derailed, and I want to... talk about death. Amongst other things. Seeing that it is Friday night, monkey is sleeping peacefully and hubby is away on a nightstop, I decided the better way would be to split the post, separating everyday blah-blah from serious sadness.

So starting with everyday news... Emma is creepy-crawling at the speed of light (especially when our cat makes a sudden appearance on the other side of the room), she is pulling herself up to stand (captured the first successful try on video!), she is saying mama, papa, baba, and a word I will spell "ummm-ah" which sound suspiciously like she is trying to say Emma! I know I have said this before and this will not be (nearly) the last time but she is really growing and developing unbelievably fast. And she is beautiful and cute and she claps hands, kisses, waves goodbye... just too oulik for words! :)

About Comrades I don't feel like saying much aside from the fact that part of me is really really extremely disappointed. I was looking forward to the Challenge, I was motivated, I was even prepared to wake up early a few times (which is a lot for me to say!)... but work and studying and family just took too much time and energy. And at this stage of my life family, work and studying has to take priority. So I will sadly postpone big C #3 until a more suitable time, and in the meantime maybe try to work on my speed a bit ;) while regaining my pre-pregnancy/baby body and muscle strength. (On the topic of training, we have a family challenge for the 94.7 cycle race, so maybe I should start cycling before another three months whizz past!)

Pondering another post about the importance of (and my dependence on) family. Parents, siblings and hubby out of town at the moment and feeling pretty alone already. Luckily there is such a thing as in-laws ;)

Remembering why

Today I started my last month in paediatric oncology. As I mentioned before, I was amazed by the amount of, lets call it (by lack of a better explanation) 'job satisfaction' I unexpectedly found in the paeds oncology ward. As I also alluded to before, I had in my mind's eye visions of terminally ill, miserable, sad patients, struggling through endless chemotherapy causing long hours of misery, nausea, vomiting, and who knows what else. How wonderfully surprised I was to find a place filled with... life! Kids with cancer are not busy dying. They are busy suriviving, getting over it, and sometimes just temporarily irritated with the inconvenience of having to deal with a few side-effects of therapy. Yes there are complications and bleeding and fevers and pain (lots of it at times) but there is hardly ever 'giving up'. The resilience of 'my patients' (oh yes, they belong to me!) never stops amazing me.

Of course another very special aspect of working in oncology is the fact that it is a relatively constant patient population, and very soon you find yourself being incorporated into the daily existence of every child. You start off by memorising weird and wonderful diagnoses, but before long you are able to piece together names, faces and (now less weird) diagnoses. Then, after a few weeks, you realise with a smile that you have bonded, in the true sense of the word, with a bunch of kids. Even though they come from completely different backgrounds, don't necessarily speak your language, didn't initially like this new stranger sticking needles into them for a whole long list of tests that make absolutely no sense to them... you suddenly find yourself part of the team. You are no longer a stranger. Slowly but surely you even get to know the finer nuances of their unique personalities, and you pride yourself at being able to spot the temperature spikes from the other side of the cubicle. You know each patient's reaction to chemotherapy, you anticipate the complications, you even feel up to managing the odd complication. And in a sudden quiet moment of clarity you remember again why you decided to study medicine. You are transported back to the days when you were full of ideals, all starry-eyed and innocent, making plans to change the world. And you know that, behind your tired eyes and underneath your thicker skin, you are still the same person. Maybe, for a few of these kids, you can still change the world.

Monkey update