The last days in hospital before going home

It's been a while. I'm home and have been for almost two weeks, but quite frankly: I haven't been in the mood to write anything: life is happening.

The last days in hospital passed easily: my white blood cell production increased rapidly and I was out of the sterile room on 14th December. Two days later I was released. In the interim, I shared a room with a guy who was struggling, and whose mood was really low. He slept most of the day and watched TV from morning until night. Without headphones I couldn't practice my Swedish, watch videos or listen to music, which was frustrating, however I was able to write this little poem to Amy and Rosie. On the positive side: I could move around, use a flushing toilet (instead of washing from a bucket) and have a shower (instead of washing from a bowl).

I also met the lady who had been my neighbour whilst in the sterile room. I had only known her from her coughing and some muffled talking. She told me that it had made her happy when she had heard me whistling. That felt good to hear. I'd probably been whistling Monty Python's "Always Look on the Bright Side of Life". I'll never regret spending half of my waking hours as a teenager watching The Life of Brian with my best friend, Stuart. It seems to have embedded itself in my psyche, as I have usually had a positive outlook.

It turns out that the transplant really did go very well: my body reacted quickly, and I had had only very minor side effects. One nurse told me that the way I got through it was, "one in a hundred". Later I sent my discharge papers to my haematologist in Budapest, whose reply was very encouraging:

"the two main points are that you went into transplant MRD negatively and it went well, these two together are highly suggestive of a very good outcome."

Himalaya

My friend Suzi set me this challenge a couple of days ago, it was a lot harder than I thought it was going to be. A really good and satisfying challenge which I grappled with for almost 2 days.

• Write a poem that rhymes that will make your kids smile.
• It must have at least eight rhyming lines.
• It must teach them something without them realising (even if that is that dad ain't no poet!) 

Himalaya

In the land of the yak, where the mountains are high,

And the skies are a beautiful blue.

Off we went for a walk, your sweet mummy and I,

Trying hard not to step in yak poo!

We saw views in this, the most amazing of lands,

Which your daddy still dreams of today.

And we drank from the river, ate our food with our hands,

For "dal bhat" should be eaten that way!

We looked up at the stars in the dark mountain sky,

And we both made a wish as one fell,

Can you guess what your mother's wish was? Can you try?

Let me say: mine came true! And I'll tell!

Dear 15 year old self

An old school friend, Suzi, set me this challenge in the middle of the night:

"Write a letter to your 15 year old self (you don't have to post this)"


Dear Joss,

Don't panic! It's me: You. Still alive and kicking in 2016.

I wanted to let you know that you are doing just fine. You have some fantastic times ahead of you. Many things won't turn out like you expect, but you will find your way.

I am not going to tell you to change a single thing.

Sending you a big hug from the future,
Joss

The train stopped quickly and the man jumped out into the inky darkness...

My good friend Colin set me a challenge to write a short story, starting with the title of this blogpost. This is my effort:


The train stopped quickly and the man jumped out into the inky darkness... 

He landed softly, and nimbly crossed the tracks, hurdling a wooden fence, disappearing into a grove of trees in what appeared to be someone's back garden. 

His train was late. Even more than usual. The toilets were blocked, and he was dying for pee.

Before privatisation, he could have got off the train earlier, but that station was closed years ago, despite rumours that it would reopen. It was a pub now.

So he pulled the emergency cord and did a runner. He sprinted up the garden towards the house, seamlessly avoiding obstacles despite the darkness.

Approaching the side of the house he tested the side door. Finding it unlocked he entered silently. All was dark inside except light from a wee window looking down on what appeared to be a laboratory. Below, a dog lay unconscious on a metal slab with an older man leaning over it. A knife in his hand.

He suddenly looked up...

"Ah, you're here! Come down, you'll find this interesting."

Immune System Down!

As expected, the chemotherapy (melphalan) has done its job and kicked my immune system out of the park. Whist my transplanted stem cells and the daily dose of Colony Stimulating Factor play catch up, my body and mind are taking a hit.

Earlier in the week I was full of energy, so much so that I thought I was getting happy drugs. People were sending me challenges which got me so excited that I would spend half the day on them. Last time I posted my "no gravity" pictures. I also wrote a recipe for a new tomato and olive bread. It was a lot of fun to write and took half a day, despite building it in my head in about 30 seconds. On Facebook I posted a black and white photo of a body part to make it look like a landscape. In my head it was like Uluru (aka Ayers Rock), or a rocky outcrop with a backdrop of the sea on an overcast day. In fact it was my hand against the translucent window in my room. It kept me busy and excited for hours.Thanks to Colin for the inspiration.

Then slowly I became more tired, taking one or even two naps a day. I was out of breath leaning over my basin to wash myself (lowering haemoglobin levels). I started to get irritable, especially about the shitty, and meagre portions of hospital food.

Another side effect is a sore mouth: with little to combat antigens, the mouth gets infected easily. So far, thanks to a strict oral hygiene program I've avoided a sore throat though. My doctor had told me that I would soon need to get Heparin (an anticoagulant) as my platelet levels were dropping. I was still getting exercise though and it made me feel good. I'd put on some energetic music, and walk up and down the 4.5m space my drip pipes would allow for half an hour. This got the heart racing and the muscles warmed, followed up by a few deep squats and deep breathing exercises. By Wednesday however, my platelet levels hit the threshold and I had to stop exercising to avoid any risk of blood vessels rupturing.

This is when my mood started to drop. I tried to do more challenges (e.g. learning Jabberwocky and writing a story)but gave up, so now it's more about passing time. I read a little (a biography of the great Belgian cyclist, Eddy Merckx), organising January birthday presents for Amy and Rosie. I found a silly car game to play. The best thing I found of all though, was learning Swedish via a Babbel app. I've spent hours learning expressions, testing my pronunciation and have been thoroughly enjoying it. I never had the energy to learn when in Sweden, and always regretted the opportunity to get beyond a few basic phrases. I hope my enthusiasm continues: I'm going to have the time to keep learning in the coming months. I love languages!

I've also started to get a nostalgic (and somewhat emotional). Yesterday I was thinking that exactly 18 years ago, Katie and I had just completed our 18 day Annapurna Circuit trek in the Nepali Himalaya. It was the most wonderful experience of my life. Not only was it the most beautiful place I had been, it was when I really knew that I had found the love of my life.

Being a romantic type, I spent the morning desperately trying to find a florist who could deliver red roses and a card to Katie. I wanted her to know how much I still love her and give her some happiness in a very difficult time for her. After all, for me, the one with the cancer, it's relatively easy. You just try to get through it. But for those closest to you it's the hardest thing of all: the worry, giving emotional support, supporting the family, organising everything that needs to done to keep me safe.

Another thing I realised today, is the value of friends and family reaching out to talk, chat or banter over the internet. Almost every day someone (other than Katie) has called me, and it has helped me so much in recent days.

Hot off the press: the professor just walked in telling me that my blood cells are on the rise and I'll soon move to a room outside where I'll be more free to move around. And that means it's not long before I get to go home.

"Man är lyckligast hemma!"

Tomato & Olive bread - an experiment

My good friend Colin set me a challenge to invent a bread which I should make when I get out of hospital. With the dire food I'm experiencing, it has been a challenge to think of tasty foods. I don't know if it will work out, especially with the liquid measurements, but I will find out when I make it and adjust. If you fancy trying it out, let me know how you get on.

This recipe comes from my favourite of foods: the tomato. It comes from a recipe I taught myself years ago as a pasta sauce. I thought: why not make a bread out of it. It would be ideal with a fresh green salad, soft cheeses and smoked hams or salami.

Formula
Flour: 100% (soaker 100g; poolish 300g; final build 1046g: 1446g)
Liquid: 65% (soaker 100g; poolish 240g; tomato sauce ~500g; final build 100g: 940g)
Salt: 2% ( tomato sauce 7g; final build 22g)
Yeast: 1.65% ( poolish yeast 3g; final build 21g)

Makes two or three loaves

Process
The night before:
20:00 Prepare the soaker

The following day:
08:00 Prepare the Poolish
09:00 Prepare the Tomato and Olive sauce
12:00 Build the loaf
~16:00 Baking
~19:00 Eating

Soaker
100g cornmeal
100g water at room temperature
Mix in a bowl and cover with plastic wrap. Leave at room temperature overnight (~12 hours).

Poolish
300g white wheat flour
240g water at room temperature (80% hydration)
3g fresh yeast

Add yeast to 100g of water to dissolve, then add to the flour and remaining water in a bowl. Mix until the flour is all absorbed, then cover with plastic wrap and leave at room temperature for ~4 hours. It should have bubbles on top and be quite aerated.

Tomato and Olive sauce
3 tablespoons olive oil
1 medium finely chopped Makói onion (firm and brown/purple skin)
6 cloves garlic, sliced then crushed with the back of a chopping knife
400g tinned best Italian plum tomatoes roughly chopped
15-20 stoned and halved Kalamata olives.
1-2 tablespoons Balsamico di Modena
4-6 sliced fresh basil leaves
Maldon sea salt (to taste, ~7g)
Black peppercorns, freshly ground to taste

In a thick based pan add the olive oil. Add garlic first, then the onion over a low heat. The onion and garlic should have a coating of oil and should cook slowly and sweat, if there is any sign of caramelisation add more oil. Stir frequently. When the onions are soft add the tomato and raise the heat to medium. Add the olives. When close to the boil, lower to a simmer. Add the balsamic vinegar, salt and pepper. Simmer for 10-20 minutes. Slice the basil leaves and add. Stir and when the basil leaves have darkened and softened take off the heat, add extra salt if needed. Allow to cool.

Building the loaf
1046g white wheat flour
22g salt
21g fresh yeast
100g water at room temperature

Mixing
Add the flour and salt to a large bowl and mix.
Pour the yeast into the water until it dissolves, then add to the flour mixture.
Add the poolish, soaker and tomato and olive sauce.
Stir the ingredients until all the flour has been absorbed. Cover.
Let it stand for 10-30 minutes to hydrate.

Kneading and proofing
Empty the mixture onto a lightly oiled work surface.
Form the dough into a ball and knead the dough away from you, then folding it back towards the centre. Rotate the dough 90 degrees and repeat. After 12 iterations, form into a ball and return, seam down, to a clean, lightly oiled bowl. Cover and let it rest for 15 minutes. Repeat this process 3 times, then let the dough proof for an additional hour.

Shaping
Split the dough into equal pieces by weight, it should make 2 or 3 small loaves.
For each piece form into a boule, by rolling into a ball. Grab the opposite side, stretch it away a bit then bring it into the middle and press it down. Rotate the dough by 90 degrees and repeat until the dough feels tight. Place in a proofing basket lined with a tea towel covered in either durum flour or white wheat flour. Cover with plastic wrap lightly oiled with spray olive oil. Allow to rise for about 60-90 minutes.

Baking
Start fan assisted oven at 220C 45 minutes prior to baking.

When the dough has risen until about double the size, carefully roll the loaves out onto a greaseproof paper on a baking tray (or a peel with coarse durum flour).  Score the loaves with a cross and place into the oven (or onto a baking stone). Spray some water into the oven when putting the bread in.

After about 10 minutes the yeast will be dead and the oven spring will stop. You can lower the heat to 200-210C.

Bake for about 40 minutes for smaller loaves, 60-70 minutes for a big one. If the top starts to darken too quickly, turn off the fan and cover the loaf with a bit of tin foil.

When the loaf is ready is should give a hollow sound on the base when knocked, if not, put back for 3-5 minutes. Alternatively measure the internal temperature of the loaf, it should read about 93C when ready.

Let it cool on a rack for about 2 hours before slicing. Don't be tempted to cut it early, it is still cooking at this time.

Serve with a fresh green salad and creamy cheeses, smoked hams or salami.

Notes
The amount of salt needed for the tomato sauce is an estimate, adjust the amount of salt in the final build accordingly.
The liquid content of the tomato sauce is estimated, if the dough is very sticky, add more flour (carefully) if too dry add some water or even olive oil at the kneading stage.

Stem Cell Transplant & Fun

Day 0 - Transplant

An hour before the stem cell transplant, the nurse started hooking me up to a whole load of drips. Gradually various individuals arrived to witness my "rebirth": two professors (one requesting a photo), my doctor and two nurses.

A stem cell transplant bag essentially looks like a bag of blood, though it is primarily stem cells with a few red blood cells giving it the same colour. They gave me about half of what they collected the previous week. Fortunately the viability was high. Then they squeezed every drop of the two bags into me to give me the biggest chance. It was over in minutes. Then I passed out and only woke up for lunch.

One thing I have experienced in this hospital in comparison to others, is the attentiveness of the nurses and doctors. They really seem to make an effort to make you comfortable, sharing kind words, offering extra food. Food, I have to admit has not been a highlight. Lunch is passable but lacks vegetables and breakfast and dinner seems to be a carb fest, usually toast. Luckily I have a stash of tinned mackerel in tomato sauce (which I fell in love with in Norway on my solo bike trip from Oslo to Bergen).

Days pass quite easily, I'm rarely bored. I I'm listening to Orhan Pamuk's "My name is Red", an enthralling tale set in 16th century Turkey. I watched the Australia v England rugby union test match: I was hoping they wouldn't come in to measure my blood pressure. I've invited friends to set me challenges to solve. Initially I set myself to walk 1000 steps, not simple with an infusion limiting my movement to 4.5m. Marco challenged me to do "Slavic squats". Done. Jeremy to ponder which came first, the chicken or the egg? Easy.

"I already solved that at university whilst studying genetics.

Here's my theory: at some point in evolution there is such a thing as a pre-chicken, but due to genetic variation, there has to come a time when the next generation's DNA is no longer pre-chicken, but "chicken". Ergo, the first chicken egg preceded the first chicken. QED."

My favourite was from Gábor: I needed to take photos showing no gravity in the room. Here were the photos:

 

Generally, my mood had been so good that I even asked the nurse if it's a possible side effect of one of the drugs. Apparently not.

My theory: I've been given the opportunity to live my life again.

Home and back again

Things move fast. I'm already back at the hospital, and into my third day in my sterile room. I feel like I'm on the set of a disaster movie, or as one friend pointed out: "Looks like the first episode of the walking dead. Watch your back when you leave the room in two weeks".

I've had my high dose chemo (Melphalan) and beyond some temporary nausea and a headache I'm feeling fresh and optimistic. I'm occupying myself by reading, catching up with very old friends, watching this and that, and even checking work emails (mostly deleting them). My goal is to keep occupied and make the time pass.

Today I get my stem cells back, and before long I can expect to feel a bit rough. Today is day 0, and I should be out around day 15.

On Friday I got to go home eventually, but even that didn't go as planned. Rosie had been up in the night vomiting, so by the time I got home we all donned masks had a few cautious cuddles and sent the kids off to the grandparents for the weekend. We couldn't take the risk of me catching something just 2 weeks before my stem cell transplant. Fortunately they were back on Sunday, but on Monday night it was Amy's turn to be sick all night. I was consigned to either my room or another floor and it was organised for the girls to go back to the grandparents for a few days. Not ideal for family cuddles.

Meanwhile the hospital called announcing that they would like me to come in the next day to start my stem cell transplant. This was a shock to say the least, I'd been expecting to go back around the 10th December. Many questions were going through our heads:

Have I picked up something from the girls?
Is it safe if I have?
And how will they know if I don't have symptoms?
Is 5 days recovery between treatments enough?

I asked for some time so I could consult with my doctor. He wasn't available. As you can see, I accepted. Better to get this over and done with and be home for Christmas.

If I'm honest, whilst I was worried about the medical implications, it was being suddenly dragged away from my family, especially the girls, so unexpectedly which was the most difficult. The girls duly went off again, and we sneaked in a family cuddle and shed a few tears.

Moving into a sterile room involved some preparation. I would be allowed to take in a very limited number of things: tablet and phone were okay, a brand new notepad (I write everything down), underwear which had been ironed (I spent half the evening ironing: I never iron anything), water. I could also bring some food, which would be outside and brought to me on request. On arrival they even let me bring a book in, and I could leave some cash with them if I wanted something from the shop. And coffee, they would be able to bring me coffee!

The last piece of preparation was shaving. It all had to go. I'd already done my head and face, so I imagined with clippers I'd be done in 20 minutes. Ha! An hour later I was done and experiencing the novelty of smooth legs and armpits. Now I know the real reason why cyclists shave their legs: it's not about avoiding infection after crashes or aerodynamics, it's because silky smooth legs are irresistible!

Leaving Katie was hard, but she had to get home in the light since the car had started overheating (not the best for a 400km road trip). I had my catheter installed, an X-ray to check its position and then it was time to head in. Instead I hid in a dark waiting room and cried. A call to Katie gave me the courage to walk to the transplant unit, ring the bell and get started.