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.

I'm Alive! I'm Alive!

This afternoon, life flowed back into my lungs and into my soul, as I was able to take a walk in the fresh air with the sun shining for the first time in a week. It was an absolute delight!

Last Wednesday, my doctor gave me the expected news that the chemo had done its job, my immune system was now suppressed enough to start medication to stimulate stem cell production needed for my autologous stem cell transplant.

Good news, but from now I'd need to remain in my room and I should only come out if necessary, wearing a face mask. The nurses had told me "this is the boring part", but I'd prepared with books, games, logic puzzles and downloaded films. I quite honestly don't recall being bored once. For example, look at all these gems I learnt:

• Did you know that 0 is an even number? I'd always considered it not.
• Inigo Montoya (The Princess Bride) is Saul Berenson from Homeland! Amazing!
• Jonas Kaufman singing "Che gelida manina" from Puccini's La Bohème makes my limbs turn to jelly and absolutely takes my breath away.

Every morning around 4:30 am, a nurse would fiddle around with the pipes in my neck, drawing blood whilst I attempted not to wake up. By the time the doctor had arrived for work the results would come back via "vacuum tube post", and on Monday morning they informed me that my stem cell collection could start the next day.

Essentially it involved being plugged in to a dialysis type machine circulating my blood three times over about 4.5 hours, extracting as many stem cells out as it could in the process. It was painless.

The goal was to extract 8-10 million stem cells per kilogram body weight. On Tuesday we got 3.6, today 3.2, and tomorrow morning as much as possible, but it will surely be over 8 in total and hopefully closer to 10. Enough for two stem cell transplants. The transplant will likely be in early to mid December.

Friday I can go home!

Hurrah!

I cannot wait for my "family cuddle"! Whenever Amy or Rosie catch Katie and I cuddling, one will shout out "family cuddle!!" then they rush to us. I always make sure I can touch everyone with at least one arm and one leg. My heart melts. It's my favourite thing in the world!

These boots are made for walking

I've waited until now before writing because I wanted to make the most of being mobile. Sunday morning I woke up, looked out of the window and saw that is was dry. I'd had a good sleep and decided it was time to explore and get some exercise. Every day since then I have walked more and more each day, covering 37km over 5 days. Initially locally, then reaching further afield. This walking soothes my soul, keeps me fit, gets me fresh air and occasionally gives me some surprises.

The hospital is part of the University of Debrecen campus, there are a lot of international students, so it was not so surprising that I found a Panini bar which I returned to several times for breakfast, lunch and coffees. I was spoiling myself, and why not? Today I am not allowed out anymore as my white blood cell count has dropped, an expected effect of the chemotherapy.

I also explored the Botanical Gardens and the Nagyredei Park. It was good to be away from people and be amongst the trees. I discovered the park had some beautiful, enormous fir trees, and was filled with statues of Hungarian poets, one with a bookcase reminding me a quote by Cicero “If you have a garden and a library, you have everything you need.”. I've never read Cicero, by my friend Andy had it as his Skype mood message, and I always liked it. A bookcase in a park, what better?

But it was my final walk which was the most interesting. I was attempting a loop of the whole university campus and surrounding parks. I checked out the newly built Debrecen football stadium (it's always interesting to see how the government is spending our money). It's beautiful, by the way. I particularly loved how they built around the trees, even making holes in the structures to encompass them, although I suspect there is no tree growing on the pitch. Passing through the hospital car park, around 4pm, I was hailed down by a woman with an unusual offer: "I've got sex, would you like some?". I politely declined, but walked away smiling wondering who picks up a prostitute in a hospital car park in the middle of the day, and wondering where they go, back to the ward?

Since Sunday I've been feeling great. My Ukrainian roommate left and I enjoyed one uninterrupted night's sleep until I was joined by a nice but a little too talkative Hungarian roommate. Katie has visited twice, which has been a joy. It would be nice if I could see her more, but it's a 400km round trip for her, so not sensible to do more often. On Wednesday we ordered Korean food from a restaurant I had discovered on one of my walks. It was like a date, the food was good, the company the best and no one disturbed us. Perfect.

After the chemotherapy they have been monitoring my white blood cell count. On Wednesday it dropped to the right level to be able to start the Colony Stimulating Factor injections, which help to increase stem cell production, the idea being that I will have 8-10 million stem cells per kg for the collection, which they hope to do next week. I also received the news that they would like to start the stem cell transplant this year too, I had been led to believe it wouldn't be possible before January, but it will be good to get this all behind me. The drawback is that, there won't be much of a gap to spend time at home, and when I get the transplant I'll be quarantined in the hospital for 2-3 weeks and then at home too for a while, which will certainly involve Christmas and probably Rosie's, Amy's and my birthdays at the start of January. This makes me sad. I missed Amy's 3rd birthday when I was in Sweden and she was ill in Hungary, I didn't expect to have to repeat that. But this is more than about a few birthdays, and once this is over I'll be pushing my foot down to the ground on the accelerator pedal of life. And I'll be starting with cake!

My new friend the IV pole

Okay, I promise I won't share more pictures of pipes poking out of my neck. I hadn't considered how "minging" or "gross" they were.

It turns out that my roommate is not Romanian, but in fact Ukrainian. Not knowing either language I hadn't noticed, his accent had sounded quite smooth and unlike the hard Russian accents I have got used to. Perhaps because he is from close to Hungarian border in Western Ukraine, and definitely from the non-Russia loving area as when I asked if he was Ukrainian he said yes then held his fingers in a gun pose and said "Putin, boom boom!". Hard to disagree with him there.

I didn't write for the last two days because frankly, I felt like shit. Around 8pm on Thursday, my nurse wheeled in an IV pole and said "let me introduce you to your friend for the next 36 hours". In went in drip containing Uromitexan, the "antidote" to the upcoming chemo drug, overnight.

The night went well, I started to read a fantastic cycling novel "The Rider", which is about a Dutch cyclist taking part in a 150km race in France, it is very well written and we discover the intricacies of not only cycling tactics, but the thoughts going on in his head, both about other riders his mental challenges along the way. For a competitive cyclist it is a must read.

Getting comfortable in bed was a little tricky because of, you know...the minging pipes sticking of my neck. But I settled down to watch "Shakespeare in Love", it was fun but I found myself surprised to be teary eyed towards the end. This didn't used to happen to me, but I've found that having kids and perhaps going through what I have, I feel more comfortable being honest about my emotions. Of course it could be the drugs.

8:45 am, Friday  morning, in goes the Cyclophosphamide: the chemo drug. But I still feel fine, although I need to wheel an IV pole (see photo) around every time I need a wee, which is all the time, because I'm being infused with 4 litres of drugs in saline and I have to drink 3-4 litres of stem a day (which is pretty normal for me anyway).

I

I feel fine for the first 6 hours, I have a great appetite. I even read Amy a few pages of Wind in the Willows to Amy over Skype. Poor Amy has had to come home from school after vomiting onto her desk, she's picked up a virus, so Katie couldn't come to visit me. Rosie is packed off to the grandparents for the interim, to keep the thing isolated. I'm 200km away, so it's hard to arrange visits, so better that not everyone gets ill. Around 3pm the nausea sets in and I get something to ease it, it doesn't seem to go away, I keep drinking lots of water to help, it sort of sits there in the background making it hard to be comfortable. Moving about helps. I try to turn each trip to the loo into an outing, a challenge moving about with the IV pole. Around 9 they change the drip and I get something for the nausea which allows me to sleep until 2am. The nausea is rising, I try to manage it, but despite some more medication I'm emptying my stomach at 3am. All this time I'm wondering: I wonder if throwing up is actually going to be a relief, normally you feel nauseous when your body is wanting to expel something poisonous from your stomach (pints of cider come to mind), but this is in my blood. So I am expecting to still feel nauseous after throwing up. To my surprise I feel a lot better. It's funny how easily the body is fooled. It's temporary though and I'm up again twice more in the next few hours, the last time someone else is in the bathroom, but I hold out.

Saturday morning

My doctor comes with good news, the results from my bone marrow aspiration are in. I am MRD- (Minimal Residue Disease). In his smear test, he measures less than 3% plasma cells (I don't actually know what normal is), and the lab tests (I think this is blood) show no sign of myeloma cells even with the most sensitive measurement. As I understand, MRD is the name for small numbers of cancer cells which are left in the bone marrow after or during treatment and is the major cause for relapse. So it seems to be a good sign, but I just don't know enough yet about how significant it is. Hold the Champagne!
The nausea is still there, I manage the soft part of a piece of bread over an hour. Later I manage soup and pea stew, but leave the meat. The chemo drip is removed and within a few hours I'm feeling tired, but back to normal. I say goodbye to my friend the IV pole and take great joy in walking to the loo in 3 seconds.

Katie arrives, but very tired. This time she hasn't be painting all night, but going the grouting between the tiles she's fixed in various places in the house. We enjoy being together, but don't talk a lot. I recall a scene from Pulp Fiction where Mia and Vincent are in Jack Rabbit Slim's getting their "bloody as hell" steak and burger and the $5 shake, followed by the "uncomfortable silence". Mia says "don't you hate that?", "why do we feel is necessary to yak about bullshit in order to feel comfortable?", "that's when you know you feel really special, and you can shut the fuck up for a minute and comfortably share silence".

After she leaves, I take a sleep for an hour. Enjoy an hour with "The Rider" and around 10:30pm settle down to watch Spectre until 1am. I'm feeling more and more like myself again.

The big day today. Going to Debrecen to start my stem cell collection treatment. We had to be up early, so Katie made sure she got an early night. She made it to bed at 3:15am after painting the bathroom in knicker pink. In the morning our new shower cabin was being installed, and since the room needed a new lick of "sterilising" paint, this was the ideal time.

My first impressions of the hospital are good. The doctors and nurses are kind, speak English (and are even more kind when I speak in Hungarian), and the building and facilities are new, which is a massive improvement on the last building site of a hospital.

First up blood tests, a bone marrow aspiration from the sternum (not the huge pain-fest it had been last time around) needed for the stem cell transplant (coming later). This is a teaching hospital, so lots of students around, including a Belgian pair who will use me as their case study. I was astonished to discover both TV and wifi in my room though I couldn't get the latter to work.

I'll start my chemo treatment this evening and I'll be hooked up to a couple of drugs for 36 hours (cyclophosphamide and uromitexan). This needs a catheter in a vein in the neck. Having it "installed" was frankly awful, first an ultrasound to locate the vein, then in it went with a couple of sutures to keep it in place. My range of movement is reduced and I won't be taking the long walks into Debrecen for sightseeing that I'd optimistically fantasised about. Still, I can go outside and walk in the park, but I'll probably need to avoid jumping in puddles and cuddling any dogs. It gave me a bit of a shake though and it was good to have Katie around for a few hours whilst I came to terms with it and the starting of the treatment in general.

I have a Romanian roommate who speaks neither Hungarian, nor English. Which suits me fine. I have lots of books, audiobooks, TV series, films and Rubik cube to keep me distracted

The longer version

Best to have a look at the short version first.

Before hospital

Although I don't know for sure the whole thing could have started in July 2015 in Sweden. I'd got some sort of infection in my sinuses and didn't get it treated early. I travelled to the UK to watch the Ashes cricket test with my Dad and spend a couple of days with my family. They took me to an Italian restaurant to celebrate my 40th birthday, but I couldn't enjoy it in the way I would have had I been well. When I got back to Sweden I visited the doctor and got some antibiotics, but given my fuzzy head I misread the dosage and spent 8 days taking half the dose. In the end I got better.

They say Multiple Myeloma can be caused by a virus, among other things.

In December 2015, we had our company Christmas party. I nearly didn't go. I'd just heard that my best friend's father, a man a have known for years and have a lot of respect for, was losing his fight against cancer. He'd been given 2-3 months left. A large glass of single malt with a friend convinced me to come to the party, which I am glad I did. It felt good. However about 2 hours in, I started coughing up a lot of blood and rushed to A&E. They sent me home around 2am. The next morning I was back again and ended up at a lung specialist hospital for a few days. My lung's surface had been damaged by an infection I found out later after a few really nasty inspections. I'd also had pneumonia.

We cancelled our New Year's trip to Sweden, which we'd all been so much looking forward to.

I recovered for a few weeks and then thought life was back to normal.

In late January, I started to get back pain. It was pretty minor at the start, but by the end of February I had to stop cycling to work, every bump in the road hurt my back and I couldn't sit for long in any position. Getting out of bed was becoming very painful and after a while I couldn't even put my socks on. I started to wear slip on shoes with a zip, unzipped, to avoid having to lean over. Once I sneezed which caused a massive spasm in my back muscles which was so painful that I couldn't move, it kept me off work for a few days. Eventually I started working from home to avoid the pain caused by the commute.

Meanwhile I visited an orthopaedic doctor for the back pain, but he did little inspection and told me that I needed physio, massage and to go to the thermal baths. It was caused by me growing too quickly during puberty. The extra treatment his clinic could offer, but wasn't covered by my insurance package. I didn't go. I found another doctor who sent me for an MRI and they discovered a herniated vertebral disc. There was also a "vertebral oedema", but he didn't know what it was and didn't follow up. He told me that no surgery would be needed and I could continue with some physical therapy, which actually did help.

In March, I got pneumonia again. We cancelled our family ski trip to Austria.

Hospital

On May 27th, I could hardly roll out of bad and straighen my spine. I had to find something to grab on to and slowly straigten up, it was taking 15 minutes every day just to stand up. I told Katie that I couldn't take the kids to kindergarten and I watched the girls walking down the garden path through the window. We didn't say goodbye and they didn't look back. I didn't see them again for a month.

Katie came home and I was feeling pain in my chest, I thought I might be having a heart attack. She took me to the local doctor and she called an ambulance. At the first hospital they did an ultrasound of my heart: no problem there. Next was the local hospital where I stayed, not in intensive care, but under 24 hour supervision.

They ran test after test after test. X-Ray, CT scan, blood tests, urine tests, spinal tap. I was drugged up and I hardly recall anything from this period. My family visited, Vicky from Singapore, Lizzie and my Mum and Dad from England. A couple of big things happened: I suggested a name for Lizzie's new baby "Holly", somehow Ben and Lizzie liked it. This is immediately forgot. Then Vicky told me she was pregnant too! I prompty forgot this too and only realised during a later call when she told me that she'd gone for a scan. I am not unhappy that I don't recall this time.

My lungs were the biggest problem and I needed to be transferred to the lung hospital again, on the opposite side of Budapest, an hour from home instead of 20 minutes. I stayed there in intensive care. The main doctor was so kind and helpful. There I was put to work on a breathing machine to clear my lungs. Katie visited me every day with lovely food (hospital food is a disaster in every country) and later took me out for walks in a wheelchair. I'd lost 8-10kg in 4 weeks and could hardly shift myself in bed let alone stand. Physiotherapy in bed got me started and before I left I could take 30 steps with a Zimmer frame. Three people died in my room in this time. It seemed as though everyone who got on a ventilator was going to die. When I wasn't doing my breathing training enough at the start the nice doctor told me that I would end up like the guy next to me and die if I didn't do the training. That changed my attitude. Every hour I did that training and it turned out that it worked so well that my doctor presented my case at a conference last month. We are still in touch with her as she likes to hear about my progress.

I moved to a third hospital temporarily before returning to the lung hospital. There they diagnosed me and started me on some of the drugs for my treatment. I moved back there once my lungs cleared up and spent about a week there in my own room. I was pretty lonely, the doctor came for a few minutes a day and the nurses were formal: I got food and medicine, but they never asked me how I felt or if I was okay beyond medical complaints. My previous doctor suggested that I should ask to see a psychologist to help, but the nurse on arrival brushed off this request. I was lonely and my data traffic on my phone connection ran out. But Katie visited every day and my good friend Gabor came to visit me a few times. He even showered me when he really should have been getting home to his family. There are not many people (especially men, I think) who would do that.

During this time I was more lucid, but I was afraid to connect to even good friends. The only person I could talk to was Katie. I didn't know what to say to Amy or Rosie. I didn't want to accept calls to my family and I didn't even want to chat over WhatsApp to friends. Earlier I had to avoid the news and Facebook because I was so broken up about Brexit. I couldn't face it. But when I spoke to people it felt good, but there was a fear of getting back into normal life I think.

On 5th July I was released and I needed to return twice a week for the myeloma treatment.

Going home

A few days before my doctor thought that I should get out at the weekend. Katie took me in the car up the hills and we ate some food on a bench looking out over the city. By this time I could walk about 50-100m. It was hard and I needed to hold on to Katie's arm, but it was definitely progress.

On the way home we visited another doctor to get a second opinion, which supported my diagnosis and we learned some more information about the future treatment. I also learned how to inject the blood thinning medication I needed due to the drugs I was getting and my limited motion.

No-one was there when we got home. Amy and Rosie were in kindergarten and Katie's parent were staying with us to help out with the kids. When they got home, it was tough. I simply didn't know how to interact with them. They had been to visit me in the gardens 2 weeks before and it had been so nice, they got dressed up in masks and rubber gloves so I could hold their hands and they had sung songs to me at a distance. It was good. But at home I didn't know what to say or what I could do with them. I remember crying to Katie that I wanted "to be a real Daddy again". It took a while. Now I spent a lot of time with them and we cuddle a lot and play hide and seek in the garden.

About a week after getting out, my sister Lizzie came to visit for a few days. I think this was a real turning point. I'd talked to both my sisters in hospital later on and they had been so supportive and I felt I could really open up to them. She brought nutrition books blazened with "CANCER", I wasn't ready for that, but she read them and I learned a lot of good things. I'm eating very well now, and healthily too, in a great part because of her. She took me for walks and we chatted and chilled out. She cooked some lovely food too, some went in the freezer which very handy now that Katie had returned to part time work.

Mum and Dad came a few weeks after that. They drove from England and stayed almost 10 days. I wasn't sure how it was all going to work out, but by the time they left I wished they could have stayed longer. They fed us, kept the kids busy and helped after we had a burst water pipe which put both my room and their room out of action. I ended up sleeping in the sitting room for about 6 weeks and they slept on a mattress on the floor for the duration of their visit: not the class of accommodation that they are used to. I think they needed a rest when they left. Twice really critical things happened during their stay. Dad took the girls out cycling and taught Rosie to ride her bike. I'd been unable to do this for the whole year. She was a natural, tearing down the road within 2 days and almost doing track stands after a while. This enabled me to take longer walks (now around 1-2km) with the kids. The second thing was massive: we got to go to the bike shop. Although Katie's idea, having an extra car around made me mobile. We converted my bike to have a BMX handlebar, so that I could ride it on my indoor trainer without leaning over and protecting my bike. I'd been going to physio weekly, but I was still weak. We put the saddle right down and soon I was riding again,the first time since 26th February.

For those who know me well, or even not that well, you will know how important cycling is to me. It's no accident that I started the first post with a bike account and not the disease. In the past a weekend without a bike ride is a lost weekend. If I don't cycle most days my mood drops. Getting back on the bike, even though it was only for 2km on the flat first time, was a massive massive improvement to my wellbeing.

Now I can ride at race pace for almost an hour :)

At the end of August my other sister, Vicky, visited for a couple of days. She joined me in Budapest on a treatment day and we walked across Budapest stopping for coffee and lunch, before jumping on a train home. Then we went to a cake shop (sugar fee for me, to starve those pesky myeloma cells!). We walked 10km that day. We chatted a lot and talked about her baby due at the end of the year. The trip was over before we hardly had time to blink. :(

Since mid-August I started to work part time. I'm really enjoying it. Unfortunately my boss left during my hospital treatment, but the group I work with have been very supportive. I've been able to get involved in work I started before I got into hospital and learn a lot. I can't go into the office though, my immune system is still suppressed. I wear a mask in crowded places, I avoid schools and kindergarten.

Amy started school since I got home. Luckily I am not missing that, even though I can't go in. She loves it there and is making more friends than I thought she would. She had been so nervous about starting, but from Day 1 she loved it. She has such a thirst for knowledge, although I would like to help her not put pressure on herself to do everything perfectly.

Rosie started a new kindergarten and she loves it too. They do much more interesting things that in the previous 2 here in Hungary, though the Swedish kindergarten was #1.

Katie is busy getting the house ready for when I get out of hospital in January/February. The burst water pipe added a lot more work. The room I am in needed repaiting, replastering, a new floor and a new built in cupboard after the walls got wet and mouldy. She was doing a lot of work herself, and it was exhausting her. She couldn't find anyone to do the work. Luckily things came together, a friend found someone to do part of the work and a carpenter got a cancellation and they'll finish the cupboard when I'm in hospital this month.

I've already said that Katie has been a superstar. Both at home and being there in the hospital. But she has been a rock for me emotionally. It has been a hard time and when I've been at home on the phone to her in tears because I couldn't not stand to be alone she has always found the right words to soothe me and help me through the difficult moments. I love her so much.

And that feels an appropriate end to this long long story. But there is one piece missing, and that is what is next?

Well, I am optimistic! I told my psychologist a few weeks back that I was looking forward to the chemo because I meant that it is the door to the future for me.

On Monday at 7pm. I will apply to enter Vätternrundan, a 300km ride around a lake in Sweden. I've done it twice, but I had the outrageous idea that I would go in 2017 despite this cancer and broken vertebrae. I am getting stronger and stronger both physically and emotionally.

We started talking about the places we'd like to go and things we'd like to do. We started with an idea to go for a USA road trip with the family. 2017 maybe? California's Redwoods? Utah's salt flats and canyons, Arizona's Grand Canyon, Colorado's mountains. New England?

I hope some of you made it this far. I certainly won't blame you if you don't.

I love you all! Except for this cancer, it can go fuck itself! I'm not giving in!

The short version

Let's do this as a Q&A, it'll be fun.

You have cancer?
Yep.

What kind?
Multiple Myeloma.

What's that?
It's a blood cancer. Actually the real shit happens in the bone marrow. Some naughty plasma cells overproduce and grow too big and prevent white and red blood cell production leading to a suppressed immune system. It also sucks the calcium out of the bones and can really fuck the internal structure of the bones up.

Are you going to survive?
Well...at first I was afraid, I was petrified. It's a well known disease with a tried and tested treatment approach. Survival is about 99%, although the disease can return. It normally affects older people in their 60s. My body is strong and I'm young, so I'm going to get through this.

What's the treatment?

• 4-6 cycles of a trio of drugs: bortezomib, steriod, thalidomide.
• Stem cell collection (chemo drugs to stimulate stem cell production, then frozen).
• Stem cell transplant (autologous - self transplant).

Where are you in the treatment now?
I'm midway through the 5th cycle. I go for the stem cell collection next week, on 10th November. I'll be in Debrecen, Hungary. I'll be there 12-18 days. The chemo will give me smooth cyclists legs and I'm hoping my ear hair is going to fall out too.

In January I'll be going back and getting a big 'ol dose of chemo which will send the remaining myeloma cells packing (hopefully), but will reboot my immune system. I'll be in a sterile room for a couple of weeks with no visitors, then home. It'll take about 3 months to fully recover.

What causes it?
Who knows? I know how it started:

I'd been suffering with back pain since January and had got pneumonia twice in 3 months.
At the end of May, I got pneumonia again and had really bad back pain. I was rushed to hospital where I was treated for pneumonia and diagnosed. I got out at the start of July.

What happened with your back?
The disease broke down the structure of my vertebrae. The result is 3 broken verebrae and a slight deformation of the spine.

Anything else?
I lost almost 10kg and spent 5 weeks in bed. I couldn't walk. I had to get physiotherapy to get me on my feet again. And a psychologist to help me through the tough times.

How are you now?
I'm doing well. I put the weight back on. I'm riding my indoor bike, taking long walks. Working part time from home and feeling good emotionally as well. In June I'm going to Sweden to take part in Vätternrundan, a 300km cycling sportive. I'm looking forward to life.

Is there anything I can do to help?
Probably not. Although...

• I like hugs. Virtual ones are good too.
• Recommendations for books, films, TV series, games I can play on my iPad etc are great for when I am in hospital, especially when I won't be allowed visitors.
• Take the kids off our hands to let Katie get some rest :)
• Don't feel bad for me or feel you should offer to help. It's okay not to.

Can I contact you?

Sure.

• Hearing from people is nice, but be aware that I can't always reply in good time.
• Don't hold back writing to me if you want to but just don't know what to say. Just jump in and tell me how your life is going, it's good to hear about you too.

How has Katie been handling it?
Katie has been a superstar but refuses to accept credit for anything she does claiming "what else would I do?". She's right, but I still think she is a superstar. She visited me for hours every day in hospital, stopped working to be there for me, brought me fantastic food, helped with the doctors, communicated with everyone.

You made it this far. It wasn't that short was it. I haven't even got started yet! Want to read on? Here's the longer version.

"This cancer can go fuck itself!"

“This cancer can go fuck itself!”

This was what I said to myself yesterday when the house music upped its tempo and I picked up the cadence on my turbo trainer. My heart rate rose, and the power I hammered into the pedals increased. I felt uplifted rather than frustrated, it was a mini peak moment and it felt good.

If you’re reading this, you might be wondering what the hell a turbo trainer is.

Well, sooner or later the cooler and wetter weather will arrive and you may find yourself wanting to ride indoors. My solution is to put my bike on an indoor training device, hook it up to a computer and ride in places all over the world: Yosemite, the French Alps, The English Lake District, Norway and many other places. On this occasion, I was cycling in Oak Creek Canyon, Arizona. Today was Honister Pass, England. Next I am going to kick Alpe D’Huez’s butt. Want to know more? Go to the Tacx website.

To quote Mark Twain: “Get a bicycle. You will not regret it, if you live”. 

“Hang on a minute, what about the cancer thing?”, I might hear you saying.

Yeah, I’m going to have to explain that a bit.

Actually, it’s been a while, and some people know, others not. To be honest, there are two reasons why those who don’t know, don’t.

• I didn’t know how to tell you.
• I wasn’t ready.

Now I do, and now I am J.

I was inspired by a Facebook post by a friend, Raniero (he’s an inspirational fellow). He’d been rushed into hospital recently and he shared his experiences (thanks to Facebook for translating from Italian). It was that easy. I wish I’d done that. But frankly I was in pretty bad shape when the shit hit the fan (which was in May), it’s only been since late September that I’ve felt good again really.

I decided today to do a write up, so that you can find all about it without having to feel uncomfortable asking and to avoid me having to repeat thing over and over.

Depending on how much you want to know, here's a short version, and if you want to know more after that, here is the longer one.