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!