My Blog

At 27, I’m dying, but I feel content
A journalist is facing an early death because of leukaemia, but a brave campaign to raise awareness about bone-marrow donation can become his legacy

Adrian Sudbury
How can I describe what it’s like to be told, at the age of 26, that I’m going to die soon? People tell me it’s something they can’t imagine at my age. It happens, we know, but it’s not what anyone expects.

A couple of years ago I was happy, fit, in a job I liked, looking ahead to the future. I wanted children and I certainly didn’t think about my own death. Now here I am with my time running out. How long have I got? I don’t know, but a few months ago I was told it could be months or weeks. I won’t have kids, I won’t have the career. I haven’t got much life left. But the strange thing is that right now I’m having a good time.

Yes, there are sad moments, but there’s a lot of laughter too. My time is short, so it’s valuable - I don’t waste it, I use the sense of urgency I’ve been given to live as fully as I can and, I hope, to provide a legacy that will endure after I’ve gone.

All this began in the autumn of 2006. I’d had mild chest infections that I couldn’t shake off, but the main symptom was extreme fatigue. I’d wash the pots and have to have a lie down halfway through. The second time I saw the GP and he said it was a virus. "Take it easy, try a nice drink of warm honey and lemon." I realised that wasn’t going to help and the next day I went to hospital. In November I was told that I had leukaemia.

I was 25, fit and healthy, and you go from that to facing six months in hospital. I was cutting my teeth as a journalist at the Huddersfield Examiner and my plan was to move to London to get into national journalism. I had a girlfriend of six years, Poppy, and we had a flat in Sheffield. I was playing football, doing boxing training, not smoking, not drinking excessively. I’ve always been optimistic and I was confident that I’d make a full recovery.

I had acute myeloid leukaemia and a strange chronic form of the disease that the doctors hadn’t seen before. This meant they couldn’t give me a prognosis, but they offered a standard course of chemotherapy. Each chemo cycle lasts five days or longer, but you’re in hospital for about five weeks because the treatment is pushing back your bone marrow - the source of much of your immune system. Until that bone marrow regenerates and the cancer is removed (as you hope it will) you’re on the ward. That means you’re either incredibly ill or incredibly bored.

It’s unpleasant and it began to come home to me that even if I survive all this a lot of my life is going to be missing. I had two cycles of chemo and although the acute myeloid leukaemia was improving, the chronic type was getting worse. The only option was a bone-marrow transplant. By then I’d started a blog. I wanted to have something to show for the months of work that I’d missed and to dispel the myths about bone-marrow transplants. With the help of colleagues, I kept a video diary. We found a match, a woman from Germany. Transfusion takes half an hour, but then you have five weeks in isolation, which I found very difficult psychologically. You’re allowed only three visitors, for me my parents and girlfriend, but that’s it. You feel really unwell because you’re being hammered with intense drugs.

In September I got the double all-clear. I remember the phonecall from the hospital and this huge weight coming off my shoulders. I was so relieved that I didn’t have to think about death and treatment and complications. I could count down to going back to work, to a normal life.

The next complication was graft versus host disease, which meant my skin was dry, itchy and sore. Your new bone-marrow cells are grafting into the old bone-marrow space and they’re now attacking your own body. The treatment for that is high-dose steroids, which cure the symptoms but they bloat you and carry risks. The steroids stopped me getting back into my exercise routine, though, until early this year, I’d managed to return to my job by working from home. I was still hopeful I’d get back to this routine, but difficulties were piling up. One of the side-effects of a bone-marrow transplant is that it makes you infertile. The knowledge that having a family would be difficult has been the hardest thing to accept - harder than the thought of dying.

At Christmas I proposed to Poppy and she accepted, but in April she decided that she didn’t want to get married and my world imploded. I’d pinned all my hopes on being with her. There’s no blame, Poppy did the right thing, but it left me feeling worthless and lost and I did think about killing myself. I was struggling to think who would want to marry someone in this situation, someone who can’t have children. I can’t change any of these things, there’s no medical treatment that can offer me a cure, I’ll just be stuck in this flat in Sheffield with no hope. I wasn’t cured, but I wasn’t dying either. I felt as though I was in limbo. This was one of the times when the blog was incredibly cathartic because of the support I got from so many people.

What I wanted was a cure that would give me 95 per cent or 100 per cent of what I had before, or the outcome I have now, which was, bizarrely, better for me in a way.

About two months ago I was told about a major relapse that couldn’t be controlled. That was when I decided not to have any more treatment: though that makes me sound brave, I don’t see it like that. The chronic leukaemia has survived two cycles of chemotherapy and radiotherapy. It has resisted a new immune system and a drug called Glivec. I could have had more chemotherapy, but it was unlikely to help. I decided to stop the Glivec treatment and go back on the steroids: they give you a quality of life and you can enjoy what time is left.

It was a strange period because knowing I’m going to die soon became real, not just something that’s going to happen at some point. Part of me was sad and taken aback, though I wasn’t emotional. I called my parents in and we had a chat and I went outside for an hour to gather my thoughts. I sent texts to friends and family. I went back in to my parents and that was it. Total acceptance and relief because this was the way out for which I’d been hoping. Despite being unable to have kids, I want to leave a legacy. I can do something about trying to get more people on the bone-marrow registry. There is a huge demand for donation in the UK. My transplant didn’t work out, but I’ve had an extra 18 months of life because of the altruism of a stranger. I’ll always be touched by that and it’s motivated me to campaign to get compulsory 50-minute talks into sixth-form colleges about why it’s important to donate bone marrow, blood and organs. If people knew how easy it is then perhaps the 16,000 people in the world waiting for a bone-marrow match wouldn’t have to die.

I got in touch with Kali Mountford, MP for Colne Valley, and a few days later I was in London and had 20 minutes with Gordon Brown. The idea is gathering momentum and I hope the talks will become a permanent fixture for 17 and 18-year-olds.

These few weeks have been a peculiarly pleasant experience; difficult certainly, but if you to ask my family if we’re unhappy the answer would be a resounding no. I’m staying at my parents’ home in Nottinghamshire now and it’s open house, people come every day and we have good food and drink. Thank God for the steroids.

Even though I’m getting more and more tired, life is fabulous. One of the most beautiful things about this situation is that people are so honest in a way I haven’t experienced before. People just go straight to what they want to say. I’m conscious that knowing there isn’t a tomorrow is a liberating experience that only a few people have.

I don’t think I have anything to be scared of. After death there’s either something fantastic or there’s nothing, and that’s fine. I’m a bit tired. I’m looking forward to a rest.

baldyblog.freshblogs.co.uk

To petition about bone-marrow donation: petitions.pm.gov.uk/bone-marrow

I am sad to say that late last April, my deareast oldest sister passed away.  Although she was not 100% healthy, we all thought that she would have many many years ahead of her. 

It all started with a text message from my other sister in the middle of the night when I was sleeping peacefully, telling me the sad news.  For a minute I thought it was a dream, but hearing my sister sobbing when she picked up the phone brought the reality.

My family was very understanding, they told me that I did not have to go home.  I thought about it for a short while and decided that I had to go home.  I was all over the place, but found my focus a bit later.  I managed to book myself on the next flight, sent out emails to my team telling them what to do while I am away, cancelled plans with friends, emailed my boss that I have to leave without even discussing anything with her.

Morning arrive and friends started to call and sent text messages.  I deliberately did not answer any calls, too exhausted and knew that I would just cried again if I answered any of those calls.  They were all very supportive and wanted to help.  My boss called, and I had to pick up the phone, then I broke down, I was just sobbing and could not say many words to her.

The rest was a blur… I was calm as long as I did not have to talk to anybody about my loss.  I even made lots of jokes during the way… I guess I tried to over compensate.

In Jakarta, I arrived a day after the funeral.  Everybody sad but amazingly being at peace with the loss.  My mom cried when she talked about the funeral, nobody expexts they will see their child to die before them.  It was very comforting to be with my family.  I did not even want to contact any of my friends, I did not have much time and energy.

I found the most significant factor that helped us was our believe in God.  I am not a religious person but I am hoping that my sister is currently at a better place and hoping that maybe one day I will meet her again.  Made me wonder what an atheist or agnostic think when to lose their loved ones?  What will help them go through the sadness? 

Also, I learnt that the true reason for me to go home was for me, not for my sister, not for my parents.  I knew my sister would not mind if I did not go home.  But I needed to go home, I needed reassurance that the rest of my family is still strong, I needed the comfort and love that they could provide me. 

But I can’t help to feel that I do lost a piece of myself though.  I realised that my sibblings are a part of me.  Somehow I felt a small part of myself is gone when she passed away.  But I am lucky that I have three other wonderful siblings and know that they will be there for me when I need them.  Also for my dearest oldest sister Ari, I know she is watching me and sending her love.

Love you sis… and we miss you.

Am working in the Bahamas for two weeks since last week.  Enjoying the weekend now.  So what I think about the Bahamas so far:

- People are relax and friendly.  They are slow!  But hey, that means they enjoy life right?  Even service in MacDonalds or Starbucks are slow!

- They love conch, you can have it as salad, as fritters, fried, steam… everything.  And I have tried all possible way of conch cooking.  I am conched out!

- They do not see Indonesian often (or never!), so I was a big hit

- I rode a scooter for a first time and sped to 50 miles (70 km) an hour!  Yeah Baby!

- Lovely beaches…. but of course Indonesian beaches are as nice

- Dodgy phone system.  The phone system collapsed for two days when I was here. 

- Full of Americans… which can be good or bad

- Cheaper goodies… american price with no sales tax.

- American portion at restaurants…. I will not weigh myself when I am back in London.

Cheers from the Bahamas!

Evi x

It’s almost Christmas You can’t help it to notice and even get involve into it…. Christmas is such a big event in this country so no matter what your religion is, you get involve, because really this festive season is for everbody here And Christmas gift is one of the things that make it more special. When I just moved here, I was not really bothered about Christmas But then I noticed that I got Christmas Cards and then Christmas Gifts from friends What do you do? So I started to reciprocate…. I know my friends have started their Christmas shoping list and will do their Christmas shopping soon. So I started to panic….. What to do??? The challenge for me is to decide who I should give gifts to and make sure that if someone give me gifts I have something to give back to them…. So this year, I found a perfect solution. There is a charity website that sell a lot of gifts in the form of donation in all sorts, so I bought loads of donation (not sure you can say that you have bought donation???) and will give them to my friends. And if I have too many, no worries, as they are donation anyway so the money will be useful for the recipients (of the donation). No stress about going to the shops on the weekend with thousand other shoppers.

What do you do when you live in a far away country

Your family is so far away

What will happen if something happens to you?

Will someone care for me? Will someone be there for me? Will someone have the time to listen to my sad stories and worries?

Even if you have a partner, a lover or even a husband? What do you do when your relationship turns sour?

Sometimes I am asking myself that question and I know a lot of my friends have this doubt in them as well

And this question sometimes makes me want to just drop everything and move back to Indonesia to be closer to my family.

But…………………

I know there are angels everywhere and my true friends are one of them.

I have seen it and experienced it again and again.

That true friends are always there for you.

Of course, it is all two ways relationship, you can not only take and take. You need to give as well.

But, they are there for you…….. Always…….

For all my dearest friends…. Thank you for being there for me.

Since I moved to London I have developed my morning routine. Wake up,
get ready, go the office, on the way to the office stop at pret a
manger, birleys or bene bene to get my coffee (skinny latte) and breakfast
(toasts, croissant, etc).  Go to my desk, swich on my PC while sipping my
coffee, read my emails while still sipping my coffee and say hello to
my boss and have our morning chat while still enjoying my coffee. 
Somehow eventhough I have to travel for my job, I can maintain my morning
ritual, in London, Sydney, Tokyo, Singapore, New York, Zurich, Barcelona. 
Except in one country..... and guess which country it is?  Italy....
yep, Italy, the land of coffee drinker.
I am now on my way back to London from Milan, where I have just spent
three days trying to somehow keep my morning routine.  One thing, the
Italian drinks esspresso.  Of course you can have cappucinno, but in some
places, cafe latte is too much to ask for.  And skim milk???? what are
you talking about???? we only have full fat milk here.  I like my
coffee with skim milk not because I am worried about the calories (since I
have been having tiramisu every night in Milan, don't think you can
accuse me of being a calory obsessed individual), but I just don't like it
with full fat milk.  But I guess, it is better than nothing.  And you
want take away coffee??? they would look at you with a funny glare?  Ok
if you insist, and they produced this plastic cup which is not design
at all for hot drinks!!!!
Even in the office they do not have a coffee machine, but you have to
go downstairs to the cafetaria and the same drama would start.  So on
the second day I decided that I could actually bring the cup (the china
cup) upstairs, but I did not find the cup was big enough to last me more
than 5 minutes.
Don't get me wrong.  I love being in Italy.  The people are so lively,
the food are so nice, the weather is tropical compared to London.  But
being in Milan made me realise that my skinny latte in the morning is
actually one of my little luxury in life that I enjoy so much..... so do
you know what will I get tomorrow morning when I am going to the office
in London?????

Hurray…..

Gue lulus ujian CFA level III.  Akhirnya kelar juga, phew.  Jadi nggak ada lagi yang namanya belajar mati matian di bulan April / May tahun depan he he he, temen temen sampe pada bosen kalau ngajakin gue pergi, soalnya jawabannya selalu, sorry nggak bisa nih, harus belajar.  Yang ada sekarang udah ada yang nanya abis ini mau ujian apa lagi…. wah sorry ya, otak mau di istirahatkan dulu, jadi no more exams for now!

What do you do when you are in the English Country side?  Ramble atau jalan jalan di bukit bukit of course.

Jadi hari jumat, karena cuacanya enak, Oli, Abi dan saya jalan jalan di bukit bukit di Shropshire selatan.  Di tengah perjalanan, kita melihat genangan air (yang lubangnya awalnya di sebabkan ada traktor lewat) yang penuh dengan kecebong!  Abi dan Oli langsung sibuk membuka jalan buat para kecebong (karena banyak yang terperangkap di telurnya sendiri), Abi langsung saja memasukkan tangannya ke genangan air yang berlumpur itu.  Saya sih nonton aja ha ha ha, abis rada rada geli gitu lho.

Di rumah lalu kami cerita ke Bapak Ibu Morris, tentang kecebong kecebong itu.  Dan langsung mereka semangat, dan bilang kalau mereka butuh kecebong buat kolam yang dibelakang rumah.  Dan Oli langsung bilang kalau saya dan Oli bisa kembali kesana bawa ember, untuk ambil si kecebong kecebong tersebut.

Lalu dengan bersemangat kita pergi ke genangan air yang sama dan sibuk memasukkan si kecebong ke botol air dengan menggunakan gelas plastik.  Tapi herannya saya kok jadi nggak geli ya ngobok ngobok genangan air berlumpur he he he.  Dan dengan bangga kita balik pulang dan tunjukkan hasil buruan kita ke bapak dan ibu Morris. 

Nggak pernah tuh saya pikir, bahwa suatu hari, saya akan nangkap kecebong.

Hari sabtu kemarin, kita berempat makan siang di Hotel Dinham di Ludlow, and it was one of the best meals i have ever had.

Why???  Is it the food?? well, of course, but there were more to that.

Waktu kita sampai di hotel, tersebut, langsung ada pegawai hotel yang menyambut dan bilang, you are here for lunch aren’t you? lho kok tau ya.  Lalu kita diminta duduk di salah satu lounge mereka (jadi nggak langsung ke meja buat makan).  Lalu dia tanya kalau kita mau minum sesuatu dan juga kasih menu makanan ke kita.  Menunya tidak panjang, tapi cukup variatif.  Dan si ibu pelayan kembali lagi dengan minuman dan catat pesanan makanan kita.

Setelah beberapa menit menikmati minuman sambil ngobrol, kita diberi tahu bahwa meja sudah siap.  So pindahlah ke meja yang terletak di conservatory nya hotel Dinham.  Tidak sampai lima menit kemudian terhidanglah makanan pembuka.  Saya sih nggak pesan makanan pembuka, soalnya saya sudah ngintip menu dessert, dan oke punya, jadi no starter biar ada tempat buat dessert he he he.

Semua orang terkesan dengan kualitas makanan, daging sapi saya empuk dan lezat.  Kalaupun ada kritik ya paling kenapa ya porsinya kecil he he he, tapi bagus juga sih, jadi masih cukup tempat buat dessert.  Saya makan sticky toffee pudding buat dessert, and it was delightful… tidak terlalu manis tapi masih cukup nendang, just right for me.

Lalu pertanyaan selanjutnya adalah, mau minum kopi atau teh?? of course…. dan disarankan kita pindah ke lounge untuk minum teh dan kopi.  Kita pilih sofa di depan perapian api, very cosy.  Rasanya everything just stop, and kita semua merasa relax sekali.  Ludlow hari itu kan sibuk sekali (kayak Bandung kalau weekend gitu, crowded), tetapi di hotel Dinham, semuanya relax dan tenang.  Tidak ada kesan terburu buru, sehingga rasanya sama lho dengan pergi ke spa.

Datanglah si pelayan dengan nampan besar berisi kopi dan teh kita.  Dan tentu petit four!  Yum yum….  Lovely end for our meal.  Tidak terasa kita sudah di hotel Dinham selama tiga jam. 

Saya pikir, yang membuat semuanya itu terasa spesial ialah karena hotel tersebut suasananya Inggris sekali dan sangat welcoming.  Dan juga pindah pindah meja itu juga membuat acara makan siang itu lebih relaxing (jadi nggak cuma duduk di meja makan saja), duduk di sofa really makes the difference.  Dan juga the food was beautifully presented.

Billnya??? not cheap, tapi it worthed every penny

Karena daku naik Singapore Airlines pas balik ke London dari Jakarta, jadilah harus naik pesawat ke Singapura lalu ganti pesawat di Singapura. 

Setelah ditangisi nyokap pas gue pamit di cengkareng, boardinglah daku ke pesawat.  Seorang ibu setengah baya duduk di sebelah daku.  Percakapan kamu dimulai dengan si Ibu bertanya akan kemanakah saya terbang dan dimulailah percakapan yang sangat menarik ini.

Ibu Hita adalah awalnya berkebangsaan Tionghoa tetapi beliau sekarang adalah warganegara Jerman.  Dia bercerita bahwa dia sudah berjalan jalan keliling dunia di dalam 12 bulan terakhir, lalu dia berkata bahwa suaminya meninggal sekitar 18 bulan yang lalu dan karena dia sangat kehilangan suaminya ia memutuskan untuk berkeliling dunia.

Ibu Hita sudah menikah selama 35 tahun dan selama 35 tahun masa pernikahan tidak pernah ada pertengkaran yang berarti.  Mereka sangat mencintai satu sama lain.  Menurut ibu Hita salah satu aspek paling penting untung pernikahan yang bahagia adalah kemauan untuk mengalah dari dua behak pihak.  Ia bilang suaminya itu orangnya sangat baik dan sabar, ia selalu bilang terimakasih setelah ia memakan masakan sang istri.  Ia juga suami yang sangat gentlemen, misalnya selalu membukakan pintu mobil buat Ibu Hita.

Perginya sang suami sangat mendadak membuat ibu Hita sangat kehilangan.  Sang suami mendapat serangan jantung dan meninggal di pelukan ibu Hita.  Setelah meninggalnya sang suami ibu Hita menerima surat dari sang suami yang pada intinya menyatakan terimakasih atas cinta kasih ibu Hita selama hidupnya.  Sang suami juga telah menyiapkan semua surat surat hukum yang memudahkan pengurusan harta warisan.

Ibu Hita menyatakan ia merasa hidupnya kosong setelah ditinggalkan sang suami dan juga merasa ia tidak bisa tinggal di tempat tempat yang mereka pernah tinggali atau kunjungi karena kenangan mereka berdua terlalu kuat di tempat tempat itu.  Ia berkeliling dunia sambil mencari tempat yang cocok buat ia berlabuh dan akhirnya ia mengunjungi kota jambi dan merasa ia bisa tinggal di sana.  Ia memutuskan untuk tinggal di Jambi sambil melakukan kerja suka rela untuk membantu rakyat sekitar.  Ia berkata bahwa ia sudah tidak ada keinginan lain selain untuk membantu sesama dan seluruh peninggalan suaminya akan ia gunakan untuk itu.

Selama ibu Hita bercerita, mata saya kadang berkaca kaca, karena terasa sekali rasa cintanya yang sangat besar terhadap suaminya.  Saya katakan kepada beliau bahwa ibu Hita sangat beruntung untuk bisa mendapatkan perkawinan yang begitu bahagia dan merasakan cinta kasih dari suaminya selama 35 tahun, dan saya berharap bahwa saya bisa mendapatkan suami yang sebaik suami ibu Hita dan perkawinan yang seharmonis itu.

Ibu Hita sekali lagi bilang bahwa kesediaan untuk mengalah dari dua belah pihak itu sangat penting.  Dan bila ada masalah, perlu diliat kapan waktu yang tepat untuk membicarakannya.

Saya berdoa ibu Hita bisa memulai kehidupannya yang baru di Jambi dengan lancar dan saya juga berdoa supaya usahanya untuk membantu orang orang di Jambi tidak akan sia sia.