Isolation, swine flu masks and lies

Recovering from a procedure as big as my bone marrow transplant wasn’t easy. After being an inpatient at the Teenage Cancer Trust unit in London for 20 weeks, in September 2010 I was finally discharged! It had been two months since my transplant and I was feeling better than ever however I was still vulnerable and everything I did was a potential health risk. My lack of immunity meant that public transport was out of bounds and often I would have to wear a mask, similar to the ones used in the swine flu outbreak a few months prior, on any outings. Being bald was bad enough but wearing the mask really did make me stick out like a sore thumb and that was one of the reasons I continued to feel isolated despite being discharged from hospital.

It was only 18 months earlier that my family and I were told I was suffering with leukaemia and I asked my sister “am I going to die?” – a moment that stuck in my head throughout my treatment. I’m quite similar to my mum, who suffers with Multiple Sclerosis, in the sense that unless I really need to I won’t show anyone that I’m suffering and even when I was being wheeled around hospitals, so pale that I was nearly transparent and feeling like a dog, I would always respond with “I’m fine” whenever anyone asked how I was, but inside I was scared. I was scared to be leaving hospital. I didn’t know what was round the corner for me and if I’d cope being almost in isolation in my own home – a normal teenage life was right in front of me but I just couldn’t quite get to it. Going back to school wasn’t in the foreseeable future and I was scared that my friends could forget about me.

I was right to be nervous. Less than 24 hours later I was packing my bags and back in London after a spike in my body temperature. The doctors told me I’d be back for two nights maximum which eventually turned into a further six weeks but I was relieved. I knew I was safe there and the people around me understood what I was going through. I didn’t have to worry about anything for those six weeks because I knew I was in the best place for me. Of course I was eventually getting fed up of being in hospital but part of me almost didn’t want to go home.

During those six weeks I faced all sorts of problems. I fought infections, spent countless sleepless nights screaming in pain and praying that I’d get better soon. I was fed up of being ‘different’ and although I was nearly two years into my journey it still hadn’t sunk in that I’d been diagnosed with this horrible illness.

When I was discharged from London for the second time I had to return to the hospital twice a week – on a Monday and Thursday – to meet with my consultant. Because I was unable to use public transport I had to endure long taxi journeys to London, often in rush hour, and a quick ten minute appointment could frequently create a ten hour day – majorly spent in the back of a car. It wasn’t for many months that my appointments were cut to weekly and then monthly but it felt great that eventually I had more time to start living my life.

In my next blog post I’ll discuss Christmas, my first holiday since being diagnosed and an amazing charity called Teens Unite.

The Bone Marrow Transplant

Thank you again for such an amazing response to the first two posts in my Sunday blog series where I’m writing about my fight with aplastic anaemia from the very beginning. It’s been so lovely reading all of the messages I’ve received each week, especially those from people that I don’t even know.

After my condition being re-diagnosed as aplastic anaemia I started treatment quite quickly. My family and I spent a lot of time with my consultant discussing possible treatments, side effects, precautions and risks. Hearing so many complex words and drug names was frightening, especially at such a young age. I was only 11 and I was petrified however I kept going because I trusted what the doctors were saying and I knew that if I kept my chin up it would all be so much easier to cope with. There are loads of pictures of me during my treatment always with a smile on my face!

I was receiving chemotherapy when I took this picture, believe it or not!

As you can see, I tried to never let my treatment get on top of me. I knew that the pain and sickness was, however silly it sounded to me at the time, going to be worth it so I kept going. For a few weeks I filmed a video diary, which I’ll post on this blog later on in the week, and looking back at the videos I can’t believe how happy I was!

Behind the smiley face, however, was a very scared teenage boy. I couldn’t believe that this was happening to me and although I genuinely was happy to be in the best hands, some days I would just break down in tears because I felt like I couldn’t do it anymore.

From day one there had always been talk of a bone marrow transplant however my consultant wanted to try other treatments first that promised a quicker recovery. The first treatment I received was called ATG, or anti-thymocyte globulin, which is very difficult to explain but all I can say is that it’s produced by rabbits and horses! The doctors were amazed because they anticipated very bad side effects that would have me out of action for weeks but it got to day five of the week long intensive treatment and I was still acting perfectly normal! But that all changed in the last few days which bought fainting, vomiting, the works! Grim.

I was discharged a week or two before my 12th birthday and had to be kept isolated at home. It sounds horrible to be kept in isolation in your own home but I was so glad to be able to sleep in a comfortable bed and eat nice food! Fortunately I was able to go out with my family to celebrate my birthday!

Months passed and we went to an appointment with my consultant to receive the results of my ATG and unfortunately I’d been put forward to receive a bone marrow transplant. The consultant explained to me about tissue matching and how sometimes it can be very hard to find perfect matches but I found two or three! Unfortunately the first two weren’t able to donate and I was starting to lose hope when one day my dad got a phone call from the hospital saying they’d found a completely perfect match who was willing to donate and that I’d be starting treatment within a month.

In July 2010 I was transferred to University College Hospital, London and quickly started on an intensive cycle of chemotherapy to completely wipe my immune system. The first few days were fine, I felt generally ill but it was nothing compared to the first time round. I had one rough day out of ten which was great because I was well enough to walk around and look after myself. My life changed forever on the 15th July 2010 when after months of waiting, I finally received the bone marrow transplant that saved my life! I can remember the day so well – it was around lunchtime and when the bone marrow arrived I was eating a takeaway pizza (classy!)

It was quite surreal. As I sat there munching away at a pepperoni pizza, an anonymous donors bone marrow was being delivered to me through my hickman line (plastic tube that connects straight to the central artery) just like a blood transfusion. I was awake throughout and the procedure was finished within half an hour.

That evening, I received a small blood transfusion and I’ve never had one since – a far cry from having up to nine per week not so long before!

Day after transplant – feeling better already!

I was kept in hospital for a long time afterwards and was finally discharged and back in Essex in September – only to return 24 hours later – but that’s another blog post!

The Aplastic Anaemia Discovery

My family and I were just coming to terms with the fact that I’d recently been diagnosed with cancer when, on the 5th April 2010, eight days after my diagnosis, a consultant took myself and my dad into a consulting room.

“We’ve made a mistake” he said, “we’ve studied your test results and they show that your leukaemia diagnosis was incorrect”. I didn’t know whether to smile or cry and I think that after living with the knowledge that his son had cancer for over a week that my dad was on the brink of punching the doctor after the way that he announced that they’d merely made a mistake.

He continued, “although your condition isn’t cancerous, it’s still serious, if not worse”. My face dropped and I looked to my dad for reassurance. “We believe that you’re suffering with a condition called aplastic anaemia which affects one in 500,000 children”. Because the condition is so rare they couldn’t answer my simple questions like “Why?” simply because there hadn’t been enough research.

Aplastic anaemia is a blood disorder that is widely unknown by many although it is as common as some forms as leukaemia, hence my original diagnosis, and can often be just as devastating. It prevents the bone marrow from reproducing blood cells and although in some cases the bone marrow can quickly recover itself, the severity of my diagnosis meant that I was to be kept alive by weekly blood transfusions.

Shortly after my new diagnosis I was discharged from Addenbrooke’s Hospital in Cambridge and looked after at my local hospital where sometimes I could stay for days or even weeks and at other times could go for a few weeks without having to stay overnight. I still had to go for regular appointments with my consultant in Cambridge, though, who informed me that the only ‘cure’ for aplastic anaemia would be to have a bone marrow transplant however there was an alternative treatment that they would try first and that I’d be coming back for a long stay in complete isolation shortly.

Thank you so much for such a great response to my last blog post. I’m writing a different part of my story every Sunday – last week was part one where I was diagnosed with leukaemia. Check back next week for another part of my story!

Being Diagnosed With Leukaemia

27th March 2009 – It was a normal Friday, I was about to go to school but for the last few weeks there had been many occurrences of me feeling unwell and after countless trips to the doctors, who couldn’t find “anything wrong”, I felt like I wasn’t being taken seriously. The day before, my nose bled continuously for an hour and on this day I woke up with blurred vision – I simply had lost all clarity in my sight and couldn’t focus at all. Regardless, I went to school where the nose bleeds started again almost immediately. By the time I had to go to my second lesson of the day, I’d lost so much blood and my teacher (who now tells me that I looked like I was about to drop down dead on her classroom floor) told me that I should go straight home.

My dad got the afternoon off of work and took me home and booked me an emergency appointment at the doctors. With my visual symptoms we thought that maybe I just needed to get glasses – we would never have imagined what was to come.

The GP took one look at me and called the children’s ward at my local hospital to tell them to expect me and sent us on our way. I was petrified, I’d never been in hospital myself and when they told me I had to have a blood test, I screamed with fear. A doctor took my dad to one side and told him that he thought something was very wrong with me but he wouldn’t know what until the results of my test came back a few hours later. Dad phoned all of our immediate family and within an hour I was surrounded by my relatives.

At around 10pm the doctor returned with the results doubled with a nervous, concerned face and told me that my three main blood cell types (red, white and platelets) were virtually non-existent, that I’d have to stay in overnight to have a blood transfusion and that I’d be transferred by ambulance to a hospital an hour away which, unbeknownst to me, is well renowned for it’s cancer research. Being a naive 11 year old I just thought that maybe the local hospital were understaffed or didn’t have enough beds.

Still smiling – just about!

Dad returned to the hospital the next morning armed with clothes, toiletries, everything we would need for our hospital stay and we set off in an ambulance to Addenbrookes Hospital in Cambridge. As soon as we got there we were surrounded by consultants from every department, some of whom rushed in on their days off, very concerned, after hearing my prognosis. That day is a bit of a blur, I can’t remember it too well because I think the likeliness is that I pretended that it wasn’t happening. The next day, all of my family returned to the hospital. With me were my parents, grandparents, aunts, uncles and siblings who were all taken into a room to speak to a consultant who then came to speak to me. He told me I had leukaemia – cancer of the blood. That moment shattered me as a person – everyone went outside and left me and my sister to have a moment. I tried to stay calm but the moment I made eye contact with her I burst into tears and said five words I never thought I’d have to say – “am I going to die?”.

My sister went with me to have a CT scan of my brain where we discovered that my vision was blurred because I had bleeding behind my eyes due to the lack of platelets in my blood. That afternoon I had an operation to have a hickman line, a plastic tube which goes straight to the central artery, fitted so I could receive treatment directly into my blood stream without the need for needles.

These two days, the start of my long journey, definitely won’t be forgotten quickly!

Every Sunday I’m going to update this blog with another part of my story. Watch this space for the next part – where I discover the doctors had made a mistake.

Where do I start?

I have no idea what to write today. Like I said in my short post yesterday, I came out of hospital. I was in for 8 days – not too bad. This time around I made some great friends and we had a good laugh. They say laughter is the best medicine 😀

I was back in because my CMV virus came back. They didn’t use the same treatment as before because it made me more ill.

I don’t know if I’ve mentioned this before, but my ward is a Teenage Cancer Trust ward. My friend, Pip, who I lost contact with for a few years, is raising money for them by giving up chocolate and sweets until Christmas Eve. She has a target of £200 but she is hoping to raise as much as she can! Why don’t you sponsor her? Every penny counts, plus it’s a good cause!

You’re ignorant

I have just got back from my usual Monday appointment in London. The car came to pick us up just after 8am and we got there at 10, which is quite good.

I had to go for a blood test before I went to see the doctor and the results of that were good. My platelets are just over 180 and last week they were 170, so I am going up about 10 a week, which is brilliant considering I only had 1 when I was diagnosed 18 months ago! hehe

On our way to the other building where the appointment was, we went to hand in my prescription. The lady said the waiting time was 45 minutes so we said we would come and collect the medicines after we’d been to the other building. We came back after about that time and we knew my prescription was ready because we were number 777 in the queue and the screen said 785 or something. When we went to the desk there was a lady standing before us and she was very rude to the staff. Basically, it had just gone over 45 minutes and she was saying, “Oh – you said it would be ready in 45 minutes and I’ve been waiting here for ages! How much longer will it be?!” and just generally being rude to the woman serving her. The whole waiting area could hear her! I don’t suppose she thought for one minute about everyone else that was waiting. I mean, there must of been at least 20 people there!

To cut a long story short, they gave me the wrong tablets (the massive ones that no one could ever swallow) so we had to wait another 45 minutes! :no:

I had to go for my Pentamidine Nebulizer while we wated. What it basically is, is a drug that you have to inhale that makes sure you dont get and bugs or viruses in your lungs. You have to be in a room by yourself (or sometimes another person is having the drug in there) as the nurses aren’t allowed to be near the drug as it can harm women or something like that. I don’t know, ask a doctor. It’s in 2 parts, you have this other drug to open your lungs which takes about 5 minutes and then the Pentamidine which takes half an hour. It tastes a bit funny but it’s not so bad, plus I only have to have it once a month.

I booked my transport for next week while I was waiting to go home and it is actually the most annoying thing getting the man on the end of the phone to sort it out. I said, “Hello, can I book some transport for Monday please?” so he asked me for my hospital number and then he asked me what day I wanted to go to the hospital. Didn’t you hear me the first time?! Near the end of the conversation he asked who he was speaking to so I obviously said, “Elliot Deady” and he was like, “Yes I know that but who I am speaking to?!” so I said again. After about 3 attempts he realised it was me on the end of the phone and not my dad or someone phoning for me.

Oh, and I bought some new Vans on eBay. They were £20 and for the Teenage Cancer Trust. (Y)

Hello, again.

So shortly after I opened my blog it decided it wanted to disappear off the internet with no warning. I got a new name and set up my blog on here, but I didn’t really like the old name anyway.

I got home fine on Wednesday but it turned out I had to go back into hospital on Friday. They said we would only be there 2 days but we ended up there for over a week! :( Never mind.

While I was in hospital I had to have my hickman line (tube which you can take blood and give drugs through) taken out as it had an infection. It’s really weird because I’m so used to having it! I’m going back up for my clinic appointment tomorrow where I will have a new line called a PICC fitted. I’ll be awake but it shouldn’t be too bad.

The car is coming to pick us up at around 8 tomorrow morning x_x That means an early night and early start!

I also decided that I wanted to keep all my old blog posts from when I was first ill, so I have imported them. Go have a look! :aa:

It’s been 53 days!

I’ve been in hospital for 53 days now and I am finally going home! I have to wait until 6 to leave, apparently, as they booked later transport so there is plenty of time to get my medication ready!

I’ve still got quite a bit to do. I’ve got to pack my suitcase, get all my DVDs and things ready, do a bit of tidying up and get changed! I’m really hungry too! Maybe I can convince my dad to take me out for lunch 😛

Everyone has been asking me what the first thing I do when I get home will be and the honest answer is I don’t know. I’ll probably just sit on the sofa and watch telly.

At last, I can go home and start to lead a normal life again!

Hello world!

Welcome to WordPress. This is your first post. Edit or delete it, then start blogging!

So here we are. After neglecting all previous blogs I’ve owned I’ve decided to open a new one! I have told myself I must update this at least twice a week. I’ll like to see how long that will last 😛

I’ve been in hospital for 7 (or is it 8?) weeks now and I’m really getting bored. But thats all about to change! The thing that was keeping me in was a virus called CMV. It’s nothing to worry about, you’ve probably had it! In fact around 70% of the UK population have had it. It’s just like a cough or cold and you dont even notice. But anyway, I got it because when they were choosing a bone marrow donor they wanted a donor who had already had the virus (because I had) as they had the cells to fight it but because my immune system wasn’t strong enough it couldn’t fight it when the levels were coming up. I had to have treatment for it for almost 3 weeks and we thought it wasn’t working but it turns out my level today came back as negative! That means I can go home tomorrow. Yippee!

I’m really pleased! I just want my bed and my TV. Plus, while I’ve been in here my room has been decorated so I’m looking forward to that! 😀