Sloth life

It’s been a busy week! Last Friday I went to a leaving party for Professor Russell, who has seen me through two bone marrow transplants. I feel very privileged to have been under his care.

He is a very clever man, and very humble too. During his leaving speech he spoke of the development of the Centre, rather than himself personally. Haematology in Nottingham has always been a pioneering treatment centre. So many people attended.

After the party I went for dinner with some friends I met at the clinic. I was initially quite anxious about this but they looked after me. I worried I might run out of oxygen, but my partner Matt went home to fetch the charger for my portable device. This was very kind of him even if he did have an ulterior motive (to get rid of me and go to the pub!)

I spend every Monday and Thursday at the daycase, having intravenous ambizome and this can be quite boring. I love to read though so I take my kindle. I’m enjoying ‘His Dark Materials’ at the moment by Philip Pullman.

I am a bit of a chatterbox too and I will speak to anyone. I’ve made some good friends at the clinic and daycase. Most people are lovely.

This week I sat next to someone who was very entitled and ungrateful. She was so rude to the nurses and she just didn’t listen. She made my eye twitch with rage! She wanted print outs of her blood tests from the last year and to see the doctor NOW. No, she didn’t have an appointment and no, she didn’t care that the doctor was with another patient. It worries me that some people don’t cherish the NHS, and it worries me that it will get sold off if it gets into the wrong hands.

Carillion took control of many of the hospital logistics just a few years ago and we all know what happened to them in the end. I think that they were running things from a business perspective only, forfeiting patient care in favour of improving numbers.

Speak soon!

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What is Aspergillosis?

Good question. It’s quite rare so no one really gets it when I try to explain. Leukaemia, no problem, everyone has heard of that.

Most people have an awareness of blood cancer. But Aspergillosis- nope. I’d never heard of it before either. Trying to explain that I have one disease because I had another gets even more long winded and confusing.

P.S Can I just clarify here that I don’t volunteer this information. I don’t like to play illness top trumps (a game no one really wants to win). When people ask me what is wrong with my lungs, which they inevitably do when they see me lurching around holding my oxygen ‘handbag’, if I say ‘aspergillosis’, they have no clue. Except for one taxi driver who asked me- he used to be a farmer in Italy and had kept chickens!

This is what the British Lung Foundation have to say about Aspergillus:

‘Aspergillus is a common type of fungus (mould).

It can be found in many places including heating or air conditioning systems and rotting material such as hay or compost.

Small particles (spores) of aspergillus which float in the air can be breathed into your lungs. This normally doesn’t cause any problems as the particles are destroyed by your body’s immune system.

But if they’re inhaled by someone with a weakened immune system *this was me after my transplant* or lung condition such as asthma or cystic fibrosis it can cause a range of problems. These include chest infections caused by growth of aspergillus or symptoms related to an allergic reaction to the aspergillus.

Because this condition is rare, it may take some time to get a diagnosis. Your doctor will need to consider other possible causes of your symptoms. You may need to have a few tests and you might need to see a specialist.

You can’t catch aspergillus from another person.’

After my second transplant I had six weeks worth of strong antifungal treatment and we believed that the aspergillus bug had gone.

I was signed off by the respiratory consultant with the notion that although I’d never run a marathon, my daily life would be unaffected by a reduction in my lung capacity.

For the next 5 years, this was true. I was keen to get back to work, back to reality.

A lot happened in those 5 years. I carried the Olympic torch, I skydived for charity and I bought a house on my own.

I met my partner just as the sale was going through and he helped me with my little project hobbit house. It was built in 1901, a tiny end terrace and we decorated it together. We backpacked around Vietnam and had many other wonderful holidays. We were planning to buy a house together (mine was too small for two people) when I fell ill.

It was 5 years since my transplant. We’d just celebrated the anniversary- my friends threw me a surprise party at a restaurant in town. Life was so good.

I bought my partner Matt a Zipwire experience in Wales for his birthday. It rained the whole time but it was awesome! I did struggle to walk up some of the hills though. It was concerning. By April 2017 I was in hospital with pneumonia. There were lots of bugs in my lungs having a little bug party. The aspergillosis had been growing like a tumour and created cavities in my lungs that were ideal conditions for bugs to live. I stayed on the Cystic Fibrosis Unit for 5 weeks and I’d just come home, exhausted, when I was made redundant (the company I worked for had gone into liquidation). That was not a good week!

From then on really I’ve been struggling to breathe. I had a lot of panic attacks but I did still manage to go out on my own. I even got another job, working part time doing some admin, but I was struggling getting up the steps to the entrance.

I remember going into town shopping once and lurching from street bench to bench until I made it back to the tram. It is terrifying when you can’t get your breath. I’ve never felt so vulnerable. People just looked at me funny and no one gave me a seat on the tram. Why would they? I didn’t look ill at all and I tried my best to hide it.

January 2019 this year I went back into hospital. I lost my voice which was scary as I was on a new ward- I didn’t know the nurses and I couldn’t communicate. I needed a lot of oxygen to breathe. I came very close to shuffling off my mortal coil, but my stubborn streak wouldn’t let me tip over the edge.

I made it out of there, but I still need the oxygen. Sadly this and my reduced mobility have meant that I am no longer so independent. My mum comes every morning and helps me get ready.

I’m living my life as a breathless sloth. There’s not much I can do. Hence the blog. I’m writing a book too, and learning Spanish. I have amazing friends who pop round and occasionally take me out. Matt is great and we always go somewhere at the weekend.

I go to hospital twice a week for intravenous antifungal drugs and I look forward to seeing the people there. The staff are brilliant and of course, I know everyone there. I like to have a chat with other patients too. They’re all on different stages of their journey and I watch them get better and stop coming, or deteriorate and stop coming. I still cry a lot when someone dies.

The medication isn’t making my lungs any better, only preventing the current situation from worsening. It’s damaged my nerve endings so I have pins and needles in my feet at the moment.

This was supposed to be funny and it’s really not is it? It should be from here on in. It’s too easy to just be honest when I’m writing.

Thank you for reading!

Sam

Back to the beginning. Part 2

Incredibly I was sent home from the doctors with a leaflet on deep breathing! My story isn’t uncommon- I have met so many people who have been dismissed by their GP only to have been diagnosed days later with critical illnesses. If you know that something is wrong, don’t let it go. Listen to people who know you.

I woke up the day after my doctors appointment , opened my eyes and wondered why it was so dark. I could see light around the edging of things but everything was for the most part, in darkness. This didn’t make me panic as much as you might think, as I’d already decided that I might have gone insane. I could hear a constant thumping as my heart tried its best to pump what little blood I had around my body and I had no energy at all.

I managed to call my boss and my Mum. My Mum got straight in a taxi and dragged me to A&E. by my cardigan. I didn’t want to go anywhere but I didn’t have the strength to argue. I remember I had to drag myself along the floor to answer the door. We were seen by the eye specialist quite quickly and while no one could confirm what was wrong, I was placed on a ward overnight and given some blood.

I felt like a new woman after the blood transfusions. I could happily have run home from the hospital! I’d never been in a hospital before, I’d never even had a broken bone. Aside from being born in one, I’d only ever been in there to visit my Grandad. He’d had a nasty fall when I was 18 and never came out. He was 92 and it was sad to see him so weak at the end, He’d enjoyed a long and happy life.

I had slept on the canular and dislodged it overnight, getting sticky blood all over my hair and in my mouth. I must have looked like something out of a horror film. I could hear people gasping as the nurses took my by my elbows towards the showers, where they helped me wash and dress. An ambulance came for me and I was on my way!

Nobody told me why but I was being transferred to Haematology at the hospital closest to my house. I had no idea what haematology even meant! Once I was there I had a room to myself and an en-suite! To hear that I had leukaemia was a massive shock, but also a relief. It was something that could be treated, The pounding in my head had finally stopped and I could think.

It gets a bit emotional here so I’ll skip over it for now but I had my first bone marrow transplant in January 2011. When this failed in December 2011 I went back for more chemotherapy and conditioning, and had another transplant in February 2012. At this point, with my compromised immune system, I contracted Aspergillosis.

Back to the beginning. Part 1

I was diagnosed with AML (Acute Myleoid Leukaemia) in 2010 at the age of 25. This was a complete and utter shock to me. I didn’t even know anyone who’d ever had cancer. I’d never been ill before. I’d never even broken a bone.

The weeks before my diagnosis were tough. I had signed up to run the half marathon but my energy had just evaporated. I went away during August bank holiday to stay with a friend who lived in Cornwall and I’m ashamed to say that I spent most of the time in bed, exhausted.

On the occasion that I managed to get out, we went for a walk in Tintagel. I’d been there as a child and loved it there growing up. I walked happily down the steep path towards the beach, but then I couldn’t physically get back up. My chest was tightening and I couldn’t breathe. I remember feeling embarrassed, I don’t like to make a fuss. Something wasn’t right.

On the long drive home to Nottingham, my head gasket blew. I was stuck on the motorway waiting for the AA and I could barely stand with exhaustion.

It was a downhill spiral from there really. With no car, I was getting the bus to work. I was walking to the bus stop two streets away. Along the way I would have to stop several times to catch my breath. I could gladly have just lay down on the concrete and gone back to sleep.

I am very stubborn so I just tried to carry on as I was before. I didn’t have the energy or the inclination to think of an alternative plan.

Arriving home from work I’d be too exhausted to get myself anything to eat, I’d just crawl into bed. Then one morning, I went to the toilet and the bowl filled with bright red blood. That scared me. There were massive bruises all over my legs too, yet I had no recollection of hurting myself. I made an appointment with the GP.

I managed to get a friend to drop me off at the surgery as I could barely stand at this point. I could hear a constant pounding in my head and I was finally ready to accept help…

TBC

Hello

Hello and welcome to my blog! My name is Sam, I’m a 34 year old with a complicated medical history, a very supportive family and a cat shaped shadow called Crumpet. I’m writing this blog in the hope that it connects me with others going through a similar situation, and, failing that, that someone out there might take some comfort from reading and relating to my story.

I don’t usually introduce myself by talking about my medical history, I have spent the last ten years refusing to have been defined by it and trying to live as normal a life as possible. The past year has made that sort of impossible with the addition of an oxygen tube on my face and a wheelchair to sit in. If I do manage to get out of my chair and walk a few steps, I arrive at my destination like I’ve just stopped by on my way back from running a marathon.

Puffing and panting at someone doesn’t leave the first impression I like to give, so I often warn people in advance. Those that don’t know me well are also inclined to panic and ask me lots of questions which of course I can’t answer until I catch my breath. Before the oxygen, at an airport the staff almost called paramedics because I couldn’t breathe. Luckily, it looks much worse than it is and all I really need is a chair to sit on and a glass of water (fast tracking through passport control helped too).

There aren’t many perks to having aspergillosis so I’ll take them where I can!

I didn’t realise I’d have quite so much to say, you can tell I don’t get out much. I will save telling you how I got aspergillosis (also found in turkeys and chickens!) next time- there’s something for you to look forward to!

Hasta luego, amigo