High dose chemotherapy-Week 1!

On Monday the 7th of March 2011 I returned to Leeds General Infirmary to receive the results of the recent chest CT scan. They showed that the grey area had been infection and that the antibiotics had got rid of it. This meant I would be starting my high dose chemotherapy the next day.

I had to sign a form stating that everything about high dose chemotherapy had been explained to me and that I knew the dangers. I knew that I would receive very very strong chemotherapy for a week, followed by having my stem cells which I had harvested in November, returned. This would enable my immune system to come back so that I would be able to fend off infections. It would however take a number of weeks for my immune system to return. I would also be a risk at many various complications. I would most likely be fed through my port, on a substance called TPN (Total Parental Nutrition) which would keep me alive and hydrated while I was unable to eat or drink at all. I would also be on a morphine pump, which would give me a constant supply of morphine because of the amount of pain I would be in (For anyone looking to buy one of these for personal use, they're hard to come by. Trust me, I've looked!) I would be in for at least four weeks, in isolation. For the three months after my high dose chemotherapy I wouldn't be able to go anywhere near big crowds. I would also be at risk of having my lungs fill with fluid, my kidneys stopping, my liver stopping, going into a coma, catching a life threatening infection, just plain old death and a whole other bunch of fun fun things!

It was somewhat unusual having to sign a form with all these things listed on it but I realised this was the only way to kick this thing's arse! Cancer picked on the wrong guy when it started with me and I was going to show it a thing or two!

The drugs I would be on for the first week of chemotherapy would be busulfan and melphalan. I had to take the busulfan in tablet form, which meant I was taking about 140 tablets a day! On the last day of the first week I was given the melphalan through my port. I was also be on hydration for the whole of the week, to stop me getting dehydrated. This meant I was attached to the drip stand 24 hours a day for a few weeks.

I was put in Room 8 on Ward 78 as it was the isolation room, as about a week or so after the chemotherapy had been given my bloods would drop, meaning I would have no defence against infection and would be confined to my room.

The first week of my high dose chemotherapy passed almost without incident, and I to get out into the dayroom as much as possible in this week because I knew within the next week or so my bloods would fall and I wouldn't be able to. This was just the start and I knew it was going to get a whole lot worse. Worse than I could ever imagine.

For an indication as to how much morphine I was on, look at how huge my pupils are!

Winter!

Christmas tree on Ward 78!

December 2010

I was now starting to become more and more ill as the effects of the chemotherapy built up. At this point most of my eyebrows and eyelashes had gone too and I was requiring blood transfusions every two weeks roughly. I was always tired at this point. 

For my fourth chemotherapy I had to travel to Leeds through horrendous weather. You know it's cold when ice starts to form on the inside of the car window! I helped set up the ward Christmas tree (see picture!) and the rest of the ward decorations! Because of the way my chemotherapy was timed I ended up having to travel home at 3am in the freezing weather. I badly needed the loo on the way home (having been on constant hydration for the previous four days) so we had to stop the car and pull over somewhere. It was 3:30am and -15 degrees celsius. Probably the coldest I've ever been!

Following my fourth chemotherapy at the beginning of December, I celebrated my 17th birthday on the 9th of December. I had a law trip with Sixth Form to go and watch some court cases in Hull, but afterwards myself and a few friends (Lauren, Ruth and Yas) all went for Pizza Hut, which was good although I was somewhat limited in my choice of food because I wasn't allowed to eat fresh salad or fish. 


I was booked in to have another load of scans before Christmas so that I knew just what was happening with my cancer. It was around this time that I was told that sadly my doctor, Professor Ian Lewis, would be leaving after 25 years at Leeds General Infirmary. My new consultant was to be another member of the Teenage Oncology team, Doctor Bob Phillips.

Dr Bob Phillips

Another one of the people who I owe my continued existence to.

I had my bloods checked on the morning of Christmas Eve and they came back in the evening. It looked like I would be spending a good few hours of Christmas Eve in hospital having a blood transfusion! They gave me a smaller amount of blood on Christmas Eve so I was able to go home for Christmas Day. It was times like this that I truly hated being ill more than anything. 

I spent my Christmas Day at home, having a full Christmas dinner and falling asleep at the dinner table because of how tired I was! I then slept for the whole afternoon and the evening! I was so unbelievably tired and I felt so ill. I went back to Hull Royal for another blood transfusion on Boxing Day and was stuck there for 6 hours. Because I was at risk of getting infections I was confined to a single room at the very top of the hospital, and as there isn't a Teenage Cancer Trust Ward there it was a very small room with no proper TV and the nurses weren't properly trained to deal with cancer patients. I did however, manage to get a photo during them six hours and I have to say the view (along with the various antics of the people of Hull!) kept me somewhat occupied!

It almost looks nice! 

December 2010.

I have to say it was a Christmas I would never forget. I was surrounded by my family but I worried that this would be the last Christmas I would have. Not just a slight worry, but an all consuming fear that this was it. That this was the last Christmas I would ever have. I think I appreciated just how lucky I was to be around for Christmas in 2011. 

Stem cells!

It's only when you're bald that you fully appreciate exactly how much your hair helps keep you warm in the winter. Towards the end of November 2010 I really started to feel the cold a lot more because I was starting to feel more and more ill.

WARNING-Sciency bit!

I regularly had to go to hospital for blood transfusions to keep my red blood cell count high. The red blood cells are the ones which carry oxygen around the body. As chemotherapy attacks all fast replicating cells in the body (hair, finger nails etc) it also stops your bone marrow producing blood cells. This includes red blood cells, platelets and white bloods cells (neutrophils being a type of white blood cell). This is why people on chemotherapy are tired and more prone to infection. As the body stops producing the white blood cells the immune system is weakened, meaning that infections can't be destroyed. The reduction in red blood cells means that less oxygen is carried in the blood and this leads to tiredness, and in extreme circumstances death. The platelets are what causes the blood to clot. The body also stops producing these, meaning that people on chemotherapy will bruise more easily and bleed a lot heavily if cut. Because of this, anyone on chemotherapy has to have their blood levels checked regularly, and if a certain level is not met then the patient must undergo a blood transfusion. This isn't possible for a lack of white blood cells however, because they cannot be transfused.

The things you learn as a cancer patient ey!

The blood transfusions were given just like chemotherapy was, but it only took a number of hours rather than days, and I was able to go to the children's ward at Hull Royal Infirmary for them, although as this wasn't a TCT ward and it was full of babies with infections I had to be put into an isolation room that was more designed for babies than a 16 year old such as myself.

The week following my third chemotherapy I started with my GCSF injections. These stimulated my bone marrow so that it produced more stem cells so they could be harvested. These would be put back into me following high dose chemotherapy so that my immune system would come back faster and so the high dose chemotherapy didn't just kill me outright. I would have this high dose chemotherapy following my six cycles of VIDE chemotherapy but they needed to harvest the stem cells a few months in advance.
I did my own injections, everyday for a week.

These hurt quite a bit.

November 2010.

Following the week of injections I went to Leeds to have my stem cells harvested. I had a tube put into my neck, called a vascath. It went into my jugular vein and stuck out my neck a good few inches. It had to be inserted under a general anaesthetic at Leeds General Infirmary. This meant I could have my stem cells harvested through this rather than having to have a needle in each arm, as my blood would be taken out and passed through a machine, which removed the stem cells, before being put back into me.

Example of what a vascath looks like, it was about as comfortable as it looks and a bloody pain to sleep with! 

November 2010

I was hooked up to a machine that harvested my stem cells over about five hours and I managed to produce a huge amount, even the nurses were impressed! I returned to Leeds General Infirmary and they just pulled my vascath out of my neck! I didn't expect it at all! No anaesthetic and I didn't feel any pain, just a very very strange feeling of a tube moving from inside my jugular vein, something I never want to feel again if I'm honest! 

The machine which harvested my stem cells. Lots of my blood in them tubes!

November 2010

Chemotherapy was also starting to make me go a little crazy too......

Or crazier, at least!

November 2010.

First Scans...

I had always thought something unusual would happen to me. That maybe one day an event in my life would happen, almost like something straight out of a film. I was more hoping for winning the lottery or becoming famous than getting a life threatening disease though if I'm honest!

Sarah came to visit me in the October half term which helped me a lot, although it upset her to see me so ill and unable to eat. But she struggled through and helped me as best she could. I doubt I could ever repay her for it if I'm honest. Thank you Sarah!

Sarah and I.

October 2010

I was also told at this point that because of where my tumours were it was unlikely that surgery would be an option and that I would most likely be having radiotherapy. I was also told that if I had the radiotherapy to my head, my hair would never grow back. I suppose I'd have to get used to being bald.

I had another round of tests on my kidneys and heart to check that they were still in working order, which they were. I was told that following my third session of chemotherapy I would have to have my stem cells harvested so that they could be used in a stem cell transplant (more on this later). I would have an injection everyday for a week and then I would go to Leeds to have my stem cells harvested. I'll cover more on this tomorrow though!

Never ever.

At the end of October I had scans and at the beginning of November I got the results. These would show whether the chemotherapy was working or not. If not there wouldn't be much they could do for me, only extend my life for a while. Predictably I was nervous as hell. Sometimes I would get myself so worked up worrying and then within an hour I would be convinced I would be fine. This went on for weeks and weeks and if I'm honest still occasionally worries me. It's a very unusual place to be in, as not many other people have experienced it, meaning it's hard to explain to many people. I was so uncertain and scared of what would happen. I think for the first time in my life I realised that you don't live forever. You're alive for a certain number of days and there's nothing you can do to change that, you've just got to make the most of the time you have.

I was in hospital when I received the scan results. The MRI of my pelvis showed new tumours had appeared on the left side of my pelvis. Fortunately my main tumour on the right side had shrunk slightly. This meant that the chemotherapy had had an effect on my tumours! The new tumours on the left hand side of my pelvis came as a shock though. My cancer was even more widespread than I had thought, and I was worried that it might carry on spreading even while the chemotherapy was attempting to work. Luckily the chemotherapy had shrunk my main tumour though, if only slightly. There was hope! 

I was scared of dying still, and I still am scared in case my tumours start growing again at the moment. I realised that scans aren't black and white, there's always a grey area. An area that could be a tumour or may just be a blood vessel or infection. I'd also realised that nothing ever turns out the way you planned. I thought that I would be okay on chemotherapy but I was so tired all the time and after over a month of being tired and ill it was starting to take its toll on me. My eyelashes and eyebrows were starting to fall out too and although my skin was better, it was still badly scarred. If it wasn't for my friends and family I wouldn't have been able to get this far. But the chemotherapy had begun its job. There was a reason to carry on fighting.

So it begins...

Some doxorubicin, mine was the same red as this

which I have to say was probably the only nice thing about this drug!

Monday the 27th of September 2010 was the day I was meant to start chemotherapy. I would go to theatre and have my portacath fitted, before starting chemotherapy in the evening. For the portacath to be inserted I would have to be put under general anaesthetic so I was booked to go down to theatre in the afternoon.

Ward 78 at Leeds General Infirmary (LGI) is the Teenage Oncology ward for patients diagnosed between 13-16. It was paid for by the Teenage Cancer Trust (TCT) and is unlike any other hospital ward I can imagine. It was to become my second home over the next few months and sometimes I'd be spending more time there than I would be at home. I would have to travel to Leeds for every hospital appointment and for every chemotherapy or radiotherapy session. Hooray! I thought at the realisation that not only would I be getting poison pumped into my veins I'd have to travel about 1 and a half hours to get there for it!

If anyone is ever in doubt about how lucky they are to be healthy, going onto Ward 78 would get rid of it. There are only eight beds on the ward but it's usually very busy. Some people will be too ill to get out of bed, some will be kept in single bedrooms, fully isolated. But you also see some amazing things. You see people who know full well that they aren't going to get better, people who are so sick and feel awful they can't even eat properly. And they all get out of their beds and carry on with life as much as possible. I personally don't think I was that ill, and find it amazing the strength these people had, along with their families.

Along with the usual nurses (who are quite frankly amazing and the people who saved my life) a youth coordinator works on the ward. As boring as her official title sounds Cat, the youth coordinator on Ward 78, was fantastic! She made sure we all had stuff to do and tries her hardest to get everyone into the dayroom. Basically a room with a table, kitchen, a tv and a PS3, Xbox and Wii designed to get everyone up and out of bed and get everyone to talk to each other.

 Kitchen area 

 Seating 

More seating and the giant television! 

Photos of the dayroom on Ward 78.

The people I met on ward 78 were quite frankly some of the most amazing people I've had the good fortune to meet in my life, and I must say that meeting them all was definitely a benefit of having cancer if ever there was one! We all supported each other and I honestly think it helps us all get to grips with what's happening to us at the time and by having someone else who's in the same boat to talk to it makes you feel like you aren't alone.

The chemotherapy I was going to be on for six three week cycles was called VIDE. This stood for the names of the drugs which I would be given. Vincristine, Ifosfamide, Doxorubicin and Etoposide. They would be administered over four days and three nights each time. 

I had my portacath put in on the afternoon and woke up back on the hospital ward a few hours later. Portacaths are designed so end of the portacath reaches into the first chamber of the heart, allowing the chemotherapy to spread into the blood quicker and not to build up in one area. This was to stop any damage being done as it was so toxic if it stayed in one area too long it would damage the surrounding tissue. A while after I woke my chest began to feel unusual and a nurse checked my pulse. My resting pulse rate was 210 beats per minute. The usual rate for me is around 50 beats per minute. They had no idea why it was doing this but they couldn't start chemotherapy until it stopped. After being sent for a chest x-ray to ensure that my heart hadn't been damaged when they inserted the portacath, my heart rate returned to normal and finally, at 2:00am on the 28th of September 2010 I started chemotherapy. 

For the next two days I didn't get out of bed at all. I didn't want to and, at the time, I didn't want anything to do with anyone on the ward. They were related to the cancer and I didn't want to have that stupid disease. I only wanted to be at home. I missed my home, my friends and everything else. I hated the ward at the time. I hated that stupid disease called cancer. Why me? I sat in bed and asked myself that for two days. I stayed in my theatre gown all the time I just watched tv. It wasn't until the fourth day that I got out of bed. I'd realised that staying in bed didn't make things any easier, it only did one thing and that was to make me feel even worse about where I was at the time. 

Having finally got up, washed and dressed I felt so much better. This was my last day in hospital and I spent it like I'd spent the last few days in hospital, watching daytime television! Is there any better way to spend a day?! 

I went home after my chemotherapy had finished and I'd had my needles that they used to access my port removed. I'd had my first chemotherapy and knew that in the next two weeks I'd lose all my hair and start to feel the side effects. But I'd got the first one out of the way. I'd done it and I'd be damned if I was going to let this stupid disease beat me without a fight.

I asked myself at the time though, was this the end of the beginning or the beginning of the end? 

Decisions, decisions...

Professor Ian Lewis, my Consultant

One of the men who saved my life.

Leeds is a large city in West Yorkshire, in the north of England. I'd never really been before but in the past year and a half it has become my second home. Through all of my time travelling one particular song seemed to be on the radio all the time and I now think of the time just after me being diagnosed whenever I hear it. I'll stick it on here so you can all have a listen.

                                     

I first travelled to Leeds General Infirmary on the 17th of September to meet my consultant for the first time. His name was Professor Ian Lewis and I have to say I think he resembles a teddy bear. He is one of the men who saved my life and I love him to bits and I doubt I could ever repay him. I also met my Macmillan nurse, Carol Irving. She would prove to be amazing in the following year or so, and her expertise and care was invaluable. Think of her like a guardian angel, looking after me, my family and friends.

My parents and I sat and spoke to Ian Lewis for roughly three hours. I don't think I've ever seen either of my parents cry so much and it was more upsetting to see them upset than it was for me to be ill. Ian (yep, first name for a Doctor! On Teenage Cancer wards we always call them by their first names) told me that I would be on a three week chemotherapy cycle, with each time in hospital having chemotherapy lasting four days and three nights. I would be hooked up to a drip for four straight days each time I was in. I would also have to have something called a Portacath inserted into the my main vein leading into my heart. This port itself would be on my ribs just underneath the skin. This is where the needles would be hooked into me. This was because the chemotherapy I was on was so toxic if it was inserted into my veins it would destroy them. The image below shows where it would be put and how it works.

Diagram showing portacath

(More on my portacath later though)

Ian also told me that the chemotherapy would make me infertile, meaning I would be unable to have children naturally. I could however store sperm (more on this fun and embarrassing part of my experience later) and had an appointment booked for me to go and store some, so that I could have children via IVF later on in life. Luckily, as an IVF baby myself, I merely saw it as continuing a family tradition! 

I mentioned the statistics I had found online to Ian and he calmly told me that statistics are often misleading and can cause unnecessary worry. He used a fantastic example to illustrate how misleading they can be. He told asked me if I thought a 60% survival rate sounded good, to which I replied that I thought it did. He then put it another way. Imagine a group of five of your closest friends. Two of them would die according to a survival rate of 60%. He also explained that no two cancers are ever the same. Your cancer is a mutation of your own cells and no one else's, so statistics can often show a false picture. 

He then asked me if I wanted to go through with chemotherapy. He said it was an extremely strong chemotherapy regime (name for a collection of different chemotherapy drugs) and that it had killed people before. He explained I would be very very ill, I would get infections which would leave me in hospital for weeks at a time, I would be so tired I would need a wheelchair sometimes, I would need blood transfusions, I would be spending a long time in hospital, I would lose all my hair, I wouldn't be able to eat for weeks at a time, I would feel like living death and even after all this there was no guarantee it would work at all. It was the equivalent of having industrial strength bleach pumped into my body every three weeks. It would damage my heart and other organs because of the strength of the drugs. I was told it may shorten my lifespan and give me health problems later in life too.

 He asked me if I wanted treatment or not. I knew the only other option to chemotherapy was letting myself die. Letting the cancer win. I didn't really feel like dying at 16. I told him I wanted to start chemotherapy as soon as possible. I was starting to realise how hard it was going to be. But I was starting to realise that I could fight my cancer at least, and would for as long as possible. Even one extra day would be worth fighting for.