Day 16

When I first got diagnosed the last thing I thought I would be moaning about is how much my bum hurts, but today that is all I want to talk about - just how much my bum hurts. Side effects to chemo come in lots of shapes and sizes, but one of them can be nerve pain, and it just so happens that my nerve pain is in the right hand side of my bum. This then spreads down my legs and into my feet like pins and needles, not something that is particularly pleasant. However, with a little bit of nerve specific painkiller, the doctors are hopeful that this will go away and I can get my nice feeling bum back. So, keep your fingers crossed for me!

One good thing is that despite the pain, nothing seems to be stopping my ravenous want for food. As well as having 3 large meals yesterday, I still managed to have sandwiches, snacks and supplements to fill up my calorie count. I fear that I may put on about 2 stone whilst I'm in hospital, so please don't laugh at me when you next see me, as I may look like a bald, plump man.

On to dealing with the baldness... My hair has yet to fall out, but this usually happens between 3 and 4 weeks into chemo, so could happen relatively soon now. So, I have been looking into wigs, and here is a few from the selection. My final choice has to be made by Monday, so what do people think? As my Dad says - get your votes in now!

Laura xo

Day 12

Today was all about my Hickman line. This is a procedure where I get a small tube that runs from a vein near my heart to make it easier for me to receive chemo. Basically with a Hickman line it means that they will stop jabbing my arms everyday to take blood and pump things into me, which is always a good thing.

However, as this was a small operation it meant that I couldn't eat leading up to it. Normally I wouldn't mind not eating, but I'm on steroids at the moment, so I constantly feel like I want to eat a small horse. This meant that not eating for 18 hours was quite a challenge! Seriously - why give me steroids and then tell me I can't eat? Torture.

Finally at 4pm I got taken down to the X Ray department and my Hickman line was fitted successfully. I now feel a little bit like someone has stuck a pole from my neck through my chest, but hopefully, with time, I will get used to it, and I know that it will make treatment so much easier.

You will also be happy to know that since my operation I have gone on to devour a large portion of gammon and potatoes, two sandwiches, and some other snacks - so don't worry about me, I'm not wasting away quite yet. Any food donations are appreciated.

In other fantastic news, Dr Al told us all yesterday that I have had a rapid early response to the treatment. This means that everything seems to be working at the moment, and that is just perfect! My blood count is improving with every day.

Day 9

To begin with I just want to scream THANK YOU to you all from the rooftops. Since making my diagnosis public on Saturday I have been absolutely inundated with love and support from everyone, and it has just made me so happy. I know that this journey will be a long and hard one, but knowing that you are all there with me makes things that little bit easier. Honestly, you are all truly amazing people.

And not only have you been supporting me, but you have also been helping me campaign for more bone marrow donors in general. Already I know many more people who have signed up themselves, countless more that have shared my message, and there are even people out there offering to hold events to raise awareness. Your help makes all the difference to, not only me, but thousands of other people in the same position, and my heart is bursting with love for you all. I just ask you, if I can, to keep going - the more people that sign up as donors the better, and you are already making such a difference. So, thank you!

In terms of my own treatment, I had another lumber puncture yesterday, so I'm trying to be a little cautious today so I don't get any more migraines. So far so good though. My next session of chemotherapy is this afternoon, so I will be producing more pink pee this evening which I'm sure the nurses will enjoy.

Last night we also received confirmation of my new treatment plan. At the moment it will remain pretty much the same. I'm going to be in hospital for about another month, then will get a couple of months at home to be treated as an outpatient. As of September/October time, fingers crossed, we will have a donor arranged and I will be transferred to Glasgow for intense radio and chemotherapy followed by my transplant. After this will be more time as an outpatient, but the hope is that I might be home for Christmas. The thought of being home for Christmas genuinely makes me so happy, so that's what I will be praying for.

Anyway, I've left the most exciting news of yesterday till last ... The haircut! When I told Heather, my new hairdresser, that I wanted a pixie cut she looked at me like I had gone mad. She even left me for over an hour to think it through. Apparently most people prefer to take the 'slow but steady' approach to hair loss and simply get a couple of inches off each week until it starts to go naturally. But it seems that I am not most people. In my mind, my hair is gonna fall out anyway, and I've never been brave enough to get short hair before, so I might as well be brave enough now.

So, here was the last brush...

And the small creature that we found on the floor afterwards...

And the final result! Hope you like it.

Day 6

Apologies for the delay in the most recent post. There will be times that I cannot write as I don't always feel up to it, but I promise to keep people as up to date as I am able. The last couple of days have been a whirlwind of headaches, tiredness and nausea - but I'll skip out that boring stuff and move on to the more adventurous parts.

On Thursday morning I was taken down to the nuclear part of the hospital to receive a heart scan, which meant I was given a radioactive injection, followed by a lie down in a scanner for about 10 minutes. Receiving the injection wasn't as easy as I would have liked as it made me feel a bit faint and I had to lie down for a while. To make me feel better I was simply prescribed a bottle of Lucozade, which did actually help - So, you were right Peter Hood, Lucozade does make everything alright.

After the heart scan I was radioactive for the rest of the day, so any pregnant nurses had to avoid me, but this wasn't too much of an issue. The more annoying thing was that having the heart scan meant that I missed lunch! And not just any lunch either - stovies and oatcakes! Believe me, there is not much to look forward to when you are in hospital, but stovies and oatcakes has to be one of the better things, and I missed them! Tomato soup (again you were right Peter) and bread to serve as a replacement, but I don't think I will ever quite recover from missing my stovies...

Results from my heart scan were all fine, but I do have a little news in terms of my Leukemia treatment. My bone marrow samples are currently being analysed in Glasgow so that we can determine genetic markers on the Leukemia cells. It seems that my genetic markers are a little unusual as they have found what is called a "Philadelphia chromosome" (Like the city, or as I like to think, like the cream cheese). Basically, the Philadelphia chromosome is like two chromosomes have broken and formed into something new. This isn't a bad thing, it just simply means that my treatment will now change fairly dramatically.

Above is a photograph of my original treatment plan (supported by some beautiful handmade cards by Julia and Ibby). It's not very clear on the photograph, but originally my treatment was to be part of a clinical trial made up of chemotherapy and steroids over a period of months. The clinical trail now basically has to be thrown out of the window as I will be on tablets specifically designed to target the Philadelphia chromosome, and I will be undergoing a bone marrow transplant.

Originally we were hopeful that a bone marrow transplant would not be necessary as part of the treatment, but this is now definitely going to happen. For me that means that I will be transferred to Glasgow for a period of time in the future where I will undergo intense chemotherapy and effectively "replace" my immune system with someone else's. However, at this point its obviously not just about me any more. There is a worldwide search for bone marrow donors at the moment to help people like me every day. Being a donor is actually really easy and involves minimal effort, so if you fit the criteria, I would love if you could sign yourselves up and share this message on to someone else today. Being a donor can save the life of someone like me, and even though you might not match my gene type, you might match someone else's. If you were able to sign up as a donor, or pass the message on to someone who can, I will always be in your debt.

For a little bit more information just check out the Anthony Nolan website, or if you are a little older (over 30), look at the British Bone Marrow Registry. I want to thank everyone so much for reading this, sending messages, cards, gifts etc. Everyone has been so supportive and given so much already, but if you could do this for me it would be the icing on top of the cake. Thank you so much again and I love you all.

Laura xo

Day 2

Today was officially the start of chemotherapy as I started taking the chemotherapy drugs. I received two lots through my drip, both of which had to be watched by the nurse. With this type of drug there is always a chance of tissue damage so a nurse has to be present to check that no lumps and bumps are forming around the vein. It was a relatively easy procedure though, only taking around 30 minutes, and luckily there was no tissue damage!

The first drug is called Vincristine. The most well known side effect is a feeling of pins and needles in your extremities. This is something that I have not felt so far, but could kick in after 2 or 3 treatments, so I will have to keep my eye out for it.

The second drug was Daunorubicin, the drug that will eventually be responsible for my hair falling out. This is not something that will happen immediately, but that can be expected 3-4 weeks into the treatment. I will be meeting the hairdresser next Monday so I can get my hair cut short and to arrange wig referrals - so I will tell you all about that when the time comes.

Daunorubicin is a bright red colour, and one of the funny things about it is that it will also turn your pee a bright pink colour. Anne, my nurse, was telling me that the nurses often make the med students collect the bed pans of the patients who have just had Daunorubicin and they always, without fail, completely freak out. I'm sure that's something that keeps the nurses all entertained. Poor med students.

The rest of the day was simply spent attached to my good friend Larry here. And yes, I have called my drip feed Larry. Does this mean I have gone mad? Possibly. Anyway, whether I have gone mad or not, I also received some incredibly good news today - Dr Gordon told me that there are no signs of Leukemic cells in my spinal fluid. This is incredibly good news as ALL often spreads to the brain and nervous system, but as nothing is there at the moment, hopefully this will now remain completely preventable through the lumber punctures.

So, it's all good news so far.

Day 1

So, my treatment started today. This will be split into 5 stages: induction, consolidation, interim maintenance, delayed intensification and maintenance.

Today was the first day of my induction period. This should last 5 weeks and by the end of it, we all hope and pray that I reach remission and that the cancerous cells will have significantly reduced in number.

The layout of my treatment will be a complicated one - probably the most complicated leukemia treatment that the hospital are providing at the moment. As ALL is most common in children, an occurrence in my age group is a little unusual, so the treatment methods have to take this into account. Throughout the induction period I will be taking steroids on a daily basis as well as having chemotherapy drugs, specialist enzymes, and lumber punctures at various times.

Remember last time that I wrote that giving a bone marrow sample was one of the most painful experiences ever? Well I was wrong - giving a bone marrow sample followed by having a lumber puncture immediately afterwards is one of the most painful experiences ever. I insisted on being sedated this time as I struggled so much with the last bone marrow sample. So, actually giving the sample this time didn't really bother me at all. Being sedated is a little weird, you can feel something strange happening at the time, but you seem to forget about it two minutes later.

However, it took the doctor 5 attempts to successfully complete the lumber puncture, as she couldn't find any fluid around my spine. Finally, she succeeded, but by that time most of the sedation had worn off and I was in a bit of pain. Despite the pain though, at the moment I actually feel really happy. I was so nervous about starting treatment today and, even though it may have been painful, I got through it.

At the end of the treatment my back was covered in iodine, so I look like someone really inexperienced has attempted to give me a fake tan. But I'm still smiling.

Everything Changes

It is often the case that tragic things happen all around you, but you never think that they will happen to you. However, sometimes you are wrong. Sometimes you are the person right in the middle of things. That's what it felt like when the doctor told me at 6.30pm on Thursday evening that I had Acute Lymphoblastic Leukemia (ALL). It is a cliche to say that a certain moment changes your life forever, but I know for certain that this moment did exactly that.

On Monday morning I had happily got up to begin my Summer internship and it was only when a cough started to bother me that I considered going to see the GP. So on Wednesday at 3pm I went for an emergency GP appointment expecting them to tell me that I had a small chest infection, give me a prescription for some antibiotics and send me on my way. But the GP seemed a little concerned - she was struggling to hear my breathing properly and thought my heart rate was too high. She was insistent that I should be referred to a hospital. At the time I thought that she was simply over reacting. I had told work I would be back by 3.30pm and couldn't be bothered with the extra hassle of a hospital check up. But now I know that I will be forever grateful to that GP, as she may well have saved my life.

At about 6pm that night I was told that I had pneumonia and would have to be kept on fluids for the nights to bring my heart rate down. I would be out of the hospital by morning, so I thought I would be back at work the next day. As a precaution the hospital took some of my blood for a routine check. At 10pm I received a visit from Dr. Cunningham telling me that I had to change wards - pneumonia wasn't the only issue, there was something wrong with my blood. The doctor explained to me that I had a 'low blood count', which means that you are low on every count of the blood, i.e. you do not have enough red blood cell, platelets or white blood cells. I was told that this could just be a side effect of the pneumonia or there could be a more serious underlying health issue, but I knew there was something wrong. I could tell it in his eyes, he was worried. I cried.

The next morning I had to give a bone marrow sample. The blood is made in the bone marrow, so this would clarify whether the problem in the blood was to do with the infection, or if there was a problem with the source of the blood. The bone marrow sample hurt like hell and at the time I hoped that I would never have to give another sample again. It only took about 5 hours for them to turn over the results, and that is when Dr. Al sat next to me at 6.30pm and broke the news. It was less than 24 hours between me arriving in hospital thinking I had a small chest infection to finding out. You can say what you want about the NHS, but that's speedy if you ask me.

I have to say that I was devastated, and the thought of the long battle that I will now have to go through terrifies me. No university next year, no normal life, just recovery. But I know that I will fight and I will recover.

Tomorrow I have to give another bone marrow sample (I will have to give many others!) and then I begin my treatment. I will try and keep everyone updated as much as I can throughout the course of this. All the love and support that you can give me will be much appreciated, and I know that together we will beat this.

Laura xo