Day 0 to Day 8

So, Day 0 was the big day! I had two final sessions of TBI (radiotherapy), and then at 5pm I started to receive my new cells. The doctor said that they had managed to get quite a large amount of bone marrow from the donor, which was good news. Receiving the cells took only around an hour, and I did not react badly at all - even managing to tuck into a burger and chips whilst it was happening! It was basically like receiving a bag of blood, which I have had to do many times before, but this was much more exciting - I even got a lovely card from Anthony Nolan. I was so happy through the entire thing; I honestly can't repeat enough times how grateful I am to my donor for giving me this second chance of life and I really hope that one day we can meet and I can tell him person.

I would love to tell you all that once you receive your cells you are miraculously cured, but unfortunately it doesn't work like that. After people receive their cells their blood counts continue to drop, due to the effects of the TBI and chemotherapy, and it is only after a couple of weeks that the new stem cells start 'engrafting' i.e. they basically start to reboot your system so you can begin to get better. It is only by about Day 100 that I will really be allowed to return to a normal life, but I am hoping to be out of hospital just before Christmas. Until then though, I will have to remain in 'isolation', which basically means I can't leave the ward.

So, from Day 1 onwards the side effects of TBI really started to settle in. This basically affects every level of your mucus and digestive track, from your nose, to your mouth, down your trachea, and out the other end. The worst of all of this has been my mouth. To begin with my tongue was simply coated, but then my tongue and cheeks became very swollen, and in the past couple of days it has become incredibly painful to swallow and I have ulcers all over my mouth. I basically feel just like this lovely hamster, but definitely don't look anywhere near as cute.

I am being given various forms of pain relief to help with my mouth, some of which I swallow, and I also have a line that runs under the skin of my tummy to give me a constant supply of pain relief. From Day 5 onwards I have also been receiving a laser treatment in my mouth which helps promote healing. This is a relatively new idea that comes from South America, but it does seem to be working to some extent, so hopefully it will mean that my mouth will recover more quickly. So a lovely guy called Seamus, or as my Dad likes to call him 'Dental Vader', has been popping in to laser my mouth everyday.

Up until Day 5 I was managing to keep my movement up by doing laps around the ward. However, during that night I started to suffer with a high temperature, and it became increasingly clear that I have an infection. This is nothing really to worry about; it was pretty much inevitable that it would happen at some point, as I literally have no immune system at the moment. However, it's still pretty rubbish for me as it means lots of antibiotics and lots of feeling very tired. They are not 100% sure of the cause of the infection, so I have had a chest X-Ray and blood tests, and we will see if they get any results. The good news is that now they do seem to have my temperature under control and I am feeling slightly better. 

On Day 7 they also discovered a virus in my bowel, This meant that I had to receive a bunch of someone else's antibodies, like a blood transfusion, to try and get rid of the virus. I also received platelets for the first time (which are the blood cells involved in clotting the blood), which was interesting - I did not expect them to be yellow.

So, basically, it has been a very busy few days! I just want to say a huge thank you for all the support I have received so far; you are all amazing people. I still have a very long journey ahead of me, but the good news is that yesterday my consultant officially told me I had 'reached rock bottom' - so the only way is up right?!

Laura xo

Day -3 to Day -1

So on day -3 my radiotherapy began. The type of radiotherapy that I am going through is called TBI (Total Body Irradiation), this is different from other forms of radiotherapy as it is affecting my entire body, rather than targeting any one specific area. From day -3 to Day 0 I have been undergoing two lots of TBI a day, one at 9am and then again at 4pm. Each session does not last particularly long, but it is a rather weird experience.

When it was first explained to me the position I had to lie in, for some reason I was reminded of the scene in Titanic when Rose asks Jack to "draw her like one of his French girls". You are only allowed to wear knickers, and then your top half is covered in a thin layer of tissue paper to go some way to protect your modesty. So, just imagine Rose lying there - but now imagine Rose is in a glass box, with her elbow tied up behind her with a bandage having to lie there awkwardly for 5 minutes whilst being blasted with rays and then spun around to do the same to her back. So, really, it's not much like that scene at all - it's much more clinical and much less sexy - but I think that it makes me feel slightly better to imagine myself as Kate Winslet for a few minutes. Everyone likes to feel like Kate Winslet, right?

Despite the fact I may have felt a tiny bit like a Hollywood movie star for 5 minutes, TBI does seem to have the unfortunate side effects of making me feel nauseous and extremely tired. Day -3 was extremely difficult because of this, but with slight adjustments to my drugs, the nausea does seem to be subsiding.

I have also been having regular visits from the beauty therapists across at the Friends of the Beatson over the last couple of days and I got my nails done and had Reiki for the first time, which is a healing treatment. It was very relaxing and enjoyable, so I'm definitely going to make the most of the treatments during my time here! I've also had visits from the physio, dietitian and a lady from the Teenage Cancer Trust. The physio has been a great help as, even though I am feeling weak at the moment, I know that it's important to try and keep my energy up - so she has given me a number of exercises that I can complete on the bed as well as a set of exercise pedals. The dietitian seemed a little concerned about my nausea, but happy that I was still eating as best I could. As the effects of the TBI really start to settle in, it will become harder to eat because of reactions such as mouth ulcers. I have already started developing a bit of a coating on my tongue, but I'm trying my hardest to keep the oral hygiene at top level. Finally, the lady from the Teenage Cancer Trust was just checking in to provide us with any information that we needed - it really is a great charity; they have so many facilities for teenagers and different meal options as well if you don't like the usual menu. Although it is the Teenage Cancer Trust, they cater for 16 to 24 years so I am lucky there.

Anyway, enough about me - today is a much more important day for someone very special out there - my donor! Today is donor harvest day, so my lovely donor will be going through his operation today and I wish him all the luck in the world. I hope you will all keep him in your thoughts, as he is a truly amazing person. I know that I have a long way to go yet, but if it were not for him, I would not be going anywhere at all. I am so grateful - so good luck out there whoever you are! My thoughts are with you all the time.

Laura xo

Day -7 To Day -4

So, I arrived in Glasgow safely and I am officially in hospital to begin my transplant treatment! At last! I know that it will be a long uphill slog from here, but I am just glad that this part of my treatment has started - this is the beginning of the end; the beginning of getting better.

Firstly I will explain why I have used minus signs in my title. When you are undergoing a stem cell transplant, day 0 is officially the day of the transplant itself. Previous to this, every day is simply a countdown to 0 - during this time I have already undergone some chemotherapy, and the radiotherapy begins tomorrow. After day 0, the days go upwards in a normal pattern, and the hope is that by day 28 I will be released from hospital, and by day 100 I will almost be back to normal (fingers crossed; touch wood).

Day -7 was my admission day. We had a lovely lunch at a hotel before coming into hospital, I had a Chicken Tikka Masala  - and I can promise that my last taste of pre NHS food was amazing! When we arrived at the hospital everyone seemed to be expecting me (which was promising), and we soon had confirmation from the doctors that everything would be going ahead. We still didn't unpack till the next day though, as I think we were all still a bit paranoid that they would throw us out again. Throughout the day I had an ECG as well as a Chest X-Ray, blood tests and some swabs taken for MRSA. Apparently you should have swabs taken to check you for MRSA before any hospital admission, but this was a first for me. I also got started on a lot of new drugs etc, but have not had any bad reactions yet.The most important part of the day was running through my protocol, which is basically a mini plan of what will happen throughout my hospital stay and some important dates for afterwards. I originally had a few worries about some of the drugs they would be using, but everything was clarified, and I am just happy now that we can get on with it all. I also had the opportunity to have a look around the Teenage Cancer Trust unit of the hospital - an absolutely amazing place with gaming area, TV, pool table, jukebox, kitchen area, guitars and keyboard. They also run breakfast clubs, craft activities and pizza nights. Unfortunately I won't be able to spend much time here as I will be in isolation most of the time, but I'm hoping they might sneak me in a croissant every now and then!

Day -6 was the beginning of my pre-transplant conditioning (Yes, it was Friday 13th, but what can you do...) Luckily, despite the superstition, it went fairly well. The day began with a visit from the physio, so that she could check over my general health and muscle mass. We did a 6 minute test, which was basically me just walking around in circles for 6 minutes as fast as I could, which may not sound amazing, but trust me, when you are in hospital anything is fun. Then began the chemo! The chemo only ran for 30 minutes, but I had to remain on fluids for 24 hours afterwards. I've had this type of chemo before and it makes you feel like you are underwater - the horrible feeling you get when you jump into the deep end of a swimming pool and chlorine goes up your nose. Not pleasant, but a necessary evil I guess. I got a nice surprise though in a the form of a reflexology massage. There is a charity run from the hospital called the Friends of the Beatson and they have therapists that can pop in to see you - so a good foot rub definitely put me in a better mood.

The chemo continued into day -5. Again the chemo only lasted 30 minutes but I could not be unhooked from the fluids at all, so I could not get a shower. The fluids also meant I was pretty much up all night going to the loo - I found out this morning that overall I peed out about 9 litres of water in a day - which I think is fairly impressive for anyone to be honest. Unfortunately, the chemo hit me a bit harder on the second day and I got a fairly bad headache, but with a wee bit of dy-hydrocodiene I was back in action again.

So, today is day -4 and it is my rest day! Yay! I wasn't unhooked from my fluids until about midday, but the shower that followed this was absolutely amazing. I've had to start using special shower gel and moisturiser to prepare my skin for the radiotherapy, which is rather thick, but soaks into the skin nicely. I've had a lovely afternoon so far, as I popped in for a refreshing coke over at Friends of the Beatson and I am just about to play a game of pool with mum in the Teenage Cancer Trust unit - so, all in all, it could be worse.

The dreaded radiotherapy begins tomorrow though; wish me luck!

Laura xo

RIP Hickman Line

Monday was my last dose of antibiotic and I also saw my consultant whilst at the hospital. He made the decision that it was definitely best to remove and replace my Hickman line, simply to ensure that it did not cause any infection problems at any time during the transplant treatment. As we were hoping that I would be admitted to Glasgow on Thursday, it was important to have a quick turn around - so I was to get my old Hickman line removed that day and it would be replaced the next day.

Removing a Hickman line is not a surgical procedure, so it can be done by a doctor in the ward rather than down in the theatre. However, even though it is not surgical, it's not an easy thing to do. When a Hickman line is inserted, your body forms a band of tissue around it to hold it in place, so the doctor has to break through this layer of tissue. Unfortunately, due to the time constraints of the situation, they were not able to give me sedation. I will not go into much detail, but if you have been following my blog from the beginning, you will remember me telling you that giving a bone marrow graft without sedation is the most painful thing I have ever experienced - Well, I change my mind, this definitely overtakes it. Next time I need to get my Hickman line removed I will definitely have a full on stroppy teenager tantrum until they provide me with my sedation. All I can say is, thank the Lord once again for morphine - I definitely needed it afterwards!

On Tuesday morning I went to the hospital for 8am to wait to have the new Hickman line inserted down in the operating theatre. There was no room for me in my usual ward, so I was put in the surgical ward, in a shared room with 3 other women. This was a weird experience for me because I'm so used to having my own room - it was quite nice having other people to chat to, but it did feel a little strange that I could overhear everyone else's conversations! Anyway, they came to take me down to surgery at about 11am, but when I got down there they were having a medical emergency, so I was sent back up to the ward. At 5pm I finally got the Hickman line inserted, and thanks to a little sedation and some very good nurses, it was pretty easy. My doctor came in at the end to get another bone marrow sample from me, which was a little painful, but overall, it went pretty quickly. In comparison to the day before it was an absolute breeze! The only problem was that you have to fast for the operation, so I didn't eat or drink pretty much all day - I was definitely dying for a piece of toast afterwards.

So, today I have been feeling a little battered and bruised, but happy that all of this is sorted for Glasgow. Plus, we have received the fantastic news that we finally have donor clearance! So - I'll be off to Glasgow tomorrow and my treatment should start on Friday if all goes to plan. Keep your fingers crossed for me. Thank you so much for all your support and good wishes so far - I love you all.

Laura xo

Complications...

So, after the delay last week, today was supposed to be the big move up to Glasgow. However, I am still in Aberdeen! It's been a complicated week...

I got a phone call last Friday lunchtime from one of the doctors from Aberdeen explaining that on Thursday, whilst I was in Glasgow, they had taken cultures of my blood and they had found that a bacteria had grown. This meant that I needed to go to the day clinic that day so that Aberdeen could repeat the cultures. So, I headed straight to the day clinic to get everything sorted.

Late on Saturday evening I then received another phone call from a different doctor. He mentioned the culture again and seemed to suggest that what may be causing this bacteria was the lump at the top of my right thigh. He wanted me to go into hospital early the next day to get it checked out - which I was more than happy to do. Unfortunately when I arrived at the hospital the doctors had decided that it was important that they try to treat this bacteria meaning that I had to be admitted to be put on IV antibiotics twice a day. I knew that it was important to get rid of the bacteria, but being admitted to hospital is always a bit of a blow - spending 11 weeks there during the summer was quite enough for me! I'm pretty sure I know the hospital menu backwards by this point.

Anyway, back to hospital it was! I was put in a different ward this time, as Hematology was full, so at least I got a bit of change of scenery and got to meet some new nurses. The doctors didn't seem to be sure of the source of infection; it could either be the lump, a urine infection, or could be coming from my hickman line. After tests, we discovered it wasn't a urine infection, and the doctors didn't seem to think the lump could have been the cause - meaning that it seemed to be the hickman line. The best course of action seemed to be to just pump me full of antibiotics and hopefully kill the bacteria.

Despite these problems, on Thursday morning it still seemed that I would be going to Glasgow and finishing the course of antibiotics there. However, we found out late afternoon that Glasgow were still having problems organising the donor and my radiotherapy, meaning I would not be admitted until next Thursday - another blow.

On the plus side, they also decided to discharge me! After looking into the bacteria further they discovered that another antibiotic could be used to kill it, and this only had to be administered once a day. This meant that I could simply come into hospital each morning and receive treatment as an outpatient - amazing news, as I could finally return to the comfort of my own beautiful bed.

However, there were yet more twists and turns, as I went in to receive my antibiotic on Thursday morning and was told by my doctor that, as they seemed to think that my hickman line was the cause of the infection, they wanted to replace it. This means two minor operations - one to remove the old hickman line, and another to replace it about a day later. As it takes some time to organise these procedures it means that Glasgow is once again up in the air. Everyone is hoping that I can get there next Thursday, but it is definitely not 100% yet.

Anyway, despite all this, I am simply enjoying being out of hospital again. Sam and I have not been able to go to a bonfire event for the past two years as I have always had work commitments, and I was gutted that I was going to miss it for the third year running. So Glasgow being delayed definitely had a sparkling silver lining as Sam and I were able to watch the fireworks in a quiet place along the beach front. Happy days.

Laura xo

I have a donor!

After 5 months of waiting, hoping and praying; a donor has finally been found for me! A very kind 29 year old man from the UK has agreed to donate his bone marrow and given me the chance of life. To that man - I do not know who you are, but I am and will always be so grateful to you. This donation has given me hope of a future, and I will not be wasting it. Thank you so much.

After we found out this incredible news it was decided that my date of admission to the Beatson in Glasgow would be 29th October. I have been bursting to tell you all my good news for a while, but I didn't want to tempt fate. Even when a donor is found, things can still go wrong to delay the procedure; for example, if I fell ill it would not be able to go ahead, or the donor may have last minute, important commitments. So, there are many things to take into consideration, and it was very possible that things could be delayed... which unfortunately has been the case.

Firstly I had a little bit of a cold, so I needed to have a virus check to make sure that it was not anything more serious. This involved my consultant sticking swabs down my throat and up my nose - which was not very pleasant, but my watering eyes seemed to give the doctor a good laugh. Luckily when the results came back we found out that it was nothing more than the common cold, so there was nothing to worry about.

However, a few days later I developed a small lump at the top of my right thigh. The doctor said it was an inflamed hair follicle. I was given antibiotics for it, but everyone agreed that it should not stop the transplant. So, after a couple of scares it seemed that I was fit and healthy, ready for the transplant, and we got up early yesterday to head to Glasgow for admission.

We arrived at the Beatson at about 11am, and throughout the day the nurses kept popping in for blood samples etc, but it was not until about 4pm that we saw a doctor. It was then that we received some unanticipated news  - the transplant would have to be delayed. There was an issue with the donor. This is where it starts to get slightly complicated, so you will have to bare with me. Usually people donate their stem cells via the blood, which was the preferred option of my donor, but unfortunately something has gone wrong and he cannot donate his stem cells in this way. This means that the only way he can donate is through a small procedure extracting some of his bone marrow. It sounds horrible, I know, but this involves only a minor surgical procedure under general anesthetic. Unfortunately, due to the short notice of discovering this, no operating theatres were available for the procedure until next week. This meant the transplant would be delayed until then, and we had a nice three-hour long drive back home!

Unfortunately, even this new proposed date is subject to change: all my scheduled radiotherapy appointments will have to be rescheduled at short notice for next week, as well as ensuring all goes well at the donors end. Basically this will involve a huge feat of organisation.

I have to admit that I was a little gutted at the news. I know that the pre-transplant conditioning of chemotherapy and radiotherapy will not be a very nice experience, so I had got myself pretty psyched up for it and just wanted to get it over and done with. However, I'm not letting myself get too down as I know that I am very lucky really - I have a donor! So, at the end of the day, it doesn't really matter when the transplant happens, at least I know that it will happen; every day that passes is simply another day closer to being better.

Maintenance

Last Thursday I started my maintenance period, which is a relatively easy going period of treatment consisting of only a small amount of chemotherapy and lots of tablets to take at home. The idea is that this will keep me on an even keel until we learn more about when my bone marrow transplant will be. The amount of drugs that I will be taking will be adjusted each week to make sure that my blood results remain fairly stable - we obviously want to make sure that the leukemia does not come back, but we also don't want to affect my blood counts too much as this will put me at much higher risk of infection, and if I were to catch something then this would delay my transplant unnecessarily. So, really, its just a balancing act at the moment until we get more information.

Whilst we are waiting around I have been undergoing a number of tests to make sure that my body is in full working order for when the transplant does take place. On Monday I had a heart scan, which consisted of receiving a radioactive injection before they traced my heart in a scanner for 15 minutes. I had a heart scan back in June, and I can tell you that that did not go terribly well - it was the day after my first lumber puncture, and the injection ended up making me sick and I was left with an awful migraine for about 3 or 4 days. However, it went much more successfully this time! I had no reactions to the injection and it was all over very quickly, thank goodness.

On Tuesday I had a visit to the dentist. So far I have been lucky in my treatment and I have not had any problems with my mouth. I went through a period of everything tasting of metal, and everything still to this day tastes very salty, but other than that, I have been very lucky - many people suffer with ulcers to the point that they cannot eat anything at all as it is too painful. However, I could have all of this yet to come! So, it was important to see the dentist to make sure any major problems were fixed before my transplant. I was a little worried about the outcome as I have not been to see a dentist in roughly three years... (naughty, I know)... but other than a little staining the dentist was happy with my teeth. She did make me promise to register to a dentist after treatment is over though...

On Thursday I had to undergo a kidney test. I had another kidney test at the end of August to make sure that I was alright to go ahead with Phase 3 of my treatment, so it was much the same again this time. Simply a radioactive injection followed by taking blood tests throughout the day to measure how quickly the kidneys were getting rid of the radioactivity. This went very smoothly, the only boring part of the day was all the waiting around, but thanks to the Maggies Centre, there is always somewhere comfortable to go with tea and biscuits

Whilst all of this has been going on I've still been enjoying being at home. We had a few days of nice weather last week, so we definitely made the most of it by going on plenty of walks. My favourite of all of these was a trip to Balmedie Beach - the weather was gorgeous, and hardly anyone was there which made it all the more beautiful. Since the hurricane seems to have hit our shores this week I'm glad we made the most of our very short Indian Summer!