Day 9 to Day 32

Sorry for the delay in posting, but it's probably an understatement to say that the past few weeks have been a bit of a nightmare. I finished my last blog post by saying that it seemed that I had reached rock bottom - well I was wrong. It got worse.

In my last blog I mentioned that they thought I had an infection, and this seemed to be getting worse. However, on the night of Day 8, my temperature spiked again. Through Day 9 the temperature seemed to be controlled, but I was feeling very weak, and couldn't eat very much or take any tablets. My temperature spiked again at 5am on Day 10, and my blood pressure and oxygen intake also dropped. My consultant, Dr. Clark, came to see me at 8am and made the decision that I should be moved to the High Acuity Unit downstairs. They put me on oxygen and after an hour it was decided that I should be moved to the new Queen Elizabeth Hospital to their Intensive Care Unit. So, I was taken there in an ambulance, and was put in a very large room with lots of monitors. As well as all this, I seemed to be developing a red, itchy rash all over my body - which was very uncomfortable.

During the day I seemed to stabalise a bit, but there was very clearly still an infection present. Dr. Clark made the decision that I should have my hickman line removed and a new temporary line put in, just in case the infection was in the line. These procedures took place about 10.30pm that night. It became increasingly clear that the hickman line was the source of the infection, as when it was removed, I had a bit of a septic reaction with shivering and a high temperature. Once the line was out though, everything seemed to begin to settle.

On Day 11 my rash seemed to get even worse, but the itchiness reduced when I was given Piriton. I was also still feeling incredibly queasy. I received my last lot of chemotherapy (ever hopefully). Day 12 improved as my mouth was not as sore and I was able to start eating some soft things. I was also told I could go back to the Beatson! However, the ambulance did not come earlier enough to return me that day, so I did not move back until 9.30am on Day 13. When I finally did return I received a warm welcome from everyone, which was lovely.

Here is a photograph of Natalie, who was the nurse that looked after me in ICU - you can tell I wasn't feeling my best. As my mouth was so sore, it wasn't really possible for me to smile:

From Day 14 onwards I slowly started to improve, eating a bit more and managing to walk around the ward a little. They also slowly reduced the pain relief and eventually took it off completely as my mouth healed. The problems that still remained, and still remain to this day, are a feeling of nausea, especially in the morning, and a strong sense of fatigue. However, both of these things are to be expected post transplant and could last for a number of months - but I'll get there.

By Day 19 my blood counts were beginning to improve. (This bit is a bit difficult to explain as it is all scientific, but I'll give it a shot) - Basically, when I received my TBI they were aiming to make my blood counts fall to 0, i.e. my red blood cells, white blood cells, and platelets. This meant that when I received my donor cells, then my body was less likely to react to the new cells. As my new donor cells began to make themselves at home and duplicate, my blood counts slowly improved. In order for me to go home my neutrophils (the white blood cells that fight infection) had to reach 1 - on day 19 they were 0.3, so had slowly started to creep upwards.

As my line had been removed and replaced with a temporary one, on Day 20 I had to have the temporary line removed and replaced with a PIC line. This is basically a line that runs into your arm. The procedure was a little uncomfortable and I felt quite weak afterwards, but after a few days the new line felt quite comfortable.

On Day 24 my blood counts still weren't moving up very quickly, so the doctors decided to give me an injection of growth factor. This acts as a stimulant to try and push my body into producing more blood cells. This seemed to work very effectively as on Day 25 my blood counts jumped up from 0.3 to an incredible 3.5! This meant that I was basically free - and I was discharged on Day 26!

Whilst I was in the Beatson, the nurse looking after me was called Pauline, who was the most amazing person, and I'm very grateful for her care and the care of all the other nurses:

I was obviously very happy to be home, especially so near the festive period, but the joy was not to last long. On Day 28 I started to develop a temperature so we rang up Glasgow who referred us to Aberdeen - and I was straight back in hospital, only this time it was closer to home. It seems clear that I have another infection, but the doctors are not quite sure what the source is, so I have to stay here until they have done a number of tests. It's looking increasingly more unlikely that I will be home for Christmas, but I will keep hoping - if I am not, I will just have to make my own Christmas a week or so late when I am home!

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!

Thank you Cockburnspath!

Since my diagnosis I have received an unbelievable amount of love and support from everyone, and last weekend I was amazed again by the kindness of the people of Cockburnspath, where I grew up, as they held a fundraiser for me.

Through a raffle and profits from the bar the amazing people of Cockburnspath managed to raise approximately £1100 - and that's not even including the funds from the donation boxes. Absolutely brilliant. That's so much money, and I know that Anthony Nolan will be able to use it to help so many people.

Cockburnspath is such a small village, but I know everyone pulled together and a fantastic night was had by all, with a magnificent figure being raised. I am so grateful to everyone that helped organise the event, to everyone that attended and to anyone who donated in some way. You are all truly wonderful people, and I promise that when I am better I will be back in Cockburnspath to thank all of you.

The rugby tickets for Scotland vs. Samoa also sold for a good amount of money, which I am incredibly happy about. To the person that bought them - make sure you enjoy it for me! I will be sitting watching it on the TV, pining to be there, but it makes me feel so much happier that someone will be making the most of the experience. I will just live in hope that Dad is willing to take me to see Scotland play in the next Rugby World Cup... In Japan....Maybe...

Whilst this brilliant event in  Cockburnspath Village Hall was taking place, I was unfortunately sitting in hospital receiving chemotherapy. However, this treatment went very well and I was released promptly on Monday and have been home ever since. I was also given a room with a view in the hospital, so I got to watch the Air Ambulance helicopters flying in.

Now that I've finished Phase 3 we are all playing the waiting game. Waiting for a donor, and waiting for the transplant. But I am more confident than ever that I will find a donor, especially as everyone has been so amazing at raising funds and awareness for Anthony Nolan.

So again, I simply say thank you to everyone.

Laura xo

Phase 3

On 3rd September I went back into hospital to begin Phase 3, but it took until the afternoon of the next day until I actually received any chemotherapy. The doctors seemed very unsure to begin with. My liver was still playing up a bit, but by Friday morning it finally decided to play ball and fix itself. Then it was agreed that I could receive the chemo at 75% strength.

Whenever you receive chemotherapy it always seems a bit bizarre. You see a big red bag arrive which has "TOXIC" written on the side of it. Sometimes you just have to smile. This was especially the case here as they arrived with a huge bag filled with luminous yellow liquid ready to be attached to me. They also had to give me fluids simultaneously, which meant that I was left running to the loo every ten minutes, dragging a very heavy Larry (the pump stand) with me.

Once I had finished receiving the methotrexate (chemo), I had to receive an acid antidote and fluids, until the methotrexate had been flushed out of my system - and then I could go home! Unfortunately I couldn't be disconnected from Larry at any point, which made showering an interesting experience and made it quite difficult to sleep, as fluid bags were constantly being changed. However, my kidneys luckily did their job and I was happily discharged on the Monday.

On Tuesday evening I was well enough to attend 'Look Good Feel Good' at the Maggie's Centre. I have mentioned this in my blog before as I've been wanting to attend for ages. The evening, basically, is an opportunity for women facing cancer to get professional make up advice. We went through the full process of a make up routine, and we got a free goody bag at the end with all the products that we used. It really was a great experience and I felt very pleased with the results. Since my diagnosis I've not really felt any point in getting dressed up, but this made me feel great - it made me realise that my cancer doesn't have to stop me feeling beautiful once in a while.

Since then I've been out and about a little, visiting Stonehaven beach for some fish and chips and enjoying the sun in the park whilst having a picnic. So, I'm really happy to be home at the moment. I will be back in hospital on Thursday to receive the second and last dose of my chemotherapy in Phase 3. I'm not much looking forward to the constant dashing to the loo, but hopefully my kidneys will do their job once again and I will be out of hospital as quick as a flash.

End of Phase 2

To my great relief I finally came to the end of Phase 2 of my treatment and was discharged from hospital last Monday! The first few days at home weren't very exciting as I was still recovering from the last lot of chemo and I was feeling very tired and nauseous. However, over the last few days I have really been able to properly relax and enjoy being at home, as the whole of the last week has been completely chemotherapy free. A couple of days ago I even managed to venture to the park for the first time in months to have a bit of fun in the sun (as seen in the various pictures). You will also be happy to know that since my last blog I have been enjoying the food at home and my craving for chicken nuggets has been fulfilled.

On Thursday I will be heading back into hospital for the beginning of Phase 3, but hopefully I shouldn't be there for very long. Unfortunately, this chemotherapy cannot be given as an outpatient because of its high dosage and possible effects on the kidneys, but I should only be in the hospital for 3-4 days, and then I can return home (as long as everything runs smoothly). The good news is that I will only receive two doses of this chemotherapy throughout the course of the month, so hopefully I will be spending most of the next few weeks at home.


Over the 3-4 days I will be spending in hospital I will firstly receive fluids, then a dose of methotrexate (the chemotherapy drug), followed by an antidote to the methotrexate and more fluids to control any side effects. This round of chemotherapy is very important as it ensures that no leukemia cells affect my central nervous system.

As the methotrexate can affect my kidney function, I had to undergo a kidney test yesterday. This involved being injected with a radioactive substance and then getting blood samples taken throughout the course of the day. When one of the blood samples was being taken, the nurse didn't seem to be paying much attention to what she was doing and spilled some of my blood on my jacket (luckily it was a black jacket!) The nurse then basically freaked out because she thought my jacket was radioactive and had to clean it furiously before checking its level of radioactivity - luckily I was allowed to leave, as long as I promised to wash the jacket as soon as I got home.

I always get a little nervous when I move into a new phase of treatment as I have to face new drugs and a whole new set of challenges. However, I'm feeling positive at the moment, and I'm hopeful that this month will run smoothly and I'll be able to spend much more time at home. So, everyone just needs to keep their fingers crossed for me that my kidneys are up for the challenge!

Day 20 of Phase 2

Apologies for the long delay since my last blog. I know that some people have become concerned about me, but I promise I'm still here - can't get rid of me that easily! Since I last wrote I feel like I have been bouncing from one problem to the next, but I have also had a couple of opportunities to escape the hospital too, which has helped to keep my sanity intact.

After finding out about my intestinal inflammation I was started on a course of antibiotics. Unfortunately antibiotics have never been my best friend, as even though they seem to be fixing me, they make me feel awful. This meant that I ended up spending the best part of a week pretty much in hibernation (you have to feel sorry for my parents and Sam who came to see me for a chat and ended up just watching me sleep for hours - the height of entertainment obviously). During this period the doctors decided to take me off my chemotherapy so that my white blood cells could recover and hopefully beat the infection.

Last Monday I was starting to feel a little better, so the doctors were willing to allow me a bit more freedom. This was good news as I had an appointment the next day in Glasgow to meet the consultant in charge of my bone marrow transplant. I hadn't actually been outside Aberdeen since May, so this was probably one of the most exciting road trips of my life.

My appointment was at the new hospital in Glasgow which has some great facilities, but was a bit of a minefield to navigate around for someone who does not know Glasgow at all. All the staff were lovely and they seem to be really accommodating - this was a huge relief. However, there was a lot of information to digest, and not all of it was very nice. The week leading up to my transplant will be pretty horrible as I will be undergoing both chemotherapy and radiotherapy multiple times a day. The transplant itself will actually be relatively easy, but as my new immune system kicks into play this is where the problems could begin. There will be a period of a number of weeks where I will almost certainly develop some infections, some people even end up in intensive care! (but I'm really hoping that won't happen to me). We also discussed the long term effects that this treatment will have on my life, which really brought home how right I was about this diagnosis - it will change my entire life. I know I will get through all of this, but in some ways the effects of the leukemia will always be with me, and there is no escaping that.

Anyway, along with the bad news came some good news - the nurse said that in order to bulk up for the procedure I was allowed to eat as much rubbish as I liked! This meant that after weeks of persuasion, my mum finally agreed to let me have the thing that I had been craving the most... a McDonalds! So, on the way home my dreams were finally realised in the form of a McChicken Legend. (That same day we even got a Chinese take-away for dinner - it was probably the most unhealthy but pleasurable day of my life).

After a fantastic day out, chemotherapy started again on Thursday. This seemed fine for a little while, but at the weekend the problems started to set in again. The doctors informed me that my liver tests are a little odd, and this has been accompanied by a pain in my right side and a horrible feeling of constant nausea. This does indicate that my liver is not very happy at the moment. And sadly it means that my heavenly life of eating McDonalds has been cut short and I am back eating hospital food for the foreseeable future. If anyone is brave enough to try and smuggle in a box of chicken nuggets, it would be much appreciated.

Laura xo

Day 11 of Phase 2 - Back in hospital!

Well, 11 days after being discharged, and I'm back in hospital! It's quite a long story as to why, so please bare with me, and make yourself comfortable.

It's been a difficult start to this second stage of treatment to say the least, so you will have to forgive me for the delay in the blog. On Monday 20th July I officially started treatment as an outpatient and it was my first visit to the day centre. I have to say, the day centre is much better than I thought it would be - everyone was very relaxed and friendly. However, I was there for much longer on Monday than I would have liked. The treatment was supposed to last 4 hours, so we were told to arrive for 9am. But despite the fact that I arrived at 9am, my chemo didn't make an appearance till after midday, so I ended up being stuck in hospital till 5.30pm - they even had to chuck me out of the day centre and move me to a different floor so that the nurses could go home. The chemo they gave me has some weird side-effects too. Do you know when you jump into a swimming pool you sometimes get this horrible feeling that chlorine has gone up your nose? I felt like that for a good hour whilst having treatment. Weirdest side-effect ever.

Tuesday meant that it was time for the dreaded lumber puncture. I began the day down in the day centre having more chemotherapy - luckily this one only lasts 10 minutes. I then had to head up to the ward. People can usually have their lumber punctures done down in the day centre, but I absolutely insist on being given sedation, meaning that they have to do it in the ward. I really don't understand how anyone can have it done without sedation to be honest, they are better people than I will ever be. Once again my lumber puncture was problematic as they could not find the right part of my spine. This seems to happen every single time, so I'm starting to wonder if my spine is actually normal. However, luckily, they did heavily sedate me, so despite it being problematic, I wasn't really aware of what was going on and managed to survive unscathed.

Wednesday onwards was much better, as I simply had a short 10 minute treatment in the morning and was back home by 11am. The chemotherapy treatment does make me extremely tired though, so usually I have been back home at 11am and...straight to bed!

However, by this Monday I was feeling very weak and faint, so we needed to go into the day centre so that I could get a blood transfusion. It took till 4pm for the blood to arrive, by which point I was feeling very ropy, and because the blood had arrived so late, they needed to move me up to the ward as it would take 4 hours to complete the transfusion. So, I headed up to the ward, thinking that once that blood transfusion had finished I would be able to head home again. No such luck. When my blood results came back, we also received my CRP results. CRP are a protein in the blood, and the higher the levels, the higher the levels of inflammation - which leads to infection. A 'normal' person usually has levels of about 10, and an infected person would have levels of about 200-300. When you have leukemia, your CRP levels are higher than normal, but in this particular test, my levels were raised to 70, which is even higher than you would normally expect in someone with my condition. This meant that the doctors all suddenly panicked because I might have an infection and I got readmitted into hospital.

On top of my faintness, I have also been feeling some pain in my lower stomach, which led the doctors to believe that it might be a bowel or bladder infection. So, since being readmitted, I have had various types of scans to see if they can find anything. First I had an ultrasound scan (which was very painful as the woman kept pressing directly on the area that hurts), followed by an X-Ray and then a CT Scan. The ultrasound and X-Ray did not show anything, but the CT Scan did provide some answers - the pain from my stomach seems to be from an inflammation in my small intestine. However, the CT Scan also showed us something that we weren't actually looking for - I have two blood clots, one in my leg and the other in my lung. As you can imagine, this was a bit of a shock, especially as I had not been having any symptoms that suggested blood clots. On the plus side though, it is something that is commonly seen in leukemia patients, and to treat it they simply have to give me an injection into my tummy every day for 6-12 weeks that will help thin the blood and get rid of the clotting. Annoyingly, I have now started to have some symptoms, as today I started getting chest pain, but I'm managing to control this with pain relief - thank the Lord for morphine! It is a beautiful thing.

In terms of the inflammation in the intestine, the doctors need to treat that with antibiotics whilst I am still in hospital. So, it looks like I will have to stay here for at least a few more days. I'm missing home like crazy (especially now I don't have constant access to a fridge and can't watch TV past midday), but in a way I feel very lucky that they have found the cause of the problem so early - now they will be able to treat everything before it gets any worse.

Ok, so my body seems to be struggling a little bit this week! But I promise that everything will be alright in the end, and hopefully I will be back home before we know it.

Home Time!

On Tuesday I received the last bone marrow and lumber puncture of this part of my treatment. I was given plenty of sedation again (thank goodness), but it still wasn't very comfortable. At one point I had horrible pins and needles down my leg, which I have to admit was very sore. Unfortunately, I will have to receive a lumber puncture every Tuesday as the next part of my treatment, so I guess I will have to get used to them. I just need to remember how important they are - the lumber puncture ensures that no Leukemia cells reach my brain - so, it may be painful, but all in a good cause.

However, after the horrible treatment, I was given the fantastic news that I could go home! After the sedation had worn off they were going to sign my discharge letter, give me my medication and send me on my way to live my life as an outpatient!
...This was much too easy of course. Something had to go wrong. And of course it did. Mum and Sam packed everything into the car to go home, but then... my medication went missing. The pharmacist had only provided us with half my medication, so no home for me.

Luckily I only had to survive one more night. It took until 3pm yesterday, but finally they sorted out all my medication and set me free! I have now officially been discharged! The good news continued as I was also told that the bone marrow results were very good - so treatment seems to be working well as we move on to the next stage.

This means that I will be going into the second part of my treatment known as Phase 2 Induction. Even though I will be living at home the treatment will be fairly intense, with me travelling into hospital to receive chemotherapy every day, with the exception of weekends. This will be with new chemotherapy drugs that I haven't had before. Being in the day clinic will be a little strange too - I'm used to receiving chemo in my own room, so the idea of lots of other cancer patients getting chemo at the same time seems a little weird. I am feeling very nervous about it.

But despite my nerves, I feel extremely happy. I am so grateful and relieved that treatment has gone well so far, and I have every confidence that this will continue into the next stage, because I know that I can beat this. Plus, being at home is amazing. I now get to be constantly around the people that I love (and constantly have access to the fridge - the most important thing). So, really, I'm over the moon right now.

Day 25

So, remember when I was pathetically moaning about my bum being sore? Turns out that this moaning was actually for a genuine reason.

On Tuesday afternoon I was taken for an MRI scan to check out if there were any major problems. MRI scans are really strange by the way. I thought that all you would have to do is roll into the machine and lay still - and, whilst this is true - no-one prepares you for the horrendous noise of the machine. I had ear plugs in and was listening to music, but it still sounded like gunfire from above and drilling from below. Terrifying machines!

Anyway, I received the results from the MRI yesterday and it turns out that I do actually have a hip problem. Basically, the steroids that I have been taking are restricting the blood supply into my hip, and that is what is causing my discomfort. As my steroids are such an important part of my treatment it's crucial that I keep on taking them for the time being, but I do need to be careful with movement. The general consensus is that I can wander around the ward a little, but not much further, so my parents and Sam will have to wheel me down to the cafe so I can get my munchies (Yes, I am still starving all the time).

In other news, the hair is gone. Completely! Over the past few days it has been falling out progressively, but I made the decision today to get the rest shaved off - so you can now all say hello to my beautiful, bald head.

In terms of wigs, I made the decision to go for one brave and one normal choice. So, I was a daredevil and chose the red wig from the fake wigs, and I'm also being fitted for a mid-length, brunette, real hair wig from the Princess Trust next week, something a lot closer to my original hair. Thanks for all the votes and suggestions! I hope you like my final choice.

Thank you Cineworld and Marrow Aberdeen!

A totally amazing thing happened yesterday. Cineworld Queens Links, with the help of Marrow Aberdeen, opened their doors between 12noon and 5pm to hold an event raising awareness for bone marrow donation.

But not only did a few people wander in and sign up as bone marrow donors - an incredible 52 people ventured down to the beach to sign up. 52 people! I was genuinely blown off my feet when I heard it was that many! The fact that all those people took the time out of their day to sign up is truly amazing, and I wish that I could go around and thank each of you 52 wonderful people individually. By just signing up you have given me the possibility of life, and I will never be able to thank anyone enough for that.

As well as those 52 amazing prospective donors, I am so grateful to all those at Cineworld and Marrow Aberdeen for making the clinic a possibility. It was your hard work and support for me that made the event  successful, and I am so grateful. Like I said in my card - I promise to buy you all a drink when I've beaten this thing!

Unfortunately I obviously couldn't be at the event myself, but I've got some photographs to give you all a taster of how wonderful it was. An amazing day organised by some amazing people. Thank you.