Day 89 to Day 122: Turning 22!

So, last Saturday it was my birthday! I want to thank everyone for my birthday wishes, cards and presents. I had a wonderful day in the Cairngorms with Sam where we went for a beautiful walk and had a leisurely lunch. Reaching 22 seems pretty poignant to me as I have been through so much in the past year, and I am so grateful to still be here - as cheesy as it may seem; I am truly happy to be alive. I just want to thank everyone for all their support over the past year - all of you that have been following my story have helped me through all of this, and it is your support that has helped me stay positive. So, thank you!

Since I last wrote, Day 100 has been and gone. This was supposed to be a fairly significant day as I was due to start coming off some of my drugs. However, due to the fact that I had GVHD and that I am still taking steroids this could not happen - so we have to wait another couple of weeks for me to come off my steroids before any other changes can be made.

In the good news, my blood sugars have been stable, so hopefully by the time the steroids are finished I will be able to stop checking them every day. However, there have also been some more blips along the way - during one of my regular blood checks Dr. Gordon picked up some abnormalities in my blood. Basically, the immune suppressant I was taking, cyclisporine, was causing some of my platelets and red blood cells to be consumed, meaning that I was very low on platelets. Apparently this can be quite common in patients who have had GVHD. Luckily, all I had to do was stop taking the cyclisporine immediately and start taking an alternative immune suppressant.

It was also discovered that I was low in B12. Usually people who are low in B12 are vegan, which suggests that the problem is not that I am not ingesting enough B12, but that my body is not absorbing it properly. This means that I now have to have B12 injections every 3 months.


Last Thursday I had a bone marrow biopsy. I got my results back this week and they are slightly mixed - the fantastic news is there is no sign of leukemia in my bone marrow. However, in less good news, there is still some of my own bone marrow present, i.e. it is not all the donor's bone marrow. This means that there is still a chance that the leukemia will come back. So, technically, I don't have cancer any more, but I'm still not all clear as there is still a chance I could relapse. To try and fix this problem the doctors are going to start reducing my immune suppressant and hopefully the donor cells will start to kick into action. I will need another bone marrow biopsy in about 8 weeks to see how things are progressing - so, fingers crossed things go well!

Day 78 to 88

As always, you think things are going swimmingly, and then something else pops up to get in the way - recovery is a bit of a bumpy ride! I had my regular check up in Aberdeen on 11th and they were a bit concerned by some of my blood results so wanted to have a look at my blood pressure and blood glucose levels again. Blood pressure was fine, but my blood glucose came to a massive 26 - much higher than it should be (normal levels should be lower than 10).

This meant I was immediately referred to the diabetic team and I met them all the next morning. It was all a bit overwhelming as I was officially diagnosed as diabetic and provided with a huge amount of information about the two types of diabetes and how they work etc. Luckily, my diabetes seems to be steroid induced - so hopefully once I am off the steroids it will go away. Whats a bit of diabetes when you have taken on leukemia, rounds and rounds of chemo, a bone marrow transplant and a trip to ICU, eh? For the time being I have to take blood sugar levels 4 times a day and I have been given more medication to take - sometimes I think I am taking so many tablets that I might turn into a tablet myself.

The diabetes team are ringing me everyday to check on my glucose levels and they seem to think that the medication is working as my levels seem to be staying closer to 15 now. This is all good news as it does seem to suggest that this is something temporary. I am just trying to be careful about what I eat at the moment, but cutting out sugary foods is no bad thing as I need to get rid of these chubby cheeks that I seem to have gained from the steroids! (Although cutting out chocolate is proving to be quite hard... It's funny how when someone says you can't have something you begin to crave it constantly.) To help with these food changes I have been referred to a dietitian who I will see next week.


Apart from all of this, everything else seems to be going well - I'm managing to get out more and I am concentrating on keeping myself busy. I had a lovely Valentines Day with Sam, and a great, if very windy, day out with my parents in Stonehaven. My steroids should only last for another month or so, and once I am off them, we should be able to really gauge how my body has responded to the treatment - so not long now!

Day 57 to Day 77

This is just a short post to let everyone know that things continue to move in the right direction. There are always a few problems along the way, but generally things are improving, and I continue to feel stronger everyday.

I have been going to hospital twice a week - one day in Glasgow and one day in Aberdeen. So every Monday has seemed like a bit of a mammoth journey, as I have to get to Glasgow and back in one day. However, my Macmillan nurse has been amazing and has organised taxis for me every week, so I get to just sleep in the back of the taxi - which definitely makes it easier.

Every time I visit the hospital there seems to be small improvements, and they are very slowly taking me off some of my drugs and reducing my steroids by 4mg a week. They are only little steps, but its all little steps towards normality, which is great.

One of the problems which I have faced concerns my Pick line. If you have been following my blog from the beginning you will know that I've not had the greatest luck with lines - my first Hickman line lasted about three months, but then had to be removed just before my transplant due to infection. The next Hickman line then lasted a pitiful few weeks before it was removed and replaced with a neck line whilst I was being treated in ICU. So, the last effort was to put a Pick line in my right arm. Well, it seems that that didn't agree with me either, as my arm went all swollen and purple; unfortunately I have developed a blood clot, meaning the Pick line had to come straight out. I've had blood clots in my lungs and thigh earlier in my treatment, but these were caused by an enzyme injection, unlike the one I currently have, which just appears to be bad luck. This means that I am back on daily injections into my stomach to treat the blood clot, which will probably last about three months. It isn't too bad though - I'm just very glad that the blood clot was found and I can now be treated.

However, as I don't have a line anymore, every time I give blood samples (twice weekly), they have to take it peripherally, or straight from my veins, so I'm turning into a little bit of a pin cushion! Fortunately they made the decision this week that I may not need to give as many blood samples in the coming weeks as everything is going so well, so fingers crossed things continue to improve. Also my consultant in Glasgow suggested that I may be able to reduce my hospital visits there, which is great news - so next week I get get a relaxing Monday rather than making the 7 hour round trip!


Other small issues include my blood glucose and blood pressure levels being a little high, but this seems to have settled now, so I don't think there is anything to worry about.

Generally I have been feeling stronger everyday - I have been doing lots of walking around the countryside with Sam and have even been using my exercise bike and attempting some exercise DVDs! So, hopefully I will be fit as a fiddle before you know it.

Day 33 to Day 57

Luckily on Christmas Day I was allowed out on pass from hospital, so got to spend a very relaxing day at home, and then was finally discharged from hospital completely on Boxing Day. So overall I had a lovely festive period at home, and surprise surprise, I even managed to stay awake for the bells on New Years Eve!

However, I was still having some problems with nausea and my temperature still wasn't really settling, which was making life a little difficult for me. So finally, when I visited Glasgow for a hospital appointment last Thursday, it was decided I should be readmitted to hospital again, only this time it would be in the Beatson, so we could hopefully find out what was really going on, as they specialise in post bone-marrow transplant care.

It was quickly assumed that I had GvHD. This is Graft vs. Host Disease, where basically the new cells that I have been given begin to attack the tissue in my organs. It sounds scary on the face of it, but a small dose of GvHD is actually a good thing, with it often being shown that those that have GvHD have less chance of redeveloping the initial disease, i.e. hopefully I now have less chance of my leukemia coming back - which can only be a good thing, as it is shown that those with a little GvHD have a better chance of recovery. This is because, as well as attacking my own tissue, the new cells will also attack any remaining leukemia in my body.

Luckily, the GvHD is also pretty easy to treat as I only have to take steroids. Although, I am a bit wary of this. If you have been following my story from the beginning, you will know that I had problems with steroids when I was originally put on them, as they caused a blood flow problem in my hips. The doctors have tried to help this time by giving me another drug to support my bone health, so hopefully it will do the trick. I will be sure to keep a close eye on any change in feeling in my hips, as it was very painful last time and not something that I wish to repeat. Despite this though, the steroids seem to be doing the trick - and I don't feel nauseous for the first time in weeks!

I was only in hospital until Tuesday, so have had a couple of nice days of home since I returned. I even managed to get out for a walk in a bit of the Aberdeen sunshine, so overall I am feeling much more positive - onwards and upwards I think.

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