The Big Move

I'm sorry that it has taken so long to update you on everything, but I feel like a lot has been going on, both on a personal level and medically.

Firstly I was able to go on holiday with Sam to Spain, which was lovely. Due to the fact I had blood clots during my treatment I did not think they would let me fly at all, so, even though we couldn't go further than Europe, being able to leave the UK at all was amazing. The last time we went on holiday was when we went to Corfu in late May 2015, when I was already suffering some leukaemia symptoms - even though I did not realise at the time. So, to go to Spain just over a year after I was diagnosed felt like a huge step forward, and gave me a lot of hope that soon I will be able to put all of this behind me once and for all.

Over the past couple of months I have also had the pleasure to attend two beautiful weddings and catch up with some friends that I have not seen in a long time. So, overall, things have been great.


At the end of last week Sam and I also made a big step forward and moved down to London! This was mainly because Sam has started working down here, but I feel like it has been a really good decision for me as well. Moving away acts as a representation of starting a new life post transplant, which I am very much looking forward to. Whilst I was going through all my cancer treatment I don't think I really stopped to think about how huge and, actually, fairly devastating the whole thing was. It has only been over the past couple of months that I have caught myself remembering some parts of it in a kind of haunting way when my mind wanders a little. However, moving down here feels like starting a completely new slate, so I can begin to really come to terms with what I went through and begin to move on from it.

Medically, things have been a little bit more complex. In some very good news my last bone marrow sample was taken successfully (third time lucky) and I have been told that the pesky Philadelphia chromosome has been reduced from being present in 0.3% of my cells to only being present in 0.001% of my cells. This has given me a lot of hope that we will eventually be able to get rid of it completely.

However, every time I reduced my steroids the nausea continued to bother me. So, to find out exactly what was going on the doctors decided to do an endoscopy to see whether I still really had GVHD or whether it was something else causing my nausea. For anyone that does not know what an endoscopy is, it is when they use a camera to have a look around your stomach. It wasn't particularly pleasant, but thanks to sedation, I don't really remember much of it. Here's a handy tip for if you ever need any kind of medical procedure: If they offer you sedation, always say yes. It makes things a million times easier, and you get to feel a little drunk without the hangover afterwards - result.

Anyway, I got the results from the endoscopy yesterday and it was completely clear. In one way this is amazing news, as it means that I don't have GVDH anymore, so I should be able to come off the steroids and my donors cells should completely take control. However, it has left me feeling a little confused, as I now no longer have an explanation as to why I feel nauseous. It has been suggested that this could be because of an allergic reaction to some of my medication. So, I will have to discuss this in my first appointment at University College London Hospital on Thursday.

In good news, if it is simply an allergic reaction, hopefully we will be able to fix it soon and I can get my life fully on track! I definitely feel like I am getting somewhere now,

Laura xo

'Accrington Pals' and other news

I have been very busy since I last wrote - lots of trips across the country and lots of catching up with people that I have not seen for a very long time. It's so lovely that, despite some recurring problems with my health, generally I am well enough to visit people and participate. I have to admit that all this stuff can be a little tiring, but I am determined to do as much as I can and embrace all the
opportunities that come at me.

On 1st July I finally returned to Berwick-upon-Tweed for the first time in about 3 years and was lucky enough to see an amazing production of 'Accrington Pals' directed by my old drama teacher - the fantastic Lydia Lee. This was organised to commemorate 100 years since the Battle of the Somme. In the lead up to this battle, the men of Accrington created a regiment of 700 men who were then sent over the top on 1st July 1916, with only about 100 men returning home. This was a very sobering and emotional performance from all involved, reminding the whole audience of the brave men that gave up their lives as well as the women who were left behind to pick up the pieces.I really want to congratulate all the people involved - Laura Catterall, Jonathan Combe, Diana Rowland, Slink Jadranko, Amy Cowen, Rachel Guthrie, Maureen Gillie, Bob Jeffrey, Trevor Hedges and Euan Duthie. They all brought the characters to life in a way that moved every member of the audience. It was truly fantastic.

I also have a personal connection with the play as I performed in it when I was at school, alongside Rachel Guthrie and other school friends, directed by Lydia. As well as this, this production was also used as a fundraiser for Anthony Nolan. I am so grateful that those involved decided to put the money raised towards the charity that helped save my life, and so happy to say that they managed to raise over £300! Thank you!

Whilst in Berwick, I also had a great evening out with a bunch of my school friends who I had not seen in a very long time. It was a fantastic reunion. I also made an appearance at my schools Founder's Day, where I delivered a speech to thank them for all their support and for partaking in fundraising activities for Anthony Nolan. Again it was lovely catching up with everyone, especially my old school teachers.

In other news, I also spent a week travelling around the highlands with my friends from Germany (Jessica and Lukas); have attended two job interviews; went to see Take That and Olly Murs in Hyde Park with Mum; and managed to graduate from university! I made the decision to just graduate with a designated degree rather than continue on to honours. After all I have been through I really want to move on from university to a new chapter of my life, and I am determined to find a job that I can throw myself into. I have not heard back from the interviews yet, but I should hopefully get some news regarding that in the next few weeks - so I will keep you updated.



Amidst all this I have been having some issues with my health. At my last appointment in Glasgow I received the news that my immune system is now 96% donor (i.e. 96% of my blood originates from my donor's stem cells that I received) - which is amazing news. However, the 4% that is still me doesn't seem to want to go down without a serious fight. I keep getting recurring GVHD every time my steroid amount is reduced, meaning that I have had a lot of fatigue and sickness in the last three weeks or so. However, I have another appointment in Glasgow tomorrow, so I am hoping that they can figure out what is going on and fix me.


...Oh, and I also managed to break my wrist during some over enthusiastic ceilidh dancing at my graduation ball. It seems that too much fun really is quite dangerous! Luckily though, my cast should be off at the very beginning of August, and I'm sure that when they remove my cast the doctors will very much enjoy all the lovely messages that my friends have written on it.

Laura xo

Update

Sorry that it has taken me so long to update everyone on my progress - to begin with everything was going swimmingly, meaning that my life was pretty boring and there was not much to write about. Then I got ill again, which made my life more interesting, but I just couldn't be bothered to write about it. Anyway, I am back now ranting on about things, which I am sure you have missed!

In my last blog I explained that I did not have leukemia anymore, but there was still some of my own bone marrow present, meaning that there was still a chance that the leukemia could develop again. The plan was to reduce my immunosuppressants and steroids down to zero so that the new bone marrow from my donor could properly kick in and get rid of all my old bone marrow. This was all going well - I was slowly reducing my drugs every week, and it seemed to be doing the trick as my blood result showed that the donors bone marrow was slowly becoming more dominant.

However, as my drugs were being reduced there was always the possibility that my GVHD may return to bother me again - which unfortunately it did. I originally thought I had picked up a bit of food poisoning as I was being a bit sick, but it did not seem to be going away. For a couple of weeks I was barely eating, and I was sleeping pretty much all of the time. Eventually I had enough of it and went to the hospital where they put me back on a low dose of steroids. Luckily this treatment seemed to help almost immediately, and I am now back to pretty much functioning as normal.

Since my health has improved Sam and I have spent a little time away at Loch Lomond. The Willow Foundation are a charity that work with those who have suffered or are suffering serious illnesses, to help to provide them with a special treat. Willow definitely gave us the ultimate two-days-holiday, booking us into a spa hotel on the edge of Loch Lomond. We had a fantastic time filled with lots of walking, eating, swimming and relaxing. It was a truly fantastic experience, and I am so grateful to Willow for organising it all. They are a fantastic charity and well worth your support.

Moving forward I am due to have a full assessment in Glasgow on Tuesday to discuss how my recovery is going, and how to move forward. It's crazy to think that it is almost a year now since I was diagnosed. There have been a lot of ups and downs, but I am grateful to you all for helping me get through it. Hopefully Tuesday will be filled with good news and I can start to plan what I want to do with my life over the next few months.

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.