Howdy
I just thought I'd keep you all entertained with another update. My last post finished with me going home after my long and intense transplant. This post will continue from that point and hopefully get us back up to date with how things are now.
The car journey home was weird. I was excited about seeing friends and family I hadn't seen in a long time. It also felt weird seeing places I recognised and when I arrived back in Ashford some areas had changed a bit e.g. building sites were looking like buildings now. That was weird. It sounds really strange, but I also think it felt a little bit odd leaving the hospital; I had been in there under their care for a quarter of a year, so I suppose I felt in a bit of a comfort zone there after so long.
When I finally arrived back at my house I was greeted by my family, who had been waiting at my house for when I arrived. Being at home again took a little bit of getting used to, but it was AMAZING to finally be sitting at home with my family, with my loyal cat curled up next to me again.
I would be going to UCLH twice a week for blood tests and to see if any of my doses for the tablets I was (and still am) taking needed changing. I kept my PICC line in because the doctors said that I would probably need blood transfusions or platelets twice a week.
On my first clinic appointment my doctors were very pleased with my progress, I didn't need a transfusion as my blood counts were good. After a few appointments of my bloods staying good and not needing transfusions it was decided that my PICC line would be taken out, as it wasn't needed, and my appointments would only be once per week.
The PICC line removal was supposed to take 5 minutes, just give it a tug and it would come out (obviously, in a bit more of a controlled way). BUT, when do I ever just let things be simple? In total, it took about an hour and a half to get the line out of my arm!! Apparently my veins were contracting,which was basically holding onto the line, stopping it from sliding out of my arm. From then on, any blood tests would be done with needles.
Now I am only going once evey fortnight, as my blood counts have been so good that I havent needed any transfusions. I have got a bit of graft versus host disease, which means my new cells are recognising my body as foreign, but thats treatable. Also the doctors do like GVHD because it also fights Leukaemia. Good stuff. I also had a blood test to see what my blood DNA is like, and its results showed that my blood is identical to that of my American donor now. This means my blood type has probably changed too, WOOP!
There is a type of white blood cell called a Lymphocyte, and apparently my Lymphocyte count is amazing for somebody in my situation. My doctor told me that if I had had a standard bone-marrow transplant, it could take up to a year to get that sort of Lymphocyte count. This means that my immune recovery is going pretty well. Double WOOP!
Im not allowed to go to school or to busy places because my immune system isn't at full strength yet and won't be for a while yet. I did manage to go to school briefly to collect an award for perseverance, which was cool. I saw a few of my mates while I was there too, always a bonus.
That's all for now... I'll have more updates soon
Andrew
:)
Thursday 2 December 2010
Thursday 28 October 2010
Transplant - The Finale
Hi again, time to continue with this story.
Basically, all we had to do now was to wait. Wait for the new cells to take to my body, settle in my bone marrow and start working. I had started Immuno-suppressants, which were to stop my own immune system from rejecting the new cells and vice versa. There were a load of other medications too, to stop me from getting ill, as my immune system was flat, and it would be a while before the new cells would start making neutraphils (to fight infection).
I did get ill at times though, including extremely high temperatures, sometimes I even had whats called "Rigors" (A rigor is an episode of shaking or exaggerated shivering which can occur with a high fever. It is an extreme reflex response which occurs for a variety of reasons. It should not be ignored, as it is often a marker for significant and sometimes serious infections). The rigors were nasty, I couldn't stop myself from shaking violently from head to toe, which made me feel pretty out of control and uncomfortable.
I was having blood transfusions regularly, and was having all sorts of scans, CT scans, Ultrasound scans of different organs to check for infection because of the temperatures. They did eventually find the problem and things settled down. By now my apetite had completely gone, and I was relying on my feeding tube to provide my nutrition.
Usually, people get neutraphils by around Day +28, and my 16th birthday fell on Day +27. I was hoping that I might have a neutraphil for a special birthday present. That didn't happen. In fact, I didn't even have half a neutraphil by Day +50! This was a concern, not only for me and my family, but for the doctors too. It was starting to look like a second transplant was pretty imminent. Luckily Rachel Hough, my doctor, and a leading expert in cord cell transplants, decided to speak to the man that trained her. She spoke to John Wagner, the man who instigated the first ever cord cell transplant over in America. They decided that they should persist with my current cells, stopped one of my drugs, and doubled a drug called GCSF (which stimulates the body and the new cells into producing white blood cells).
Day +52 - guess how many neutraphils? ... 1.94! Dr Wagner and Dr Hough had managed to kick my lazy-arse cells into shape! From then on my cells gradually increased, and I started to get visitors and was starting to feel better. After about 55 days of being confined to my room, I was allowed out to explore the ward.
I did spike temperatures again, but this time the doctors couldn't find the cause. Eventually, after scanning and investigating every possibility, they decided to remove my hickman line. Its very common for the lines to get infected, so it had to go. After 3 years of loyal service, on Day +60, they took him away (after a struggle to separate him from my veins). But there is some good news. They let me keep some of it as a souvenir!
Basically, all we had to do now was to wait. Wait for the new cells to take to my body, settle in my bone marrow and start working. I had started Immuno-suppressants, which were to stop my own immune system from rejecting the new cells and vice versa. There were a load of other medications too, to stop me from getting ill, as my immune system was flat, and it would be a while before the new cells would start making neutraphils (to fight infection).
I did get ill at times though, including extremely high temperatures, sometimes I even had whats called "Rigors" (A rigor is an episode of shaking or exaggerated shivering which can occur with a high fever. It is an extreme reflex response which occurs for a variety of reasons. It should not be ignored, as it is often a marker for significant and sometimes serious infections). The rigors were nasty, I couldn't stop myself from shaking violently from head to toe, which made me feel pretty out of control and uncomfortable.
I was having blood transfusions regularly, and was having all sorts of scans, CT scans, Ultrasound scans of different organs to check for infection because of the temperatures. They did eventually find the problem and things settled down. By now my apetite had completely gone, and I was relying on my feeding tube to provide my nutrition.
Usually, people get neutraphils by around Day +28, and my 16th birthday fell on Day +27. I was hoping that I might have a neutraphil for a special birthday present. That didn't happen. In fact, I didn't even have half a neutraphil by Day +50! This was a concern, not only for me and my family, but for the doctors too. It was starting to look like a second transplant was pretty imminent. Luckily Rachel Hough, my doctor, and a leading expert in cord cell transplants, decided to speak to the man that trained her. She spoke to John Wagner, the man who instigated the first ever cord cell transplant over in America. They decided that they should persist with my current cells, stopped one of my drugs, and doubled a drug called GCSF (which stimulates the body and the new cells into producing white blood cells).
Day +52 - guess how many neutraphils? ... 1.94! Dr Wagner and Dr Hough had managed to kick my lazy-arse cells into shape! From then on my cells gradually increased, and I started to get visitors and was starting to feel better. After about 55 days of being confined to my room, I was allowed out to explore the ward.
I did spike temperatures again, but this time the doctors couldn't find the cause. Eventually, after scanning and investigating every possibility, they decided to remove my hickman line. Its very common for the lines to get infected, so it had to go. After 3 years of loyal service, on Day +60, they took him away (after a struggle to separate him from my veins). But there is some good news. They let me keep some of it as a souvenir!
 |
| Dr John E. Wagner, me (with newly inserted PICC line in my arm) and Dr Rachel Hough. I have so much to thank these two for. |
Day +73 Dr John Wagner was visiting the UK to give lectures and said that he really wanted to meet me. So after having a new PICC line inserted into my arm to replace the old faithful hickman, John came to the ward and visited me. I got to meet the man who helped save my transplant, and he had done so all the way over in America. It was a real honour to meet him.
Day +74 I FINALLY CAME HOME! It felt so great to be home after 12 weeks of being in for transplant (if you include the conditioning and stuff)
Day +74 I FINALLY CAME HOME! It felt so great to be home after 12 weeks of being in for transplant (if you include the conditioning and stuff)
My next post will be about life at home and what happens next (we're pretty much up to date now)
thanks guys
Andrew
:)
Wednesday 13 October 2010
Transplant - Day 0
Hi Guys!!
Before I start this post I just want to talk about the new features on my blog. The first feature is a globe at the side of the page showing where the viewers of my blog are located, its quite interesting. The slight problem is that it will start counting from today, not from the start of my blog. I have actually had over 500 views now, ranging from the UK to America and Australia (hello to my overseas readers).
The next new feature is a share option at the bottom of each post. This will allow you to share links to posts you like through Twitter, Facebook, E-mail, Blogger and Google Buzz. So please dont forget to keep spreading the word.
Time for me to explain what "Day 0" is - Day 0 is transplant day, the day where I recieve my new cells. The day after will be called Day +1, the day after that will be +2 and so on. I just thought I'd explain that so you have a rough idea of the timescale in this post.
Day 0 came and the cells were in the hospital, after travelling from America and The Czech Republic. I would be having 2 bags of cells from the Czech umbilical cords, as they were stored differently from the Americans, who only had 1 bag. The procedure itself was fairly easy for me, but the nurses performing it had to be very careful. The cells were stored in liquid nitrogen ( I think, it was like -140 degrees) to prevent them from dying/ being damaged. The nurses had to grab the cells with thermal gloves and then place them into a bath type container which would defrost them.
Once defrosted the cells were ready to go. Each bag was put up individually and was allowed to drip into me through my line (as mentioned in earlier posts) just like a blood transfusion really! Each bag lasted about 20 minutes, and the nurses performed regular observations to make sure my sexy self wasnt having any dodgy reactions (as I have a record for that sorta thing now!). The whole transplant took about an hour, no reactions, and the most dramatic thing about the whole thing was that I managed to thrash my dad at FIFA whilst the transplant was happening (playing as none other than the Czech Republic).
You can see a tube running along my face in the picture, this is a feeding tube so that I was still fed even when I was too ill to eat myself.
Also, just thought I might add this bit, for a few days after the transplant I smelled of sweetcorn, although I personally couldnt smell it. There is a good reason for this. The cells were stored with a preservative, which is excreted through the pores as sweat. So, basically, my b.o. was sweetcorn-ish for a few days.
The next few days were very rough: I felt tired, sick, my stomach hurt, I was peeing out blood at one point and thats all I can really remember as I was sleeping for most of it.
I'm gunna leave it there for now, as there is still quite a lot to say. I dont exactly wanna blab it all out now and ruin the suspense do I?
cheers guys
Andy
:)
Before I start this post I just want to talk about the new features on my blog. The first feature is a globe at the side of the page showing where the viewers of my blog are located, its quite interesting. The slight problem is that it will start counting from today, not from the start of my blog. I have actually had over 500 views now, ranging from the UK to America and Australia (hello to my overseas readers).
The next new feature is a share option at the bottom of each post. This will allow you to share links to posts you like through Twitter, Facebook, E-mail, Blogger and Google Buzz. So please dont forget to keep spreading the word.
Time for me to explain what "Day 0" is - Day 0 is transplant day, the day where I recieve my new cells. The day after will be called Day +1, the day after that will be +2 and so on. I just thought I'd explain that so you have a rough idea of the timescale in this post.
Day 0 came and the cells were in the hospital, after travelling from America and The Czech Republic. I would be having 2 bags of cells from the Czech umbilical cords, as they were stored differently from the Americans, who only had 1 bag. The procedure itself was fairly easy for me, but the nurses performing it had to be very careful. The cells were stored in liquid nitrogen ( I think, it was like -140 degrees) to prevent them from dying/ being damaged. The nurses had to grab the cells with thermal gloves and then place them into a bath type container which would defrost them.
Once defrosted the cells were ready to go. Each bag was put up individually and was allowed to drip into me through my line (as mentioned in earlier posts) just like a blood transfusion really! Each bag lasted about 20 minutes, and the nurses performed regular observations to make sure my sexy self wasnt having any dodgy reactions (as I have a record for that sorta thing now!). The whole transplant took about an hour, no reactions, and the most dramatic thing about the whole thing was that I managed to thrash my dad at FIFA whilst the transplant was happening (playing as none other than the Czech Republic).
 |
| Me, Laura and Katie - The nurses that performed my transplant. |
Also, just thought I might add this bit, for a few days after the transplant I smelled of sweetcorn, although I personally couldnt smell it. There is a good reason for this. The cells were stored with a preservative, which is excreted through the pores as sweat. So, basically, my b.o. was sweetcorn-ish for a few days.
The next few days were very rough: I felt tired, sick, my stomach hurt, I was peeing out blood at one point and thats all I can really remember as I was sleeping for most of it.
I'm gunna leave it there for now, as there is still quite a lot to say. I dont exactly wanna blab it all out now and ruin the suspense do I?
cheers guys
Andy
:)
Thursday 30 September 2010
Transplant - part 1
Hi guys!
On Tuesday 6th July I was admitted to the ward and room where I'd spend the next 6 weeks. I dropped off my stuff in my room and headed towards the basement of the hospital for radiotherapy. I was starting 4 days of cranial boost radiotherapy. This is where they fire high dose x-rays at my brain. They had to make me a special plastic mask which clips to the table which I laid on for treatment. This stopped me from moving my head, so that they could accurately get the doses of radiotherapy in exactly the right places (see picture). This lasted for about 15 minutes, so it wasn't too bad.
Sorry I haven't posted for AGES, I've been a little busy. In this post I'll be telling you about the 10 days before my transplant, and what I had in terms of chemo and radiotherapy.
On Tuesday 6th July I was admitted to the ward and room where I'd spend the next 6 weeks. I dropped off my stuff in my room and headed towards the basement of the hospital for radiotherapy. I was starting 4 days of cranial boost radiotherapy. This is where they fire high dose x-rays at my brain. They had to make me a special plastic mask which clips to the table which I laid on for treatment. This stopped me from moving my head, so that they could accurately get the doses of radiotherapy in exactly the right places (see picture). This lasted for about 15 minutes, so it wasn't too bad. A few days later I started my first day of chemo. I had chemo for 3 days and overnight hydration (as well as the cranial boost radiotherapy on some days). After the few days of hefty chemo I had a day off! The side-affects hadn't kicked in too bad yet, but I was confined to my room and would be for a long time now.
Next up was 4 days of TBI (Total Body Irradiation), which would make me feel pretty damn poorly. This treatment affects the whole of my body, as the x-rays are spread so that my whole body gets a dose of the radiation (corr... after all this radiation I must glow in the dark!). I had to lay fairly still for an hour, but I wasn't held in place and they allowed me to listen to my own music whilst I was being treated. By the last day of TBI I was feeling really wiped out, I slept most of the day, and needed a wheelchair to take me to radiotherapy.
The day after my last TBI dose was the day of my transplant, Day 0 (woop!), but I'm gunna save that for my next post, which should be sooner than 3 months away! but no promises :)
thanks guys
Andrew
:)
Saturday 19 June 2010
The Aftermath...
Hi again, got lots of news to be talking about.
I came home from UCLH after lots of chemotherapy on a Sunday (cant remember the exact date). On Monday, the next day, I woke up but didnt feel too great. I was sitting my Maths GCSE at home when I had to stop because I felt too unwell to continue. I had a raging temperature, so had to go straight into my local hospital.
I spent 5 days in there, having lots of antibiotics and being regularly monitored to see how things were going, and if I had any infections. This meant I was unable to sit the rest of my GCSE's that week, and will be re-sitting them at a later date.
I returned home after a blood transfusion on the night of England's first world cup match. It was good to be home, and to have football on too was an extra bonus! The next day, I woke up feeling ill again. Typical. England played so badly against the USA it made me sick! I had another raging temperature... so was sent back into hospital AGAIN! Another 5 days of antibiotics and more transfusions.
Neville the neutrophil has probably gone to watch the world cup, as I havent seen him for so long!
I have just come out of hospital from my last bout of antibiotics, hoping that I get to stay at home for a while now. I put my skinhead to good use during England's POOR performance against Algeria. I painted the cross of St. George on the top of my head. (see image below).
I have also got news regarding my bone marrow transplant, and the treatment plans for me.
Unfortunately, they were unable to find a matching donor for me, but it its not bad news, as there is an alternative. I am going to have an Umbilical cord stem-cell transplant, which is basically the same sort of thing as a bone marrow transplant, they just use the cells from Umbilical cords instead.
I will be having lots of health checks, scans etc. in the next few weeks and am hoping to start preparation for the transplant in the early part of July. Lets just hope I pass my M.O.T.!
I will be in hospital quite a lot once the transplant stuff all starts, but I'll try to keep posting on here when I can, to keep you updated. :)
thanks
Andrew
:)
Wednesday 2 June 2010
It's been a while
Howdy everybody! Long time no speak.
My last post ended with me talking about having a lumbar puncture, so I cant think of a better way to start this post than to tell you how it all went.
On tuesday, I had starved for the anaesthetic and was in the waiting room ready to be knocked out. When I was called in, my original plan was to rap the theme tune to "the fresh prince of bel air". However, when I got onto the operating table, they silenced me with an oxygen mask. I wasn't going to be beaten and so decided to do my Darth Vader impression. Maybe I was a bit too drugged up to know any different, but I think they found it hilarious! They even let me keep the mask after the operation as a souvenir!!The results of the lumbar puncture and bone marrow tests were clear and good.
I had my chemo over the next few days and then was ok to go back home. I felt very well in myself, didnt feel too sick or have headaches. Tiredness was the main issue with me, I felt like I had been hit by a bus for most of the time.
I sat one of my GCSE's whilst I was in hospital too. It was a science paper, which wasnt too bad. I thought it was pretty difficult considering I was so tired, but I dont think I did too badly in the exam itself. So no complaints.
I am currently having the same cycle of treatment again after 3 days break at home. I will probably be feeling even more tired after this bout, so I hope its not too long before I am well enough to post again.
Thats pretty much it for now guys, speak again soon
Andrew
:)
My last post ended with me talking about having a lumbar puncture, so I cant think of a better way to start this post than to tell you how it all went.
On tuesday, I had starved for the anaesthetic and was in the waiting room ready to be knocked out. When I was called in, my original plan was to rap the theme tune to "the fresh prince of bel air". However, when I got onto the operating table, they silenced me with an oxygen mask. I wasn't going to be beaten and so decided to do my Darth Vader impression. Maybe I was a bit too drugged up to know any different, but I think they found it hilarious! They even let me keep the mask after the operation as a souvenir!!The results of the lumbar puncture and bone marrow tests were clear and good.
I had my chemo over the next few days and then was ok to go back home. I felt very well in myself, didnt feel too sick or have headaches. Tiredness was the main issue with me, I felt like I had been hit by a bus for most of the time.
I sat one of my GCSE's whilst I was in hospital too. It was a science paper, which wasnt too bad. I thought it was pretty difficult considering I was so tired, but I dont think I did too badly in the exam itself. So no complaints.
I am currently having the same cycle of treatment again after 3 days break at home. I will probably be feeling even more tired after this bout, so I hope its not too long before I am well enough to post again.
Thats pretty much it for now guys, speak again soon
Andrew
:)
Thursday 13 May 2010
Neville Has Left The Building
Yep, it's true. Neville the Neutrophil has gone. I now have 0.3 neutrophils, which means I am now "Neutropenic".
Because Neville would be fighting infections and germs (if he were still here) I have to be extra careful and check my temperature regularly. I have to stay away from anybody with a nasty cold, cough etc. It is also advisable that I avoid public places as much as possible (places like cinemas and public transport). If I developed a temperature, I may have to go into hospital to have antibiotics, as my body will have very little means of getting rid of the infection on its own.
I cannot have anything to make my neutrophils come back, it is just a case of waiting for my body to make some more.
I have been away from hospital for a week now, and I have been really well. I have been pretty tired, but as long as I'm not feeling sick, I can't complain. Thumbs up!
Also, another bit of random news, my hair is slowly starting to grow back. Its a bit like baby hair at the moment, its only fine, not a full head of hair yet. BUT... I told ya dad, my hair grows back ;) ... couldn't be the sexiest skinhead forever, I think I'll pass the glory to somebody else!
On Monday (17th May 2010) I will be going back to UCLH for a few days of chemo. I have had this drug before, just in a smaller dose.
On Tuesday, I will be having a bone-marrow test and a lumbar puncture to see how things are going. I will be knocked out for these procedures. I have had so many of them now that the thought of it doesn't faze me in the slightest.
HERE IS WHERE YOU COME IN. When I get knocked out, I tend to do something amusing. I have sung the national anthem, told jokes and debated about football. I am kinda running out of ideas... care to post any suggestions as comments?
I will try to post another blog entry whilst I am in hospital, but don't hold me to it, as I might not feel well enough to write. If I do post anything, I will tell you about what I did on Tuesday.
Hopefully Neville will be back with us soon. I hope my explanation of Neutropenia wasn't too confusing.
From your sexiest skinhead (but not for too much longer, we hope)
Andrew
:)
Because Neville would be fighting infections and germs (if he were still here) I have to be extra careful and check my temperature regularly. I have to stay away from anybody with a nasty cold, cough etc. It is also advisable that I avoid public places as much as possible (places like cinemas and public transport). If I developed a temperature, I may have to go into hospital to have antibiotics, as my body will have very little means of getting rid of the infection on its own.
I cannot have anything to make my neutrophils come back, it is just a case of waiting for my body to make some more.
I have been away from hospital for a week now, and I have been really well. I have been pretty tired, but as long as I'm not feeling sick, I can't complain. Thumbs up!
Also, another bit of random news, my hair is slowly starting to grow back. Its a bit like baby hair at the moment, its only fine, not a full head of hair yet. BUT... I told ya dad, my hair grows back ;) ... couldn't be the sexiest skinhead forever, I think I'll pass the glory to somebody else!
On Monday (17th May 2010) I will be going back to UCLH for a few days of chemo. I have had this drug before, just in a smaller dose.
On Tuesday, I will be having a bone-marrow test and a lumbar puncture to see how things are going. I will be knocked out for these procedures. I have had so many of them now that the thought of it doesn't faze me in the slightest.
HERE IS WHERE YOU COME IN. When I get knocked out, I tend to do something amusing. I have sung the national anthem, told jokes and debated about football. I am kinda running out of ideas... care to post any suggestions as comments?
I will try to post another blog entry whilst I am in hospital, but don't hold me to it, as I might not feel well enough to write. If I do post anything, I will tell you about what I did on Tuesday.
Hopefully Neville will be back with us soon. I hope my explanation of Neutropenia wasn't too confusing.
From your sexiest skinhead (but not for too much longer, we hope)
Andrew
:)
Monday 3 May 2010
First Impressions
Howdy! Thank you all for your continued support and for recommending this site to people, keep up the good work!
On friday (30th April 2010), I had my first visit to UCLH as a patient. I had arranged to go to watch a Lostprophets concert on the same day, so I wasn't sure whether or not I would be able to go. My consultant at UCLH, Rachel Hough (UCLH's version of "The Hoff") was happy for my chemo to be delayed until the next day, so that I could get home in time for the concert in the evening. They performed all of their checks, took my weight and blood pressure etc. and then let me go home for the night.
Lostprophets were amazing! I had a blast. They played all of my favourite songs, and threw in some of the new stuff as well. I loved how the WHOLE crowd (me included) was singing "Last Summer" with the band. The atmosphere was brilliant and it was nice to have a night out before I started chemo, as soon I will probably be feeling too ill to be able to do things like that, and I will be feeling pretty rough for quite a while.
On saturday I went back to UCLH to start chemo. I was put into room 2... and wow! It has a massive flat-screen tv (perfect for my xbox), its own computer. I can see Wembley Stadium when I look out the window (and when you are on the 12th floor, the view is pretty spectacular!).
I started chemo on saturday afternoon, a series of infusions which, in total, takes about 9 hours. It is 2 different types of chemo and I am having these infusions every day for 5 days.
So far, I have been having a lot of anti-sickness drugs, but I am feeling very well considering the stuff I am taking. My bloods are dropping daily, and I have 1 heroic Neutrophil left... I called it Neville. HANG IN THERE BUDDY! (Neutrophils are a type of white blood cell, which fight infection). Tomorrow (4th May 2010) will be the 4th day of the chemo, but so far so good. All the staff here at UCLH have been looking after me really well and have made me feel really welcome.
If I am well enough I will update you again soon with how things are going, but until then it's farewell.
Remember to spread the word... come on, it's what Neville would want.
Andrew
:)
HANG IN THERE NEVILLE THE NEUTROPHIL!
On friday (30th April 2010), I had my first visit to UCLH as a patient. I had arranged to go to watch a Lostprophets concert on the same day, so I wasn't sure whether or not I would be able to go. My consultant at UCLH, Rachel Hough (UCLH's version of "The Hoff") was happy for my chemo to be delayed until the next day, so that I could get home in time for the concert in the evening. They performed all of their checks, took my weight and blood pressure etc. and then let me go home for the night.
Lostprophets were amazing! I had a blast. They played all of my favourite songs, and threw in some of the new stuff as well. I loved how the WHOLE crowd (me included) was singing "Last Summer" with the band. The atmosphere was brilliant and it was nice to have a night out before I started chemo, as soon I will probably be feeling too ill to be able to do things like that, and I will be feeling pretty rough for quite a while.
On saturday I went back to UCLH to start chemo. I was put into room 2... and wow! It has a massive flat-screen tv (perfect for my xbox), its own computer. I can see Wembley Stadium when I look out the window (and when you are on the 12th floor, the view is pretty spectacular!).
I started chemo on saturday afternoon, a series of infusions which, in total, takes about 9 hours. It is 2 different types of chemo and I am having these infusions every day for 5 days.
So far, I have been having a lot of anti-sickness drugs, but I am feeling very well considering the stuff I am taking. My bloods are dropping daily, and I have 1 heroic Neutrophil left... I called it Neville. HANG IN THERE BUDDY! (Neutrophils are a type of white blood cell, which fight infection). Tomorrow (4th May 2010) will be the 4th day of the chemo, but so far so good. All the staff here at UCLH have been looking after me really well and have made me feel really welcome.
If I am well enough I will update you again soon with how things are going, but until then it's farewell.
Remember to spread the word... come on, it's what Neville would want.
Andrew
:)
HANG IN THERE NEVILLE THE NEUTROPHIL!
Friday 23 April 2010
The Start Of Something New
Howdy! It's time for some more action!
Upon hearing the news of my Leukaemia relapse, I was instantly met with support and encouragement from all angles. This enabled me to keep a strong attitude, and still remain determined to beat this disease. I promised my friends and family (and now to you too) that "I will beat this bugger, even if I have to do it 100 times over".
The treatment plan was for me to start intensive chemo, with a bone-marrow transplant to take place in 4 months time. I was told that I am likely to be spending a lot of time in hospital, with little immune system, I am probably going to catch a lot of infections.
In my first stay during the new "R3" plan (the R means relapse) I had a drug which was bright blue. This made my pee go blue... It was like turning into an Avatar whenever I went to the toilet!
Whilst I was staying at GOSH, the doctors suggested that I had a look at a local hospital called UCLH (University College London Hospital). They said it had a specialist Teenage Cancer Unit, which means it is designed for people of my age, in my situation. I went to have a visit with my family to see what was on offer.
After viewing UCLH, I was very impressed by the facilities available for me, however, I did not want to instantly transfer across, as I needed time to come to terms with the fact that I had relapsed. It was too much news, too soon.
Today (23rd April 2010), I went to Great Ormond Street for another lumbar puncture, and whilst I was there I made a very important decision. I had taken my time to think about the choices available, and what was best suited for me. A doctor from UCLH came to the hospital to introduce herself and to reassure me about my transition. It felt right for me to change hospitals, and "Start Something New".
So, that was it. My last ever visit to Great Ormond Street Hospital as a patient. The mixture of emotions I felt was unreal. I was excited at the prospect of a hospital perfect for my needs, but sorry to say goodbye to the brilliant people at GOSH.
This is a personal message to the staff at Great Ormond Street Hospital, who saved my life, and cared for me over the last 3 years. Thank you from the bottom of my heart for everything. You have all been like family to me, and I will miss you greatly. GOSH will always have a place in my heart, and I have many memories I'll never forget. I will try to stay in contact as much as possible and I will come back and see you when I get the chance (couldn't get rid of me that easily, could ya?)
Thank you so much.
Next friday I will be staying at UCLH for the first time as a patient and having some more chemo. I will keep you posted on my progress.
Who knows what the next chapter holds?...
Andrew
:)
Thanks for the memories. (Me and Ray)
Friday 16 April 2010
Life With Leukaemia Isn't Always Bad
Before I explain the title to this post, it's time for an update.
I am no longer taking the Morphine for my joint pains, and I am no longer using a wheelchair to get me from A to B. The joint pains seem to have gone (for now, hopefully forever... we can dream). I'm still the sexiest skinhead around, and I'm starting to get used to having a breeze against my scalp! I'm starting steroids today, so if I turn green and start smashing things to pieces... you know why, okay?
Sorry dad, my skinhead's better :)
Anyway, I shall explain the title to this post.
Since being diagnosed back in 2007, I have had some really nice things happen to me, some have been from the kindness of people's hearts. This blog post will be to tell you some of the great times I have had because of Leukaemia.
First of all, in September 2007, Manchester United kindly donated tickets for me, my brother and dad to go to watch the MASSIVE match at Old Trafford, where they gave host to Chelsea in a title deciding 90 minutes. We had brilliant seats, and to top the lot... Man U thrashed Chelsea in an impressive 2-0 win. We saw quality players like Ronaldo, Rooney, Vidic, Ferdinand, as well as the talented Chelsea team.
My family have been keen to raise money for charity since my diagnosis, but the first major event we did was the Hastings to Ashford bike ride, with my family members cycling alongside many Kent police officers. My dad organised this and I believe the total money raised was in excess of £4,000, every penny going to Children With Leukaemia. I wasn't fit to take part in the event, although I willingly spoke to local newspapers about my story, and acted as a photographer during the course of the event.
Family Fund, an amazing charity, kindly donated me a laptop, which was vital for my schoolwork, socialising with friends, and it is this very laptop that I am using now to write my blog for you. So I'm guessing we should be thanking Family Fund for my blog.
Clic Sargeant are another charity which has given my family plenty of reasons to be grateful. They provided my family with a much needed week-long holiday in Chichester. It was during a stressful time in my treatment, so the whole family was grateful to get away. During the course of the week, my family and I participated in tennis, archery, target shooting, football. So not only was this a welcomed week to relax, but a chance for us to interact with each other, which is often difficult when half of us are at home, and the rest are at hospital.
My family has had holidays abroad since my diagnosis too... and they have been spectacular! The first of my overseas travels was a holiday to a brilliant Greek Island called Kos. I went with my dad's side of the family, and we had a blast! It was a small island, but it had so much to offer. The history, food, views, temperature, it was all brilliant. Even the wasps over there were cool! THEY DIDN'T STING! (I have a bad record with wasps, I'm normally a walking target for them).
The next overseas visit was a trip to Mallorca with my mum's side of the family, funded by a group of Ashford-based firefighters called "Blue Watch". They did a long-distance run, whilst carrying a large wooden fire engine. Again, this proved to be a huge boost for my family, again, with plenty of stuff for us to do, and plenty of sunshine to go along with it.
A group of the most generous, kind hearted people you'll ever know: Alternative Hair. They are a group of talented hairdressers, who perform shows across the world to raise money for Leukaemia Research. The money they raised funded a trip to Disneyland Paris for my family, alongside many other families in a similar situation to mine. We had so much fun, in an environment where all the stress and worries just seem to disappear. When they say things like this gives you a magical feeling, they really aren't joking. During the trip to Paris, my brother and I took part in an interview for the next Alternative Hair fundraising appeal. It was the least we could do. They had put so much time and effort for our benefit, so a short interview seemed like little bother to us.
After talking about the travel side to Leukaemia, I think it's time I spoke about the next charity event. There was a Leukaemia Research Bikeathon being held at Lydden Race Circuit in Kent. Leukaemia Research asked if I was fit and willing to cycle a lap of the track, and to use the story in their newsletter. They said it would be brilliant if a Leukaemia sufferer was to take part, but that there was no pressure for me to do so. Then they mentioned that there would be a special guest at the event, Olympic Gold Medal winning cyclist Jamie Staff (winner of the team sprint, the team that set a new world record!) I jumped at the idea! He was such a great guy, he cycled round the track with me and my brother, telling us about the Olympics and just having a chat with us. I was so excited about the whole thing, I didn't complete 1 lap, but 4! It felt surreal, I was having a joke and a chat with an elite athlete, the sort of people I idolize. In the newsletter article HE DESCRIBED ME!! as an inspiration... I was in shock, for me it was the other way round!
Since hearing the news of my relapse, Manchester United decided to be absolutely brilliant once again. Honestly, I know that United are forever my team, and I'm not a glory hunter, they are just a brilliant club. They gave my dad, brother and I tickets to go to watch the Champions League clash between United and German titans Bayern Munich. You couldn't have picked a better match this season. We had stunning seats yet again, being sat in a similar place to where we was back in 2007. Manchester United won the match 3-2 (so I have never been to Old Trafford and watched us lose. I must be a lucky charm!). Unfortunately it wasn't enough for us to stay in the competition, but it didn't matter too much to me. The quality of the play was jaw-dropping, as you would expect in a match like that. Manchester United had given me a much needed lift after the deflating news of relapse. On the journey home I could barely talk, I had been singing and chanting so much during the match that I had strained my throat, but I felt so happy that I felt like I could tackle anything, never mind Leukaemia.
So, there you go, life's not all bad. Yes it is hard work, and very stressful at times, but the kindness and support of friends, family, and people across the world that have probably never met me, but still care... it makes things worth it.
I'll probably be continuing my story in my next post, so stay tuned.
Andrew
:)
I am no longer taking the Morphine for my joint pains, and I am no longer using a wheelchair to get me from A to B. The joint pains seem to have gone (for now, hopefully forever... we can dream). I'm still the sexiest skinhead around, and I'm starting to get used to having a breeze against my scalp! I'm starting steroids today, so if I turn green and start smashing things to pieces... you know why, okay?
Sorry dad, my skinhead's better :)
Anyway, I shall explain the title to this post.
Since being diagnosed back in 2007, I have had some really nice things happen to me, some have been from the kindness of people's hearts. This blog post will be to tell you some of the great times I have had because of Leukaemia.
First of all, in September 2007, Manchester United kindly donated tickets for me, my brother and dad to go to watch the MASSIVE match at Old Trafford, where they gave host to Chelsea in a title deciding 90 minutes. We had brilliant seats, and to top the lot... Man U thrashed Chelsea in an impressive 2-0 win. We saw quality players like Ronaldo, Rooney, Vidic, Ferdinand, as well as the talented Chelsea team.
My family have been keen to raise money for charity since my diagnosis, but the first major event we did was the Hastings to Ashford bike ride, with my family members cycling alongside many Kent police officers. My dad organised this and I believe the total money raised was in excess of £4,000, every penny going to Children With Leukaemia. I wasn't fit to take part in the event, although I willingly spoke to local newspapers about my story, and acted as a photographer during the course of the event.
Family Fund, an amazing charity, kindly donated me a laptop, which was vital for my schoolwork, socialising with friends, and it is this very laptop that I am using now to write my blog for you. So I'm guessing we should be thanking Family Fund for my blog.
Clic Sargeant are another charity which has given my family plenty of reasons to be grateful. They provided my family with a much needed week-long holiday in Chichester. It was during a stressful time in my treatment, so the whole family was grateful to get away. During the course of the week, my family and I participated in tennis, archery, target shooting, football. So not only was this a welcomed week to relax, but a chance for us to interact with each other, which is often difficult when half of us are at home, and the rest are at hospital.
My family has had holidays abroad since my diagnosis too... and they have been spectacular! The first of my overseas travels was a holiday to a brilliant Greek Island called Kos. I went with my dad's side of the family, and we had a blast! It was a small island, but it had so much to offer. The history, food, views, temperature, it was all brilliant. Even the wasps over there were cool! THEY DIDN'T STING! (I have a bad record with wasps, I'm normally a walking target for them).
The next overseas visit was a trip to Mallorca with my mum's side of the family, funded by a group of Ashford-based firefighters called "Blue Watch". They did a long-distance run, whilst carrying a large wooden fire engine. Again, this proved to be a huge boost for my family, again, with plenty of stuff for us to do, and plenty of sunshine to go along with it.
A group of the most generous, kind hearted people you'll ever know: Alternative Hair. They are a group of talented hairdressers, who perform shows across the world to raise money for Leukaemia Research. The money they raised funded a trip to Disneyland Paris for my family, alongside many other families in a similar situation to mine. We had so much fun, in an environment where all the stress and worries just seem to disappear. When they say things like this gives you a magical feeling, they really aren't joking. During the trip to Paris, my brother and I took part in an interview for the next Alternative Hair fundraising appeal. It was the least we could do. They had put so much time and effort for our benefit, so a short interview seemed like little bother to us.
After talking about the travel side to Leukaemia, I think it's time I spoke about the next charity event. There was a Leukaemia Research Bikeathon being held at Lydden Race Circuit in Kent. Leukaemia Research asked if I was fit and willing to cycle a lap of the track, and to use the story in their newsletter. They said it would be brilliant if a Leukaemia sufferer was to take part, but that there was no pressure for me to do so. Then they mentioned that there would be a special guest at the event, Olympic Gold Medal winning cyclist Jamie Staff (winner of the team sprint, the team that set a new world record!) I jumped at the idea! He was such a great guy, he cycled round the track with me and my brother, telling us about the Olympics and just having a chat with us. I was so excited about the whole thing, I didn't complete 1 lap, but 4! It felt surreal, I was having a joke and a chat with an elite athlete, the sort of people I idolize. In the newsletter article HE DESCRIBED ME!! as an inspiration... I was in shock, for me it was the other way round!
Since hearing the news of my relapse, Manchester United decided to be absolutely brilliant once again. Honestly, I know that United are forever my team, and I'm not a glory hunter, they are just a brilliant club. They gave my dad, brother and I tickets to go to watch the Champions League clash between United and German titans Bayern Munich. You couldn't have picked a better match this season. We had stunning seats yet again, being sat in a similar place to where we was back in 2007. Manchester United won the match 3-2 (so I have never been to Old Trafford and watched us lose. I must be a lucky charm!). Unfortunately it wasn't enough for us to stay in the competition, but it didn't matter too much to me. The quality of the play was jaw-dropping, as you would expect in a match like that. Manchester United had given me a much needed lift after the deflating news of relapse. On the journey home I could barely talk, I had been singing and chanting so much during the match that I had strained my throat, but I felt so happy that I felt like I could tackle anything, never mind Leukaemia.
So, there you go, life's not all bad. Yes it is hard work, and very stressful at times, but the kindness and support of friends, family, and people across the world that have probably never met me, but still care... it makes things worth it.
I'll probably be continuing my story in my next post, so stay tuned.
Andrew
:)
Monday 12 April 2010
My Leukaemia Story - Part 5
Hi guys! I'm back!
Sorry that I havent been able to continue my story sooner, but I have been rather poorly over the last few days. I have lost my hair (something to be expected with the chemo I am taking), and I have been having to use a wheelchair to go anywhere, as I have been sufferering with severe joint pain. I have been taking Morphine for it, so I'm away with the fairies most of the time. The joint pain is nothing to worry about though, its a common side-affect to a drug I am taking. Also, today I have noticed a massive improvement, so hopefully it will have completely gone within the next few days... but I'll keep you posted.
Before I say anything else I want to thank everybody who has been reading this blog. It means SO MUCH to me that people take an interest in what has happened over these last few years. I am extremely thankful to everybody who has been suggesting this site to their friends and families. Hopefully the rest of my story will be just as interesting as what you have read so far and will give you even more reason to spread the word.
Anyway, the moment you've probably been waiting for, its time to go back to this story of mine.
When Maintenance Therapy started, I had extremely high expectations. I had been told that it was much lower doses, so I would be feeling much better. I expected to feel well enough to do normal things, like school, playing football, seeing friends... normal stuff.
However, throughout the first few months I didn't really notice any difference. I think I was expecting too much too soon. I had been on high dose treatment for at least a year, so it was bound to take some time for my body to recover from the effects of it. But I became increasingly frustrated, because I wanted to feel normal, but I didnt. I still felt tired, sometimes sick, and my constant low blood counts served as a reminder that my body was still in a pretty weak state.
Things did get better, I started to get back to school, to see my friends. I was starting to be able to enjoy myself. I had started to achieve better in school again, I couldn't believe it. I remember handing in my first piece of english coursework, thinking that a C would be a great achievement for me. When the teacher handed me my work, and I opened the page not to a C, but to an A*... lets just say it was a miracle I didn't fly off the back of my chair! All the effort I had put in whilst I was feeling really ill, it was all worth it.
I started to go to football training, which was brilliant. I didn't go to play football with any intentions of getting in a team, I just love football, so I wanted to play. Some of my best friends went to training too, so it also gave me a chance to see my pals. I eventually managed to persuade my brother to go along too, so that was cool. When he did go, he enjoyed it... he was just affraid of getting shown up by my mega skills ;) .
I was having routine lumbar punctures every 3 months at GOSH (which was much better than once a week, like on the intensive treatment). Things were going well, I had been set a date for my treatment to finish. The end of it all. The moment I had been looking forward to for so long.
On the 5th March, it was time for another routine lumbar puncture, with my sights set on the finish line, it was one less hospital visit to worry about. When I had my procedure, I even told a joke as I was being knocked out. I woke up afterwards feeling well, I was relieved that it was out of the way. Later that day, my parents were called away to a room, by a doctor. I didnt know about it at the time, as I was having a drug which meant I had to be isolated for half an hour.
After my isolation, I was called into the room to join my parents with the doctor. I wasn't prepared for what I was about to be told. The look on my doctors face said it all. My leukaemia had relapsed (returned). They had found cells in my spinal fluid.
I had let my guard down completely, I was thinking I was near to the finish. I felt so well. I was playing football and doing well at school. I walked through the hospital feeling numb, even the nurses looked emotional. One of them came over and gave me the biggest hug ever. It was as though the 3 years I had spent fighting the disease had all been for nothing.
The next section to my story will be about how I came to terms with this news, and what it meant to my treatment plans.
Andrew
:)
Sorry that I havent been able to continue my story sooner, but I have been rather poorly over the last few days. I have lost my hair (something to be expected with the chemo I am taking), and I have been having to use a wheelchair to go anywhere, as I have been sufferering with severe joint pain. I have been taking Morphine for it, so I'm away with the fairies most of the time. The joint pain is nothing to worry about though, its a common side-affect to a drug I am taking. Also, today I have noticed a massive improvement, so hopefully it will have completely gone within the next few days... but I'll keep you posted.
Before I say anything else I want to thank everybody who has been reading this blog. It means SO MUCH to me that people take an interest in what has happened over these last few years. I am extremely thankful to everybody who has been suggesting this site to their friends and families. Hopefully the rest of my story will be just as interesting as what you have read so far and will give you even more reason to spread the word.
Anyway, the moment you've probably been waiting for, its time to go back to this story of mine.
When Maintenance Therapy started, I had extremely high expectations. I had been told that it was much lower doses, so I would be feeling much better. I expected to feel well enough to do normal things, like school, playing football, seeing friends... normal stuff.
However, throughout the first few months I didn't really notice any difference. I think I was expecting too much too soon. I had been on high dose treatment for at least a year, so it was bound to take some time for my body to recover from the effects of it. But I became increasingly frustrated, because I wanted to feel normal, but I didnt. I still felt tired, sometimes sick, and my constant low blood counts served as a reminder that my body was still in a pretty weak state.
Things did get better, I started to get back to school, to see my friends. I was starting to be able to enjoy myself. I had started to achieve better in school again, I couldn't believe it. I remember handing in my first piece of english coursework, thinking that a C would be a great achievement for me. When the teacher handed me my work, and I opened the page not to a C, but to an A*... lets just say it was a miracle I didn't fly off the back of my chair! All the effort I had put in whilst I was feeling really ill, it was all worth it.
I started to go to football training, which was brilliant. I didn't go to play football with any intentions of getting in a team, I just love football, so I wanted to play. Some of my best friends went to training too, so it also gave me a chance to see my pals. I eventually managed to persuade my brother to go along too, so that was cool. When he did go, he enjoyed it... he was just affraid of getting shown up by my mega skills ;) .
I was having routine lumbar punctures every 3 months at GOSH (which was much better than once a week, like on the intensive treatment). Things were going well, I had been set a date for my treatment to finish. The end of it all. The moment I had been looking forward to for so long.
On the 5th March, it was time for another routine lumbar puncture, with my sights set on the finish line, it was one less hospital visit to worry about. When I had my procedure, I even told a joke as I was being knocked out. I woke up afterwards feeling well, I was relieved that it was out of the way. Later that day, my parents were called away to a room, by a doctor. I didnt know about it at the time, as I was having a drug which meant I had to be isolated for half an hour.
After my isolation, I was called into the room to join my parents with the doctor. I wasn't prepared for what I was about to be told. The look on my doctors face said it all. My leukaemia had relapsed (returned). They had found cells in my spinal fluid.
I had let my guard down completely, I was thinking I was near to the finish. I felt so well. I was playing football and doing well at school. I walked through the hospital feeling numb, even the nurses looked emotional. One of them came over and gave me the biggest hug ever. It was as though the 3 years I had spent fighting the disease had all been for nothing.
The next section to my story will be about how I came to terms with this news, and what it meant to my treatment plans.
Andrew
:)
Saturday 3 April 2010
My Leukaemia Story - Part 4
It is 5th of November 2007, firework night. I had gone into Great Ormond Street Hospital to start a trial therapy called "Protocol M". From my room in Lion Ward I could easily see the fireworks across London; what a sight.
A German doctor came into my room that evening to explain the course of my treatment. It was called "Protocol M" because it contained an extremely high dose of a drug called Methotrexate, hence the M. She said it was proving to be a huge success in Germany and in America, so they were beginning trials across the UK.
The next morning they began setting up the machine that would be infusing the drugs until they finally brought into the room a tube filled with yellow liquid. They put a black cover over the tube, explaining that the drug itself was light-sensitive. I was hooked up to the machine and the process began.
Within a minute of the treatment starting, I said "I have a bad feeling about this, it just doesn't feel right." I continued to feel slightly queezy, so I decided to shut my eyes and have a sleep.
I personally dont know what happened whilst I was asleep. But the exact detail is that my kidneys were shutting themselves down. I had suffered a massive alergic reaction to the Methotrexate (a very rare reaction), and things were looking bad.
I don't remember much of the next night and day, only waking up to vomit. I vaguely remember being rushed to have a kidney and liver scan to check the extent of the damage. I can clearly picture "Finding Nemo" being played on a DVD player above my bed. I was singing to myself "Just keep swimming"... quite appropriate, don't you think?
The heroic doctors on Lion Ward had a choice to make: either surgically fit a machine to do my kidneys' work for me, or ship in an antidote from overseas. They chose the antidote.
This antidote would save my life, undoing the effects of the lethal substance pulsing round my body. It sounds perfect, but there is a sting to the tale. This miracle antidote would have to be shipped from across Europe, and would cost no less than £60,000.
When the life saving syringe showed up to the hospital, it wasn't a moment too soon. Gemma, a nurse came into my room at about 2:00am... no pressure, just a £60,000 drug, and a patient in a pretty bad way to give it to.
She gave the drug, and within a matter of hours my body started to show signs of recovery. Gemma, and the doctors at Lion Ward, had saved my life. No other way of putting it.
After 2 weeks of letting my kidneys recover, I was sent home to start a very weak cycle of treatment. This was to allow my battered body to recover.
It was then back to the intensive stuff again, but no more Methotrexate, no chance mate... not after that!
After about 9 months of the intensive treatment I started "Maintenance Therapy". This was described as being a lot less intense, to let me get my life back.
That is the next section. Maintenance. I will describe what it was like, and how I managed to come to terms with getting more of my life back.
Still standing after "Protocol M"... and don't you forget it!
Andrew
:)
JUST KEEP SWIMMING!
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
Glossary
Infusing - The process of pumping a drug/ product straight into a vein.
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
EDIT
Here is a photo of me with Gemma, the nurse that gave me my antidote. (Taken in March 2010, I'm sure neither of us will forget what happened back in 2007)
A German doctor came into my room that evening to explain the course of my treatment. It was called "Protocol M" because it contained an extremely high dose of a drug called Methotrexate, hence the M. She said it was proving to be a huge success in Germany and in America, so they were beginning trials across the UK.
The next morning they began setting up the machine that would be infusing the drugs until they finally brought into the room a tube filled with yellow liquid. They put a black cover over the tube, explaining that the drug itself was light-sensitive. I was hooked up to the machine and the process began.
Within a minute of the treatment starting, I said "I have a bad feeling about this, it just doesn't feel right." I continued to feel slightly queezy, so I decided to shut my eyes and have a sleep.
I personally dont know what happened whilst I was asleep. But the exact detail is that my kidneys were shutting themselves down. I had suffered a massive alergic reaction to the Methotrexate (a very rare reaction), and things were looking bad.
I don't remember much of the next night and day, only waking up to vomit. I vaguely remember being rushed to have a kidney and liver scan to check the extent of the damage. I can clearly picture "Finding Nemo" being played on a DVD player above my bed. I was singing to myself "Just keep swimming"... quite appropriate, don't you think?
The heroic doctors on Lion Ward had a choice to make: either surgically fit a machine to do my kidneys' work for me, or ship in an antidote from overseas. They chose the antidote.
This antidote would save my life, undoing the effects of the lethal substance pulsing round my body. It sounds perfect, but there is a sting to the tale. This miracle antidote would have to be shipped from across Europe, and would cost no less than £60,000.
When the life saving syringe showed up to the hospital, it wasn't a moment too soon. Gemma, a nurse came into my room at about 2:00am... no pressure, just a £60,000 drug, and a patient in a pretty bad way to give it to.
She gave the drug, and within a matter of hours my body started to show signs of recovery. Gemma, and the doctors at Lion Ward, had saved my life. No other way of putting it.
After 2 weeks of letting my kidneys recover, I was sent home to start a very weak cycle of treatment. This was to allow my battered body to recover.
It was then back to the intensive stuff again, but no more Methotrexate, no chance mate... not after that!
After about 9 months of the intensive treatment I started "Maintenance Therapy". This was described as being a lot less intense, to let me get my life back.
That is the next section. Maintenance. I will describe what it was like, and how I managed to come to terms with getting more of my life back.
Still standing after "Protocol M"... and don't you forget it!
Andrew
:)
JUST KEEP SWIMMING!
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
Glossary
Infusing - The process of pumping a drug/ product straight into a vein.
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
EDIT
Here is a photo of me with Gemma, the nurse that gave me my antidote. (Taken in March 2010, I'm sure neither of us will forget what happened back in 2007)
My Leukaemia Story - Part 3
Still in Great Ormond Street Hospital, I started treatment. High dose steroids, taken alongside some even higher dose chemotherapy. Some of this high dose chemo was so powerful it even made my pee go bright red!! The steroids gave me a HUGE appetite, honestly, I was hungry all the time, nothing could fill me up. As fat fighters on 'Little Britain' would say, "I luuuuurve de cake!!"
After a few weeks of being in hospital, having doctors explain my treatment plan, and nurses make sure my chest was healing up ok (after the operation going so well, it didn't take long to heal), they said I could go home.
I was sent home with a large bag of tablets and a book describing the treatment plan, and for my blood results to be recorded in. They call it my "shared-care book" as it is used by Great Ormond Street Hospital as well as the community nurses and doctors in Ashford.
I was told to go back to GOSH once-a-week for Lumbar Punctures and Bone Marrow Tests, and so that the doctors could review my progress. Dr Webb said I was to be treated on Regimen B (which is like the medium strength chemo) for a few weeks, and that the doses could be lowered or raised, depending on how I responded to chemo.
I had gone home. What a feeling. Yes, I had been delivered some pretty hefty news, but I couldn't be more sure that I was in safe hands. I met my community nurse back in Ashford, Suzie Jamieson, a really lovely lady, and I'm sure the people that know her will agree. She would be coming to my house weekly to take some blood for testing, check that my Hickman line was working ok, and to sometimes give chemo.
After a few weeks of this cycle the doctors told me my dosages would be raised, as I had not yet hit remission. I was now on Regimen C... the hard stuff.
By October I had been for more visits to GOSH, and the news was starting to come back good. I was starting to realise all of the sickness was worth it when I heard the news that I had hit remission. That means that the cancer cells were no longer present in my bone marrow. The Orange-sized mass found in my chest had completely gone!
The doctors told me that the race was not finished yet though, as they wanted me to start another treatment cycle. One that they had been testing, as it was successful in America and Germany. This was called "Protocol M". It consisted of an extremely high dose of a particular drug, and was said to be very effective. I was told that I was to stay at GOSH whilst the treatment was running so the doctors could keep an eye on me. I signed up to the trial.
The doctors told me that "Protocol M" was to be starting on firework night on Lion Ward.
The doctors told me that "Protocol M" was to be starting on firework night on Lion Ward.
Protocol M is the next part to my story, but i'll give you a hint as to say there are plenty of fireworks.
Andrew
:)
P.S. I had the good ol' support of friends, family... and my lovely Morris cat
- - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - - -
Glossary
GOSH - Great Ormond Street Hospital
Lumbar Puncture - Where doctors surgically remove some of the fluid around your spine and brain, and inject chemo into the same area.
Regimen - A treatment plan. e.g. Regimen C is the highest dose treatment plan.
Community nurse - A local-based nurse that performs home visits for various purposes.
Remission - A state of which all cancer cells have been destroyed.
Friday 2 April 2010
My Leukaemia Story - Part 2
We pick up my story at Great Ormond Street Hospital. I had just arrived in the back of an ambulance and was wheeled to Lion Ward. I remember being amazed by the the fact it was on the 6th floor.
A Hickman line is a tube that goes near my heart, with two pipes hanging out of my chest. It is designed so that I can have chemo and blood transfusions without needing constant injections.
When I arrived at the ward I was instantly greeted by my nurse, Helena, who showed me to my very own room (complete with en-suite bathroom and everything). She instantly reassured me that I was in safe hands, and couldnt do enough to help. After feeling tense and nervous, the conversation with her left me feeling very calm, I could tell that I was in the best place possible.
The next day, a group of doctors came into my room and began to explain the situation. They said that it was either a Lymphoma in my chest, or Acute Lymphoblastic Leukaemia. Apparently the mass found in my chest was around the size of an orange. A Hickman Line was to be surgically fitted.
A Hickman line is a tube that goes near my heart, with two pipes hanging out of my chest. It is designed so that I can have chemo and blood transfusions without needing constant injections.While the doctors would be fitting my Line, they would also do a Bone Marrow test to determine whether it was Lymphoma or Leukaemia.
The next day I was having surgery. I have been told that the operation took about 4 hours, maybe longer.
When I woke up, my head was in agony... never had a headache like it. The nurse came into the recovery bay and dosed me up big style, using 2 different pain killers at least. Once the Morphine and Codeine had kicked in I felt well again, so they took me back to my room.
I remember sitting in my room that night, in darkness because of my headache, eating a McDonald's cheeseburger with my family. I think it is strange that I had just had surgery near MY HEART, yet I felt no discomfort AT ALL around my chest...good ol' pain-killers.
The next day the doctors came round with my diagnosis. Dr David Webb said to me that the Bone Marrow had shown up 98% Leukaemic cells...wow. He said that it was Acute Lymphoblastic Leukaemia (ALL), and that it is relatively common and pretty straight-forward to treat. He said that he would be my consultant, and the treatment typically lasts 3 years (a year longer than if I was a girl).
The chemotherapy would be intensive, and was planned to start straight away.
Tune in next time to find out what happens next.
Andrew
:)
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Glossary
Lymphoma - A type of cancerous tumour that forms on certain glands around your body. e.g. chest and neck.
Acute Lymphoblastic Leukaemia - A cancer of the blood-making cells in your bone marrow.
Chemo (Chemotherapy) - The use chemicals to destroy cancer cells.
Blood Transfusion - The process of putting donated blood into somebody else to make them feel better when their blood counts are low.
Bone Marrow Test (Aspirate) - When a small amount of Bone Marrow (found in most bones) is removed and tested.
CT Scan - A three-dimensional x-ray.
Wednesday 31 March 2010
My Leukaemia Story - Part 1
My story begins back in July of 2007. I was 12 years old, fit and healthy just like any other child. I was doing exams at school when I started getting headaches, and my vision became blurred. When I looked in the mirror, I noticed that the pupil in my left eye had enlarged to about three times its normal size. My parents were concerned, so instantly took me to see the on-call doctor at my local hospital.
My eyes were tested and worked fine, the doctor also said there were no clues to show my brain had any complications. He said he wanted me to stay on a ward for a few days so that they could find out why my eye had reacted in such a way.
Whilst I was staying on the ward, my eye was back to normal, no problems at all. However, I couldn't stop coughing, having multiple coughing fits and getting very wheezy. The doctors knew something was wrong with my chest, so sent me for a fairly routine chest X-ray.
The results came back, however I never saw them for myself, my parents saw the results and insisted that I didn't see. I was told that I needed to have a CT scan of my torso, as there was a "widening" of my wind-pipe in my lungs.
Unsure about quite what that meant, I went for the CT scan and eagerly awaited the results.
When the time came, my parents were called away into a seperate room by a doctor. I was again unsure about what this meant. A nurse came into the ward and showed me into the room where my parents were sitting with a doctor. I could see their emotional faces, and instantly recognised that something was wrong.
I was told to sit down and then the doctor told me. The CT scan had revealed a mass (tumour) in my chest. They believed it to be a Lymphoma, and said that I was to be rushed to Great Ormond Street Hospital in an ambulance urgently.
I cant remember any more of what happened at that hospital on that day, only that I went completely numb, physically and emotionally. That was the news that shook my world, turned it upside down.
It was the fastest trip to London I'd ever had... would give the Hitachi train a run for its money any day. We arrived at Great Ormond Street promptly, but what happened there is the next chapter to my story. I'll save that for next time.
I hope you enjoyed what you have read so far.
But the best is yet to come.
Andrew
:)
My eyes were tested and worked fine, the doctor also said there were no clues to show my brain had any complications. He said he wanted me to stay on a ward for a few days so that they could find out why my eye had reacted in such a way.
Whilst I was staying on the ward, my eye was back to normal, no problems at all. However, I couldn't stop coughing, having multiple coughing fits and getting very wheezy. The doctors knew something was wrong with my chest, so sent me for a fairly routine chest X-ray.
The results came back, however I never saw them for myself, my parents saw the results and insisted that I didn't see. I was told that I needed to have a CT scan of my torso, as there was a "widening" of my wind-pipe in my lungs.
Unsure about quite what that meant, I went for the CT scan and eagerly awaited the results.
When the time came, my parents were called away into a seperate room by a doctor. I was again unsure about what this meant. A nurse came into the ward and showed me into the room where my parents were sitting with a doctor. I could see their emotional faces, and instantly recognised that something was wrong.
I was told to sit down and then the doctor told me. The CT scan had revealed a mass (tumour) in my chest. They believed it to be a Lymphoma, and said that I was to be rushed to Great Ormond Street Hospital in an ambulance urgently.
I cant remember any more of what happened at that hospital on that day, only that I went completely numb, physically and emotionally. That was the news that shook my world, turned it upside down.
It was the fastest trip to London I'd ever had... would give the Hitachi train a run for its money any day. We arrived at Great Ormond Street promptly, but what happened there is the next chapter to my story. I'll save that for next time.
I hope you enjoyed what you have read so far.
But the best is yet to come.
Andrew
:)
Tuesday 30 March 2010
Hi, I'm Andrew "Andyman3001" Wicks, and yes, that sexy young man in the panda hat is me.
On 12th July 2007 I was diagnosed with Acute Lymphoblastic Leukaemia, and I have been recieving treatment for it ever since.
On 12th July 2007 I was diagnosed with Acute Lymphoblastic Leukaemia, and I have been recieving treatment for it ever since.
Recently, I started intensive chemotherapy again, as on the 5th March 2010, I was delivered the unfortunate news that the Leukaemia had relapsed.
I am lucky to say that I am surrounded by not only the best medical support possible (orchestrated by Great Ormond Street Hospital), but the most supportive set of friends and family you could wish for.
It is because of those friends and family I am writing this blog. Now, at the age of 15, I decided to use this blog to write a detailed story of the events that occurred from 2007 onwards, and also to keep everybody updated with how things are going with me at the moment.
This site is welcome for anybody to see, as I feel the more people can know about these cancers, the better (in other words, feel free to recommend this page to your mates...*hint* *hint*).
I hope you'll enjoy reading this blog, as I'm sure I'll enjoy writing it.
I hope you'll enjoy reading this blog, as I'm sure I'll enjoy writing it.
That's all for now folks
Andrew
:)
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