While school is now over for another term and it's time for a bit of a rest, I'm overwhelmed by a strong, crushing feeling. Even though I have persevered through the last couple of months of school, all I can think about is that I have another 2 years, minimum, before my treatment ends. It's all very well, breaking chemotherapy up into blocks and batches and being able to tick off the stages as I go, but the cold hard facts are that my treatment ends on the 24th of December, 2015. Sometimes that seems almost insurmountable.
I've had Acute Lymphoblastic Leukaemia for about 15 months now and the finish line is no where in sight! By the time my treatment ends, if all goes to plan, I'll be at University which feels like it's so many years away and relies on a good deal of fortune falling my way. I know it is incredibly important to try and keep positive and I've waxed lyrical about setting yourself daily targets, but at this time in the year, it's tough. Only today I was told about how fantastic it is that Leukaemia now has an 80% chance of being cured through the first cycle of treatment, but if that treatment is going to take 3 years, sometimes I wonder how fantastic that really is?! I was told something back in my Birmingham days that will stay with me forever and ever. We look back on surgery that occurred 100 years ago, even 50 years ago, not quite believing how and why we used such primitive tools to roughly mould and manipulate our bodies to "fix" them. Well, in 50 years time, I hope people look back at our "barbaric" methods of curing cancer which I can be break down into: slashing out tumours with scalpels, destroying our own healthy flesh and blood with chemotherapy and finally burning our physically weak bodies with radiation to "cure" ourselves. I hope in 50 years people look back and think, "Thank God it's not like that now and we realised how to beat cancer without losing ourselves to the treatment first."
While this post is particularly downbeat and I do apologise for that as it's so close to Christmas, I am not despondent. Recent success at school always manages to keep my chin up and my nose down to the grindstone!
I'm not sure how much I'll post throughout the holiday but I'll definitely be back at the start of the New Year. I'll alert via twitter at @Will_smith09
Happy Christmas!!
Thursday 19 December 2013
Monday 16 December 2013
Quick Update
Apologies to all, but I'm feeling really rough today from chemo followed up by a batch of steroids this morning. My sister commented that I look like a ghost! On the plus side my blood counts are going in the right direction so my chin is firmly up. Early night for me I think though!
Wednesday 11 December 2013
Pencil it in
As is seemingly the case with many of my posts, this one is a huge thank you to the Teenage Cancer Trust. I was asked last week if I would like to be entered into a prize draw to win the chance to watch a celebrity football match organised by Nick Grimshaw and BBC Radio 1. Incredibly, I won the tickets and so on Monday I took a train up to London with a friend and stayed the night in a hotel near Wembley, ready for an early rise.
We had to be at the stadium at 7:45am, but thankfully were greeted with bacon sandwiches as well as an assortment of continental breakfasts. While food is very important to me, it was still way too early to be arriving anywhere! The match was an exclusive event, with around 50 people in the stands, all of whom were guests of either Radio 1, Olly Murs or the Teenage Cancer Trust. After a dramatic encounter, which required a penalty shoot out to decide the fate of the game, the celebrities took pictures with us and chatted for about half an hour. I recognised and took photographs with many famous faces including, Andrew "Freddie" Flintoff, Rizzle Kicks, John Bishop, Olly Murs, Made In Chelsea's Jamie Laing and of course Nick Grimshaw himself!
The whole trip, from the hectic train journeys to the early Tuesday morning get up, was fantastic. I need to say a huge thank you once more to the Teenage Cancer Trust who offer these days of respite amid long treatments to teenagers all over the country. They are a real help and provide opportunities of independence as well as the obvious enjoyment that events such as this give.
However, none of this might even have been possible. I was scheduled to receive a Lumbar Puncture on the Tuesday of the football match and so at the time I was crushingly disappointed that I couldn't even apply for the tickets. However, my LP was rescheduled due to circumstances out of my control and in doing so, meant that I was available to visit Wembley and have an incredible time. I'm trying to show how no plans can ever be set in stone due to various treatments and the ever changing nature of them. However, it cannot be overestimated just how much the respites organised by the Teenage Cancer Trust are valued and how important they are in providing pick me ups especially when it feels that treatment is beginning to get on top of you.
We had to be at the stadium at 7:45am, but thankfully were greeted with bacon sandwiches as well as an assortment of continental breakfasts. While food is very important to me, it was still way too early to be arriving anywhere! The match was an exclusive event, with around 50 people in the stands, all of whom were guests of either Radio 1, Olly Murs or the Teenage Cancer Trust. After a dramatic encounter, which required a penalty shoot out to decide the fate of the game, the celebrities took pictures with us and chatted for about half an hour. I recognised and took photographs with many famous faces including, Andrew "Freddie" Flintoff, Rizzle Kicks, John Bishop, Olly Murs, Made In Chelsea's Jamie Laing and of course Nick Grimshaw himself!
The whole trip, from the hectic train journeys to the early Tuesday morning get up, was fantastic. I need to say a huge thank you once more to the Teenage Cancer Trust who offer these days of respite amid long treatments to teenagers all over the country. They are a real help and provide opportunities of independence as well as the obvious enjoyment that events such as this give.
However, none of this might even have been possible. I was scheduled to receive a Lumbar Puncture on the Tuesday of the football match and so at the time I was crushingly disappointed that I couldn't even apply for the tickets. However, my LP was rescheduled due to circumstances out of my control and in doing so, meant that I was available to visit Wembley and have an incredible time. I'm trying to show how no plans can ever be set in stone due to various treatments and the ever changing nature of them. However, it cannot be overestimated just how much the respites organised by the Teenage Cancer Trust are valued and how important they are in providing pick me ups especially when it feels that treatment is beginning to get on top of you.
Thursday 5 December 2013
Making the Right Choice
This time last year I had a pretty difficult decision to make, I could knuckle down with my studies and try to get the grades required to participate in some of this year's Year 13 classes, or the other option would be to retake the whole of Year 12. I knew that from February, I'd have another 2 months outside of school due to my second batch of intensive treatment at the very least. At the time I was only attending school purely for the social element. After spending so long in hospital away from everyone, I wanted to catch up on everything that I had missed out on and immerse myself in the everyday dramas and dilemmas. My school was incredibly tolerant, but there came a point when I decided that I must decide on what I wanted to achieve by the end of the year, instead of simply relaxing each day among friends.
One side of me wanted to spend each day enjoying myself, doing the things I loved, but I could recognise that I was effectively keeping myself further and further behind everyone else. Therefore, I decided, with my parents and teachers, to structure a plan of what I should be aiming to achieve by the end of the year. I could see that the ramifications of me not working hard would be that all my friends would be in their final year of school, while I was left back in my first year of Sixth Form. This would have been very difficult for me to deal with, so my aim was to attain the right grades in at least one subject, to be able to stay with my friends in one class for this academic year.
Over the course of the year I massively struggled to stay motivated. Almost daily I would consider giving up and I would question the whole point of carrying on if I wasn't enjoying it. However, I persevered. My mum used to tell my sister and I, that the key to almost everything is "Perseverance and Persistence". It would be a complete lie to say that I just thought of those words and gritted my teeth. I just don't work like that. I needed a lot of pushing and shoving by teachers, friends and family alike to get me over the finish line with my English work, but by God am I grateful for it now!
I managed to obtain the result that I needed for me to continue with English for this year and am now so relieved that I made that choice all those months ago. Sadly, I cannot say that nowadays I strive to do the absolute best in all pieces of work that I hand in and that sometimes I don't doubt myself and the need to work hard. There is still that question in my mind of what the point to it all really is, who knows where I will be in a years time. However, what I am sure of is that when I got my result for my English exam, it was the absolute highlight of my year.
One side of me wanted to spend each day enjoying myself, doing the things I loved, but I could recognise that I was effectively keeping myself further and further behind everyone else. Therefore, I decided, with my parents and teachers, to structure a plan of what I should be aiming to achieve by the end of the year. I could see that the ramifications of me not working hard would be that all my friends would be in their final year of school, while I was left back in my first year of Sixth Form. This would have been very difficult for me to deal with, so my aim was to attain the right grades in at least one subject, to be able to stay with my friends in one class for this academic year.
Over the course of the year I massively struggled to stay motivated. Almost daily I would consider giving up and I would question the whole point of carrying on if I wasn't enjoying it. However, I persevered. My mum used to tell my sister and I, that the key to almost everything is "Perseverance and Persistence". It would be a complete lie to say that I just thought of those words and gritted my teeth. I just don't work like that. I needed a lot of pushing and shoving by teachers, friends and family alike to get me over the finish line with my English work, but by God am I grateful for it now!
I managed to obtain the result that I needed for me to continue with English for this year and am now so relieved that I made that choice all those months ago. Sadly, I cannot say that nowadays I strive to do the absolute best in all pieces of work that I hand in and that sometimes I don't doubt myself and the need to work hard. There is still that question in my mind of what the point to it all really is, who knows where I will be in a years time. However, what I am sure of is that when I got my result for my English exam, it was the absolute highlight of my year.
Monday 2 December 2013
Planning Ahead
As I've alluded to in the post "Off to University", cancer ended up affecting almost every single presupposed decision I had made towards my future. I wasn't 100% certain about my plans after school, but I knew that I wanted to study Philosophy and Ethics, History and English Literature at A2 and then go onto University, probably without a gap year in between and then get a job in TV Broadcasting or writing in some form, at a newspaper or magazine maybe. I wanted to take a gap year in between University and finding a job, but I was mulling over the idea of interRailing, the summer after Year 13 with some friends. The point that I'm trying to convey is, that I had a plan. I had an idea of which direction my life was headed in and while cancer hasn't completely altered that, it has caused some pretty major set backs.
Cancer has meant that a lot of my plans have been put on hold such as interRailing at the end of this school year, or applying to University this year. However, it's not just the obvious things that make the future difficult to plan for. The psychological impact of having cancer makes applying to University's and employment a very daunting task. The CLIC sargent charity have recently released a report about how cancer affects young people's feelings towards their futures and I have attached the link to the bottom of the post if anyone is interested in reading in further detail. However, with statistics such as 74% of the people in the survey being worried about future employment and 75% stating that a lack of confidence is a significant barrier in finding a job, it is clear that the psychological problems created by cancer are very difficult to break down and overcome at this age. I would be lying if I said that I am not scared about employment in the future. What if my cancer stops me from getting the job I want? Or worse still, if it is the reason that I do get the job? I don't want my cancer to be the only thing that I am judged upon!
However, these are all long term consequences of having cancer. The short term ones are equally difficult to deal with. The threat that a common cold could significantly hold up my treatment, is forever looming over me and a constant consideration in all my actions. I have to be so careful not to drink too much and my diet is meant to consist of at least 9 portions of fruit and vegetable per day. I have to think about almost everything I do in relation to how it will affect my treatment and that means that while I can give the appearance of always being happy and well, it is ever present in my thoughts and actions. It never ever goes away and not for one moment can I get complete respite from it.
However, there are some things that I can do to help my future, three important guidelines that I can follow to make sure that I am as well prepared as I can be. They consist of: eating healthily, sleeping well and exercising! Simple to follow but ultimately they could shape how the rest of my treatment goes. At 17 though, it's important to be realistic with my aims so I'll definitely be taking baby steps, especially with 9 portions of fruit and veg per day!
The CLIC sargent report: http://www.clicsargent.org.uk/sites/files/clicsargent/13092a_No_young_person_with_cancer_left_out.pdf
Cancer has meant that a lot of my plans have been put on hold such as interRailing at the end of this school year, or applying to University this year. However, it's not just the obvious things that make the future difficult to plan for. The psychological impact of having cancer makes applying to University's and employment a very daunting task. The CLIC sargent charity have recently released a report about how cancer affects young people's feelings towards their futures and I have attached the link to the bottom of the post if anyone is interested in reading in further detail. However, with statistics such as 74% of the people in the survey being worried about future employment and 75% stating that a lack of confidence is a significant barrier in finding a job, it is clear that the psychological problems created by cancer are very difficult to break down and overcome at this age. I would be lying if I said that I am not scared about employment in the future. What if my cancer stops me from getting the job I want? Or worse still, if it is the reason that I do get the job? I don't want my cancer to be the only thing that I am judged upon!
However, these are all long term consequences of having cancer. The short term ones are equally difficult to deal with. The threat that a common cold could significantly hold up my treatment, is forever looming over me and a constant consideration in all my actions. I have to be so careful not to drink too much and my diet is meant to consist of at least 9 portions of fruit and vegetable per day. I have to think about almost everything I do in relation to how it will affect my treatment and that means that while I can give the appearance of always being happy and well, it is ever present in my thoughts and actions. It never ever goes away and not for one moment can I get complete respite from it.
However, there are some things that I can do to help my future, three important guidelines that I can follow to make sure that I am as well prepared as I can be. They consist of: eating healthily, sleeping well and exercising! Simple to follow but ultimately they could shape how the rest of my treatment goes. At 17 though, it's important to be realistic with my aims so I'll definitely be taking baby steps, especially with 9 portions of fruit and veg per day!
The CLIC sargent report: http://www.clicsargent.org.uk/sites/files/clicsargent/13092a_No_young_person_with_cancer_left_out.pdf
Thursday 28 November 2013
Little Victories
Watching the final few leaves abandon the trees this November, has reminded me of one of my favourite memories from this time last year. One particularly crisp and clear day, my Mum and I decided to travel to Westonbirt Arboretum. We wandered through the falling leaves and it was the first time that I had been up and about, active, for more than an hour or so. It felt fantastically uplifting and we both saw this as a real victory. That's when I realised that this period of time, was full of little victories.
My gland in my neck, which had swollen up before, was fluctuating in size daily and was causing a real increase in both mine and my family's worries. However, we spent a lot of the time trying to reach little targets in an effort to convince ourselves that we were beating my cancer. Walking through the Arboretum is just one example of a "little victory" but other things like, showering with no parent on standby in case I fell over, or the occasions when I was able to walk up the stairs to my bedroom and dress unattended, were all really important. Each small hurdle that I overcame was representative of a tick in the box towards me getting better.
Sometimes, there is no respite from the difficulties of treatment and all anyone can do is accept tough situations for what they are. However, other times, achieving the little things can go an awfully long way in proving to yourself that life does go on and things aren't always as bad as they first seem.
My gland in my neck, which had swollen up before, was fluctuating in size daily and was causing a real increase in both mine and my family's worries. However, we spent a lot of the time trying to reach little targets in an effort to convince ourselves that we were beating my cancer. Walking through the Arboretum is just one example of a "little victory" but other things like, showering with no parent on standby in case I fell over, or the occasions when I was able to walk up the stairs to my bedroom and dress unattended, were all really important. Each small hurdle that I overcame was representative of a tick in the box towards me getting better.
Sometimes, there is no respite from the difficulties of treatment and all anyone can do is accept tough situations for what they are. However, other times, achieving the little things can go an awfully long way in proving to yourself that life does go on and things aren't always as bad as they first seem.
Monday 25 November 2013
Steroids 2
Well, the effects of last weeks steroids seem to have finally dissipated from my system after an exceptionally long week. It's funny how hospital never seems to be as bad as I fear but I always end up forgetting just how much of an impact those tablets have on me! Once more I was a bit of a wreck coming into the weekend but I felt that a a couple of days of rest did me some real good. There were a couple of things that really did make me feel better and that I would recommend to anyone going through this treatment.
It can be all too easy to feel like the steroids are dictating your entire life and are getting on top of you, weighing you down. Don't let them. I spent my weekend really cracking on with school work and by the time Sunday evening arrived I'd completed four essays. The satisfaction of finishing my work while on my steroids was ten fold compared to the feeling that I normally get, as I had overcome a severe obstacle and defied something that had made me feel atrocious.
The steroids can also make people feel that they want to be left on their own. It's so important to do the complete opposite! Surround yourself with people who you love and make you happy. My family are always so understanding and caring and I'm exceptionally lucky for that. My poor little sister is especially lenient and when I'm having one of my major temper tantrums due to me not getting the exact food that I desire, she just breezes over my rage and laughs me away!
I know that I'm very lucky to have the family that I do and that even when I sometimes give up fighting, I know that they won't.
It can be all too easy to feel like the steroids are dictating your entire life and are getting on top of you, weighing you down. Don't let them. I spent my weekend really cracking on with school work and by the time Sunday evening arrived I'd completed four essays. The satisfaction of finishing my work while on my steroids was ten fold compared to the feeling that I normally get, as I had overcome a severe obstacle and defied something that had made me feel atrocious.
The steroids can also make people feel that they want to be left on their own. It's so important to do the complete opposite! Surround yourself with people who you love and make you happy. My family are always so understanding and caring and I'm exceptionally lucky for that. My poor little sister is especially lenient and when I'm having one of my major temper tantrums due to me not getting the exact food that I desire, she just breezes over my rage and laughs me away!
I know that I'm very lucky to have the family that I do and that even when I sometimes give up fighting, I know that they won't.
Thursday 21 November 2013
Back to School
After my extended stay in Birmingham where I was so far away from my family and friends (aside from my incredible mother of course!!), I was more determined than ever to get back out into MY world! The last week or so inside the hospital wasn't too fantastic due to the fact that mentally, I was pretty much back to normal. I still had nightmares and suffered the occasional blip of memory loss, but I was feeling more and more like the old me with every passing day. However, my body wasn't entirely agreeing with my mental faculties which was pretty rough. I struggled to eat very much and I was still having blood transfusions and chemotherapy through into December, but at this point I had transferred from Birmingham Children's Hospital to Bristol Children's Hospital. What felt like constant visits eventually slowed down on the 20th of November and became a little more spaced out.
I wanted more than anything to get back to school as soon as possible and so a week after being discharged from Bristol and another week at home, my Mum would drive me into sixth form for a couple of hours at a time just so that I could see my friends and teachers who had all been so supportive over the last 6 weeks through the huge amounts of get well cards, cakes and various other pick me ups! Of course I was incredibly apprehensive about letting everyone see how i had changed physically and much like before, I didn't want anyone treating me differently on an emotional level either. The constant stream of steroids had meant that I had put on some extra weight and my immune system wasn't functioning at all so I had to wrap up inside many layers of warm jumpers to prevent me getting a cold or other infection, in case it set my treatment back. When I arrived at school, I didn't tell anyone that I was going in and surprised almost all of my friends. Aha even remembering this now is making me stupidly emotional, but seeing them stood there outside the sixth form block was heart wrenching and fantastic in equal measures. I was told by my doctors not to touch anyone in case they had a cold, but I hugged the breath out of everyone I could with my weak, tubby arms. I didn't care what anyone thought of how I looked and to me, all that mattered was how I felt being able to spend time with the people I loved.
One thing that did amuse me especially on that first day back, was bumping someone who I hadn't spoken to for a fairly long time and the only thing they said to me was "Oh Will, with that hat, scarf and multiple layers of clothing, you look like some kind of snowman!" It still makes me laugh so much and I'm very grateful for them saying that, as it has meant that I've kept my feet on the ground through my treatment (well, as much as possible!) I saw some pretty terrible things affect some incredible people in Birmingham, a girl who wanted nothing more than to be a ballet dancer since the age of 7 was told that her tumour in her knee would mean that she might never even walk properly again. That girl smiled at me every day that I was in hospital with her, she even laughed and painted her's and her Father's toe nails when all her hair fell out. She was inspirational!
My point is, teenagers are so strong, but it can be all too easy to get caught up in our own dramas and not see the things that truly matter. I was so concerned about how I looked to everyone at school that I forgot that the only important thing to me would be spending time with the people who stuck by me through so much. This isn't some moral judgement from me by any means, I'm as guilty as the worst at getting bogged down in worrying about little things, but I feel that I can now say from experience that if you focus on what is important and what you do have, you will be a far happier person.
Monday 18 November 2013
Chemotherapy Mondays
Every Sunday night before I go into hospital the next day, a sense of dread looms over me. More often than not I worry for nothing, but that fear always remains and I expect it always will. My maintenance treatment means that I only have to go to hospital once every couple of weeks, but that is plenty enough for me! The staff at the hospital are always fantastic and make me feel at ease but during the car journey, you forget all of this. What if my chemotherapy needs to be increased again? Or my blood results come back and they aren't what was expected? I'm ashamed to say I even worry about the size of the needle they put in the back of my hands to administer the drugs. It's a pretty daunting experience and I imagine that many people in my situation feel the same way, that there is always a "what if" in the back of your mind. I think that what I dislike about visiting hospital the most, is that right now, I feel fine! I feel as if my life is returning to something that resembles normality and these hospital trips are something of a grounding back to reality and a reminder that I need to be careful. Maybe it is a good thing to be reminded to err on the side of caution and make sure I don't over reach myself, but it does also make me remember that I'm not a "normal" teenager and that is a pretty bitter pill to swallow, if you'll excuse the pun!
The other really tough thing to deal with at the hospital, is the smell. It sounds so strange but the really pungent stink of the antiseptic wipes brings back so many grim memories that it makes me wretch. For the next few days afterwards, no amount of showers can wash away the clinging scent, to the extent whereby I have developed a psychological tick and I feel the compulsion to spit continuously. Often the time that I spend in the hospital isn't too bad at all, although I doubt I'll ever develop a love for needles and cannulas! Obviously, the effects of the chemotherapy leave much to be desired but I'm grateful that I have such fantastic people in and out of hospital willing to help me through each chemotherapy Monday.
The other really tough thing to deal with at the hospital, is the smell. It sounds so strange but the really pungent stink of the antiseptic wipes brings back so many grim memories that it makes me wretch. For the next few days afterwards, no amount of showers can wash away the clinging scent, to the extent whereby I have developed a psychological tick and I feel the compulsion to spit continuously. Often the time that I spend in the hospital isn't too bad at all, although I doubt I'll ever develop a love for needles and cannulas! Obviously, the effects of the chemotherapy leave much to be desired but I'm grateful that I have such fantastic people in and out of hospital willing to help me through each chemotherapy Monday.
Thursday 14 November 2013
Ronald McDonald
This week's post is a little different to the usual one and I'll attempt to keep it a little briefer. With Children in Need tomorrow night, I have realised that it's so important to donate to the charities that mean the most personally and can do some of the most good. When I was in Birmingham, Mum was told about staying in accommodation nearby which meant she wasn't in hospital the entire time and would give her the chance of a shower and a short break. The hospital recommended that she used their local Ronald McDonald house. These houses provides free rooms, kitchen facilities etc. for any families whose children are in hospital and have to travel some distance. This means that there is a place for people to escape from the intensity of 24/7 life on the ward.
I've never been a massive advocate of McDonald's, but this charity offered so much support for my family and became something that we really relied upon. So next time you are in McDonald's and you drop any change you may have into the little plastic see-through houses, take a moment to feel that you are doing something really good because you are helping families to cope with the grimness of long term hospital stays.
I've never been a massive advocate of McDonald's, but this charity offered so much support for my family and became something that we really relied upon. So next time you are in McDonald's and you drop any change you may have into the little plastic see-through houses, take a moment to feel that you are doing something really good because you are helping families to cope with the grimness of long term hospital stays.
Monday 11 November 2013
Off to University
I think that the title of this post might be a little misleading so let me explain. Generally I don't dwell on what might have been, if I hadn't been diagnosed with cancer, but occasionally, there isn't much of a choice. Due to my treatment beginning at the start of the school year of Year 12, I missed most of the first year of Sixth Form. This meant that I could only complete one exam, English Literature, over the course of the year. Therefore, while my friends continued into their final year at school, I remained with the students in the year below.
This week hasn't been the easiest, due to a lot of my friends in Year 13 having received offers to Universities that they have applied for. I am ashamed to say that I have generally stuck my head in the sand over the issue of my friends leaving next year, but suddenly this issue has become very real! I would highly recommend anyone going through a similar circumstance, to try and not follow my example. While there are very few, if any, positives to be taken from the fact that the people that you love most will leave, but just like any other part of the treatment process, pretending that it's not happening is no way to deal with the problem. There are very few words of comfort that I can offer anyone who has to deal with this as for me, this is probably the hardest thing to come to terms with, caused by my cancer. However, it's important to remember that there are many other people going through similar situations and they do come through it. I think the thing that I struggle with most, is the helplessness of the situation and that nothing you can do will change what will happen. Even writing this is pretty difficult, as putting it down in writing makes it very very real and I still haven't entirely accepted that they are going to leave. I'm sure from earlier posts, everyone can see just how much I value my friends and have relied on them massively over the last year, so saying goodbye will be exceptionally hard.
On a few occasions such as this one, there is no looking for what is good. Cancer is crap.
This week hasn't been the easiest, due to a lot of my friends in Year 13 having received offers to Universities that they have applied for. I am ashamed to say that I have generally stuck my head in the sand over the issue of my friends leaving next year, but suddenly this issue has become very real! I would highly recommend anyone going through a similar circumstance, to try and not follow my example. While there are very few, if any, positives to be taken from the fact that the people that you love most will leave, but just like any other part of the treatment process, pretending that it's not happening is no way to deal with the problem. There are very few words of comfort that I can offer anyone who has to deal with this as for me, this is probably the hardest thing to come to terms with, caused by my cancer. However, it's important to remember that there are many other people going through similar situations and they do come through it. I think the thing that I struggle with most, is the helplessness of the situation and that nothing you can do will change what will happen. Even writing this is pretty difficult, as putting it down in writing makes it very very real and I still haven't entirely accepted that they are going to leave. I'm sure from earlier posts, everyone can see just how much I value my friends and have relied on them massively over the last year, so saying goodbye will be exceptionally hard.
On a few occasions such as this one, there is no looking for what is good. Cancer is crap.
Thursday 7 November 2013
Friendly Faces
As I said last Thursday, I was really concerned about my friends coming to visit me at Birmingham. My Mum had been visited by a few of her friends and even that was difficult for me, as obviously I wasn't feeling or looking well, at all. The morning that my friends were due to arrive, was the first time that I really saw myself and the effects caused by the chemotherapy. I was pretty disgusted if I'm being totally honest and was scared of what was looking back at me in the mirror.
My mum had wheeled me to the bathroom, where I went to the toilet for the first time in a while and she had to stand with her back to me, in case I fell over. Luckily, this did not occur! However, she then pushed me (in the wheelchair) to the sink and the mirror on the wall above. It was my eyes that scared me the most. They had sunk so far into my skull, ruined lips were pulled back over scum covered teeth. Grim. However, I had also had no opportunity to shave since arriving in Birmingham, so I had an inch long covering of facial fuzz around my jaw. I wanted to look as well as possible for my friends and so I decided that it needed to go. Unfortunately, I was too weak to hold the razor up to my face and was still barely in control of my own limbs, therefore Mum had to get rid of the "beard". She took the plastic razor (the kind you find in a cheap hotel) and after wetting my face, slowly, stroke by stroke, shaved off almost all the hair. A fine job she did too! After that, I wanted to have a bath, however, this was far more problematic than the shaving. Mum pretty much lifted me out of the wheelchair onto the bath and a kind of shelf then lowered me down into the water. It took a long while for me to wash completely and I couldn't bend to wash my own legs, so Mum had to soak and wipe them, making sure that my Hickman line did not dip into the water, in case it got infected and needed replacing. After the bath, I was then once more lifted and put back into my wheelchair and then taken to my bed looking slightly better and feeling much cleaner! With the help of Mum again, I was then dressed into fresh pyjamas and helped back into my bed.
My friends were soon to arrive and I was beginning to regain a little movement in my legs so had a slow practise of walking a few steps before they arrived, just in case they wanted to move into the social area in the Teenage Cancer Trust ward. Also, I had started eating the night before and it felt like a switch had been flicked inside me! I drank 4 pints of milk within the hour and was still demanding more. I was also ravenous, eating many hash browns which the nurses had especially fetched from McDonalds for me. When my friends did arrive, I nearly wept. I hadn't seen anyone other than my family and a few of Mum's friends for quite a few weeks, but any worries that I did have about them seeing me in such a state, pretty much disappeared immediately. I spent the time laughing and smiling and it was such a relief to have a semblance of normality back in my life. If anyone else is spending extended periods in hospital, I can't say how important it was for me to see people I loved and missed. Once my friends had gone and I had slept for a few hours after sheer exhaustion due to me being so active throughout the day, I was invigorated and rejuvenated. I couldn't shut up about how much I enjoyed seeing my friends and catching up on all the things going on at school. The chemotherapy was messing around with my head a bit, so I kept remembering little snippets of earlier that day and I would then regale them to anyone that would listen.
It was another really important day in my treatment and I believe that it was probably the turning point in me starting to believe that I'd really get better. Obviously there was a long way to go still, but that day was a real ray of hope and often in the following months I would look back on it and it would bring me so much hope and comfort when difficulties arose and times became hard.
My mum had wheeled me to the bathroom, where I went to the toilet for the first time in a while and she had to stand with her back to me, in case I fell over. Luckily, this did not occur! However, she then pushed me (in the wheelchair) to the sink and the mirror on the wall above. It was my eyes that scared me the most. They had sunk so far into my skull, ruined lips were pulled back over scum covered teeth. Grim. However, I had also had no opportunity to shave since arriving in Birmingham, so I had an inch long covering of facial fuzz around my jaw. I wanted to look as well as possible for my friends and so I decided that it needed to go. Unfortunately, I was too weak to hold the razor up to my face and was still barely in control of my own limbs, therefore Mum had to get rid of the "beard". She took the plastic razor (the kind you find in a cheap hotel) and after wetting my face, slowly, stroke by stroke, shaved off almost all the hair. A fine job she did too! After that, I wanted to have a bath, however, this was far more problematic than the shaving. Mum pretty much lifted me out of the wheelchair onto the bath and a kind of shelf then lowered me down into the water. It took a long while for me to wash completely and I couldn't bend to wash my own legs, so Mum had to soak and wipe them, making sure that my Hickman line did not dip into the water, in case it got infected and needed replacing. After the bath, I was then once more lifted and put back into my wheelchair and then taken to my bed looking slightly better and feeling much cleaner! With the help of Mum again, I was then dressed into fresh pyjamas and helped back into my bed.
My friends were soon to arrive and I was beginning to regain a little movement in my legs so had a slow practise of walking a few steps before they arrived, just in case they wanted to move into the social area in the Teenage Cancer Trust ward. Also, I had started eating the night before and it felt like a switch had been flicked inside me! I drank 4 pints of milk within the hour and was still demanding more. I was also ravenous, eating many hash browns which the nurses had especially fetched from McDonalds for me. When my friends did arrive, I nearly wept. I hadn't seen anyone other than my family and a few of Mum's friends for quite a few weeks, but any worries that I did have about them seeing me in such a state, pretty much disappeared immediately. I spent the time laughing and smiling and it was such a relief to have a semblance of normality back in my life. If anyone else is spending extended periods in hospital, I can't say how important it was for me to see people I loved and missed. Once my friends had gone and I had slept for a few hours after sheer exhaustion due to me being so active throughout the day, I was invigorated and rejuvenated. I couldn't shut up about how much I enjoyed seeing my friends and catching up on all the things going on at school. The chemotherapy was messing around with my head a bit, so I kept remembering little snippets of earlier that day and I would then regale them to anyone that would listen.
It was another really important day in my treatment and I believe that it was probably the turning point in me starting to believe that I'd really get better. Obviously there was a long way to go still, but that day was a real ray of hope and often in the following months I would look back on it and it would bring me so much hope and comfort when difficulties arose and times became hard.
Monday 4 November 2013
Finding a Balance
One of the biggest obstacles that has been put in front of me by my treatment, is finding a balance between what I can and can't, physically and mentally do. Often, I will feel absolutely fine and wake up looking forward to the day ahead and yet by 1:30 I'll be completely exhausted. In particular, during my intensive phase of treatment, I'd have to return home after half a day of school just because I was so drained. It can be really challenging to know quite how much you should exert yourself and is unsurprisingly, very demoralising, as things that you'd take for granted before treatment, such as walking up a flight of stairs, can be an almost painful process! Learning to judge how much is physically possible is an important part of recovery but if done accurately, can be incredibly rewarding.
Anyway, this does have a relevance towards this week, as finding a balance is also very important in the amount of chemotherapy that I must take. Each person reacts differently to different levels of chemotherapy, some are very sensitive to it, while others need more to obtain the full effects. I am in the latter of the two groups and today, after my blood tests, I was told that my uptake of chemotherapy will be increased. Naturally, I was very upset because the tablets hardly make me feel great at the best of times, but there's next to nothing I can do, except hope that my blood levels start to come down again. Only in this way can the doctors know that the chemotherapy is working as it should. Over the course of treatment, you get little set backs but it's so so important that you don't let it get you down too much. My treatment has another two years left and over that time I'm sure that my blood levels will fluctuate and my chemotherapy will be tampered with many times. However, I know that after the last year of having all sorts of drugs pumped into me, really, taking some more tablets that'll make me feel rubbish for a few extra days a month are well worth making sure I recover fully.
Of course, I can write this now, but come tomorrow I am going to be as grumpy as all hell!
Anyway, this does have a relevance towards this week, as finding a balance is also very important in the amount of chemotherapy that I must take. Each person reacts differently to different levels of chemotherapy, some are very sensitive to it, while others need more to obtain the full effects. I am in the latter of the two groups and today, after my blood tests, I was told that my uptake of chemotherapy will be increased. Naturally, I was very upset because the tablets hardly make me feel great at the best of times, but there's next to nothing I can do, except hope that my blood levels start to come down again. Only in this way can the doctors know that the chemotherapy is working as it should. Over the course of treatment, you get little set backs but it's so so important that you don't let it get you down too much. My treatment has another two years left and over that time I'm sure that my blood levels will fluctuate and my chemotherapy will be tampered with many times. However, I know that after the last year of having all sorts of drugs pumped into me, really, taking some more tablets that'll make me feel rubbish for a few extra days a month are well worth making sure I recover fully.
Of course, I can write this now, but come tomorrow I am going to be as grumpy as all hell!
Thursday 31 October 2013
Birmingham Blood
I'll start off by apologising for the title of this post but it is Halloween!
After the first couple of weeks in Birmingham, I still hadn't begun to eat or drink. As can be expected, my parents were naturally very anxious about this and yet my doctors did say that it was perfectly normal and there shouldn't be too much to worry about. I spent every single day lying in bed being given chemotherapy which was mixed in with the occasional blood transfusion! I think in total I had over a dozen transfusions during the time that I spent in the hospital and if you ever have one, you might agree, that it can be an almost surreal experience watching someone else's blood being dripped into you.
However, apologies, as I am getting ahead of myself! To administer the chemotherapy and blood, I had to have multiple cannulas in the backs of my hands and the insides of my elbows. Unfortunately, this was unsustainable as due to the excessive strain that the cannulas were put under, I needed a new one to be inserted into me pretty much every day. Therefore, I needed, what is known as a Hickman Line, put in me as soon as was possible. A Hickman Line is a central venous catheter, which meant that all my chemotherapy could be administered with less pain, straight into my heart. The actual operation was delayed by an entire week due to the amount of other people requiring surgery, but when the day came that I was "put under", it was such a relief. It meant that instead of doctors and nurses sticking holes in me left, right and center, the chemotherapy and access to my bloods became far easier due to the two tubes which lead directly into my chest.
My operation was on the 22nd of October and that night was the first night that I ate, since the 7th. I can still remember being very proud of managing to digest a mouthful of pasta bake and one of those ever reliable Jaffa Cakes. It was a very important day in my treatment, made even more special by the fact that I had finally allowed some of my friends to visit me the next day. This was something that I had been loathe to do, due to fear of them not knowing how to act around me anymore. It was a genuine fear at the time, but a completely irrational one as it turned out.
After the first couple of weeks in Birmingham, I still hadn't begun to eat or drink. As can be expected, my parents were naturally very anxious about this and yet my doctors did say that it was perfectly normal and there shouldn't be too much to worry about. I spent every single day lying in bed being given chemotherapy which was mixed in with the occasional blood transfusion! I think in total I had over a dozen transfusions during the time that I spent in the hospital and if you ever have one, you might agree, that it can be an almost surreal experience watching someone else's blood being dripped into you.
However, apologies, as I am getting ahead of myself! To administer the chemotherapy and blood, I had to have multiple cannulas in the backs of my hands and the insides of my elbows. Unfortunately, this was unsustainable as due to the excessive strain that the cannulas were put under, I needed a new one to be inserted into me pretty much every day. Therefore, I needed, what is known as a Hickman Line, put in me as soon as was possible. A Hickman Line is a central venous catheter, which meant that all my chemotherapy could be administered with less pain, straight into my heart. The actual operation was delayed by an entire week due to the amount of other people requiring surgery, but when the day came that I was "put under", it was such a relief. It meant that instead of doctors and nurses sticking holes in me left, right and center, the chemotherapy and access to my bloods became far easier due to the two tubes which lead directly into my chest.
My operation was on the 22nd of October and that night was the first night that I ate, since the 7th. I can still remember being very proud of managing to digest a mouthful of pasta bake and one of those ever reliable Jaffa Cakes. It was a very important day in my treatment, made even more special by the fact that I had finally allowed some of my friends to visit me the next day. This was something that I had been loathe to do, due to fear of them not knowing how to act around me anymore. It was a genuine fear at the time, but a completely irrational one as it turned out.
Monday 28 October 2013
Steroids
The last week hasn't been a huge amount of fun for me, due to the fact that I began one of my five day steroid cycles last Monday. Now, this isn't an uncommon part of my treatment as one of these cycles comes around every 4 weeks or so and yet it still takes some growing accustomed to. Just to clarify, the steroids that I take do not allow you to suddenly grow huge muscles! Instead, they are a very important part of the chemotherapy treatment structure that I follow.
So these steroids come in the form of tiny tablets which I must take twice a day with my meals and they have some pretty weird effects. Now I know that everyone who takes them will react slightly differently to them but generally, the tablets redistribute fats around the body. Unfortunately, they redistribute this primarily to the stomach and face which means that no matter how much or little you eat, there's a very good chance that you're going to look a little chubbier for the period of time that you are on them. However, eating and drinking becomes a bit of a problem for me when I'm on my steroids as they are known to change your taste buds a little. Weirdly enough, the one major taste that is altered when I am taking my steroids, is water. For some reason, my tablets make it taste absolutely vile, to the point where I can't swallow it. Another effect that the steroids have on me is that I struggle to eat any food during the first 4 days of starting to take them. I'm not entirely sure why, but I end up finding it very difficult to stomach a few mouthfuls of anything at all over those few days. This is greatly annoying because come Wednesday and Thursday, I haven't eaten a proper meal in a while and so, feel starving, but can't consume anything without feeling very ill. However, by Friday, it's a different story. The steroids then work in reverse and the effects don't stop when I finish taking them on the Friday evening, as for the whole weekend my appetite is pretty insatiable and then by Monday, I'm back to normal again. As you can imagine this puts quite a strain on my poor parents who feel that they should feed me when I tell them that I'm hungry, only for me not to eat what they then present me with!
The steroids don't just affect me physically, they also change my moods too. My emotions become far more intense, both good and bad feelings. This leads to some really strange scenarios where I go from feeling almost euphoric, to feeling really angry in the blink of an eye and sometimes I, myself, don't even know the reason! The final thing that the steroids change about me, is that they can make me become quite fidgety and restless at times, which makes sitting still quite a challenge, particularly when I'm in school!
I do think that it's worth mentioning that obviously, all types of treatment will affect people in different ways and this is just my account of the effects that my steroids have on me.
Thursday 24 October 2013
My First Week in Birmingham
When people ask about my two months that I spent in Birmingham Children's Hospital, I often tell them that I don't remember too much of the experience and largely this is true, so please do forgive me if I get my dates a little muddled, but generally I'm pretty sure I've been accurate with my recollection. However, there are some things that I do remember vividly and I haven't felt ready to speak about them until now as I found the challenges that my family and I faced, quite difficult to come to terms with. I found my first couple of months of treatment pretty terrifying due to the fact that the infection which had "triggered" my Leukaemia meant I had to undertake some very intense chemotherapy and antibiotics as soon as possible, which completely shocked my body. This meant that, amongst other things, my body rejected any food or drink outright for almost 3 weeks!
The most immediate and physically altering effect of the chemotherapy was my drastic loss in weight. I lost two stone in a week and a half and went from being, if I say so myself, reasonably athletic, to a skinny, chicken legged shell of the person that I was. I remember I'd just stare at my hands for seemingly hours, as if watching them deteriorate day by day. I'm not entirely sure why I did this, but apparently I was fascinated with them and it really freaked everyone at the hospital out! After a few days of chemotherapy, my teeth and eyes soon became too big for my face and according to Mum and Dad, I began to look like Frodo after he was bitten by Shelob, the giant spider in Lord of the Rings, void of all colour, eyes glazed over and skin stretched thinly over the outline of my face. Not my finest look I've been told!
Other than my physical appearance, which frankly I was too ill to really come to terms with, I had to grow accustomed to some other massive changes in hospital. The worst of which was probably the fact that every 2 hours I had to be woken up to receive more chemotherapy, blood tests or anti-sickness pills (of which there were countless dozens!). I was incredibly lucky in my treatment in that I had amazing support from everyone imaginable. All my friends and teachers sent photos and cards and I cannot overstate just how vital they were, in making me open up my eyes each day. However, the people who I will probably never be able to fully repay and have been incredible over the course of all of my treatment, were my family. My Mum stayed in the same room as me every single day and night, on a fold up bed for the entire experience, while my sister had to persevere through school every day and Dad would take as much time off work as he could to see me and ease the pressure on my poor Mum. She would be by my side every single time I needed to take more medication and would help me choke back my tablets which invariably I coughed straight back up anyway. Due to the lack of fluid in me, my skin became very dry, very quickly and in particular my lips became cracked and swollen, often bleeding for no apparent reason. Every few hours, my Mum would apply some anti-bacterial liquid to them to stop them getting infected and although it stung like nobody's business, it was vastly preferable to the arid condition that they would otherwise have been left in, as I was too weak to apply any of it myself.
By this stage, I had become too weak to walk and required a large amount of assistance to go anywhere, including, obviously, the toilet. Therefore, whenever I needed to go, I had to either wake up my Mum, or call for a nurse to pass me a cardboard, flask shaped container to urinate in, while trying desperately not to pull out the multitude of tubes that had been inserted into my arms, hands and nose. To put it mildly, it was bleak.
On the 19th of October 2012, a week after arriving in Birmingham, I had been scheduled for a Lumbar Puncture and was going to make my way down to surgery. However, as I tried to pull myself out of bed I ended up fainting and apparently toppled headlong into my mother's arms which was really quite lucky for me! I awoke to some mild panic from various nurses and only later did I discover that this panic was brought about due to me falling unconscious with my eyes remaining wide open the entire time, which I suppose was a little traumatic for all. Whenever I try to picture this, I imagine a puppet having all of it's strings cut that were holding it in place. From that moment onward I needed a wheel chair to move anywhere, although predominantly I was bedridden anyway and received the vast majority of treatment in my room. However, the doctors had insisted that I have a scan of my brain so I was wheeled down a very dark corridor to determine if the fainting had been brought on by a blood clot and could therefore, lead to a stroke. I was eased into an MRI scanner and honestly remember nothing else until, before I knew it, I was back in bed after a pretty grim day!
At this point I hadn't seen anything of the outside world for almost two weeks but I can remember lying in my hospital bed at night and having really sudden moments of clarity where I knew exactly where I was. I'd look upwards through the window in the ceiling of the room and see an airplane flying overhead with it's flashing red lights in the night sky and I used to wake up my Mum (who must have been exhausted) and we'd pretend that they were shooting stars together. We'd then lie there talking about anything, discussing the smell of rain or old holidays we had been on, before cancer had infiltrated our family. Afterwards, I'd then fall asleep for a couple of hours, only to forget who I was once more, by the time the next day had come.
I can't imagine how difficult that must have been for her, one moment, I'd be seemingly sane and well within my own head and then the next, about as full of life as one of the machines pumping chemotherapy into me, with their never ending and painfully consistent "bleeps". I spent many nights not knowing whether I was in a dream or actually awake and each time I did wake up, there would be a struggle to differentiate between the real world and some nightmare which might have been brought on by the chemotherapy, as the drugs I was taking are known to cause very vivid, hallucinogenic dreams.
I know I've said this in previous posts but my family have been and continue to be amazing throughout my treatment, but in the first few weeks, they were just astonishing. It must have been a thousand times scarier for them to experience what I went through, compared to what I had to deal with, as I was barely conscious for the majority of it and they had to sit, seemingly helplessly, by my side, watching me. It's only now that I can fully appreciate every single thing they did to help me, in a time when I was so completely reliant on others for my own well being.
The most immediate and physically altering effect of the chemotherapy was my drastic loss in weight. I lost two stone in a week and a half and went from being, if I say so myself, reasonably athletic, to a skinny, chicken legged shell of the person that I was. I remember I'd just stare at my hands for seemingly hours, as if watching them deteriorate day by day. I'm not entirely sure why I did this, but apparently I was fascinated with them and it really freaked everyone at the hospital out! After a few days of chemotherapy, my teeth and eyes soon became too big for my face and according to Mum and Dad, I began to look like Frodo after he was bitten by Shelob, the giant spider in Lord of the Rings, void of all colour, eyes glazed over and skin stretched thinly over the outline of my face. Not my finest look I've been told!
Other than my physical appearance, which frankly I was too ill to really come to terms with, I had to grow accustomed to some other massive changes in hospital. The worst of which was probably the fact that every 2 hours I had to be woken up to receive more chemotherapy, blood tests or anti-sickness pills (of which there were countless dozens!). I was incredibly lucky in my treatment in that I had amazing support from everyone imaginable. All my friends and teachers sent photos and cards and I cannot overstate just how vital they were, in making me open up my eyes each day. However, the people who I will probably never be able to fully repay and have been incredible over the course of all of my treatment, were my family. My Mum stayed in the same room as me every single day and night, on a fold up bed for the entire experience, while my sister had to persevere through school every day and Dad would take as much time off work as he could to see me and ease the pressure on my poor Mum. She would be by my side every single time I needed to take more medication and would help me choke back my tablets which invariably I coughed straight back up anyway. Due to the lack of fluid in me, my skin became very dry, very quickly and in particular my lips became cracked and swollen, often bleeding for no apparent reason. Every few hours, my Mum would apply some anti-bacterial liquid to them to stop them getting infected and although it stung like nobody's business, it was vastly preferable to the arid condition that they would otherwise have been left in, as I was too weak to apply any of it myself.
By this stage, I had become too weak to walk and required a large amount of assistance to go anywhere, including, obviously, the toilet. Therefore, whenever I needed to go, I had to either wake up my Mum, or call for a nurse to pass me a cardboard, flask shaped container to urinate in, while trying desperately not to pull out the multitude of tubes that had been inserted into my arms, hands and nose. To put it mildly, it was bleak.
On the 19th of October 2012, a week after arriving in Birmingham, I had been scheduled for a Lumbar Puncture and was going to make my way down to surgery. However, as I tried to pull myself out of bed I ended up fainting and apparently toppled headlong into my mother's arms which was really quite lucky for me! I awoke to some mild panic from various nurses and only later did I discover that this panic was brought about due to me falling unconscious with my eyes remaining wide open the entire time, which I suppose was a little traumatic for all. Whenever I try to picture this, I imagine a puppet having all of it's strings cut that were holding it in place. From that moment onward I needed a wheel chair to move anywhere, although predominantly I was bedridden anyway and received the vast majority of treatment in my room. However, the doctors had insisted that I have a scan of my brain so I was wheeled down a very dark corridor to determine if the fainting had been brought on by a blood clot and could therefore, lead to a stroke. I was eased into an MRI scanner and honestly remember nothing else until, before I knew it, I was back in bed after a pretty grim day!
At this point I hadn't seen anything of the outside world for almost two weeks but I can remember lying in my hospital bed at night and having really sudden moments of clarity where I knew exactly where I was. I'd look upwards through the window in the ceiling of the room and see an airplane flying overhead with it's flashing red lights in the night sky and I used to wake up my Mum (who must have been exhausted) and we'd pretend that they were shooting stars together. We'd then lie there talking about anything, discussing the smell of rain or old holidays we had been on, before cancer had infiltrated our family. Afterwards, I'd then fall asleep for a couple of hours, only to forget who I was once more, by the time the next day had come.
I can't imagine how difficult that must have been for her, one moment, I'd be seemingly sane and well within my own head and then the next, about as full of life as one of the machines pumping chemotherapy into me, with their never ending and painfully consistent "bleeps". I spent many nights not knowing whether I was in a dream or actually awake and each time I did wake up, there would be a struggle to differentiate between the real world and some nightmare which might have been brought on by the chemotherapy, as the drugs I was taking are known to cause very vivid, hallucinogenic dreams.
I know I've said this in previous posts but my family have been and continue to be amazing throughout my treatment, but in the first few weeks, they were just astonishing. It must have been a thousand times scarier for them to experience what I went through, compared to what I had to deal with, as I was barely conscious for the majority of it and they had to sit, seemingly helplessly, by my side, watching me. It's only now that I can fully appreciate every single thing they did to help me, in a time when I was so completely reliant on others for my own well being.
Monday 21 October 2013
Movember
Over the last week I've had a few ups and downs. I initially had a massive comedown from the incredible weekend away at FYSOT but have luckily managed to find (on Facebook) all of my new friends from the trip to keep in contact with them. I cannot reiterate enough just how much I'd recommend any young person with cancer, to attend this weekend in the future!
I feel I may owe some people apologies this week, particularly my close friends and family. One of the things that I did discover over the last weekend was that the chance of relapsing, particularly in Leukaemia, is a lot higher than I originally thought. I met young people who had relapsed and who had to endure a bone marrow transplant as well as radiation therapy and it did shock me that this happens to people my age. This week, it has been playing on my mind a lot, so I decided to ask to meet with my consultant today to discuss what was bothering me.
I'm honestly so glad that I did have that conversation. He broke down using facts and figures the likelihood of me relapsing which confirmed my worries that yes there was a 10-20% chance of it happening, however, by treating me like an adult and being upfront, my worries really did reduce significantly. It was quite a scary conversation, but one that was definitely worthwhile and has relieved a lot of angst on my part.
Anyway, the final part of this post is that I want to show massive appreciation for my school, who spent half an hour today educating our Sixth Form on the typical signs of Prostate and Testicular cancer and are now striving to raise money for "Movember" to raise awareness of men's health.
Thursday 17 October 2013
Moving to Birmingham Children's Hospital
After I was diagnosed on the Wednesday, I urgently needed to move to a bigger hospital than Gloucester Royal. I had to be transferred as soon as possible but unfortunately I had had to remain in Gloucester for a blood transfusion before I could be moved. This meant that I was scheduled to leave on Friday evening, during rush hour. Originally, I was going to be moved to the large Bristol Children's Unit but unfortunately all of their beds were full, so instead Gloucester Royal called Oxford and again, there was no room. As a last resort Birmingham was called and before I knew what was happening I was strapped onto a bed with my arms by my side and wheeled into an ambulance.
I remember very little of the journey itself but I do recall being able to open my eyes to just stare at my Mum who kept asking if I was alright. I find it incredible now, but I was so weak I couldn't even answer her, instead I very slowly raised up one thumb of reassurance and tried to smile.
When we eventually arrived in Birmingham Children's Hospital I was taken to the children's ward immediately. Unfortunately, there had been a mix up with my age and the hospital was expecting a very weak 6 year old instead of a 16 year old! Obviously, the bed was too small and so I was taken up the few floors to the Teenage Cancer Trust ward which was designed specifically for young people. However, as I was to be taken upstairs as quickly as possible, the porters who were pushing my bed didn't realise that both of my canulas in the back's of my hand had been pulled out and I was bleeding quite profusely.
I arrived on the Teenage Cancer Trust ward still in a haze, not sure at all of where I was and what was going on. I do remember though, my Dad and sister and of course Mum who had driven up to Birmingham that night sitting with me, trying to encourage me to sit up in my bed and watch an England football match that was on the television.
That was one of the scariest times in my life because I honestly didn't know if I was going to make it through the night. What is important to mention is that every nurse, doctor, porter, ambulance driver and also my family were incredible that night and gave me the best chance of survival. I can't thank these people enough and I know for a fact that without their perseverance, I wouldn't be here today.
I remember very little of the journey itself but I do recall being able to open my eyes to just stare at my Mum who kept asking if I was alright. I find it incredible now, but I was so weak I couldn't even answer her, instead I very slowly raised up one thumb of reassurance and tried to smile.
When we eventually arrived in Birmingham Children's Hospital I was taken to the children's ward immediately. Unfortunately, there had been a mix up with my age and the hospital was expecting a very weak 6 year old instead of a 16 year old! Obviously, the bed was too small and so I was taken up the few floors to the Teenage Cancer Trust ward which was designed specifically for young people. However, as I was to be taken upstairs as quickly as possible, the porters who were pushing my bed didn't realise that both of my canulas in the back's of my hand had been pulled out and I was bleeding quite profusely.
I arrived on the Teenage Cancer Trust ward still in a haze, not sure at all of where I was and what was going on. I do remember though, my Dad and sister and of course Mum who had driven up to Birmingham that night sitting with me, trying to encourage me to sit up in my bed and watch an England football match that was on the television.
That was one of the scariest times in my life because I honestly didn't know if I was going to make it through the night. What is important to mention is that every nurse, doctor, porter, ambulance driver and also my family were incredible that night and gave me the best chance of survival. I can't thank these people enough and I know for a fact that without their perseverance, I wouldn't be here today.
Monday 14 October 2013
FYSOT Weekend
This weekend I was lucky enough to attend a fantastic event which is organised by the Teenage Cancer Trust which is called, brace yourselves, Find Your Sense Of Tumour. I was incredibly nervous about going as I knew very few people who would also be there, but I signed up for it and I'm so glad that I did.
The event is for young people aged between 14-25 and is held at Nottingham Center Parcs. I don't know the definitive number of people who attended but I can safely say that it was more than a few hundred across all of Great Britain. The weekend was split up fairly evenly into approximately one hour long lectures and free time, which could include using any of the facilities at the disposal of other guests. We listened to a variety of guest speakers who were all incredibly inspirational in their own right and some of the bravest people I've had the fortune to meet and these included: Stephen Sutton, Joe Twyman, Giles Long and Dame Ellen MacArthur. Of all the guest speakers, it was Stephen Sutton who spoke so incredibly passionately about how vital it is to live in the moment, that moved me the most and I'd highly recommend visiting his Facebook page which you will find at the bottom of today's blog.
There were also afternoon workshops which were specific to different cancers. I attended the Leukaemia one and was so impressed with the honesty of both the questions raised by other cancer sufferers, but also the amount of empathy that you could see in the faces of the Doctors answering the questions. There were some topics of discussion that I found very hard to deal with, such as the possibility of infertility and memory loss and yet everything was tackled head on and I came away from the experience feeling both impressed and better educated for it.
However, it wasn't just the lecturers who have inspired and motivated me. I met a lot of teenagers who had endured some very, very difficult times and they were all such down to earth people. The weekend highlighted to me the resilience and psychological strength that teenagers possess and I came away with the will to become an even more appreciative person of what I do have.
I heard many fantastic people say some truly great things over the entire weekend but the one quote that did stand out for me was that "You are only as strong as the people around you." This short statement could epitomise how I have felt about all of my treatment so far. I would not be anywhere near as healthy, happy and strong as I am today without the vast support from my friends, family and school. I know that many people aren't as lucky as I am and I've met people who have had to go through some ghastly experiences without the backing that I have had. However, this has only made me more thankful to everyone that does wish me well and it has made me determined to help those who need it.
The event is for young people aged between 14-25 and is held at Nottingham Center Parcs. I don't know the definitive number of people who attended but I can safely say that it was more than a few hundred across all of Great Britain. The weekend was split up fairly evenly into approximately one hour long lectures and free time, which could include using any of the facilities at the disposal of other guests. We listened to a variety of guest speakers who were all incredibly inspirational in their own right and some of the bravest people I've had the fortune to meet and these included: Stephen Sutton, Joe Twyman, Giles Long and Dame Ellen MacArthur. Of all the guest speakers, it was Stephen Sutton who spoke so incredibly passionately about how vital it is to live in the moment, that moved me the most and I'd highly recommend visiting his Facebook page which you will find at the bottom of today's blog.
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| Stephen Sutton and I |
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| Dame Ellen MacArthur and I |
However, it wasn't just the lecturers who have inspired and motivated me. I met a lot of teenagers who had endured some very, very difficult times and they were all such down to earth people. The weekend highlighted to me the resilience and psychological strength that teenagers possess and I came away with the will to become an even more appreciative person of what I do have.
I heard many fantastic people say some truly great things over the entire weekend but the one quote that did stand out for me was that "You are only as strong as the people around you." This short statement could epitomise how I have felt about all of my treatment so far. I would not be anywhere near as healthy, happy and strong as I am today without the vast support from my friends, family and school. I know that many people aren't as lucky as I am and I've met people who have had to go through some ghastly experiences without the backing that I have had. However, this has only made me more thankful to everyone that does wish me well and it has made me determined to help those who need it.
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| The South West Group |
Stephen Sutton's Facebook page: https://www.facebook.com/StephensStory?ref=ts&fref=ts
Thursday 10 October 2013
A Year Today - My Diagnosis
It was a year ago today that I was diagnosed with Leukaemia and it would be impossible to try and give details on everything that has happened in that time. However, I'd like to try and describe the events leading up to my diagnosis and the emotions that immediately followed.
It didn't take long for me to realise that something my health wasn't quite right and in fact the first obvious physical changes happened over night! I'd been feeling under the weather for a few days and so after visiting the GP on the Saturday, I was given some antibiotics with a follow up appointment scheduled for the next week. Unfortunately, I had a bad reaction to these antibiotics (later I found out that my Grandpa is also allergic to them) and a fist sized lump appeared in the upper right hand side of my neck. I had woken up in the early hours of the morning with my eyes literally sealed shut with that grimy sleep gunk and this lump in my neck! Instead of waking my parents like most people probably would have, I stumbled downstairs where I pulled open my eye lids and checked out my symptoms online on the NHS website. Most signs seemed to point to glandular fever or a blood infection and Leukaemia was the very last potential prognosis on the page so I didn't give it too much thought.
It was only at 5:00am that I decided to wake up my parents who kept calm and told me all the things that I needed to hear to prevent me from panicking too much, reassuring me that we'd visit the GP again the next day to get some new tablets. That Monday my mum took me to the GP and as the lump was still quite prominent in my neck they took a few blood tests and sent us home with the advice to take Paracetemol. I decided to get an early night and then at 9:30pm our GP called and said it was vitally important that we get to Stroud hospital as soon as possible.
What happened next is still a bit of a blur and I only remember disjointed segments of the next few days. That night I was taken to Stroud and then very quickly to Gloucester hospital where I was put on the children's ward. I have almost no recollection of what happened from Monday night to the next Wednesday but I will never forget the moment I was told that I had cancer.
My Mum had stayed by my side almost continuously throughout my time at Gloucester hospital and so when I regained some sort of consciousness she was there sat next to my bed. Apparently the doctors had been in and out the whole time I was there but I honestly couldn't recognise or remember any of them up until that point. I think there were four doctors in total who came into the room and there was no hesitating when they spoke to me, they treated me like an adult and I have huge respect for them for that alone. They said "I'm sure that you were aware of the possibility that you have Acute Lymphoblastic Leukaemia" and the strangest thought went through my head which I can now look back and laugh on, which was "Isn't Leukaemia cancer?" Of course I knew that Leukaemia was cancer but it was as if a part of my mind was actively denying it, to the rational side of me. I know it's very cliché to say that after hearing shocking news you hear "white noise" but genuinely I didn't hear another word of what came out any of the Doctor's mouths. I sat on that bed, propped up against the pillows and was completely unmoving, utterly still.
It was at that point that I requested that everyone leave the room, interrupting the Doctor mid-sentence. I lay back trying to compose myself, too weak even to get up to walk to the window and then I called my friend who was in a lesson as it was still only 10:30am. I remember being so furious with him and that's when I began to get hysterical due to him not picking up his phone!! How ridiculous is that?! When he did pick up, I told him straight away through heaving sobs, but made him swear not to tell anyone as I hadn't even told my sister yet and if she found out through anyone but me I could never forgive myself. However, I didn't feel that she could be told through a phone call, so my friend had to keep it a secret for the rest of the day which, when I reflect on now, I see was an incredible ask of him, but at the time I hadn't given it too much thought.
Obviously back then, I had no idea how much my life would change as I believed that cancer just didn't happen to people my age. In my mind it was only people in books and films who were diagnosed with it and even then, purely for the use of a convenient ending to tragedies.
I realise that this blog is very open but it is an honest recount of my feelings now and in the past and will hopefully be of use to anyone that may be experiencing something similar, or may want to understand how people feel about being diagnosed. I cannot reiterate enough just how much I encourage people to ask me questions if they have any at all, no matter how "odd" or "insensitive". Please do not hesitate to get in contact.
I'll be attempting to post a couple of times a week and I look forward to any response I may get.
It didn't take long for me to realise that something my health wasn't quite right and in fact the first obvious physical changes happened over night! I'd been feeling under the weather for a few days and so after visiting the GP on the Saturday, I was given some antibiotics with a follow up appointment scheduled for the next week. Unfortunately, I had a bad reaction to these antibiotics (later I found out that my Grandpa is also allergic to them) and a fist sized lump appeared in the upper right hand side of my neck. I had woken up in the early hours of the morning with my eyes literally sealed shut with that grimy sleep gunk and this lump in my neck! Instead of waking my parents like most people probably would have, I stumbled downstairs where I pulled open my eye lids and checked out my symptoms online on the NHS website. Most signs seemed to point to glandular fever or a blood infection and Leukaemia was the very last potential prognosis on the page so I didn't give it too much thought.
It was only at 5:00am that I decided to wake up my parents who kept calm and told me all the things that I needed to hear to prevent me from panicking too much, reassuring me that we'd visit the GP again the next day to get some new tablets. That Monday my mum took me to the GP and as the lump was still quite prominent in my neck they took a few blood tests and sent us home with the advice to take Paracetemol. I decided to get an early night and then at 9:30pm our GP called and said it was vitally important that we get to Stroud hospital as soon as possible.
What happened next is still a bit of a blur and I only remember disjointed segments of the next few days. That night I was taken to Stroud and then very quickly to Gloucester hospital where I was put on the children's ward. I have almost no recollection of what happened from Monday night to the next Wednesday but I will never forget the moment I was told that I had cancer.
My Mum had stayed by my side almost continuously throughout my time at Gloucester hospital and so when I regained some sort of consciousness she was there sat next to my bed. Apparently the doctors had been in and out the whole time I was there but I honestly couldn't recognise or remember any of them up until that point. I think there were four doctors in total who came into the room and there was no hesitating when they spoke to me, they treated me like an adult and I have huge respect for them for that alone. They said "I'm sure that you were aware of the possibility that you have Acute Lymphoblastic Leukaemia" and the strangest thought went through my head which I can now look back and laugh on, which was "Isn't Leukaemia cancer?" Of course I knew that Leukaemia was cancer but it was as if a part of my mind was actively denying it, to the rational side of me. I know it's very cliché to say that after hearing shocking news you hear "white noise" but genuinely I didn't hear another word of what came out any of the Doctor's mouths. I sat on that bed, propped up against the pillows and was completely unmoving, utterly still.
It was at that point that I requested that everyone leave the room, interrupting the Doctor mid-sentence. I lay back trying to compose myself, too weak even to get up to walk to the window and then I called my friend who was in a lesson as it was still only 10:30am. I remember being so furious with him and that's when I began to get hysterical due to him not picking up his phone!! How ridiculous is that?! When he did pick up, I told him straight away through heaving sobs, but made him swear not to tell anyone as I hadn't even told my sister yet and if she found out through anyone but me I could never forgive myself. However, I didn't feel that she could be told through a phone call, so my friend had to keep it a secret for the rest of the day which, when I reflect on now, I see was an incredible ask of him, but at the time I hadn't given it too much thought.
Obviously back then, I had no idea how much my life would change as I believed that cancer just didn't happen to people my age. In my mind it was only people in books and films who were diagnosed with it and even then, purely for the use of a convenient ending to tragedies.
I realise that this blog is very open but it is an honest recount of my feelings now and in the past and will hopefully be of use to anyone that may be experiencing something similar, or may want to understand how people feel about being diagnosed. I cannot reiterate enough just how much I encourage people to ask me questions if they have any at all, no matter how "odd" or "insensitive". Please do not hesitate to get in contact.
I'll be attempting to post a couple of times a week and I look forward to any response I may get.
Tuesday 8 October 2013
Introduction to this Blog
In two days time, an entire year will have passed since I was diagnosed with Acute Lymphoblastic Leukaemia in Gloucester hospital. The aim of this blog will be to help other people understand some of the experiences that teenagers with cancer might have to face and how they react to them. Roughly 5 teenagers every day are diagnosed with cancer and this statistic is only increasing, therefore this blog is also for young people who have been recently diagnosed and want to ask any questions to someone who has undergone the worst of his treatment.
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