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.

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.

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.

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.

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.

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.

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.

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!