Bone Cancer Research Trust Conference

On May 7th, my boyfriend and I attended the Bone Cancer Research Trust Conference in Leeds. I was extremely anxious about whether it would be worth travelling for 6 hours and paying for train tickets/a hotel room because I'm pretty broke as a student. In hindsight, I've realised this anxiety was actually about whether the conference would upset me, but I didn’t want to admit it to myself. Initially, I felt like we were kind of outsiders because everyone seemed to know each other, so we sat down and kept to ourselves for the most part, excluding a few people I had met previously for the charity calendar. But this was not the point of travelling all that way, so I knew I had to start initiating conversations. I found this surprisingly difficult compared to normal, which was definitely linked to guilty feelings and high self-expectations. 
This was mainly because the charity was founded by bereaved parents, and they were all present for the conference. I spoke to a few of them and felt both motivated and pressured, which then escalated into guilt. I felt motivated to start doing more for charity and continuing to use my story to help increase awareness about bone cancer, but I also felt pressured to be all-consumed by these things rather than balancing them with other aspects of my life. For a good few weeks, I could hardly think of anything but the fact that I have yet to do anything incredible with my life and that I haven’t got any solid plans to hold charitable events in the future. This was especially tough because it was a just before the end of my first year at university, and my art seemed pointless and dull compared to my cancer journey as it played over and over in my head. I knew that I would have to merge these two huge aspects of my life, but it was too late for that particular project. So it would have to be a personal summer project, not that I’ve started it yet with a move on the horizon. 
So, back to the conference itself. I gained a lot of knowledge about the medical side of both Ewing’s and Osteo sarcoma, including plans for the future and how we had got to this point in research and development. And I must say, I was quite motivated by the lack of research so far. It seemed that treatment would either work or have no impact, with no pattern to indicate why. This really struck home in the Q&A time at the end of the talk, when many of the bereaved parents made their voices heard. This was another factor that made me feel embarrassed and guilty, because my body had simply reacted well, and all the times I’d been called ‘brave’ sort of flashed before my eyes. I’ve never liked that phrase. I feel that it demeans the fight of people that have not survived and I find it quite disrespectful (even though I know that people mean the best). So absorbing this information perhaps deepened my guilty feelings to a point where I felt uncomfortable talking about my journey and issues, even though I gained so much valuable knowledge.
However, I came away from the conference with a brain full of new insight into the charity that I support and I have no regrets about attending. The guilty feelings were a very negative thing to have taken away from this experience, but they were balanced by positive feelings of gratitude for my chance at life and I felt humbled by the stories that I’d heard. It’s so easy to focus on the bad thoughts about a situation, but I know that going was the right choice. I always have a somewhat ridiculous expectation to meet people around my age that’ve had the same treatment and age of diagnosis at event such as these, which obviously doesn’t happen due to the uniqueness and rarity of cancer/cancer treatment, and I therefore always come away slightly disappointed. But hopefully, this expectation will one day be met and I’ll find a kindred soul. 
Overall, I found this conference educational in many ways, and I find myself more motivated to become involved in more charity work and functions from now on, including this blog! Also I hope everyone (if anyone?) that reads my blog is doing well!

Sophie xo

10 Things to do for a Child With Cancer

I recently wrote this list for my sister's blog, but it's completely relevant for mine- I don't know why I hadn't thought of it before! I think that advice type posts would be a really positive addition to my blog rather than just stories of personal experience, as personal posts can be difficult to write at times.

So here it is, 10 things to do for a child with cancer (applicable for anyone visiting during chemo/spending time with them during treatment and after):

• Bring their favourite foods

Their tastes buds will probably change throughout treatment, but favourites will probably remain favourites. I would take a favourite food of each flavour type, e.g. sweet/savoury/fruity/sour, in the hope that they would crave one of them. Also, if you’re visiting during chemo; bring mints! Certain types of chemotherapy give you an strong metallic taste out of nowhere and it’s awful. Really bad. Soft mints are the best because you can spread them around your mouth in the hope of combatting it. Even the nurses carry around mints for times of desperation.

• Hug them

As with all children, physical affection will help to calm them. A hug is the best thing to do when they are upset because it literally reduces stress levels (as oxytocin is released into our bodies, which reduces heart rate and cortisol in our blood) it’s science. The child is also around a lot of medical professionals who aren’t really allowed to give hugs etc, so they are really needed from family and friends. This will also hep to combat feelings of loneliness for you both. 

• Ask them how they’re really feeling and let them explain

This is really important for children, especially when all their medical decisions are made by their parents. They need to have control over some things, because they have none a lot of the time. By asking them how they feel about it and letting them explain why they feel this way, it not only allows them to become a more emotionally developed individual, but it lets you understand how to work through problems with their view in mind (which may understandably be very difficult to hear, but at least they know you’re on their side). It will also make you feel like more of a team when fighting this disease and make them feel less isolated, especially if you relate to how they’re feeling and work out how to improve their negative feelings. Note: ask them in a safe place where you know you can talk to someone straight after, as it will be difficult for you to hear from them. 

• LISTEN

I understand that this point is very similar to the last, but it is the most important thing to do. A child’s life has just been completely disrupted and so has yours. They have to listen to you tell them what treatment they need and how their life will change from now on. And thats a really impossibly difficult thing for you to do, and most children know this. They will be able to sense how devastated you are, and this might result in them not talking to you so that they don’t upset you; and this is very emotionally damaging long term. To avoid this distant relationship forming, it’s imperative that you listen to them. Try to really take it in what they’re saying and react well to it; its the most valuable knowledge you can get. This is also true for any siblings. You must just listen, without trying to force an opinion on them or complete their sentences, just sit and absorb.

• Use charity websites for first-hand advice

The fact that this is something I can advise is amazing in itself to me. When I was diagnosed, there was little to no help out there that we could easily access. Now there is a wealth of information available, the most valuable I feel being personal stories and blogs. Online medical journals are something you should avoid at all costs, whereas personal stories of hope are a very positive resource that can really help you to feel less alone and can even open up communication lines between you and people going through the same ordeal/people who have come out the other side. Even though no two cancer journeys are the same, many elements are shared and you can always find general tips and tricks to deal with these things, especially with the same chemotherapy type. There are often support line number on these sites, which would be really useful in times of helplessness and emptiness. 

• Adapt family days out to include them/siblings

This is something that often gets pushed to the sidelines when times get really tough and chemotherapy affects your child’s abilities/immune system/appetite. However, special day activities are really important in keeping the family unit strong; especially because of the impact on the siblings, who often get far less attention and can become redundant members. This can be inexpensive, which is such an advantage due to the financial strain cancer treatment can cause, you just have to get creative with it. I’m sure there are plenty of websites and magazines about having fun family days on a budget, and these will be starting points that can be adapted to suit your child’s capabilities. Often childlike ideas are the best, such as building a duvet fort and watching disney films in it. Although, it’s important to try and let any siblings have their own time with parents and their own time with their sick brother/sister, as they did before. Both this ‘alone time’ and having family days will help to maintain a level of ‘normality’ in the child’s life, which is so important considering everything that’s happening to them. 

• Celebrate small victories

When life is really hard, it’s important to realise how much you’ve had to fight your way through. I feel that the most positive way to do this is by celebrating a win. Whether that win is getting good blood work back or making it through a whole school day, it is important to recognise it. When the world hasn’t given you much to be thankful for, be thankful for how much work you’ve all put in to making these little things happen. It’s again important to do this for siblings/parents as well to recognise the fact that it is difficult for everyone right now, and achieving more than getting out of bed is a feat in itself. Celebrations can be so simple, like a family selfie or a ‘cheers’ at the beginning of dinner. 

• Keep a diary/sketchbook

This might seem a completely ridiculous thing to take up at such a time, but it really would help everyone in the immediate family (especially siblings). Writing down feelings is a really useful tool for processing your emotions, and getting them out of your head and on to paper is a proven form of therapy. This will help to stop bursts of rage in front of others, because you will be confronting your thoughts instead of ignoring them, which is psychologically damaging (especially in the long term) and causes emotions to emerge uncontrollably. A diary would also help you to keep a timeline of this time in your life, which might allow you to keep more structure and organise your time better- as you will be able to keep track of appointments etc. Alternatively, if you are not inclined to keep a diary, a sketchbook would be a good option. You don’t have to be an artist to do this at all, just doodling little comics of something funny that happened that day would be good as a mindfulness tool. This will also be really useful to see how your moods have been and whether there are any patterns you could try to ease, e.g. organising a coffee with a close friend the day before the child’s chemo bout because you know that you feel really depressed on this particular day.

• Maintain self-care

It’s so easy to ignore your own needs when a child is facing chemotherapy, because you feel that they are much worse off and that you cannot feel bad for yourself because of what they’re going through. This attitude will only help for a very short space of time. You can’t ignore how hard this is for yourself, and getting help with this is absolutely nothing to be ashamed of- would you think another parent/friend of a child having chemotherapy would be ok? Getting help is the best thing you can do for you and your child/children. This can be talking to friends/family, going to the gym to burn off some steam, or talking to a councillor online/in person (although making another set of appointments may feel like too much hassle). I would encourage taking some time for yourself at the end of the day when you’ve put the child/children to bed to practice mindfulness, which comes in plenty of forms- you simply find one that you click with naturally. Meditation might seem pointless to you, but going for a jog might seem like something you could incorporate somewhere.

• Learn to accept the post-cancer survivor 

This will be the most difficult thing to do on this list. There’s a global misconception that after treatment your child will go back to their ‘old selves’, and believing in this will be very psychologically damaging for the whole family. It is a life-changing event, and it’s awful; but you can’t pretend it hasn’t happened. You will have a lot of ‘what ifs’ and these will often turn into negative thought cycles, which is exactly what happens when you mourn someone. It took me a long time to realise that we were all in mourning of the ‘pre-cancer’ me. Everyone was, we just didn’t realise it; because of the pressure to be happy that I has survived. But a new version of me was born after cancer, how could it not? After all the treatment and emotional turmoil, everyone would change; you have to to cope. And it’s crucial to accept the new version of the child, because they will try to please you by pretending to be their old selves and eventually lose who they actually are. It’s important to remember that any child would change quite a bit during the actual duration of treatment, which for me was an entire year. So, you will have to mourn, but at least understanding this will allow you to eventually stop trying to get their/your ‘old/normal’ life back. This will be a lot better for you long term, and help you realise why you’re often feeling the opposite to how you think you should, e.g. devastated instead of appreciative.

I hope you find this post of use, even if it doesn't quite fit with my usual survival theme. Hopefully advice like this will make survival slightly less traumatic for children in the future!

Sophie xo

2015

The past year has been one of the most difficult in my life. I've not kept up with my blog because I just couldn't find the emotional energy, but I'm not going to avoid the problem anymore; I'm going to work through it post by post.
The beginning of this year saw me revisit my psychologist after about a year of not needing a session. And that was hard for me to deal with. I felt like all of my tireless work to become stable again had just fallen off the face of the earth. I felt ashamed of myself to go back, which I know now is not a healthy thought, and no one should feel this way about revisiting therapy. I have been really struggling, and getting help again was the best thing I could've done.
So, what really made me get help again were two huge life events for me emotionally. Firstly, my boyfriend at the time broke up with me (which I can now laugh about, what a waste), and secondly, my Dad had a nervous breakdown.
Now, these two things came at quite a close time, and I found myself in somewhat of a downward spiral. This was last winter, and so my sister and most of my friends had moved away to University, leaving me feeling quite alone. I know that I'm exceptionally good at hiding sadness- and I had let my walls fall down for this boyfriend, so I definitely could not allow myself to share my feelings due to the trust issues he left behind. So, I emailed my psychologist and booked myself in.
I visited her a few days ago, but I have recently moved to my sister's house and so our sessions will now be over the telephone. This scares me a little, although we did discuss that my mood would improve staying here rather than at home, so it should be enough contact.
I have stabilised enough now to be able to write about these things on here, so I have definitely improved emotionally. I feel that the past seven months have equipped me with more experience and knowledge of how to deal with exceptionally hard circumstances once more, although it did knock me back in my journey of recovery.
I discovered that your first relapse is terrifying. I took me so long to struggle back to stability, and crashed back in to depression so quickly. Everything sort of came rushing back- the guilt, the self questioning, the confusion... it was all so familiar that I just automatically switched back into those habits. And to make it worse, I felt like I had just deluded myself into thinking I was happy for that year. And looking at it now, I had. I'm in such a happier and healthier place now, and very thankful for that toxic relationship to be over.
I just need time. And now that college is over, I have time to deal with what's happened to my family, especially now that I'm finally completely over my first relationship.
I want to break up what I had considered one post into a timeline of posts, explaining the different emotions I've been feeling, and their link to the habits I learnt whilst coping with my cancer survival. It will be a hard journey, talking about my dad and my parents splitting up, but it's important for you and I to understand the wider impacts of a person having cancer on those around them- making sure not to give in to the guilty feelings surrounding it.

Sophie Hartley xo 

The Future

Over the past six months, my life has changed a lot. I will make another post about what's happened, but I know that it's going to emotional to write about so I need to take time to properly prepare myself.
It's made me think about the future and what I really want. I don't want to look back on my life with huge regrets and see opportunities that I missed. This is why I've been taking every opportunity to do things even though they're hard or embarrassing or disapproved of.
I know now that what I want to achieve in my life is to make people aware of the emotional side of cancer survival. And I will strive to make as many people understand as I can, because it's important. And each impact that I make will continue to make further impacts, so it will continue to create ripples.
I will continue to speak up about the issues, and hopefully my audience will continue to grow. In this way, the families who have been affected will have a better chance of seeing someone who's been through the same struggles, which may give them a greater understanding of how to deal with certain issues and what to avoid doing (e.g. trying to forget what's happened).
So now that I have more spare time, I' going to focus on spreading awareness even more. So stay tuned for many more posts to come!

 

Sophie Hartley xo

MOST POSITIVE POST YET

Hi everyone, thought I'd end the year on a positive post for once. Also a tad of self-promotion. 

As previously mentioned, I was involved in a calendar shoot earlier this year (and it was amazing to be a part of), the result of which is now on sale here:

 http://www.bcrt.org.uk/os_calendar.php 

It was such a brilliant idea of Elesha Turner's, who also happens to be a model for Models of Diversity; an agency who are promoting a very important message about 'disabled' beauty. They're pretty cool to check out too ( http://www.modelsofdiversity.org/ ).

I hope you're all feeling as well as you can through the holiday period, as it can be a difficult time. It becomes very easy to compare one year to another on Christmas day. I also feel for those having chemo right now, it's so centred around food and seeing people, two things you probably aren't truly feeling up for. If you're in hospital too, my thoughts are with you. 

Finally, here are a few shots from the calendar shoot:

Photos courtesy of Ian Randall, a super cool bone cancer survivor and photographer - http://www.ianrandallphotography.co.uk/

10 things you need to survive a bout of chemo

1 ~ Extra strong mints / boiled sweets, for when that awful chemo taste surprises you again. 

2 ~ Something that smells like home, maybe a blanket or a pillow. Something that smells like your house after coming home from holiday. 

3 ~ Your most comfortable clothes, or primark pyjamas if you can buy new ones. Trust me, you won't want to wear these clothes after chemo, so don't wear anything you're too attached to. 

4 ~ Your laptop / tablet / iPad, and ask a friend to add you as a user on their Netflix account. This will save you from the endless daytime TV on the 4 channels that actually work. 

5 ~ Your favourite CD, sometimes you will literally be too tired to keep your eyes open, and this will boost your mood with minimal effort. Maybe bring two, a relaxing one and an upbeat one, Beyoncés always good 👸

6 ~ Your favourite film, one that you can watch, fall asleep and chill out to. Audiobooks would also be good to listen to, again when you're too tired to move. 

7 ~ A selection of your favourite foods, one from each food group, eg your fave biscuits, fruit, crisps, soup. Because canteens are overly expensive. Keep these out of sight until you crave something though, sometimes the sight of food is enough to make you ill. 

8 ~ A diary, to record your thoughts and feelings. This will help your healing process. Alternatively, keep a blog, although the screen may give you headaches. 

9 ~ Determination. 

10 ~ Hope. 

Comment and share what helped you survive chemo :) 

Sophie xo