One year at Freedom

So today marks the one year anniversary walking through the doors of Freedom Church in Cardiff. A few months back I wrote a post called the faith that rocked which explains how I got there and what I found when I was there. However, I can not write something to mark this special day for me. Freedom Church has changed my life around completely and I am so so so thankful for that, and all I have learnt in this past year.

Pre Freedom I had just finished an internship which I loved but also it showed me how far away from the working world I am. I was exhausted from trying to do something with my days (only managing 1-2 days of activity) and felt really low because now I realised working even part-time was further off that I had hoped I had nothing to fill my days with. So I walked into church pretty broken, lost and feeling quite isolated from the ‘real world’.

I selfishly went to freedom looking for more people (and you know what that’s ok at my church). I wanted to have people around me incase my flat mates moved and I was left knowing no one in the city. Today I look at my Facebook friends and I’ve gained over 100 from Freedom Church. These aren’t people I just know of, or spoken to once they are people who I’ve had proper meaningful conversations with and could tell you more than just ‘oh they go to my church’. What I have found at freedom is way more than a community of friends it’s a GIGANTIC FAMILY all of whom are there for me, fighting for me and cheering me on. Some of these friends are now in Mombasa, Birmingham, and Rotterdam all places my church has planted a new church in the time I’ve been a part of the family. Some have moved away for new jobs and a new future (even one amazing family starting a new life in Australia.) Today we had 168 people in church and that really challenged me because it means there are at least 68 people I haven’t had a proper conversations with yet. It’s exciting because there are more people to meet, hear from and get to do life with!

This week was a challenging one for me because I’ve had the brown letter of doom anyone who has ever been on benefits at any point in their lives will know the gut wrenching feeling that is having to go through the whole process again. I’d like to consider  myself as a fairly positive person but this process just ends up making you feel depressed, like you’re a scrounge and you have to admit how you truly are on a day-to-day basis its gutting (as most of these things I hide from myself or try to put a positive spin on). However, I was challenged by someone to be a bit more open and honest, so I reached out to a few people within my church. One met me for coffee so I no longer had to sit on my living room floor in tears (Thankyou Zoe). Another called me to check I was ok and then took me out the next day to take my mind off it (Thanks Amanda). I had a wonderful new friend who also knows that brown letter feeling make me feel instantly better just because she knew the feeling. (Thanks Katie). The She:FOCUS group I’ve recently become apart of have all stood alongside me, with a special shout out to Jess who has said she will help me with the form. Yes I’ve had some none church friends also be there for me (Kate, Hattie and Rach your all awesome to.) However, the day this letter came through I have been so so thankful to have God by my side and placing amazing people around me.

I could easily tell you all about these amazing people in my life and what they mean to me. I had Hattie come and stay a few months back and I literally spent 2 days telling her about different people in my church and how INCREDIBLE they truly are but the blog post would just go on forever. I guess the purpose of this post is to say a huge THANKYOU to my wonderful freedom family. I’m so grateful for each and every one of you, for the endless hours of chatting we do. The catch ups in coffee shops, in cafe or in any one of our small groups. Thanks to you I have great role models, I have people who inspire me, and people who challenge me. I’m far from finished, I’m far from perfect but boy have I changed. I’m nowhere near as broken and isolated as I was. I’ve found faith, I’ve found community and I’ve found the most incredible family I could ever ask for.

God is good, all the time, God is good.

ps….Hey if your reading this and aren’t apart of my church family (this doesn’t mean I don’t love you any less). If your someone who is lost, broken or just searching for answers Drop me a message I’d love to help. If your someone who wants to know more about these amazing people ask me about them. If you want to know more about who this God is I’m talking about then ask me.

 

 

Smashed Glass

Well it’s been a fortnight since I last blogged (This blog was written yesterday whilst i visited the Tate). In this time I’ve gone through most items on the Fatigue list- including a complete burn out which resulted in me in another form of fatigue I forgot to mention the emotional 20p fatigue where the smallest thing set you off into floods of tears. That day I cried on the phone to my mum because I really didn’t know if I’d have the energy to get out of bed the next day let alone travel for my nephew birthday. I cried over the lack of sweetcorn at the harvester, cried that I’d spent energy resting waiting for friends only for plans to change. I cried because my glove didn’t go on my hand properly- I cried that my shoes were done up to tightly I couldn’t kick them off. It was the day I realised just how burnt out I was yet it came so out of the blue I wasn’t expecting it. Anyway I did go home and celebrate my nephew turning 2, I was exhausted and couldn’t do much to help party prep but I went and had 4 days where I got the car everywhere and didn’t have to cook or think about what I wanted to eat. Boy did I need it. Anyway back to now I’m currently sat in the Tate in London in a room I would say is my kryptonite (a room filled with radios all playing different noises) artwork by Cildo Meireles titled Babel

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I’m sat questioning why I sat down and why I’m choosing this spot to decide what I write about. Answers on a postcard to why this is… I’m a little stuck on what to write about because there is so much to be said I could write about how I’m missing out on meeting Gary Barlow tomorrow because I cant be at two places in London for two different cancer charities at once. I could write about how my cruddy immune system has meant this week I’ve been poorly- or how I got to catch up with some wonderful people this week  and the things they have taught me or about labels we as humans seem attach to people or even to ourselves. I could write about the impact Emily is still having on my life he tears I’ve shed today for her and that friendship. But instead I’ve chosen something that relates to the reason I’m here in the first place and why sat at the Tate I’ve felt the urge to write.

So on my way in to the Tate this morning I was drawn to a simple artwork of the everyday a pane of glass- this particular one is shattered yet not yet broken. I stopped to take a photo questioning why this I’m about to enter a world famous gallery yet this is the thing that stops me way more than anything in the Robert Rauschenberg and I love his work.

The reason I came here was I search of peace and quite time away time to be inspired and maybe even to reignite some big dream. Yet the pane of glass is still the best art I’ve seen all day. It’s set the tone it’s spoken to me in a way I never imagined (it’s also reframed some of the artwork  I’ve seen a thousand times for me today). See this broken pain of glass is all of us, me and you at the time your trying to hold yourself together you’ve not crashed yet goodness knows how because of all theses broken fragments are evidence of just close you are to falling apart. Yet it’s beautiful isn’t it? Just how strong glass has become to be able to stay together and I couldn’t help but be in awe of how the light picked up different aspects and turn this broken window pain into a thing of beauty.

Now the reason I am in London is to help open the eyes/reframe perceptions of the amazing trustees and senior team at CLIC Sargent about young cancer survivor/patients and social media. Now you maybe thinking how is she leaping from glass to social media but bare with… We live in a world where everything is at our fingertips we can connect with anyone anywhere in just a few clicks! This week I’ve spoken to friends all across the world through social media and for that reason I think it’s great! However it’s got its draw backs to- we all present the best versions of ourselves through it and have become a world of statuses, and tweets often tweeting before thinking… However, we also look through these rose tinted glasses at our friends lives and compare ourselves to people the other side of the screen. Thanks to platforms like Facebook we have kept in touch with everyone at all stages of life, like school friends whom 30yrs ago we’d have probably lost touch with. We now we see our acquaintances who are up and coming models, or traveling around the world, buying houses and got a family on the go. We’re constantly comparing ourselves and this needs to stop. Why? Because its not always 100% real. What’s the use of posting that fabulous beach holiday photo to keep up appearances when on the inside you feel like this broken piece of glass? We also never see the full picture we have no idea that 2 mins after that beautiful photo of the family the baby isn’t screaming at the top of its lungs and sleep deprived mum has had enough. We don’t know what that loving relationship plastered all over Facebook actually is. Flipping it slightly we don’t know how Jo from down the street will feel after reading the news your having a baby when she has just had to come to terms she can’t have children. Or that 2 months earlier the couple sharing this news lost a baby. We don’t know because it’s become unsociably acceptable to share these things (although at times we wouldn’t want to either) and then sometimes we have enough and share these things only to loose followers or get into a debate.

I am sat listening to babble realising its purpose- its demonstrating that we live in a noisy and crazy frenetic time now finding a small space of peace and quite is hard to find (especially in central London). Im noticing the people who are walking around head deep in their phones, or sat on the tube refusing to say hello- yet we aren’t designed to do life alone, we aren’t designed to not have conversations with people and create bable background noise. We’re are design to make connections with other humans and do life with them (the good, the bad and the ugly).  We aren’t designed to aimlessly scrawl through post after post, we aren’t designed to post EVERY thought (we all have that one friend) yet we are designed to do life together (sometimes virtually through social media). Tomorrow in the meeting we are going to be framing how as cancer survivors we have to make choices that others might never have to and how seeing a status about being pregnant or having an amazing night out might effect us emotionally at different stages of treatment. Im not saying in any way shape or form we need to stop posting on social media, nor would I ever want someone not to post good news. However a clearer more well rounded view of normal life would be nice sometimes.

I got thinking about that pane of glass again after seeing this img_1187by Louise bourgeois. I thought about how for the glass to be fixed and made new it’s going to need people to help replace this pane of glass and maybe this glass all broken will be recycled and made into a new pane eventually. But it also got me thinking about how it’s people that help us when we’re in this place of near breaking point. I want to say how its ok not to be ok at times and need a helping hand all you need do is reach out and ask. You don’t always have to post, and your posts don’t always have to only be the glamorous you either share the real you- its your real friends that will love you regardless.

Finally some key points to this post

  • If your not ok- thats ok. Find help wether that be a trusty friend, a helpline or a family member- you will be surprised just how many people care about you.
  • Start thinking before you post- do you really need a status for this?
  • If you get annoyed by a post ask yourself what are their intentions here? Am I overthinking or are my feelings heightened here?
  • Stop only showing a one sided view of your life- make it ok to share how your feeling- wether that be through a direct message to someone or a status its ok to be human!
  • Take some time out from social media from time to time, live in the moment you never know when you might stumble across a broken piece of glass that might speak to you in a way you’d miss if you’d have been attached to your phone.

 

Chronic Fatigue- A cry for understanding.

Hello 2017,

This year one of my many new years resolutions is to stop neglecting my creativity and in turn that means to stop neglecting my blog. I have an aim for 2 blog posts a month… I’ve currently got about 100 (No jokes I’ve counted) blog post ideas. However for the past two weeks I’ve struggled to know where to start- should it be about my new years resolutions, do I continue to write about the Cancer world or should I move onto something else, do I write about my learnings from my awesome church or do I do a little of all? Possibilities are endless… but then I got hit by a bus (metaphorically not literally) that is Chronic Fatigue syndrome and its knocked me for 6. After a conversation with a friend I realised most people don’t ‘Get it’ so this post I hope will explain a little what its like, and my experience with it. I also hope it will help my friends who suffer with it explain it to others but also give them some advice on how to manage it in the future.

So to start I should probably explain why people don’t ‘Get it’…. This week un-intentionally I’ve had people respond to me saying my chronic fatigue is playing up with ‘yep I’m tired too.’ I don’t want to be a pity party or to ‘moan again’ (also had that this week too) but I do want to share with you the difference and why saying ‘I’m tired too’ just isn’t the same comparison (however, I do get that your tiredness does exist and sucks too). Chronic fatigue is more than just tiredness- It’s a complete exhaustion an inability to do normal tasks and literally everything is an effort. (That’s the short answer anyway)

As you may know I was diagnosed with Very Sever Aplastic Anaemia in 2010 and had to have a bone marrow transplant immediately to save my life. Many who have had cancer and received chemo or radio will tell you about the fatigue being a huge issue and its hard to even describe it because fatigue is way more than just being tired for some this lasts for a few months others it just doesn’t go away. Over the past 6 years I’ve had chronic fatigue syndrome (chronic meaning extreme and persistent lasting over 6 months) and I’m way way better than I use to be but doesn’t mean it’s disappeared. I’ve learnt a lot and realised there are several parts to my fatigue some days I’m shocked because I can go all day without using the words ‘I’m tired’ but its rare these days happen. I’m fairly sure if you’ve spent any time with me over the past 6 years you would have heard those I’m tired words more than any other it was my catch phase for a while (but I try not to say it).

Before I go on to explain what the types of fatigue I suffer are. I want to explain a fantastic way (I often use) to explain what its like living with an invisible illness.  It comes from the fantastic Christine Misarandino it’s called the spoon theory. This sprung out from a conversation with her friend about her Lupus diagnosis (something my eldest sister has and we’ve often talked about the similarities between what we both experience). You can find the full article here.

Basically when you have a chronic illness like Chronic fatigue your forced to make choices to enable you to get through the day. Unlike healthy people who can enjoy limitless life without choices we don’t get that luxury. Normal people begin their day with a limitless number of options however life with a chronic illness means your options are limited, you have a certain number of spoons (the visual aid Christine uses). So sat in this café Christine hands her friend 12 spoons (her friend automatically asks for more but it doesn’t work like that so she said no.) She then asked her to begin explaining her morning routine she explains how each small task like getting out of bed would cost a spoon, having a shower another spoon, getting dressed another, the stairs another…. Thing is you could be through half your spoons before you even leave the house. In my case- Resting and eating food can replenish spoons (sometimes) but it depends on the type of fatigue. Her friend soon realised that skipping lunch, standing on the train spending too long typing would all cost spoons. It’s hard to balance life when your spoons are limited you have to choose between things like cooking and doing the dishes, or chores or having fun. You could be out of spoons by 1pm or it could be 9pm you just don’t know but once they are gone they are gone. Some people can borrow spoons from the next day, for me I can’t because my spoons vary day-to-day sometimes I don’t know until I’ve started my day how many I’m getting. I also don’t know when I might need some extra due to an infection. You learn to have a spoon in reserve at all times so you have enough to get you home if you need it.

spoontheorymilkandhoney

My life pre diagnosis was crazy, frenetic and super fast pace. Lazy wasn’t in my vocabulary. During my school years I would sometimes leave the house at 5.30/6 to go swimming, then rush to school have a full day often with a school club after followed by an evening activity whether that was swimming, orchestra or bell ringing there was ALWAYS something. Most nights I wasn’t home before 10. Lazy I wasn’t. It’s incredibly sad for me but I know that life is dead. I’d never be able to do that again. I’ve had to learn to accept a slower paced life. Its horrible and I will forever be learning how to balance it but it’s not something  I’ve had to adapt to. I hope that the normal people out there reading this understand just how much I’ve had to give up if you know me at all you know I hate having to say no, I hate missing out but I can’t do everything I have to choose what I want to prioritize each week and then each day. Sometimes I can do a crazy busy week other times one day will simply wipe me out (and by wipe out I literally mean it could take weeks for me to recover) problem is I often don’t know until it hits me which way it’s going to be. I want to let you in on what my life is truly like but please don’t think it’s a cry for sympathy because its not it’s a cry for understanding.

I want to tell you about my most resent experience with Chronic Fatigue Syndrome. At Christmas- it’s always hard the fast pace of life, buying presents in a way crazier shopping environment. This on top of a change in routine and a crazy busy few days for me and my family. I love it, however, its super draining, the almost 2 year olds 6am wake up doesn’t help (love him but sleep is a luxury). I would have loved to have stayed a bit longer because this year was certainly less draining than last year. However, the build up of lack of sleep, plus the pace of life I knew I needed rest and soon else burn out would be soon around the corner. I also really wanted to enjoy new year as my church threw a new years eve party. I came home and bed was home for me for the next 2 days. I had been invited to a friend’s birthday meal during the day on new years eve but I had very limited spoons so had to prioritise and stay resting (and colouring) on the sofa till moments before I needed to leave. I loved it and had a great time however, I got home went straight to bed and didn’t resurface till gone 12 the following day. I suffered brain fog fatigue all day and my flatmate cooked dinner- however I was too exhausted to do the dishes in fact I struggled to keep my eyes open during dinner. I’ve been slowly spiralling for the past 2 weeks. I’ve needed to be in bed (without screens) from 9pm most nights and despite falling asleep quickly I have been struggling to get up much before 10 (the only exception been when my flatmate has come in to wake me for church). The other day I went to Bristol for an afternoon volunteering with CLIC Sargent. I rested in the morning because I knew it was going to be a longer day. However, once I was home I stupidly decided to eat tea from the sofa (I should have gone straight to bed) I couldn’t move, the immobilising fatigue hit and it hit hard.

Have you ever felt stuck in your own body? No? Well let me explain. You lose the power to move because your that tired exhausted your brain disconnects from you muscles. Your telling your body to pick up a glass because your thirsty and it is literally 30cm away but your so exhausted you can’t get your arm to move. This was me on Tuesday night. I had to nap to be able to move up the stairs where in the painful fatigue set in. I sit on my bed unable to move. I sit waiting for the pain killers to kick in just to be able to get undressed for bed which takes so much longer than normal. I know that tomorrow is cancelled and any plans in the day need to be wiped because I would be unable to get out of bed at least in the morning. Finally I make it to bed- this process took from 9pm till 1 am. All just to go to bed. I turn all alarms off and attempt to sleep despite the pain- 12 hours later I wake up- not refreshed but exhausted so spend the next 5 hours in and out of sleep. The following night I’m in bed by 10 and sleep through till 12.30 yet woke up exhausted. Yesterday I spent the day in pain because of fatigue and unable to do the things I had planned. Now do you understand the difference between being tired and Fatigue? Most days I wake up as tired as normal people go to bed yet I have to live on that. My fatigue is not solved by sleep. Napping doesn’t always help because most of the time it’s not tiredness its full body exhaustion. I’ve no idea how long it will last but for now my chronic fatigue is bad. So sorry if I flake or cancel sorry if I can’t do what you expect me to but welcome to my life.

I’ve decided to go on and write about the 11 different types of fatigue I get (I may have forgotten some), some are rare some are I have most days but I’m going to try to explain them because I think its important to know why when I say I’m tired- I’m really saying I’m fatigued and basically exhausted.

Basic Fatigue

This I have almost every day. I wake up tired, I have to pace myself and rest often. I have to priorities what I want to do- If I push myself I know it.

Dementor Fatigue

This is people- and noise, multiple conversations going on at once. Yep you get it- like dementors (from Harry Potter) this sort of activity drains me massively it sometimes feels like life is being sucked out of me (hense the dementor). In group situations I have to be careful where I sit as if I have noise behind me I get drained. When I’m tired I find noisy places more draining. I also struggle to have conversations if multiple conversations are happening. I used to be that annoying person that could tune into multiple conversations at once- now my brain tries to shut out irrelevant noise but this is hard. At times this sort of fatigue leaves me unable to hold conversations and my body wants to shut down.

Immobilising Fatigue

This type is probably the hardest for me to deal with its one of the less common ones now thankfully (however early stages of treatment it happened a lot more) but when it strikes I sure know it. It can hit at any moment and you have no choice but to stop and sit down. It can literally paralyze you. You brain to muscle movement connection disappears and your trapped inside your own body.

Brain Fog Fatigue

Thinking takes longer, finding words is harder and it basically feels like your eyes up are covered in a haze that nothing gets through. Conversations can be difficult but you muddle through best you can.

Forgetful Fatigue

You know when you go up stairs but forget why you’ve gone- yep its this but with literally everything you try to do. A simple hello from someone is distraction enough and you lose your trail of thought. Complete conversations can disappear from you brain and boy is it frustrating.

Over Tired Fatigue

Insomnia if I miss bed time it’s almost guaranteed that falling asleep will be difficult and it doesn’t matter if there are no screens it could mean I have a seriously late switch off time and if I’ve got things planned the next day guaranteed it will come alongside at least 2 types of fatigue.

Over Doing It Fatigue

If I push myself too much or have too many busy days without allocating enough time for rest I’m way more likely to get burn out and the fatigues above at a sever level.

Poor Sleep Fatigue

Sometimes I don’t get enough sleep, sometimes it’s the quality of sleep, sometimes it’s the way in which I’m woken up but all mean I’m starting my day on even less energy than I need so will really have to be strict with what I do (this is what makes me flaky).

Infection related Fatigue

Depending on the infection will depend on the level of wipe out- but even the smallest of infection will increase the number of hours I need to sleep/spend in bed. Big infections knock me out for weeks.

Build up Fatigue

This is something that I suffer with most weeks, it’s where you keep going and keep going and then have to have a whole day resting because the basic fatigue along with all the other types just accumulate till you have no choice but to write of a day and spend it in bed.

Burnout

Fatigue has hit a new low, you have had a few days of build up Fatigue but now you haven’t even got the energy to shower and the shops which are only 900 steps away (yes my pedometer told me) are just too far if you’ve not been sensible and got in ready meals your living on takeout.

However despite all of these types of fatigue I deal with I manage it all pretty well most of the time. It’s all about Planning, Prioritising, and most importantly Pacing. Its tough but eating regular balanced meals and having a small amount of exercise each day helps- even if it’s just that 900 steps and back to the shop. I have a un written rule that I have to leave the house at least every other day- trust me it helps your mental wellbeing, your physical wellbeing and helps you get a better night sleep too. Don’t just take my word from it… Watch this.. Dr Mike Evans explains what you should be doing if you have fatigue in a way that would take me another million years.  So I will leave you with this….

 

CLIC Sargent Takeover Day

So my day (on Friday) began at 5AM, with a ridiculously early start (earlier than I even needed it to be) but I woke up like a kid waiting for Christmas. However this mid November morning and there are no presents to open just a early train to catch so I got ready for my day and spoke to my half asleep flatmate as I left my house at 6am. Where am I you ask? I’m spending the day at CLIC Sargent HQ in London. Why? Well to take it over obviously!

The idea for today came up quite a while ago in a Participation Group meeting (I’d like to say it was probably my idea but I can’t even remember) Kate Lee (our usual CEO) Had previously taken part in takeover days at a previous charity and was also keen to see it happen at CLIC Sargent. We looked at ways in which it could be achieved and when would be best today (Friday) seemed perfect as there is a national #takeoverdaychallenge with the children’s commissioner and so plans were swiftly underway and today became a reality. So how did we hear about it?? Well it was decided that it would be offered to members of the YPRG (CLIC Sargent’s young people’s reference group, made up from people they have supported to inspire and influence the work and direction of CLIC Sargent) as it’s a big step to take both for us and the charity so this seemed like a good group to test it. So a post was put up on the Facebook group and emailed out to us all too offering us the opportunity to take part. In this post we were asked to express an interest for a role which were also listed. These roles were then allocated based on our expression of interest and so here we are taking over.

On our journey to London our Facebook group was alive- with so many exciting comments from hey guys anyone seen my company car (CLIC Sargent is a charity no-one has company cars). To hey as CEO could someone go get me a coffee. It was fantastic especially to see emails from our social workers getting involved too asking for pay rises. Definitely the best way to start any day!

takeover

We began by having a briefing about what to expect from the day and got placed into our roles (at the end of the day we will do a sort of hand over back). We then had a tour of the offices as some of the group hadn’t been before and so we could get to grips with the teams and which director was responsible for them.

My role for the day has been as the Communications Assistant I have been able to learn about the role, which includes pulling together the daily news stories and sending them out across the whole of the charity. Dealing with requests for real life stories and quotes for news stories. Helping the teams to share their messages digitally and so much more! I don’t think I’d put much thought into what a difference one role makes to a charity I think I’ve always viewed it very much as a whole (despite interning with the charity last year where I developed a good understanding of how the charity works). My tasks for the day have been to conduct interviews with the CEO Fay Turner-Paxton and advisor to the CEO Kate Lee as well as the Director of Services Pete Jerrett and the advisor of Services Dara De Burca. Write a blog post about the day and a bit for the website, and to try to make contact with some local press to send out some content about today. Hopefully I’ll find the time to fit it all in but this is just such a small nugget on what happens within the charity on a day to day basis. The time really does fly!

Once I got to grips with the role it was time to spring into action and come up with some snappy questions to ask the CEO and Director of Services. I decided to be a nice journalist not asking too many difficult questions but it went really well. I learnt a lot about what it means to be a part of the day for them all and how already having young people involved has made a difference. I asked Fay and Kate how they have found today- Fay commented that she was quite nervous about how today would go but “it’s been a bit nuts and Kate has been amazing”. Kate Lee commented about how amazingly Fay has handled all of the people coming and saying ‘can I just have 5 minuets- and I’ve spent most of the day tweeting and being on my Facebook!”. Fay says she has learnt about how busy the charity is, a lot about how the charity works and has had some really good tips about chairing meeting and how to manage people.

dara-pete-and-me

Pete chose to become Director of services because he understood what the role was and has had a lot of help and support from the services team over the past 3 1/2 years of treatment. Dara said that “Pete has already been able to point out areas within the policy reports that hasn’t been seen previously and how they could have been presented better and he has asked some really good questions which is so exiting. Pete commented that “My hope for the future is that today goes so amazingly well that everyone thinks yes- lets do a takeover week lets involve the children too and that will agree that we want more participation opportunities like this.”

I had the unique pleasure of sitting in on the executive team meeting for the first item agenda purely as an on looker and to be able to write about it- and I have to say how immensely proud I am of all of my friends. It was incredible to see them place themselves into their director roles and so eloquently  getting their points across. However, looking round the table I saw the exact same look of pride on every single member of advisory staff in the room. Rachel raising the first item’s agenda so clearly everyone got on board straight away and the moment Brad (communications manager) spoke about an introduction of a new social media platform I saw smiles across the faces of so many. I’m bursting with pride of my friend Fay who herself would admit to usually being the quite one managing the meeting, keeping it to time whiles showing she was listening to everyone’s comments by summarising before moving onto the next item. It was like she had been doing it for years! Libby (Director of income and engagement) asking questions on how it would relate to fundraising. Aimee (Director of HR) answering Pete’s question about training for staff and raising issues of bridging the generational gaps. Honestly you wouldn’t have believed they had just had one hour of prep before this meeting because it was as if it was their normal jobs.

I’ve really loved being part of this incredible day and I can not wait to be part of the developing group for the next one to be a success for other children and young people to #takeover. Just would like to say a special thanks to all of the staff and young people that took part today

CEO- Fay Turner-Paxton (Kate Lee)

Director of services- Pete Jerrret (Dara De Burca)

Director of Finance and coparate resources- Connor Grant [WFH] (Kevin O’Brien)

Director Income and Engagement- Libby Welch (Rachel Kirby-Rider)

Director of People and Learning- Aimee Jordan (Jane Cooling)

Assistant Director of Planning strategy and performance- Rachel Blackford (Jenny Turner)

Impact and Performance Analyst- Tish Annand-Beanse (Michelle)

Project manager and EA to CEO and Chair- Seren Hughes (Diane Swanton)

Communication Manager- Bradley Gudger (Sally Archer)

Communications Assitant- Me- Ceinwen Stone (Rebecca Bourley)

And to our amazing participation team Rebecca Horder and Tracey Cosgrave.

Young Lives vs Cancer CLIC Sargent’s new brand.

So this blog post is about the amazing charity CLIC Sargent, why I love them and my involvement in the exciting NEW BRAND! Yep heard it here first (unless you saw it through the CLIC Sargent post- but hey give me some credit please)!

So since my diagnosis 6 and a half years ago a lot has changed my old life is no more and you know what its ok, but me being ok with that is thats in a large part thanks to the wonderful CLIC Sargent. A few months back I was sat in my consultants office explaining what I’d done over the 6 months since he last saw me. I explained that I’d got even more involved with the charity and in his words “ohhh your ‘giving back'”. At first it shocked me a bit because thats not the case at all (ok maybe it was to start with) but its way way more than that. Let me get this out of the way now- I now live a life full of complications that may get better one day but for now these wonderful complications hold me back from a normal 26 year olds life. I have chronic fatigue (which comes in many forms but generally i wake up as tired as you go to bed) a fun immunodeficiency thanks to chemo (my immune system doesn’t work properly) I have non-epileptic fits (triggered by fatigue and stress) and other things that effect me occasionally too. However this isn’t a sob story- ohhh feel sorry for me, because I have a tone going for me too and that wouldn’t have been possible without CLIC Sargent’s participation service.

The day I got my diagnosis I honestly believed I’d have been fixed by the end of the week, so to sit here writing this it makes me think about how far I’ve come. My CLIC Sargent social worker Jude was (and still is) a huge part of my life, without her I would never have returned to university, I wouldn’t have got the mental health support I needed, I wouldn’t have known where to start when it came to my finances and I wouldn’t be where I am or who I am today without her. I’ve now graduated uni (yes it may have taken 6 years but I did it) I took on a internship to see how I’d manage in the working world (answer- not quite ready yet). I’ve set up a life for myself and I’ve been a big part of some big decisions for CLIC Sargent thanks to Participation. So your probably wondering what participation is- basically its children and young people being able to inspire and influence the charities decision making. How awesome is that?!

I’ve done a lot with CLIC Sargent, from interviewing staff (all levels) to heading to parliament to tell those MPs what they need to look at. I’ve been involved with some tough decisions like the closure of MSH but also some massively important ones like young people’s assessments, the change in the participation service and most recently the NEW BRAND! But its more than just ‘giving back’ and why- well because over the years I’ve been able to develop skills that I’d never have done as a benefits bum (no offence intended I promise) I now tell people now that I’m a government sponsored volunteer (thanks to not being well enough to work full time). I know how to sit and be heard in a big board meeting, I know what makes a great answer to the question why this job, why now? I know how long and how hard applying for funding is. I know and understand how a charity works- so there for I understand how a business works. I am able to passionately tell an MP why they are wrong and what they need to do to fix something (and they listen). I am able to influence and see change happening and keep influencing work along the way. I am able to creatively come up with ideas, work through them and see the outcome of my idea. I’ve had more experience and opportunities than most of my school friends and my CV looks immense because of it. So never tell me its ‘giving back’ and they only want to hear your story- and you shouldn’t make your life about cancer (it isn’t) because CLIC Sargent care so much more than that and I’m not the only voice they listen to- they listen so they can improve the charity and its services for all in the future.

Here’s a picture of the YPRG from our last meeting where we were all getting behind our newly appointed young person trustee Jason Loo.

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Most recently I’ve had the pleasure of being involved with the REBRAND! A few years ago we pointed out CLIC Sargent- supporting children with cancer. Did not represent all of the people they represented I was diagnosed aged 20- I was not a child. So they added the supporting Young People bubble to their logo which wasn’t used for most things. The flower on the logo often wasn’t liked by many of the boys and some girls too, but without the money we were told a rebrand was out of the question. 1 year ago we got a wonderful new CEO Kate Lee, boy is that woman a machine! She has done SO SO SO much and she is super involved with the YPRG (Young people’s reference group- part of participation). 6 months ago she came to see us (as well as the children’s group) with a brand workshop- to get the feel of what we thought of CLIC Sargent and where we wanted it to be. I assumed this was the beginning of years and years worth of work never did I think that in just 6 months we would be launching a new brand! The YPRG meets every 6-8weeks and guaranteed at each of the meeting we’d have Kate or a member of the redesign team pop in to ask us our thoughts and give us an update.

Heres what the logo use to look like…

A few months ago we were given first looks at the brand proposal and we were able to give our feedback about the language, look and feel to the new brand. I love it!!!

Now like anything new your never going to get 100% of people on board right away- Change is hard, really hard! However, this new brand has been needed so much with the charity (like all charities) having a tough time financially, struggling to be heard in a sea of non profit organisations out there, CLIC Sargent was not being bold enough. CLIC Sargent was seen as a mumsy ohh we support charity- but its NOT- CLIC Sargent is a charity that is Strong, it fights for every single one of us/its service users, they are a charity that become our advocates- give us a voice, shout and demand change when its needed, they are there on your darkest day and they are there on your best. They are there to make sure when its needed palliative care is in our control. They are there to help us not just survive but THRIVE. CLIC Sargent’s new brand was not only influenced by us it is now bolder, puncher and most importantly more CLIC Sargent.

CLIC Sargent and its amazing CEO Kate Lee have managed to get the new brand to this point on just £5,000 by begging, being cleaver and asking a lot of favours- The reason for this because supporters money is better spent on the services it provides. I love the new brand and I’m so proud I’ve been able to be part of the group thats got it to where it is today. I hope you love it as much as I do (and if not with time I know you will!). Here’s one final picture of the YPRG.

Hands in #TeamYoungLives on 3….

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 Support young lives against cancer. Text YOUNG LIVES to 70500 to donate £3 to @CLIC_Sargent #YoungLivesvsCancer or check out the website at http://clicsargent.org.uk/

The Faith that rocked.

Don’t switch off because I’m gonna be talking about religion read this anyway cuz it’s about more than just that… So where to start?? Well it has to be Emily. If you’ve read my previous blogs about her I apologise you’re gonna be hearing more about her but I’m so grateful for all that she has done for me and I can’t even thank her. I don’t know if anyone else has ever experienced it but if you have that one friend that has changed your life forever and they are still about phone them right now and say thank you! Life is far to short not to!

So those of you who have been in my life in the past few weeks or months I’m sure I will have spoken to you about Freedom Church but this post is going to explain a lot more about it, and how I ended up there and why last Sunday I chose to get baptised.

I grew up in a Christian household and went to church (St Stephens) every week in my home town of Redditch and I always believed in God that has never changed. Many points during my childhood/early adulthood I got angry with God for what he did and didn’t stop from happening. I just didn’t get it, I didn’t understand how this God could create a world where bad things happen. I got confirmed but that was more because I wanted to have the bread and the wine. I went to a church youth group which was part of Emmanuel church during my teens where we would explore Gods word a little more but if I’m honest I went for the friendship rather than the religion. I went to church to tick a box and say yep been this week I’m a good christian but I never really listened or understood being a christian is so much more than that.

When I was diagnosed with cancer-ish I had people say they were praying for me but honestly I wanted to knock them out (couldn’t because I had no energy) I was so done with religion. How could God exist if he was going to put me through this I thought? I didn’t want people to pray for me because at that point I’m not sure I knew if I even wanted to get better or not- I was so tired and so weak, my immediate future had been taken away from me. I didn’t want God in my life but I still believed in God. I was told by my consultant that I couldn’t go to crowded places and that church was an infection risk so I stopped going… After treatment I really struggled! I have a great cancer friend called Luned who really tried to get me back to church, taking me to #convinced?/#cardiffstory but I just wasn’t ready for it. In 2013 i made a film along with some others about faith (now I look at it and its so cringey and so not where I’m at now) have a watch https://jtvcancersupport.com/2013/06/faith/ I was in and out of church only going for special occasions.

So almost a year ago (a year ago on Monday) I lost an incredible friend to cancer- His name was Peter Wilkinson- he worked for the amazing JTV Cancer support (the site I just sent you too). It was heartbreaking, I found out at the end of a rugby match (anyone who knows me knows how passionate I get) and I went from this high of emotion to utter despair. We knew Peter’s life would be shorter thanks to his brain tumours but I wasn’t prepared for how hard it was going to hit me. I’ve lost many cancer friends over the years and while there were a few I’ve really missed Peter (like Emily) was in a different league. I never went to cancer friends funerals but thanks to some amazing friends I was able to go to Peter’s funeral. This may sound weird but Peter’s funeral was a dream funeral. It was perfect for him, they talked about the Peter before cancer and him growing up, they spoke about Peter and his life with cancer (#tumorhumour #boom) and Peter & Debs (his life with his wonderful wife). Peter was described as superman, because he was human most of the time but superman when he needed to be. Throughout all of his eulogy they spoke about how Peter found comfort in his faith which left me a bit confused yet comforted How could Peter keep his faith when I lost mine? Yet I was really pleased he had faith because he was comforted in his final weeks by this. The worship was more upbeat than I was use to but I loved it, we left the funeral to Jump Around (House of Pain). I left feeling comforted that Peter was in a better place now.

Over the next few months I didn’t really think much about it until I spoke with the wonderful Emily. One of my final conversations with Em was about faith, I talked to her about Peter and his amazing funeral and how I didn’t understand how she, peter and Luned kept their faith throughout. She pointed out it wasn’t easy but a work in progress, but then in true Emily style she sucker punched me. So if you found this funeral so amazing, why haven’t you seen this as your sign to find a church that’s right for you? Wow ok Em don’t hold back will you. Oh and how right she was, so I spent some time at home googling local churches and reading about them and found Freedom Church was literally 2 mins away from me. I looked on their Facebook page and saw that a friend from Uni liked it… so then obviously stalked Ste on Facebook and saw him on stage behind some drums Wow I thought he’s loving it and pretty involved. (I knew Peter had been in a band so this seemed like that sign)  So I watched a few preaches on their Facebook page and was like ok yea its pretty relevant I’ll go see what its like. I went to tell Em that i was going to go on Sunday but she had been moved into the isolation rooms so I decided I’d tell her after I’d been what it was like.

So Mothers day 2016 I walked into Freedom Church Cardiff for the first time. Wow do those guys know how to welcome you I was greeted on the door by Andy, then took two steps and got a flower (thanks to it being mothers day) then Ant saw me looking a bit lost and greeted me and asked if it was my first time in Freedom. I explained I knew Ste from uni and that’s what brought me- ste was on the next set of doors and as soon as he saw me he gave me a huge hug. Next thing i know I’m sat on the front row next to Ant and Ste. Now I’d prepared myself that it was going to be different from the traditional church I’d been use to but Freedom was something else- I’ve spent a long time working out how to describe what its like and really the only way you will ‘get it’ is to come but it’s basically like going to a gig followed by the most inspiring relatable religious ted talk you’ve ever experienced. Ste jumps during worship and I’m sure he was jumping above my shoulders. But wow did it hit me, I was in tears in the first worship song because I suddenly felt so connected to Peter again, I knew it was the sort of place he would have loved. I couldn’t wait to hear when Em was up for visitors so I could tell her all about it. The preach hit me like a em style sucker punch and at the end of the preach they ask if anyone would like to respond to getting to know this Jesus they talk about or If you’ve been away a while and you are recommitting back to the journey with Jesus. I had felt so moved I couldn’t not respond- but I originally thought i was responding to coming back- Its only now i realise how wrong I was.

The following Saturday I was at a volunteers day for the Ellen Macather Cancer Trust- which takes young people in recovery from cancer sailing, something I’d managed to convince Em to sign up for. It was the first time I’d seen people who were at Peter’s funeral so it brought back some tough emotions. At lunch they have a room with a memory tree- I wrote a message for Peter and put it on the tree- but felt really uneasy and had to take a step back in the afternoon sessions, after I was sat watching England v Wales in a pub in Birmingham with some- it wasn’t going well for us (welsh) and i looked down at my phone to see a message from Donna- Emily’s mum ‘Emily died at lunchtime xx’. I couldn’t breath, I was so overcome by grief I could not believe it, Emily’s death was so unexpected for me- despite me getting ‘the look’ from Nargal (our tct doctor) last time I tried to visit- Em was gonna pull through, she had so much to she wanted to do. It was so tough! I was such a mess. I hadn’t got to tell her i’d gone back to church. I couldn’t understand how someone with so much purpose and direction could die and there was me bumbling through and I get to survive. The next day I decided I would watch church online (Yep Freedom are also online!) I sobbed most of the way through it because now church meant that bit more. Church was hard work over the following few weeks but I kept going and started going to our small groups (catalyst groups) mid week. Em’s funeral was hard I wasn’t ready to say goodbye to someone who had made such a big impact in my life. Rev Rhiannon Francis spoke about her relationship with Emily from her hospital bed and being with Emily’s family as she passed. She described how Emily’s soul could no longer be contained I at this point visualised this cracked pot with a purple light peaking through. Soon after we were shown a purple crystal I knew that’s what i was seeing inside this vessel. Em shone, she was bright (smart and her personality) she drew people in and defiantly left you in awe. The sermon/eulogy made me realise that Emily had something I didn’t- a real relationship with God. I didn’t get it at this point still but I decided i needed to push in, listen and act upon what I was learning at church until I did get it.

Fast forward to about 6 weeks ago and I’ve been going to church for a few months and all this time I’ve been learning- looking at how others could open up their bibles and pick them apart. I found reading it like reading Shakespeare- hard and very easy to put down. Then Karin Cooke one of our wonderful pastors did an in-house preach on John 15 about growth. We were shown a picture of a dying withered branch (in this moment God spoke to me and said right now this is you- but it’s not what i have for you). The scripture talks about how God is our gardener, he prunes so that we can grow and be fruitful but to do this we need to remain in him, and his word without this the vine withers and dies. Karin talked about how we all begin as seeds and need to be in the dark soil to gain nutrients and be watered- It was a lightbulb moment suddenly everything Id been learning over the many many years made sense- and it was like the moments when a seed plants its roots in the ground for me. I understood that to be a christian is way more than just believing in God, its about the relationship you have with him. All of a sudden everything made sense and the things I’d been trying to put into practice over the weeks before stuck too- like my foundations had been laid. I understood that sometimes we have to go through the bad to be able to see all of good and to get to the place we are now in. We were set the challenge of John 15 in 15 mins every day for a month- and boy did I learn things from this (ask me about it and I’ll tell you more).

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If it hadn’t been for being diagnosed I’m not sure I’d be alive today- I had a 5 year plan to become a teacher and I’d decided that if anything got in the way of that I’d either run away or I’d kill myself. I know got dark quickly then but at the time I was in such a dark place this is what I felt. Cancer saved my life because I had no choice but to accept the treatment, and when I got PTSD after transplant and had to struggle with repressed memories of things that had happened before my transplant I was lucky enough to have Jude Rowlands (my amazing CLIC Sargent social worker) in my life who helped me get the right support in place and I have had lots of problems with my mental health since. I still struggle from time to time yes but boy have I come a long way a few weeks ago I wouldn’t have been open and honest about this.

I can now look back over my life and I see so many times when my outcome could have been different. When I’ve had good people step into my life at just the right moment. When that conversation I had with Emily came just at a point when I really needed it! The past 6 months without Emily have been really hard, because there have been so many moments I know she has influenced- pushed me to go to something, or speak to somebody. I can’t Thank Emily or Peter- but without them I probably wouldn’t have walked into Freedom Church. The past 6 weeks have been eye-opening, heart wrenching, and a constant stream of OHHH… ok I get it moments. I hadn’t realised how dead i’d become- I hadn’t realised how tough I was really finding things. However over the past 7 months I’ve found a church family who I love, I’ve found new friends that just like my cancer friends come from all backgrounds and walks of life, I’ve found a home in my city and most importantly I’ve found my Faith!

Last week I decided I should get baptised because although I was christened as a baby and confirmed I hadn’t accepted Jesus into my life at those points. I knew I needed to show that to the people who had helped make that happen (my freedom family). 7 weeks ago in freedom church I would turn up as the event started and I’d only sometimes hang around after. Now I love that place so much because of the change and massive impact its had on my life I’m volunteering there and I’m never late, I’ve made stronger connections with those that go there and now I’m a much part of their lives as they are mine. I’m still very young on my journey and like most christians I’m far from perfect and I don’t have it all down yet but it’s ok because it’s about being on that journey- growing and developing. Some people in my life have seen a huge shift in me over the last few months and it really is incredible I know the best is yet to come and my story is far from over. I’m just so unbelievably grateful for all those who have helped me get to where I am today.

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I couldn’t recommend finding a community and a church strongly enough. If you’ve read this and been moved message me, if you’d like to find a church that’s relevant to you- message me. I’d love to help. Check out http://www.freedomchurch.cc/about follow freedom church on YouTube and watch some of the preaches. Feel free to ask me questions because I’ve only skimmed the surface here.

For now sorry for such a long blog but

Goodnight God bless #boom

 

 

 

Legacy Ball.

Its been a while, but i felt the need to write. I’ve started this blog titled Legacy Ball but we will see where it ends up. As many of you know last weekend was the #LegacyBall in honour of my wonderful friend Emily Clark a girl who I miss every single day.

Most people look forward to fancy dresses and getting all dolled up and getting to wear pretty shoes. Me not so much, I don’t know what it is but I don’t like to fuss, I dislike shopping rarely wear makeup and shoes well lets just say your much more likely to see me walking around without them than with (I’m currently sat in Sunflower & I a coffee shop come florist in cardiff bay shoeless). However it was #foremily so I couldn’t not go. It was an amazing night and I was so grateful to see many of my cancer friends who had brought their own tables of people along with them. The food was incredible and Em would have loved every second! It was a fantastic evening and I was super grateful that some of my family came along to.

But its so much more than that- Currently our Bone Marrow Transplant ward in Cardiff is well- dated and we don’t even have en-suits now you may think why do they need en-suits?? Well a bone marrow transplant is basically a new blood system and immune system so while it grows your super prone to infections so your not aloud to leave your room. Some are in for 2 weeks others for 3months+ (depending on how fast you graft and how many complications you get). I’d like to ask you how long have you been without privacy? How long have you gone only using baby wipes and a bowl to wash? How would you cope using a commode every day for 3 months? We need a new unit so more people can get a second chance at life like I have. The #WilsonWard need £1 million… so far the incredible remission possible team and supporters have raised £52,000 but there is still a way to go. Can you help? Do you want to be involved in something amazing? Did you go but left with money in your purse why not make a donation? Why not sign up for the next event?

Im now sat in a cafe in tears because I’ve just heard the song Piano Man- I’m instantly transported back to Michigan to summer camp- to the life I had. Many people (sometimes my family and friends included) don’t understand what a huge impact a bone marrow transplant is… Im reminded of the conversation I had with some of my amazing cancer friends on saturday night as we sat and watched people dancing feeling comfort in the fact we all understood how each other felt. I remember the way my consultant by just being on the stage on Saturday night made me cry- because without him I wouldn’t be here, he pushes and never gives up. Hearing how he had to break the news to my friend that they were out of options was heartbreaking but inspiring at the same time because I know how hard he fights for every single one of his patients. (He’s the guy in the pictures below [the others are some of my cancer friends])

I’ve spent pretty much the whole of this week recovering from one night. Sometimes one night out has no impact on me other times it could have a huge impact. I never know. I can’t plan, I can’t think ahead to a year from now or even 2 months from now and this is all thanks to my transplant. Not that i’m not grateful because believe me I am! Life is very different for us and it may always be that way it may not, but for now I will forever be reminded of it because despite my progress this big thing happened and it effects me every day. However, we don’t need limiting because of it in fact we need the push we need to go to things like the LegacyBall to be reminded of how far we have come. We need the challenge because without it we will be stuck. We will not be more like Emily who is was always pushing forward. So while you may think sometimes I’ve moved on (i haven’t), or I’m still stuck in cancer world (because I’ve no choice) or that I’m still really ill (no this is me now) remember I’m different now because of it and thats ok- because boy am I a better person thanks to it. Please remember how far we have come and that we like you don’t want to be limited to anything. So its for this reason I’m begging you to dig deep and donate to the #wilsonward help give others that chance to be a better human! Give them a second chance at life let them thrive!

When I was at the ball I was reminded how much I’ve changed and achieved yet I only saw this when I was with those who ‘Got it’. I see how different I am from my family and others my age, so it was such a mix of emotions being there. I’ve missed Emily and thought about her every day which is something I sadly didn’t do when she was alive. I looked forward to our catch ups but I’d say she has impacted my life even more since her death than when she was alive. Emily was the sort of person that just hearing about her would make you want to meet her. She was the crazy patient who kept up with her studies whilst going through the craziest time of her life. She would chat to you about everything and anything and you’d leave feeling happy, alive and inspired. She would laugh with you, laugh at you when you cried whilst remaining compassionate. She never complained or moaned even when she had reason to. She had such a strong faith and was so driven and determined I’ve not met anyone like her. But for me Emily was life changing! (So life changing it needs a whole other post for it). Emily’s plans were bigger than just her- she wanted to help others she wanted to inspire people to do something. I would absolutely love to do more and believe me Ive tried! But as I’ve explained above my complications complicate things so I can’t plan a big event or run a half marathon. What I can do tho is inspire and encourage you to do something. So why not ask me more about this amazing Emily, what the Haematology ward is really like and let me inspire you to do something.

Emily wanted more to have a second chance at life so for now i’ll leave you with the link to Emily’s/WilsonWard just giving page… Go on empty your purse there…https://www.justgiving.com/fundraising/remissionpossible