Cancer. It no longer defines me!

Hey lovely people,

Today is world cancer day and so thought it was apt to write this post today. It’s a topic I’ve wanted to write about for a very long time, and back in November I spoke on this at FYSOT (a Teenage Cancer Trust conference). I’m going to try and write more than what I chose to speak on, simply because lots has changed since then too. However, to start I’m going to talk about how and why I first started to loose the cancer label.

So obviously if you haven’t read my blog before you have guessed I had cancer, well technically I didn’t. It was a blood disorder called Very Sever Aplastic but treated similarly, so it was cancer-ish. For me it was an incredibly hard season of my life. I had to have a bone marrow transplant which basically strips you back to nothing, both physically and mentally.  It changes your life so drastically, and often quite dramatically too, that you loose who you are. Re-building your life after something like this, well its certainly not easy.

For me I felt like I had nothing, my life was a shell of what it once was. I had to suspend uni for a year and a half and even when I went back it wasn’t the same, I wasn’t the same. I had to adapt to my ‘new life’ and the restrictions that illness had imposed on me. I felt distant from friends, and felt that they lacked the understanding (even though they were massively supportive). I’d struggled with memory loss and PTSD and my mental health was in a mess.  The things that got me through this time however were incredible charities like CLIC Sargent, Teenage Cancer Trust, and Ellen MacArthur Cancer.

I will often say that cancer-ish whilst being the worst thing that ever happened, it was also the best, it changed everything. Incredibly I got the best help and support I could have ever imagined and I was able to rebuild a sort of life thanks to these incredible charities.

I finished treatment but walked into this sort of half life. Unable to fully live due to the complications, late effects and long journey of recovery that I was on. So while normal life was still a way off, I decided that the best thing I could do was to immerse myself into the cancer world. This had me in a place with people that understood and where expectations of me weren’t too high or unachievable.

I felt that once I finished treatment, and returned back to university that I’d moved on from cancer. I thought I was done and as much as I possibly could moved past it. After I finished uni I was pretty sick still. Around the same sort of time 3 years ago I walked through the doors at Freedom Church. I was really unsure on where my life was heading. Especially as the internship that I was doing at the time with CLIC Sargent, simply proved how unready I was for the world of work, due to my late effects.

About a year in (maybe longer) someone at my church came up to me and said I just think you really need to loose the cancer label. I was furious, I didn’t see it. I thought I’d already lost it, and was really angry about it. I’d moved on as much as I possibly could and thought ‘how dare she say this when she knew nothing about it’. I avoided her for a good 6 months, but then someone pointed out to me that if it wasn’t there how did someone else see it?

So I began investigating how I portrayed myself, and then I realised. When introducing myself to anyone I’d ask what do you do? When the question was thrown back at me- I’d respond well I can’t work because of the late effects from cancer-ish. The problem with answering a question in this way was that the questions that followed were never about what I did get to do, but always about the Cancer and the late effects I suffered. So when I realised this, I started to change the way I talked about it, simply talking about the volunteering that I did. Its was amazing when people knew more about my sailing than the days in bed I had to take. Changing how I talked about it changed everything so much so that about 6 months later one of my newer friends had no idea that I’d ever even been ill. I was no longer held by this label of Cancer-ish!

Fast forward to November when I first got asked to give a talk at first I didn’t want to do it. I wasn’t up for telling the sob story and wasn’t sure about emerging myself in a world full of people who were still living that story. With EMCT its completely different- because its about building confidence and learning a new skill, getting out of the cancer world bubble and finding yourself again. This conference however isn’t about stepping out its more about relating to others.

I decided to do it but not just to be another story where you hear about the dodgy diagnosis or moments you nearly died. But one of life change even when the odds were stacked against me. Even when I hadn’t recovered like others had, after all I still had chronic fatigue, memory issues and no immune system. I talked on loosing the cancer label and how changing my language around it changed so much. What is so amazing is that I still have people reaching out now or commenting how good a talk it was for them. By sharing insight into the small changes I made its helped way more than just me.

 

 

While I was preparing I asked God (yep I’m a christian too!) to guide me in what to write which he did. I’d never have chosen to talk so openly about my mental health without his nudge. However not only did God show me all of the areas I had worked through and overcome. Like how changing the way you speak can change so much, or that I’d defied the odds time and time again and stepped out into new things like the course I’m doing now. He also showed me all the things I still had to work on like loosing the crippling control issues I had. Speaking life and not sickness over myself, getting bigger vision for my future, and believing that I do have a future. He showed me how I’d let the fear control me, and how my health and wealth were intertwined (I’m sure at one stage i’ll explain all these a bit more).

I can now honestly and truly say that control plays way less a part of my life now, I’m happier and healthier than I’ve ever been and I know more is to come! Illness doesn’t define my outlook any longer (which doesn’t mean I don’t still face it- but its in a completely different way). For the first time in 8 and a half years I can say that Cancer doesn’t define what I do. That cancer label which yes will always be apart of my life no longer has a negative impact on me or my life.

I can truly say I’m Thriving not just Surviving.

I can’t wait to see what my future holds, but one thing I know for sure is I will keep going and will keep sailing as its a great opportunity to inspire and help others.

All the best

Wen

ps. If your one of my cancer friend reading this and want to know more please dm me and I’d love to talk more about what I shared. Go loose that label! thrive.jpg

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Life as a long-term bum/volunteer

So tonight I got super teary over something that I don’t even want to discuss because it’s so pointless and I’m not one to share my laundry or ups and downs on Facebook (It solves nothing). So I have decided to look at my long list of possible blog titles and start writing as it helps even when its about a completely different thing.

So welcome to my life as a long term bum/volunteer. It’s both because I’m terrible at balancing and pacing in my life so I do too much of the latter and end up doing a lot of time as the former. As you know I struggle health wise with quite a few different things (mainly all as a result of my bone marrow transplant). I’ve recently changed the way I talk about it and boy has that helped lots. Now instead of replying to the What do you do? question with I can’t work because I was once really sick…. to I volunteer. Boy has that helped set up the conversations that follow it. (I’ve covered this in one of my earlier blog posts.)

However, today I’d love to give you an insight into what living this life is truly like. Pre summer I was doing loads with CLIC Sargent and was on lots of different groups, helped by representing them at things ect… ect… Over this summer I’ve done a bit for Ellen Macarthur Cancer Trust which take children and young people in recovery from cancer sailing. However with my last trip of the summer fast approaching I’m left feeling a little lost…. What will I do when this wraps up (and I’ve recovered from the sailing). The answer right now- I’m not entirely sure. (This is quite a scary thing for me but I know something will slot into place). I guess the unknown of whats next is scary because I don’t plan- because I simply can’t I have maybe 2 weeks in my head at a time- post that its normally waiting to see how long it takes me to recover from x or y… or simply too far off for me to think about. When I make plans and they fall through and its not me cancelling they hit me quite hard because I have to plan more than most to be able to do things… Thinking about pre rest time and post crash time. I don’t know why but takes me a day or so to think clearly about the reasons why things fell through, and why it benefits me in the long run as I can then do x or y instead- I suppose its because for some things that last 4 days I could have 2 weeks either side planned to prepare for it. However, this by no means that sometimes I can’t do things last minute either (I just have to be well first).

The life of someone with chronic fatigue is frustrating and something I wouldn’t wish upon anyone. It’s exhausting planning, preparing and pre-empting how many spoons (units of energy) your going to need. Its frustrating that after a weekend of doing thinks (a normal person wouldn’t think twice about) your so shattered you spend your evening teary over the most pathetic things because your just exhausted… In so many ways and sleep and rest is all you can do for 4 days+ so that when the next event/trip or fun thing on your to do list happens you have enough energy to actually do it. I wouldn’t change doing the things I do- and never want to stop doing things. I just really wish I wouldn’t have the crippling days (or weeks when i really overdo it) of paying for having a bit of fun or just doing something normal.

I’m struggling a bit if I’m honest with this life- well because its more like a half life… only able to do so much before you crash. I recently had a DWP fit for work assessment and it stressed me out so much I made no/ very little plans for about 2 months. I missed out on opportunities I’d normally jump at because my ability to plan like I would normally went out of the window. When it came to the actual assessment the assessor realised in reality not much had changed in the years since I was last assessed. While at the time I was a bit confused because I thought they had (they really hadn’t). You may see me on a good day- Yes sometimes I can jump and dance, sometimes i can walk to the bay- other times walking to the corner of my road is simply too far and getting dressed can take a life time. It can be really tough. Most of the the time I refuse to let on the hard side of it. I’m far too busy looking at life through the positive light and seeing the massive amounts of opportunities I am able to get, the time with friends I’m fortunate to have, the flexibility to rest around the things I want to do.

This ‘LIFESTYLE’ (as it was once described to me) of being on benefits, isn’t fun. It’s really not as glamorous as it looks (yes I have time to go for coffee’s) but the funds don’t really push to nice trips out, or holidays. It doesn’t mean that because I have the time- I have the funds or energy to travel to you and visit. It’s not a blessing to not have to work (yes it has it’s perks) but I would love to use this brain, and my skills to hold down a full time job. I would love to have the energy to do all the things normal people do (including working without fatigue), I’d also love to be able to say wow work was tiring today…. Instead it’s I got driven to lunch and sat for 2 hours now I’m in tears because I’m just too tired *but knowing sleep won’t help*.

Today, it got a bit much and the emotions of being tired and knowing I’ll be resting till monday so I am in Tip-Top form to go sailing got a bit big. I wouldn’t change for the Trust at all (right now it’s all I’ve got to look forward to). I wanted to let you all know- remember when ‘I look well’ or seem ok- one of  four things is happening; Ive prepared well and am ok, something weird is happening and I’m having a good patch, am hiding it, or I’m approaching a crash. Please remember even when you don’t see it, doesn’t mean it doesn’t exist.

Thanks for understanding (or trying to)

Wen x

 

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.

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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!

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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.

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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/