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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Survivorship Guilt- Loosing a Cancer Friend

Yep this one is hard to write- but after spending a little while searching I realised its not out there enough in those moments where we need it.

Tonight I found myself scrolling through Facebook to hit a post that had me stunned into shock. Another (yep I’ve been dealing with this for 8 years now) cancer friend has passed away. I’d met this person through the sailing charity I’m a volunteer for and remember really clearly having a very long and deep conversation with this young person she was something special. I now choose not to be informed by the trust if a young person I’ve met passes away (simply because I have to protect myself from feeling like I did tonight) but also now they don’t do this either. I had a mutual friend with this person and through a shared social media post I found out.

I’m going to describe what its like simply because tonight when I had no words I wished I had the explanation to pass on to my ‘normal’ (non-cancer) friends as I was completely unable to talk to. Please understand this is my experience but I’m also writing it for my friends to also use in these situations.

What the grief process is like

Because we have been so ill we have been exposed to death way more than most of our peers, but the loss of a cancer friend is so different to when you loose a family member or friend because of an accident or other illness. I say this because I often feel greater grief in this than like any other types of grief I’ve experienced simply because we also have survivorship guilt wrapped up in our grief. Now we have different types of cancer friends loss, those we’ve met and done life with over time, those we have met only a few times but also those who we have followed through social media. We also have the expected and unexpected versions of loss too. For some we’ve known are on palliative (end of life) care for some time, others have a slow decline in health, and others are completely unexpected- and happen completely out of the blue as the deteriorated over just a few days or hours.

Because we now live in a digital world, most I’d say 95% of the people who I’ve lost over the years I’ve found out through social media. So almost every time I go onto Facebook now (because of my years of experience) I prepare myself just in case I scroll to the news of a death and I know this isn’t exclusive to just the cancer world.

When your met with the news a cancer friend has passed away one of 4 things happen- 1.  your well prepared and although its still sad- and you still grieve you aren’t hit quite as harshly with survivorship guilt and your able to process through it quickly (as quick as you can after any friends death). 2 you are prepared for it but haven’t prepared how much of an impact their loss has on you and survivors guilt slaps you. 3 it doesn’t hit yet- and is delayed either due to the shock or being unable to process it there and then but it always still hits Or 4 your completely blindsided by the grief and overwhelming survivors guilt.

I don’t think there has ever been a time that I’ve experienced the loss of a cancer friend and not experienced survivorship guilt.

What does survivors guilt look like

Well it looks you hearing the news and then the complete shock of the loss- it hits you like a big giant wave knocking you off your feet completely. Your unable to breathe and you haven’t yet got to the tears but then its like a huge weight falls on you… one you can’t shake and it consumes you- that’s the guilt- yep it comes before the grief even hits but the grief usually hits very soon after so you experience them together sometimes. This guilt is tough to explain but I’m going to do my best. Its like you suddenly question why them, and not you. Why did they get taken when they had so much more to live for than you… You feel responsible for them because you’ve been through such a similar things and supported one another. You see the potential that their life had and have a moment where they are put on that pedestal of well they were better than me… You feel guilty for surviving when they didn’t. You feel guilty for not being able to help them. You feel awful because of you realise you shouldn’t feel guilty so you get guilt for the guilt. You question who you are, you question if the last thing you spoke to them about was positive. It’s the gut puncher that they won’t now get a chance of a future. The pain that you’ll not get any more words of wisdom or yea I get that too from them. Its worse when you’ve journeyed with them, or have the same cancer because you then feel like ‘you’re the lucky one’ for surviving. You question if you’ll be the next, you question if your going to relapse but it also has you questioning who you need to prepare to loose next. Plus then you have the normal grieving that everyone experiences.

What people tell you

Its hard because rationally you know the things that people tell you, it’s the same advice we give to our cancer friends when the face it… That there is no need for you to feel guilty. That the harsh reality of cancer is not everyone survives. There is no reason to why you survived and they didn’t. That you need to remember the good, the joy you brought them and they brought you. The comfort you were for each other. That they wouldn’t want  you to feel like this, they would want you to live your life to the full… this last thing though- it’s hard because you end up living your life for them.. You take them on add the name to your ongoing list of the people your living life for… I’m not sure how I feel about this but in resent years I’ve begun to realise that this is just  how unhealthy it is to do this, you cant live for them… you can live and know that they would be bursting with pride for doing so… but you cant live for them.  Yet that rational thinking doesn’t exist in that moment… sometimes it takes minutes to move through survivorship guilt and into rational, sometimes it takes hours and other times it takes weeks. I have no answers for how to move through it- other than it helps to let people in, help them understand where your at and help them understand its not just grief your dealing with. I find that hard especially in the overwhelming stage (which can sometimes last several hours) hence why I’m writing this!

 

Why I struggle with the Battle metaphor

The thing with treatment is you could be identical twins and have the exact same cancer, same stage and place. You have the exact same treatment but you could have completely different response and outcomes. No one knows why, its just the reality. I think this is the reason I struggle with the battle metaphor… by this I mean the lost their fight/battel or the you’ve beaten cancer. See there are a few problems with it, it implies that some haven’t fought hard enough or you haven’t won, that others fought harder because they survive which is simply not true. It also is hard for those who have ‘beaten cancer’ because you have you will find that people assume your ‘better’ and healthy now… you still live with the effects and the impact of the words ‘you have cancer’ (or cancer-ish in my case) will forever have on your life. At my friends Peter’s funeral this was written on the front of the service sheet and sums it up so well ‘When you die, it doesn’t mean that you lose to cancer, you beat cancer by how live, why you live and the manner in which you live’. Stuart Scott.

 

Cancer Friends/Normal friends

Your cancer friends get you like no-one else, they understand you and the problems you face unlike anyone else. I love my normal friends but at times they just don’t get it, nor do I expect them to- no amount of explaining even comes close- but with a cancer friend you know they get it… like completely! So its hard when your cancer friends are literally dotted throughout the whole country and the people you have around you in the moments when you get the news are often your normal friends its really hard,  while many of them understand grief, many haven’t lost friends and the certainly don’t get what its like to loose someone who you have shared experience of, or the survivorship guilt either. However I’m beginning to learn that they can still support me in this- I’ve just got to try and explain and understand that they wont get it fully, but that’s OK.

Loosing friends doesn’t get any easier, yes different people hit me on different scales like any grief but the survivorship guilt can vary- and often doesn’t matter how well I knew someone or not. Sometimes it just depends on where I’m at personally before the news, other times it depends on how well I knew the person, others its whether there is an accumulation effect, and others on how prepared or unprepared I was for the news. I’m learning to let my friends in, praying for peace and working it through. Maybe one day I’ll have the answer and be able to separate the grief from the guilt but for now- this is me stumbling through.

Hope this helps bring understanding to the non cancer world, and a way for the cancer world to explain it. I’m grateful for those church friends and cancer world friends who have been there for me over the last 24hrs. You guys really helped thankyou.

Why I don’t want a cure for Cancer.

So I’m going to start by apologising this post is in no way suppose to cause offence, or to say that Cancer research is pointless because IT’S VERY IMPORTANT and I want research to always continue! However as you continue to read this you’ll get my point. I do want a cure for cancer, but its kinda secondary to what I really want. Right now I’m not after a cure, I’m after kinder treatments first.

So, why don’t I want a cure for cancer, well you might think it’s because I’m the most selfish person on the planet, or that its because Cancer was a good thing in my life. Well yes to an extent it was.. but again it’s not my point. Years on from my treatment I look back and am amazed about how far the research has gone, the things you wouldn’t even believe. I’m extremely proud and grateful for all those who are searching for the cure for cancer. However, what those not in the know don’t often realise is that cancer is stupidly complex… its millions of different variations of a disease… So sorry to burst the bubble but one miracle cure isn’t going to cut the mustard.

So why am I even writing a post like this… well after a conversation with someone recently I realise how deluded they were about what is out there. So we got into a little bit of an argument as they believe the cure for cancer has already been found and that big pharma companies were hiding it because they wanted to continue to make money. Well to some extent yes this could be true- they might have found a cure for *A* cancer – but if that ‘cure’ is gonna kill 99% and cure the 1% would you take it? What about if it leads you to be paralysed – you’d be cured of cancer at least? I realised with this particular person no amounts of arguments were going to re-align his thinking so left the conversation with a ‘Well you can believe what you want, I just think of it differently so lets agree to disagree’.

This blog post has been on my list since the list started- but the convo I had has prompted me to write. I am so grateful to be alive. The cancer-ish (Very Sever Aplastic Anaemia-actually a rare blood disorder treated like cancer) I had, has only been treatable in my life time. One of the crazy rare complications had only had a ‘cure’ 2 years earlier. So if it hadn’t been for advances in medical science and the millions of souls searching for the cures. I wouldn’t be alive. However, as much as I would love for their to be a cure for Cancer- I really don’t want it if it means that’s the end.

I don’t want a cure for cancer, if it means there are millions of people who end up like me, or worse. Unable to get out of bed some days (yep you guessed it another blog written under duvet)… I don’t want to have to continue to meet people who get it- because they too have had their lives turned upside down not by the cancer- but by the side-effects that get left behind. I don’t want to have friends that have to exhaust all treatment options before they get placed on the ‘wonder drug’ (often still in trial) because they have to fail before its offered as an option…. because often these people have had to endure grueling rounds of treatment, that weaken them, gives them way less chance of recovering. I don’t want to have friends on a ‘watch and wait protocol’ because they need to let the disease to get worse first because treatment now would be too harmful. I don’t want to hear the painstaking cries of friends who are so fed up of being on lifelong treatment because their cancer hasn’t got a ‘curable’ treatment option available yet (of course in this case i want a cureable treatment option to be avalible and then it to be made as kind as possible). I don’t want to lose another friend because the poison that chemotherapy and radiotherapy is made them too weak, or to susceptible to infections which ultimately leads to yet another funeral. I dont want to lose another friend who survived cancer, but the effects it left them with meant they were unable to survive. I want kinder treatments, so that people aren’t just surviving cancer- but they are thriving post cancer.

I want to be able to pick up the phone and congratulate my friend who defeated the odds and now is walking into a fantastic new job. I want treatments that don’t kill, don’t come with a list as long as your arm for side effects of late effects. I don’t want treatments that mean your life as you knew it disappears before your eyes. I want treatments that mean your life can continue there is no ‘break’ from normality while you endure endless months in and out of hospital. I want kinder treatments because I don’t want more people to have to go through what myself and thousands of others have.

Yes I ultimately would love for their to be a cure, but let’s be realistic and lets be thinking about what happens in the mean time. Lets start changing the outcomes of cancer, and giving those facing it a better chance at a normal life again! The #Quest4aCure must start with kinder treatments.

 

 

I wrote this post- and paused… I sent it on to some of my friends who pointed me in the way of a new report by Bloodwise – called Childhood Cancer report- The quest for a kinder cure..So i’d say its quite apt… So very happy to share the report here- just follow the link!!!! Read the red case studies it will help your understanding! Read it all- and take on board what it says… its important! https://bloodwise.org.uk/sites/default/files/documents/Bloodwise-Childhood-Cancer-Report-2017.pdf

(Artwork at top my own)

Just thanks…

Today I had a check up at the hospital where I wrote the following…

In the waiting I sit, nervously, anxiously waiting. I sit and see others come and go one who is told the news transplant is the next step, another looks weeks out from transplant still tired and weak.
You see the same faces from the staff who have spent decades serving this nation. Trying to fit in the ever-growing case load of people. Sending for bloods, then checking your obs. These people reach out to see how you are. They have the answers or go to find them out, they see who you are and what your about.

As I sit 7 years on I still get this fear that today is the day I hear bad news. I see a familiar doctor, I’ve not seen in years yet now she’s a senior. I feel a sense of pride as I’ve seen her grow. she’s worked hard and boy does it show.
I glance and see my notes- sat on the pile with a post-it note. I know what it is I’ve seen it before it’s my protective consultant saying she is mine stay clear, he wants to see me again but still I ask why? Maybe there’s news.

A guy who is maybe 10 years older is the closest in age to me today. I sit and i wonder if his life-like mine has been impacted and changed. He gets called through and I sit and wonder what news will he receive.

As I wait all becomes quite, still and peaceful I look around and contemplate those missing faces- the ones I know I’ll never see yet still miss so terribly. I question why me, why was I so lucky. Why did it work for me but not for them.
The guy comes out smile beaming and I breathe a sense of relief knowing he’s happy. Knowing he to is one of the lucky ones.
Then the finger beckons, I stand and my heart races the steps into the room feel heavy and weighty. Despite knowing I’m fine there is still that chance. I stop for a second and take a big breath. I sit and he opens “well who’d have guessed your 7 years old!” I breath, today is not the day I hear bad news. I settle and begin to answer his never-ending questions, the ones I’m sure he doesn’t need to know as well as those I know he does.

I tease and he teases my consultant is not just a doctor, he’s a friend and a father. He knows me so well. He knows when to delve to ask the questions that make me squirm and when I need him to lay off and back down. I’m so grateful for him and I’m just blown away as without him I’d never have made it this far.

The questions are over and it’s now my turn. I talk life, my future my world for a moment he’s there protecting it all. We reminisce we laugh and I well up knowing that Thank you will never be enough. It’s more than just me it’s the thousands of others. It’s that thanks that’s unsaid, unheard or forgotten. It’s for those who we’ve lost but that I know you’ve not forgotten. What can you say to the man who changed everything. To the doctor that I know I’d be nothing without. I say all I can and again I say thanks.

Today I was told I’ll never be discharged that I’m there for life. For some this would be bad news but for me I breathed a sigh of relief because I know they will always be looking out for me. I was also told that travel is limitless and I could go anywhere again it’s like a door being flung open suddenly places I’ve only dreamt of could become a reality. (Now would be a great time for that lotto win). Who knows.
I’ve come so far yet still I know just how far I still have to go. I leave behind a man bursting with pride he did this, he’s the reason I’m alive. We hug and I leave thanking again as I walk out with a smile and a grin. I chat to the nurses who all played their part.
I tell them about how now I’d do it different from the start. That the 20 old me knew nothing and no-one. I wish at the time I’d had some more fight. I wish at the time I had some more life. Now I look back at the years that I wasted. I could have done more but instead I just … wasted. Instead of fighting for more I just didn’t want it. I wasn’t focused on living or striving for more. My life was over, no hope a disaster. I couldn’t see out and didn’t want different. I’d just moped and I moaned, I wallowed in pity. With no hope in recovery I settled for less. Until one day that changed and this I addressed. I now see things different and I hope for the best. I see the progress I’ve made and the miles that I’ve distanced. It was slower than most and I made that hard. It’s not simple or easy but I know I’m far from done. My life’s worth living I’m no longer a bum.

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!

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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.

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