Not held by fear

I’m definitely an ad hock writer but learning to be ok with that. Today in church we were encouraged to write out chapters of our stories and here is one from the last few month. It’s a long one but well worth a read.

I’m going to start with an apology not many knew I was facing what I am going to talk about today but I needed the circle on this to be small and I’ll explain why later.

So I’m about to go on a sailing trip with the Ellen Macather Cancer Trust in-fact I’m writing this from the train on route. It’s my second trip of the season my first being in April earlier this year. 2 days before I had a call, you know the ones you don’t want.

I’d had a scan in February, and the results got a little lost. But eventually I got a call in April, saying ‘we’ve looked at your scan’. I’m already in hyper drive! Thinking you don’t call for nothing. Come on spit it out… ugh get to the point… What is it? what’s wrong?! Still more waffle about how what they were looking for was clear but how sometimes these scans show other things…

Ok now I’m worrying it’s not my lungs, there is no scaring. This is what the routine scan was for. What is it?

They found an enlarged lymph node… if you’ve ever faced cancer you know where my brain was at right in that moment… ok so it’s fighting again then? Is it Hodgkins? I am at a higher risk, and that weird complication I had was early signs of this. My mind went straight there!

It wasn’t crazy big, but the radiographer had requested an ultrasound scan within 2 months (we were at that 2 month mark then). He says it could be due to an infection or it could be more sinister and with my history he wanted it checked. He want it done quickly because of the timeframe set by radiology. But thinks the best way for this was to have it in Hereford as if any follow up was needed it could be done locally. He also said it wasn’t an Immunology issue so they were handing it on. In this I heard we don’t think it’s infection related (as they deal with all this) and think it could be more sinister.

See once you face cancer you end up living in this place of a fear of relapsing. Living in the unknown and having the looming worry of relapse over you. You also become an expert in reading through the lines of the doctors while it’s hard to get their tone across in this I definitely felt the need for the rush to find out.

Within a few mins of putting down the phone I was a mess. In a place where my future was uncertain, and scared at how was going to impact this life I’ve finally started to get back.

I took a moment, and thought ok let’s be rational and rule this out. Have I had any other symptoms?

⁃ tiredness, yes but that could also be down to other things…

⁃ night sweats, ohh actually yes

⁃ Bruising, yep that killer bruise from Cyprus was still lingering months in

⁃ Itchy skin- yep

⁃ Unexplained weight-loss no but it’s the only one.

Now I realised this could just be coincidence, but instead of ruling it out it brought just more uncertainty.

Within a few hours, I’d had some people come around me and pray for me. I’d hit the practical mode of planning. Ok, so if I’m fighting it will still be early stages. I’d have minimal treatment and I’d be back to normal within 6months. I’d be ok… I could cope. Right when do I tell people? Who do I tell, how would I get to treatment? Where would I have treatment.

I called the Trust just so they knew where I was at head space wise for the residential trip. They said if I needed to or didn’t think I could they would manage without me. I say I’ll be ok and they say if you change your mind at any time let us know. I love the trust and how they care for their volunteers.

I arrive to big hugs from the team and a conversation about how if I need time out just to say. Throw myself in and forget about it.

Then just before going home I have a conversation with a young person about a scan they were waiting for, my advice to them was until you know try to assume it’s nothing, what’s the point wasting time worrying for what could be nothing.

I never realised just how hard this advice really was to follow, til I started to do it myself. Hitting reality of home, I was constantly checking the mail for the letter from my consultant to my G.P for scan referral. I let the waiting consume me. I spent the following few weeks calling doctors to chase things only to experience delay after delay of getting answers. Just getting more and more worried in the waiting.

I soon realised that this was a pointless waste of time. So chose not to let the fear or worry steal from me any longer. While this was a journey that didn’t always work. I chose to refocus each time on God knowing he has it all. Knowing that worry solved nothing so why waste my time with it.

In church and academy we sang this song called follow you anywhere by passion. Part of the lyrics are ‘there’s a million reasons to trust you, nothing to fear for you are by my side, I’ll follow you anywhere.’ One week we were singing this and I broke. Into such a blubbering mess, because I realised I’m singing this and truly meaning it. But that following God anywhere also means anywhere even back into the fight.

A week or so later I go on a walk with God. It actually felt more like I’d gone 10 rounds with Him. After an hour he says to me that I fail to have desires of the heart all because I’m too afraid of them being ripped out from under me, and while yes I was surrendered it was only because I had nothing to surrender.

The days that followed I went on several more walks and realised just how right this was. I was ready to fight but part of the reason for this was because although yes outcomes were unknown it would bring in a lot of known to. I’d be re-entering my comfort zone and the place I thrived, being a super patient who knew how to navigate through. This was my comfort zone.

I soon realised as I had a plan for if I was to fight I also needed one for if I wasn’t. I needed to put those dreams and desires in my heart again, and not be so afraid of loosing the things in my life that I refused to live. In this I realised just how long I lived in the fear of loosing it all.

Yes I’ve written about this before and I’m not saying I haven’t been living, or acting on this by going on the journey of truly living. What I’m realising tho is there is always more. ALWAYS MORE!

I won’t say right now what those things in my heart are. But for the first time in the longest time I can truly say I have dreams, I have aspirations and I’m chasing after them unafraid of them being swept away again.

Oh yea the lump.. It’s taken 6 months from my initial scan to answers. But I had a scan about 2 weeks ago and it’s nothing! NOTHING! The lymph node is still enlarged but completely within normal range, and so nothing to worry about.

Yes I cried when I left the hospital seems like even though I wasn’t letting the fear of future hold me. There was still a huge sense of relief that my future didn’t look like more drip stands and treatments.

I would have told people if it was something but I felt that worrying others as well was silly and unnecessary. I also decided I didn’t want to make a big deal about it and felt it would help with this.

Sometimes we are taken on unexpected journeys to unearth and uncover different things.

This chapter of my life has taught me

⁃ not to live in a place of fear or worry.

⁃ That my faith is strong and knowing I can trust God makes life that bit easier.

⁃ That not everyone needs to know every battle you face, for me this helped because I wasn’t constantly being asked for updates from everyone. It also increased my faith because I chose to lean on God in these moments more.

⁃ That doctors are over worked humans who can forget to send letters but be patient with them.

⁃ That I have a future

⁃ That I can really live

⁃ That it’s normal to have dreams and aspirations and these can be from God too.

⁃ That prayer works

⁃ Having people that speak life into situations of death and uncertainty is so helpful for keeping you positive and worry free.

#thisismystory #MyStoryHisGlory

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The start of something NEW!

Like always, its been a while. Sorry for that- its not that I’ve not had things to say it’s more been is it the right time to say it…. and for most things it still isn’t- but one day i’ll get round to then hundreds of blog post ideas and getting some of the things said that I’ve wanted to for a long time.

This blog post is about CHANGE! Something that I massively hate and have done for the longest time… but something feels different this time and I can’t quite put my finger on it- maybe I will as I keep typing. Stood in the kitchen of my friends house last night I said about how I really don’t like change and doing something new always terrified me yet I hadn’t felt like that moving out recently as I began the process of  moving from Cardiff to Hereford (I’ll explain more later).

Growing up I defiantly was someone who needed a routine and I was someone who was always busy- every night of the week I had something… and I also would often cram in swimming before school too… routine and business kept me going. Deciding to go to college, Camp America and University was all stepping out of my comfort zone and embracing change… but it was hard! Then after I got sick even the smallest of changes unsettled me- I remember how fearful I was when anything changed. Going on my first EMCT trip I remember telling my social worker I didn’t want to go, and returning to University seemed like an impossible challenge. I think getting ill worsened my outlook on change because my life changed so drastically in an instant… I went from a normal university life to one surrounded by drip machines and months of isolation. Knowing how quickly you can loose it all really rocked me for a long time.

Things however, have finally changed…. and although I still don’t like change but I’m learning to embrace it and run with it… and having faith is helping massively with that. Don’t get me wrong I still have concerns and I’m still nervous about the change but I also know that I don’t need to worry about every little thing. I’m putting faith into my faith, and knowing that whilst I’m unsure on how I’m going to manage financially or with the practicalities of life in a new place- this should not and will not hold me back from giving it a good old go!

I’m leaving the life I’ve built for myself in the wonderful city of Cardiff, and its hard. This city has been home for the past 9 years, its where I met some incredible friends through uni, hospital and church. It’s a place I got to call my own, a place of safety and a place where I’ve got to be me. This past few weeks I’ve said goodbye to some incredible flatmates, my stomping ground where I’ve been based for at least 6 of those years, my favourite coffee shops and favourite places and I’ve had moments of sadness in this- not knowing if i’ll get to call these places mine again… (I’m not saying I won’t be back its just if I’m back it will be different). I’m also going embracing the fact that I could be called anywhere after Academy and I’m not ruling anything out yet…

Last night on my way to my last rehearsal with church I got teary… goodbyes have never been a strong point for me, I find them hard and I will often push those I’m close to away in preparation for it (I know this is not the way to do it but its a habit I’m yet to break- so I’m really sorry if I’ve done this- its most defiantly a me thing and recognising it is a huge step for me…so please accept this as an apology). The team I’ve had the privilege of working along side at church have been well incredible… they have taught me so much, not just in faith but in skills and in leadership qualities. They have helped me transform from a broken girl who felt like I could bring nothing to one who can get stuck in, own the vision and now I’ve been training others up too. This team have been key in that transformation they have pushed me when I’ve needed it and helped me manage my health when I’ve needed that too. I honestly wouldn’t be where I am today without them and the hours of love and prayer they have given me. I’m going to miss them all massively especially Sam and Kyle who have rocked production managing and have pushed me further than I ever thought possible. Last night they gave me a lovely send off with a couple of gifts including beautiful orchid which I’ve named ‘Mac Toshi’ after the beloved big mac.

Mac ToshiThey also prayed for me which is a moment I don’t think I’ll ever forget. They spoke such wonderful words about me, from the transformation that has taken place in me, to the glue I’ve been for the team… They also prayed into my future and gave me some key things to hold for the days ahead. Yes there will be a hole in the team because I’m leaving but that will soon fill with the guys stepping up and new people joining the team. I’m going to have a huge hole in my heart for this team tho- and knowing that I’m not ever coming back to the same team because everyone grows and new people will be added and others will be sent out… it does however make me immensely proud of the team that has been built here. Thank you Production team its been a blast!

I’ve got 2 more Sunday’s in church but because i’m sailing next week, which feels immensely perfect as I did my first time trip the week before I moved back to Cardiff to start University again- now i’m sailing the week before my new course. This has meant some goodbyes have already had to happen… I’ve said some goodbyes to those who I’ve known for years and thats been tough… please make me accountable to staying in touch its something I’m not great at but hope this time i’ll do better at it. I move to Hereford on the 10th September and I’ll be taking part in a leadership course with my church called Freedom Academy… it’s a ten month programme (2 days a week) designed to grow our;

  • understanding of the Christian faith
  • relationship with God
  • sight into the role and development of leadership (insight and experience)
  • growth personally

I’m super excited and think this change feels different to others because it feels so right for me, because I now have an unshakeable faith and because I’ve learnt to embrace change not fear it! I also know its the right time for me to do something new otherwise i’d just be forming a rut and one that i’d never move on from. I’ll be living with lots of people from all over and its gonna be tough and very challenging. If you pray then i’d love prayer covering  a few things

  1. My finances for the year- I’m stepping out into the unknown until I’m there I won’t know what the impact on my finances there maybe so be praying that i’ll have enough to afford to live and pay rent and course fees.
  2. Friendships- for great bonds to be formed in and out of church.
  3. Health- for my immune system to not be effected too much with the change of environment and my energy levels not to dip as much this winter.
  4. Existing Relationships- for me to navigate the best way to stay in touch with people (I’m not the best at this).
  5. Personally- that I’m able to open up, trust and give this year my all.

I’m so grateful for all the things that have helped build me to who i am today and I’m looking forward to see the change that this year has on my life further down the line… I’m looking forward to reviewing how I action some of this and seeing how I grow. Thank-you to every single person that has encouraged, challenged and pushed me I wouldn’t be facing this new challenge if it hadn’t have been for your input.

 

A profound statement at an Ellen Macarthur Cancer Trust event….

Again I find myself in a position of having so many ideas of what to write about and not knowing what to write… one is about exiting hibernation and how that really feels and what it looks like, another about my future, one about loosing a label and another about random conversations that become quite profound and life changing as well as some others too. This post is about something profound but it wasn’t said in a conversation. It was a statement. Which I know is going to change me!

Two weeks ago, or so I got the joy of going to London to an event for Key supporters of the Ellen Macarthur Cancer Trust. I was there to talk about what the trust does, encourage people to get more involved and to thank people who were there for their support. Along with this I was there to help introduce the evening.

I had spent the morning hooked up to a drip in Cardiff hospital and the evening in a very swanky building Trinity House in London, just a stones throw away from Tower Bridge and the Tower of London. I was on my very first day of being antibiotic free (reminds me its Monday I need to take my antibiotics haa) after spending the last 5 weeks on the stronger antibiotics 3 times a day every day- rather than 1 tablet 3 days a week like I am now…. I really stood in awe taking in the Tower of London at the amazing double life I get to lead. How blessed I am to be alive, and experiencing all that I get to. The evening was amazing and it was so special to be able to share what the trust does and how much its changed me as a person and impacted my life. To see what the trust did last year please watch this The Ellen MacArthur Cancer Trust looks back on 2017  and to hear more about how the trust changed my life watch this… #12years12stories Part 4 . This puts it all into words more eloquently than I can typing.. (I just watched back my 12 years 12 stories and am now a blubbing mess so bear with and go watch it)….

In this video filmed about 3 years ago I said that every year I come away with something new…. I’d say this about every trust event I’ve ever attended to, its why I’m happy to go from hospital to meetings and events… I always have something to take away… 2 weeks ago I was sat in the audience listening to a group of my friends share about the impact the trust has had on them. One girl Claire Amaladoss (seriously cool name) who I’ve got to watch blossom into an incredible human and grow in faith and in leadership. She is also a very awesome trustee for the trust. Spoke and said something so profound and on point that it hit me like a train….. She said ‘We don’t pick up our lives to the full, because we know all to well what its like to have to give it all up…’ wow! I can not tell you how true this statement which she fleetingly made was so, so true. Its not only true but still very relevant to me today. The trust enables us to begin to pick up a life again, dream bigger and reach further again it rebuilds us in a way that no-one else can… but I sat there and realised I still had to do some more picking up to really live to the full again.

Recovering cancer-ish and from loosing it all is tough, it comes in waves, and isn’t something you can pick up where you left off…  it isn’t something that day one out of hospital/ remission you can physically manage to pick it all up. It comes with complications, life moves on but you haven’t. It comes with new struggles of how you manage with a life full of complications and long term follow up. A life with that lingering fear of loosing it all again. We have to mourn for the life we lost, the one we thought we were going to get and work out what sort of life we now want…. For any kid this is hard, but for one that has the dreams they have always had taken away- well that’s huge. I always thought I would be a teacher, one that fought for the kids who fall through the cracks, one that inspired a generation who had CAN’T shoved in their face and help them to realise that they truly could achieve anything. I’d worked hard, gained experience and knowledge that was set to equip me well into the future I believed I would always have. Getting sick meant I lost all this… after getting sick I got a complication that means my immune system just doesn’t work so teaching kids who carry all sorts of bugs and always get sick… well it was completely off the cards….

I hadn’t realised until Claire said it though at how fearful I was still about loosing it all. I mean I do still loose it when I get sick with the slightest bug, and it completely knocks me out- and in winter when meeting with people becomes next to impossible- but should this mean I shouldn’t live my life to the full when I can- NO! I actually need to work even harder than most to keep hold of my life in seasons where I’m ill, and push even further when I’m well to live… like really LIVE! I know I’ve still got a long way to go and I’ve already begun to action this in my life right now… I’m super excited to see what’s to come because I know  its going to be so big and so exciting. I’m obviously not going reveal what that looks like just yet but I’m really looking forward to reading this back in a year or two and crying because I’ll see just how far I’ve come- just like I was today watching the film back… at the point this was filmed I was really struggling, I was so tired and so unwell because 3rd year had taken so much out of me I had no idea what I wanted to do with my future, I spent the next year just recovering from doing the degree… now I look back and although I haven’t been anywhere near as creative or productive as I was then I do see how far I’ve come and I see how much the trust has played a part in that. Without the trust I’d never have returned to university, never walked out with a first class honours. I’d never have spent time sailing and really embracing all that this incredible sport has to offer. I’d probably still be the woe is me girl sat in a wheelchair…. I’d never have met some of my amazing friends who have really gone out and lived life to the full and I wouldn’t continue to be inspired by them and the amazing young people we support.  Like always I can not wait to get back out there this summer and see what I learn… but for now I need to prepare myself to be the encouraging voice to get people to sign up to come on one of these life changing trips as this is exactly what I’ll be doing tomorrow.

Just wanted to say a huge thankyou to everyone at the Ellen Macarthur Cancer trust you really have changed my life! I also want to say a huge thankyou to Claire, your words are always so timely and I cant wait to share with you how I respond to your challenge. To Karenza for interviewing me 3 years ago and most of all to Tom Roberts… thankyou for capturing the trust so well, and thank you for capturing that period of my life so incredibly- its now something I can look back on in awe just like everyone was telling me at the time, it is also amazing at how true it all I had to say then is still so true today.

Till next time….

Wen

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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)

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.