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.

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.

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.