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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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

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)