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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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)