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

Advertisements

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.

 

Prayer

Hey all, Finally feeling more human after being on strong antibiotics for about a month- had a week in the middle of the 2 course without the strong ones and still a week left. However I’m finally through it and feeling more human again. It’s been so hard to do much over the past few weeks and at times I felt like I’d completely shut down. This coupled with a few other things has meant at a time when I should have been leaning in to God more I haven’t been. However, I have been super grateful to have some awesome people around me fighting for me in prayer, and generally having my back.

This prompted me to be quite challenged this week, especially on Saturday when a group of people doing academy in Hereford visited. Boy did things really turn around- I’m not gonna go into too much detail but these guys are incredible and I was so encouraged by them, and they have spired me on so much. So thanks guys- if you don’t know the difference you have made- ask Ruth or message me privately and please continue to pray for me. This years academy students really are awesome, if you get the chance hang out with them… or read about how they are putting faith into action here- https://hannahgraycrosby.wordpress.com/2018/01/25/scott-the-artist/

So one of the many challenges I’ve faced this past week and really past 4 weeks, has been accepting prayer and praying for myself. Some in my small group know praying for myself is something I find really really difficult (still do) and having people pray with me or for me is also something I find tough but am learning to accept and embrace it. I was asked a before Christmas why this was and I have to say that until this weekend I had no idea. For those non-christians reading this stick with it, please continue reading and you might gain something from this. Prayer works- it may seem silly but I’ve seen the results of prayer, seen it in my own life and seen it in countless others lives too. Now God isn’t some genie who grants wishes, and goodness knows we have all thrown up that God if your real- let me win the lottery prayer. (He’s probably sick of hearing this one thousands of years ago- so imagine where he’s at now.) However I’ve seen mountains shift in peoples lives thanks to the power that prayer has. I’ve experienced and seen healing thanks to prayer. Yet in my life I still find it tough to accept, and really hard.

At freedom church one of our five DNA (what we stand by as a movement) is Amazing Faith. https://youtu.be/soj_FQbT844 I would say this is probably the DNA that I know I still have a way to go with. Now I’m not saying I don’t step out in faith, or can believe for mountains to be moved. However I find it much easier to believe for this to happen in someone else life than my own. This week I realised part of the reason for this has roots from when I got sick (all those moons ago). One thing I distinctly remember is having people come up to me and tell me that they were praying for me. At the time I would get so offended by this, no one asked me if I wanted them to pray for me. In all honesty I didn’t want them to- I was so lost and confused at why God has caused all of this suffering within our world. Why cancer and cancer-ish existed I didn’t want prayer because I didn’t believe it had any worth, value or purpose. I’d have much preferred they didn’t tell me, or didn’t bother at all. I remember the new vicar at church saying he was praying for me and I thought he was a complete loon he hardly knew me, and I certainly didn’t want prayer from someone unknown… However, now looking back I’m not sure where i’d have been without it. I know that now I pray for thousands of randoms without asking.

This past week God has had me in a place where I’ve physically, mentally and emotionally felt every prayer thats been said for me. Even at times when I’ve woken not knowing who it was that was praying but whole heartedly knowing someone was. I’ve seen the difference of how my church approach prayer, whilst you still have people comment they are praying for you. We are a church that asks can i pray with you/for you? there is something more to this… at the moment i can’t quite get to it. But is powerful, special and immensely life changing.

I heard something once that every human at some point in their lives has prayed. Even if it was for that lottery win, or elusive snow day off school. Thousands upon thousands of people all around the world are praying right now, there are 24/7 prayer organisations (Freedom Church being one of them). Prayer works, else this would have died out thousands of years ago. My prayer life still has some way to go and although I’m great at getting behind and fighting in prayer for others- I defiantly need to work on praying for myself.

This is just one of the many things I’ve learnt this week. I’m gonna try and be better at telling you more about my learnings, and get better at writing blogs from that long list of topics I have, however I’m not expecting this to happen over night (or anytime soon- it is winter after all).

Lots of love till next time- I’ll be praying for you.

Wen x

ps- when i sat down to write this wasn’t what I was expecting to come out.

Pps. Just want to say a huge thank you to the academy guys- especially Ruth Djirackor aka Kenyan Ruth for really helping me by encouraging my spiritual gifting and giving me the boot in the butt I needed.

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