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.

 

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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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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.

Hibernation

Hey lovely blog readers,

So again its been a while I guess my new years resolution to have more blogs kinda went out the window along with some other resolutions so I doubt I’ll be making any this year. However I’ve wanted to write something for the past few days and its always been about hibernation.

So right now I very much feel like an animal going into hibernation. I’ve been really bad at replying to emails, texts ect and I’ve only left the house for supplies and to go to church (even that’s a push some days). I’m feeling somewhat distant from my spring/summer self. I forget how much worse I tend to be in the winter months, infections increase and even though at times they are only minor because it comes at a time when I’m already feeling rough so even the smallest of things hits me. I’m finding the ‘hey how has your week been?’ and the ‘how are you?’ questions more and more difficult to answer. No-one likes a moaner (I hate it) but at the same time after spending 80-90% of your week resting really sucks when you know others lives are continuing at a normal pace, all you want to say is actually its been pretty pants but instead you go with the its been alright or the tentative mixed hand gesture.

For the past few weeks I’ve had really bad migraines (partly down to the infusions I have for my immune system), and although the headache part may only last a day- sometimes it’s a good few days before I’m feeling human again. Then the next one comes. Its been really naff because although I’ve not been anywhere near ill as I have been in the past they are hitting me pretty hard. So I just want to apologies to all those who have waited days for a reply to a text, or asked me to do something and I’ve had to flake.

Hibernation is not as glamorous as it sounds, and although I was always pretty envious of animals who hibernated as a kid, now I get to experience it- it’s a real the grass is greener situation. It very quickly gets boring, seeing the same 4 walls, Netflix as great as it is gets boring too, all you want to be able to do is go out for a nice walk or to have a catch up with someone but energy levels or that stupid migraine means you can’t. I’m really missing the coffee shops, and exploring my city. However, hibernating does mean that when I can I will, I’ll get to appreciate the small things again. I also know that this is just a small season in my life and I probably should be doing more to embrace it and to change the way I think about it. Hopefully in a few days time I’ll be doing just that but for now hibernation sucks and I cant wait for spring.

Until next time….

Wen x

Hibernate

 

 

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

 

Immunology

The past few days I’ve been a zombie but a zombie in recovery its been really weird. I suppose it all starts with the confession, I gave up on my meds. It’s not even like I know I don’t need it but about 4 months ago I just didn’t want to stab myself week in week out to give myself an immune system so it wasn’t a complete nahhh I won’t do it. More it got in the way of my life. I would get a text from a friend asking to go for a coffee and I’d do it and say ‘I’ll just do my infusion tomorrow’… I sort of fell out of the habit. Don’t get me wrong now I hadn’t stopped completely (well not until that last month) I just wasn’t doing it every week. It got to the point tho that when I realised I’d missed 3/4 weeks in a row that it was time to fess up to the medics…. So I tentatively called them and explained where I was at. I knew I needed the control taken back off me and so I was really pleased to hear they were happy to have me back on day patient care once every 3 weeks to give me a break.

The medics got it 100% they knew where I was at and they kind of were expecting it. Telling other though some thought it was a sign that I couldn’t cope or was being an idiot playing with my health. (Yes I was but also I’m fine thanks I know my own body). Anyway Tuesday I went into adult immunology day unit (where I did my sub-cut training). I have always had my IvIG on the Teenage Cancer Trust Unit in Cardiff so was a little unsure on what to expect but my infusions on TCT never we quicker than 6hrs normally more like 9hrs. So I packed my bag ready to be entertained all day.

The differences… well TCT next to never had my immunoglobulin on the ward when I arrived at 9am… sometimes it hadn’t even been ordered. I walked into Immunology at 10 to 9 one patient was already sat being hooked up and my immunoglobulin was already on the side waiting for me (sometimes on TCT I could easily wait an hour and a half or more for it to come up from Pharmacy). By 9.03 i’d seen two nurses and my IvIG was up and running. I had it through my hand like normal but instead of a cannula they had it going through a butterfly needle…. So much easier to get in.

I had been warned that the infusion would go slowly due to it being the first time on it in some time. The nurse didn’t need her iPhone or spend an age working out the maths for rates- it was instinctive (mainly because they do it all the time) but you’d have thought this would have been the case up on TCT after 5 years of giving it to me, Lydia and the others. The rate was increased each time with next to no wait for a nurse to come and up the flow. TCT because of the larger social space and the number of people walking in at different times sometimes you’d wait 15 mins before someone could come (I get it 100% they are really busy- but occasionally you’d end up having to press the call button to get someone to come upstairs as they all vanish). However never in a million years did I expect to be told even on the slower rate i was kept on Tuesday it should only take 3 hours. Next time (in 3 weeks time) as long as I’ve had no major side effects (did get a migraine last night but had also drunk so….) it will take 2 HOURS!!!! How then did it always take SOOOOOOO long on TCT. My flat mate when I got home pointed out my infusions at home take me that long because of migraines and that’s once a week so if it only takes 2 hours once every 3 weeks that’s something I’ll have to weigh up.

There are pro’s and cons to IV verses Subcut and I’m sure when I’m re-weighing that up next month or so I’ll end up writing about that. I’m just a bit shell-shocked at the difference in care. This is defiantly something I’ll be discussing with my medic’s next time round as their has to be a way of improving the service when it’s offered through TCT.

Part of me thinks if it had been like this the whole time I’d prob never have switched to subcut in the first place… However I am pleased I switched because the alternative at the time was long days once every 3/4 weeks on TCT.

Recovery from my infusion was a little different than it use to be I ended up with a whole afternoon and evening free (this never happened before I’d usually get home and crash). However, I met family down the bay went on a boat ride wandered round the wetlands then went home and rested before going out for food. Ok so the next day I was a complete zombie and did next to nothing then a rest all day the following day so I could go celebrate someone’s birthday last night. Then it brings me to today which has been a slow day. I hadn’t quite realised how run down, worn out and burnt out I had become being off my meds however my email inbox marked with 450+ unread messages showed me just how zombie I had been. Now my inbox looks much healthier with 0 unread messages. I’ve responded to people who have been waiting months for an answer. So bad! I’m still in that groggy stage that doing anything makes me tired but I’m doing way better than I had been.

Hopefully by the next time I write I’ll be able to do even more and will be feeling much more like me.

Till next time….

Wen

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