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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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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