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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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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