My Story

So hey, You wanna know more about me and my life story- Welcome. Grab a cuppa and maybe a chocy digestive and enjoy. You have a choice the short version directly below or scroll down to read the longer version…

I’m Ceinwen aka Wen, now 26 from Redditch but living in Cardiff and am Welsh! Grew up with 2 older sisters, had lots of hobbies. Finished school and went to college to do a foundation in Art- then to uni in Cardiff to do Fine Art. During first year after 5.5weeks of symptoms I was diagnosed with Very Sever Aplastic Anaemia a rare blood disorder (but not cancer although at this severity treated similar to leukaemia). I had a sibling Bone Marrow Transplant in May 2010. I was in isolation for 3 and a bit months, and then a year of anti rejection drugs , hospital visits, and lots of complications (one quite serious which meant more chemo). I returned to uni and despite needing to take it over 6 years start to finish I graduated in July 2015 with a 1st in Fine art. I then completed an internship with the charity CLIC Sargent. I’m now a cancer geek (and survivor), who wants to inspire and create change in everything that I can do.

The Long Version..

My name is Ceinwen, I’ve had many nicknames over the years but I’m most commonly known as Wen. I’m now 26 and I live with some awesome flat mates in Cardiff. I was born and brought up just south of Birmingham in a town called Redditch- although I will always say I’m Welsh- Wenglish at a push.

My early life was spent growing up the youngest of 3, yep- I got not one but 2 older sister (sucks right- only kidding). I had a lot of hobbies from Orchestra (my main instrument being Oboe), to Swimming, to Church youth group and student council (and probably quite a lot more too). I was someone who liked to keep busy. I had lots of ups and downs like any kid- sometimes more than most- but that’s another story. I had lots on my plate at times but I got through my teenage years, passed all my GCSE’s went to sixth form to take A Levels in Music, Art and Drama. After this I went to college to do an art foundation and couldn’t wait to start Uni. Before I started though I made a big leap and I decided to jet off for 3 months and go to Camp America to this day the best decision I ever made (there will eventually be a blog post on this and possibly more about my early life too we’ll see where this blog takes me).

After my Art foundation I went on to study Fine Art at Cardiff Met (formally UWIC). My first year well, the course wasn’t what I expected it was quite disorganized with very little structure- the polar opposite to my foundation course. I enjoyed university life though, the freedom, the friends and the obligatory nights out. I threw myself into the studio during the day and kept my self busy in the down time too- taking two evening pottery classes to improve my skills ready for camp again, and I was a member of Abergavenny symphony orchestra too. All was going well, I began to get use to the course and realised the more I put in the more I got out.

Just before Easter break I got a mouth ulcer days before the spring concert with orchestra, little did I know that this was the beginning of a very serious illness. The ulcer was drained and I was given antibiotics i had already started them when I realised they were coated in lactose- I was allergic so put the stomach bug I’d got down to that. Once back home I went back to the dentist to find that the infection in my gum still hadn’t cleared and that I had to have a tooth removed- I was 20- and so upset that it was my only option, extraction booked for the next day I went home and commiserated with a pizza. I took a bite and two of my teeth on the other side of my mouth just crumbled so the next day it wasn’t just one extraction but 3 and some temporary dental work with an appointment booked a month later to get all of my teeth perfect again.

That next week I kept getting these weird bumps on the roof of my mouth they felt like bubble wrap just before you pop it. I’d push them with my tongue and they would disappear or at least that’s what I thought, during the night id wake up chocking on blood clots some that filled my entire mouth. I’d never had a tooth out and assumed the clots were my mouth healing not giant blood blisters another serious symptom. Week three I developed cystitis (a water infection) my eldest sister was moving house but I was too tired to help and spent most of the day sat on the sofa. I attempted my driving theory test- but fell asleep mid test. No amount of cranberry juice would shift the latest infection so on Easter Sunday after half of my church had told me how ill I looked- and that I should go to A and E I went to the pharmacist to get something to clear up the infection. It did, and I began to feel a little better not 100% but a bit better- I thought I was recovering. I threw myself into uni work with a deadline approaching for the first day back I needed to play catchup. I wasn’t getting better infact although the infections we minor the other symptoms I was suffering we crippling. I couldn’t walk up the stairs without getting out of breath, bend down without going dizzy, I had a constant ticking in my head- it was my own heart beat I could hear. I was tired all of the time, off my food and when I did eat id need to nap mid meal just to get through it (I honestly thought I was dealing with an eating disorder). My hands and feet would tingle and were always cold. But in my head I was recovering. I remember visiting London a few days before I returned to uni with my mam and deciding that I would buy lunch we went to TGI Fridays and I ordered a burger- it took every part of me, but I was determined to finish it- I have never felt so challenged in all my life but I wanted to prove to myself that I could!

It came to returning to uni and despite being behind with uni work I was determined I would return and finish my first year. Packing was hard- id only taken home a small case so it shouldn’t have taken me long (normally I could pack a bag 20 mins) but it took me 3 hours… I’d pick up a pair of socks and then need to sit down and rest or nap sometimes. My family weren’t sure if I should go back but made a deal with me that I could go back as long as I went to the doctors first thing the next day. I agreed but secretly wanted to push the doctors back so I could at least go to uni in the morning. On arriving at my flat I was greeted by one of my flat mates by OMG you look like death! It was at this point I decided that I would go to the doctors. I was shattered and could hardly hold a conversation so decided not to go to the pub with my flat mates but instead head straight to bed.

The next morning (19th April 2010) I’d set an alarm for 8am to call the doctors and had an appointment at 9.20 I thought I should call back and let someone who really needed an early appointment have it, but then I noticed my legs- they were covered in these red dots. I thought I had chicken pox but at least I now had something to show the doctor so kept the appointment and left for the doctors with an hour to get there- it was a 30 min walk but id been a bit slow recently so gave myself some extra time. Every few yards I’d need to stop and rest, I got to near uni (a 15 min snails pace walk away) and realised it had taken me 30 mins already- I wasn’t even half way- so got a drink from a corner shop and then had change to get the bus the rest of the way. I arrived at the surgery just in time. At the reception desk I was greeted by what at the time I thought was a rather odd comment ‘You have got an appointment haven’t you?’ . I was thinking yea of course that’s why I’m here, not she is looking at me like I’m the sickest person she has ever seen. I very quickly got called through to a doctor I’d visited before as I walked in he began saying ‘Hello, lovely to… SIT- what are your symptoms and how long have you had them?’ I still didn’t realise how sick I looked. I explained that I had been ill for a few weeks and that I had this rash (I later found out this was a platelet rash). He sent me for emergency bloods I asked if I could go back to uni and wait for the results. He told me no but that I was to go home for bed rest but also needed to make sure that my friends would be able to check on me at least once an hour. I nodded in the right places but im stubborn, and all my friends were in uni so if they were going to check up on me- uni was where I needed to be. After a little light headedness I left the nurses station and got the bus to uni.

There I burst into tears on a friend as it just hit me that it’s not normal to have bloods taken there and then, she reassured me that all would be ok and that the doctor was probably just taking a precaution. I then walked into the sculpture studio to see one of my tutors walking towards me- he grabbed a chair and pushed me onto it saying ‘What the hell are you doing here, you need to be in bed!’ I explained the mornings events and that I needed to find my friends to get them to check on me, I passed on their names and off he went to look for them- whilst shouting at a 3rd year to not let me move off that seat. Next thing I remember he is back holding his car keys telling me there was no way he was letting me walk the 15 mins back to my flat- he was driving me. I still didn’t realise how ill I was.

At lunch time I was busy cooking when my phone which was in my bedroom went off- I tried to get to it but missed the call by a second. I walked back into the kitchen and began listening to the voicemail telling me he had the test results but before I had a chance to finish listening to the message the doctor was phoning in a panic again. He said I needed to go back in to the GP surgery, and to take an overnight bag just incase he needed to send me up to the hospital (but he said just incase- so I wasn’t going). I phoned my friends Claire and Lisa who came straight to me. Claire at this point hadn’t seen me- apparently I had panda eyes and looked like a ghost. They called my cousin who then phoned my uncle and before I knew it a bag had been packed and my cousin and uncle were there ready to take me to the GP.

I entered the G.P’s office and all I can really remember is that he said with blood counts so low I shouldn’t be able to walk, talk or be conscious. I was going to the hospital. But it still didn’t hit me just how ill I was. He talked to my friend Claire about where we needed to go to when we arrived at the hospital he also suggested I got a wheelchair from the car to the ward- the look I gave Claire firmly indicated the wheelchair wasn’t happening.

On route to the hospital I called my mam to update her, and to convince her not to travel the two hours at 6pm at night as visiting would be over by the time she got there and I’d be home tomorrow anyway.

On arrival at the ward we had to be buzzed in, I was expecting to have to tell them who I was but was greeted by name by a nurse id never met- yet again my panda like completion served as an ID to how ill I was. I was taken to a small waiting room for the doctor to come see me. Dr Charles explained that I’d need some blood and to have some further tests done, he explained that I probably wouldn’t want my male family members in the room. So my friend Claire came into a small room in the Bone Marrow Transplant ward (I didn’t know this at the time), I had to have a bone marrow aspiration. For those of you that don’t know- it’s a long needle pushed into your hip bone to get fluid out from the inside of your bone- also know as the marrow. It is as painful as it sounds and because I was so ill (not that I realised yet) I couldn’t have any pain relief incase I didn’t wake up. I was super naive and thought everyone who came into the hospital had to have this test. I was going in and out of consciousness and couldn’t feel my then traumatized friend who was stroking my hand. I had never felt pain like it so kept telling Claire how I would never have children because I couldn’t cope with the pain.

As soon as the needle was out the blood was up and going in fast. My Hemoglobin (red blood cells) were 2.9 they should be about 16.0, my platelet’s (the ones that help you clot if your bleeding) were 2 they should be 300 and my white cells (to fight infection) were 0. I called my mam to update her- and told her there was nothing wrong with me so there was no need to worry- one of the nurses in the corridor shouted ‘Ceinwen you are very ill, and need to take this seriously’.

Apparently I was ill- really ill- but I still planned on leaving around 2am when the blood was taken down to go clubbing. I had never been in hospital before and I thought the nurses would be asleep. At 2am the multiple blood transfusions stopped and were taken down, I tried to move and was in so much pain I realised there was no way I was getting into town. I couldn’t even get to the toilet on my own. I tried to get as much sleep as I could between the endless alarms going off- I’d just drifted off when they came in at 5am to do some obs and take more blood. 7am they came round asking if I wanted breakfast- you’d think in hospital they would let you rest.

When I finally woke up properly it was nearly 10am, it was at this point I realised they did some tests last night- I’m going to need some results before they let me home- so decided I would be out by lunchtime. Then entered 3 doctors- 2 juniors and Kate- the violinist from Orchestra who would take me when my normal lift couldn’t. I said Hi and she ran out… apparently she wasn’t expecting to see me in the bed so ill- she’d only seen me 6 weeks before at our concert. She later popped her head in an apologised saying someone else I knew would soon be in to tell me what was wrong and answer my questions. There was me- 20 a first year uni student how the hell would I know anyone else.

But sure enough soon entered another orchestra member- the bassoon player Chris who sat behind me, and in the group I’d drink with on our breaks. I’m sure at this point he told me what was wrong- but I didn’t take in any of it. All I wanted to know was if I could fly out to camp in 7 weeks time. When he said no- and that I’d still be here then I was devastated. My whole world imploded, not going to camp was more serious to me than any medical issue. They waited until my mam arrived to tell her and then I was told the news again, still I didn’t take it in. Kate came in to try to help get me to understand it while Chris took my mam to explain treatment options. She told me it wasn’t cancer- and that’s all I really took in, but then she mentioned sending me to a teenage cancer ward (I was 20 not a 13-year-old kid who just wanted to play video games so wasn’t that keen on the idea). I didn’t have cancer, and I wasn’t a teenager yet this is where they wanted to put me- I was still all for going back to halls thank you very much. They said I had some sort of Anemia and it had something to do with my bone marrow. But for someone who got a D in single science first time round (I did resit to get my C!) I had no clue what they were talking about!

When I got moved and given the grand tour of TCT I loved it- cool lighting that you could change colour, music in the shower, a pool table, duke box and sky TV. I now understood why they wanted to move me there. I had some more blood- which by the way gives you ooodles of energy although my blood count levels still weren’t ‘normal’ they were miles better- I’d been living a sort of half blood life! Later that day my mam explained what the bone marrow did- Produces all your blood- and that mine had stopped and your blood dies so I was running out. For the first time I understood this was serious, but it wasn’t cancer so it wasn’t that serious. At this point my top concern was informing my bosses at Camp that I couldn’t go- it was the hardest thing for me to do. I hated letting people down, camp was my whole world, my family, my friends, my escape- I’d been counting down till camp from the moment I’d set foot of grounds the year before, and spoken about it every single day since leaving. That call was hard!

The next day Dr Wilson (my consultant) came to speak to me about what treatment would look like, and to drop yet another bombshell- this time that I wouldn’t be able to return to University for at least a year.  He talked about 2 options one of which most likely wouldn’t work just give time before going onto the other option. My only option was a Bone Marrow Transplant and I needed it fast, so my sisters would be tested as soon as possible. The only question I could ask was if I went for the other option (the one that wouldn’t work) when would I be able to return to uni. The answer given under protest because the treatment option wasn’t going to work- instead of 1year minimum it was 6 months. That would take me to October at the latest so when uni re-started. In my head this was the only option- I didn’t want to have to take any time off from uni! When he told me that it wasn’t possible and it would be at least a year off from I was distraught and cried endlessly- My cousin Stephen was there when I got the initial news, the blow about camp he was the first for me to tell and so he was who I wanted by my side to tell me it would all be ok. My cousin Kate tried to visit but I was so upset I didn’t want to see her (sorry Kate!) I wasn’t in a good place. I had a poor student nurse comfort me but I kept telling her that she couldn’t possibly understand because she got to continue to go to uni.

The next day they try a different approach to help me understand the seriousness of the condition. Chris the bassoon player from orchestra (also a hematologist) came to explain my illness and its seriousness using orchestra as a reference. At some point I will do a blog post about this but basically it was that unlike leukemia where there are various stages of treatment and multiple options with a large amount of treatment time. I had one option (like a soloist) with only one window of opportunity. I then realised that my illness was actually more serious than most cancers because we had to act so fast.

My sisters were tested and a few days later I had the fantastic news that both were a match- I was crying so much telling everyone that people thought it was yet more bad news! I had to have some more dental surgery as they couldn’t risk any infections on transplant (so I lost another 3 teeth). I had my Hickman line (some tubes they use to give you fluids and chemo) inserted, and I was all ready for transplant! My date pre transplant therapy was supposed to be a week after diagnosis but my gums hadn’t healed so they decided to let me home for a few days to visit my dad. Soon enough it was time to start prep for transplant- and the chemo began.

I’m not going to go into details on my treatment journey and what it was like here- might save that for some other blogs. Basically though I spent 3 and a bit months in isolation, pumped full of drugs, given a new immune system and 2nd DNA in the form of the bone marrow. I had lots of hick ups along the way including a very scary complication called PTLD- which is linked to the EBVirus which if left untreated would have caused lymphoma (fun). Some extra chemo, lots of immune suppressants and hospital visits I was allowed to return to Uni a year and a half after I left. I went in thinking I was normal again- how wrong I was (but again this is another story). I ended up needing to take 6 years from start to finish with my degree.

In July 2015 I graduated with a First Class Honors in Fine Art. I have quite a few complications post transplant, which I will get into in more detail throughout my blog. I’ve also completed an internship with an amazing charity CLIC Sargent and have been apart of lots of work with many charities. My life since that day 6 years ago has changed drastically- it’s not the life I had before and nor will it ever be.

Now I believe in shouting about cancer as much as I can! I believe in participation and being able to use my voice to influence decisions and make a difference to the lives of those who will walk this path behind me. I hope my blog can help others, myself and those who haven’t got the foggiest about cancer. I hope not to moan or for this to ever turn into a Woe is me so that’s why I’ve tried to write my story in full (well full-ish) so I don’t have to re-hash this- as I’m more than just a diagnosis and as much as I hate to say it ‘I’m a survivor’. This is my tale.

 

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