(Mum helped write this first bit, I was busy, being a couple weeks old) 12th January 2000, at the ripe age of 18 days old I was taken into Barnstaple Hospital on the advice of the local doctor’s surgery who said to my Mum – your baby is seriously ill!

I had not been feeding well and was sleeping continuously, my skin was a greyish colour – the doctor told us to go straight to hospital and unknown to us, had phoned the other hospital, ahead of us arriving, as they were waiting for us on arrival.

I was taken into a room where they immediately did a lumbar puncture in my back. They didn’t know what was wrong but had told my Mum that I had been slowly been declining over a few days and the outlook wasn’t good. That evening an ambulance and specialized nurse arrived from Bristol to transfer me to the Children’s ICU ward in Bristol.

I was put into an induced coma and hooked onto oxygen which lasted for 8 days. They said I had RSV (with only a 0.04% of catching and was highly contagious to spread) – only caused by a common cold – my lung had collapsed and I had 24 hour care with 2 designated nurses at all times. During the day they would work on clearing the congestion by placing a tube down my throat and put me on steroids, my source of food came from my mother’s milk which was fed through a drip. I was woken from the coma and placed in a separate room for a few days. Later, I was transferred by ambulance to Barnstaple hospital, again, placed in a separate room, where I stayed for just over a week before being allowed home to recover from this illness.

It left me with a weak immune system, so everytime I caught a cold etc I would have to have steroids to help fight it plus I had to use a nebulizer this lasted for a couple of years

Very few people know about this, then again it’s not something you bring into a conversation, nor is it very exciting. To be honest, at this stage, it’s quite boring now🤣Since then, thankfully I haven’t had any trouble from these problems. The steroids at this age, probably explains why mum called me ‘King Kong’, as a baby.

Now I eat 600-1500 cals a day. I’ve been doing this for over a year. I find this a normal way to eat now. Meaning I had to be having a lot of calories whilst I was well! I couldn’t imagine doing that now. It’s ridiculous how little you have to eat, if you can’t exercise. I’ve worked out that with the weight I’ve lost. At my heaviest in college- 130kg, if I’d lost the weight then, that I’ve lost now. I’d be 78kg!

I’ve recently been in contact with the Brain Tumour Research team. I’ve given them a little insight to my illness. And how it started etc. if you wish to read it, I’ll leave a link of that below.

LINK TO ‘BTR’ story https://www.braintumourresearch.org/stories/in-hope/in-hope-stories/chae-jenkins

About friends/loved ones, by Chae: https://www.braintumourresearch.org/media/our-blog/blog-item/our-blog/2022/07/11/my-brain-tumour-doesn-t-define-me?utm_source=facebook%20post&utm_medium=social&utm_campaign=blog&utm_content=image%20-%20chae%20jenkins%20220711&utm_term=warm%20-%20none%20-%20none%20-%20worldwide&fbclid=IwAR2u-MmmNRQjfNl9Tu28A5_D5tDjpQEOLDvHLO48poLLpuVTP4Xbdk-m1Lo&fs=e&s=cl

I’ve also had interviews with both Pirate FM and BBC Spotlight. Again links here:

BBC Morning- https://youtu.be/QsmosrERTw4

BBC Evening- https://youtu.be/if6YuqnWfMg

Pirate FM- https://planetradio.co.uk/pirate-fm/local/news/rugby-player-shares-brain-tumour-story-cornwall/

More recently, I’ve started to find myself again, I’ve kinda gone back to how I’ve always been. Not that most people would see any difference, but then again they’re not stuck with me 24 hours of the day. I’ve started to get out and about again. Rugby dinners, weddings, being out with friends! But mainly I’ve seen how lucky I am to be here. This stuffs indiscriminate. It really does take anyone it can get its hands on. No one knows the cause of brain tumours. Only 40% of people will survive the first year after being diagnosed. It’s like a cruel death sentence.

The past few months have brought a few new people into my life. Starting with Emma, 23, from Exeter.

In April this year I got in contact with Emma’s mother. We shared the same support nurse in Exeter. She asked us if we’d be interested in speaking to them, as we had very similar tumour’s and symptoms. Unfortunately she wasn’t able to talk at the time due to being so ill. And unfortunately we can’t have that chat yet. She was cruelly taken away in 2021 at just 23 years old. I’ve been spending some time with her mum mainly. We talk often and share lots of stories. We had extremely similar problems when going through our treatment, it was lovely hearing only recently, that I helped her in some way, like she did me. That meant an awful lot to me. She had a big career ahead of her, just graduating from university and on her way to some great things, I’m sure. I can’t wait to meet her for a boogie and a drink one day.

Secondly came Sunny. (cracking name, I know) 26, across the pond, in a city called LA..

This one came unexpectedly. I was scrolling through social media and up popped this video of this girl. Catching my eye, was mainly her incredibly bad dancing, but then a few words underneath it. Definitely some words I could relate to. I got in contact with her, and soon realised the situation. We called each other the next day. She’s only recently finished her treatment. And I feel nothing but positivity from her. I look forward to supporting her throughout her battle, And seeing her graduate some day in the near future! I’ve unfortunately been in a very similar situation to Sunny. I felt I could offer her some help and support during these times. I know for a fact that 90% of people wouldn’t be able to handle this disease. Again I hope to share a drink with her one day and have a laugh. Even if she does live about 5,000 miles from me!

(If anyone’s keen to see Sunny’s stories and life updates, then give her a follow on TikTok https://vm.tiktok.com/ZMNjteaYM/ )

One thing I’ve notice about the 3 of us. (And this has nothing to do with getting this illness) we’re all very happy and bubbly people! The type of friends people like to have. Illnesses are always given out to the wrong people. Then again, there won’t ever be a ‘right’ one. But there’s one reason why I’m still here. And that is 100% down to happiness. It took me nearly 2 years to find happiness again. Its such a big factor to living. Without it I wouldn’t of been here, gone out to events, met new people, made new friends, seen new things and mainly, gained a good prospective of life.

I still have a lot of bad days though. The imminent death, no life, freak looking, disabled, boring, all that jazz. I can’t do most things outside, like for starters, going out drinking, or walking somewhere, playing sport and all its social aspects that come with it, going to the beach or going to someone’s house. Some of these are achievable but a lot of it comes down to people, not wanting me there. It’s a hassle, especially if theres stairs or off-road areas, and mainly the fact that I can deteriorate quickly, therefore will need to leave the place and go home. Lastly, another reason for people not wanting me around is that, they don’t know what to say to me. Just because I’m ill, they’ll turn into a 4 year old and lose all ability to hold a normal conversation. And if they do speak, it’s normally just ‘how is it?’ Or ‘omg you’re so strong’. A very big sign that, that person, is very uncomfortable. But then again I’m not living in an area where I have good friends. Yes, I’m alive and able to do these things, and I’m extremely grateful, but I want to actually go out and do things now. I’m ready to actually do things again, most of it includes drinking and travelling. Which sounds good to most, but then no one wants to do it with someone who may not be able to stay long, due to headaches or fatigue. Or somewhere that there has to be disabled access, let alone having to actually push the wheelchair.

I struggle with a spasm type problem in my arm. It transfers into both arms. Since all the heat this summer, It’s stopped! This makes sense, as it gets quite achey & painful in the winter. I’ve always known warming it up helps, but never really put two and two together, until it was recently brought up.

Lastly,

Fact’s they don’t tell you about, when first diagnosed with a Brain Tumour..

. The drugs you’re on will make your skin so thin, it’ll just split.

. You can bruise, just from being touched

. You will lose sensations in your body

. You will lose track of the time

. Blood clots are likely

. Seizures are likely

. You will be confused a lot

. You are likely to lose your balance

. You are likely to put on a lot of weight

. Your brain won’t be able to communicate to the rest of your body naturally

. You’ll have a headache, all day, everyday

. You’ll get dizzy just sat still

. You won’t be able to process nor retain information very well

. Your vision will partially be lost/restricted

. You won’t be able to live independently

. You won’t be able to drive

. You can’t control your emotions

. You’ll lose ability to walk

. You’ll lose ability to talk

. You’ll have lots of muscle wastage

. You’ll be depressed

. You’ll have extreme fatigue

. You’ll have severe memory loss

. You’ll never be/feel like you again..

This about concludes it for my yearly update..

Churs, Chae x

Hello all, so i has my biopsy which turned out to show a grade 1 tumour when they was pretty sure it would be a 4 so that’s good.

Then done 6 weeks of radiotherapy with chemotherapy and have now moved onto chemotherapy for 6 months with a higher dosage.

Kind of expected this to finish after my leg lengthening op so just feel like I’m rambling on. Anyway feeling myself improving now, also got some glasses to help. Apart from that, nothing much has changed.

Churs Churs,

Chae x

January 29th was where it went pear-shaped really, I was struggling with lack of co ordination through my left side mainly my arm and leg. I had, had a bad migraine the day before but didn’t think much of it, it passed that night and I drove to Launceston as there was training.

Come the Wednesday I hadn’t gotten much better and i just thought it was just an illness but little did I know it was a tumour that had grown in the back of my brain for who knows how long. With this getting worse I went to the GP on the day who suggested I go up to Barnstable to be safe, with this I visited derriford the next day then spent just over a week in Barnstable. They couldn’t tell what sort of tumour it was due to the rods in my leg being magnetic I’d end up stuck to the MRI machine! So with this on Friday the 7th feb 2020 I had my rods removed from my right femur, after I had come around from the surgery they didn’t see that they was meant to put a new rod in the femur just so it was still usable. Unfortunately I’ll just spend the next 2 months on crutches which isn’t too long really.

The leg isn’t no where near as painful but the scar is 3x as big, running up over my knee and up the leg. It can get very tight which isn’t ideal.

February 21st I found out that this problem was actually an incurable brain tumour that was cancer. The tumour is 18mm and sits just on the right side of the brain. I’ll have a biopsy on 6th March 2020 and will begin chemotherapy soon after.

Until then,

Churs, Chae x

In my last post i talked about coming off crutches etc. But I never really expected to talk about what I am right now.

October 7th was my last blog post and with today being January 27th 2020 a lot has happened.

There’s been some big highs and lows not only with the leg but with life itself. I was hoping this would push me onwards to work harder but it really hasn’t.

I’ve had a couple physio sessions whilst I’ve been off crutches. This has just been learning the basics off sitting, standing, walking etc again. This isn’t so much a physical factor but more of a mental one. It’s a tough one to take on board.

After coming off crutches I’ve realised I took having freedom in the leg for advantage. And I advise anyone reading, just stand up and move ur leg around. Maybe even run, do something on it. Whilst you still can. It’s a helluva thing the human body and it takes time to put things back in place.

With the freedom of being crutch-less I’ve managed to film myself squatting for the first time. Again this was another big milestone.

I haven’t had any massive change that you can see to my leg in recents months, but one thing I know that has changed is what’s gone on inside.

Here are my X-ray from Oct 1st 2019 and an X-ray from Jan 22nd 2020. It shows in the January one that my bone has fully healed and has filled in all the spaces around my rod.

On my appointment on January 22nd I was sent to X-ray like normal then after the professor had looked at the X-rays etc he was happy enough to allow me to return to sport again. This was not something I was expecting and definitely took a second to sink in. I went down to training the next day and had a little run about, is certainly very difficult, especially with a lot of the muscle gone now.

He then said he was happy to put me on the list for my next op which could be about 6+ months time and with looking at going to uni September that was not so good to hear. I came home Friday evening and received a letter from the hospital saying my next operation is on Friday 13th March 2020 which is incredible news as it not only is sooner than expected but fits around everything allowing me to be fit to play rugby again beginning of next season!

Until then I’ll just be working on myself and getting myself ready.

Until then

Churs Churs,

Chae x

Week 15.

I promised another update 9 weeks ago but couldn’t really get myself to write it. So.. what’s happened in the last 9 weeks?

From my last appointment I was given another 8 weeks on crutches which killed me. I was going into the appointment hoping i could start weaning myself off them but was told I was no where near ready yet.

The most positive news I got from this appointment was that my leg had reached its full growth and had actually grown too quick. I booked an early appointment as I felt it was nearly there when they wanted another month of growing. This may of resulted in the leg being 1cm too long!

These are my legs 8 weeks post op. You can see where there is no bone and just a rod. They’ve said my bone is growing very well and quick. It’s grown on the outer layer but not so much in the middle.

Since that appointment though I have felt my leg becoming a lot more stronger. I have walked around on 1 crutch and even managed a quick shuffle with no crutches which I probably shouldn’t be doing…

I’m currently finding a lot of motivation seeing the rugby again. Not only the World Cup being on but I watch most Thursdays and Saturdays down at my club, but it’s not quite like being out there chucking the ball about with your mates and going out on a Saturday night after the game making up a load of shit that never happened but you wish it did! It’s defiantly made me realise how much the game means to me and everyday I move a step closer to doing that again.

My next appointment is on October 1st. 8 weeks on from my last appointment.

October 5th-

I am 4 days into being pretty much crutch free now. I was given the all clear on the 1st to fully weight-bare and have been walking around completely unassisted, but not to far yet. On the 2nd I started back at the gym again where I’ve also used the bike and the swimming pool which is gonna help massively in my rehab. As well as my rehab supplied from my physio which so far is going very well.

My appointment went well. At the beginning it was looking like I could be facing another couple months on crutches which would’ve just finished me. Thankfully the professor came along and said the gap in the bone has already closed and is healing very well. This also now means both my femurs are the same length for the first time in about 8 years. I have though found out my tibia is about 1.3cm shorter on my right leg than my left which is quite normal for most people anyway and won’t effect me at all.

This was the longest and hardest 14 weeks I’ve experienced but just happy to see the other end of it now. Being free to leave the house and drive anywhere I want and get out and go to the gym etc is really letting me see what good is yet to come and I very much look forward to it.

My next appointment is in about 3 months time where I will then hopefully be put on the list to have my metal work removed. This was completely unexpected as this isn’t normally looked at until atleast a year post op so to hear it’s looking good to go ahead only 7 months post op is extremely pleasing. Until then I’ll try update you on my rehab.

Lastly I’ve found a live video of the operation. The only difference to this persons to mine was their rod is entered through their bum cheek whereas mine was through the kneecap. As they say..it’s just carpentry on a body.. https://youtu.be/C4Hmq4WEpjA

Churs Churs,

Chae x

6 weeks down. I can’t tell if this has been the longest or the quickest 6 weeks of my life but has certainly been the hardest.

A lot of goals have been ticked off along the way, from getting in and out of bed without support to even showering by myself, changing myself and basically just in general self care. But most importantly at this time (05/07/19) my leg has grown 3.5cm which makes it all worth it. Just seeing myself look some-what normal again makes me excited for the future.

(Picture 1- taken day before surgery)

(Picture 2- taken 31 days after surgery)

Since my last post I’ve started physio on my leg. Since I’ve been like this pretty much from the age of 13 my body has adapted itself to make it as comfy as possible for me to live day to day. Therefore, as I’m now getting better I’m having to also teach my body how to get better. My entire lower body doesn’t sit in line anymore meaning when I get back to walking I’ll still struggle and possibly struggle more. Everyday I’m teaching myself to sit and stand straight with my legs and hips sat in the correct positions. This is mentally one of the hardest things I have to do and will take time.

I’ve also lost around 15 degrees in my knee flexion. And cannot fully extend either. Again this is just continuous physio throughout the day. It’s not something I go to once a week, give it a crack and say ok see you next week. It’s 24/7 and a fucking nightmare if I’m honest. But I’m getting there, I’m seeing improvements everyday and I want to show myself that having these set backs won’t effect my outcome.

I’ve got my next hospital appointment this week. There I’ll see exactly how much I’ve grown and what I’ve got left. Also a full update on the leg and how it’s healing a long side hopefully driving, activities and getting off my crutches.

See you in 2 weeks

Churs, Chae x

The first couple days after my op was an utter blur. Lots of medication and continuous spasm’s leading to an a lot of pain. On the Wednesday was when I saw the physio for the first time and I got started on the CPM machine. This machine was extremely helpful to getting me better, as it just flex and extended my leg at any degrees and speed I liked. After a week I was at a 90 degree flexion and 0 degree extension which they where quite impressed with. After 10 days I was allowed to go home from the hospital with the surgery and x-rays all looking good. I started my lengthening on the 1st of July so am in the early stages of it. I have to do this 4 times a day with it spaced out well. It can become a bit annoying at times as it’s not something I can just do quickly but is again the whole point of the procedure so is very important. The machine certainly isn’t small as it’s carried around in a big case, which again for travelling ain’t ideal but I can’t see me leaving the house much. I’m already extremely bored and not really sure what to do with myself most of the time. Although I have managed to get myself a mobility scooter which is quite handy and gets me out the house. My next appointment is on the 15th of July so will try and get some x-ray pics and further updates but for now here’s some pics of the scars and the leg itself.

This is it today…2 weeks post op! As you can see it’s got some fair bruising on it, but the swelling has dropped massively. I also got to take all my plasters off before my shower(first one in a while) and having the stitches removed tomorrow morning!

Until next time, churs churs

It’s been a while since I first posted my introduction to this journey. In that time my surgery on the 29th of April was cancelled and moved back till June 24th. This was massively gutting meaning i’ll miss the beginning of the 2020/21 season for definite and also most of my summer. I will be uploading another post before my surgery of my leg and its differences and what I live with. With that said here’s a video of my 2018/19 rugby season. Not the best of clips but mainly just for memories- https://youtu.be/TcoxE2bs6V4