Events over the last ten months have significantly changed my life, but I received some good news recently and to celebrate, I bought myself a new, limited edition Shetland-designed skirt. This is my first ever fashion post, I hope you like it!
Two in a million, my surgeon said to me recently. That’s how often my tumor occurs. I’m not one in a million, so I’m not to let it go to my head, he added, with a hint of dry humour in his voice.
Two years ago I was bike-packing through the highlands of Scotland with a friend of mine. We were on an epic adventure – 400 miles of bumpy tarmac culminating in a climb of Britain’s highest mountain. Somewhere between Bettyhill (Betty on the top of a really flipping huge hill, I might add, if you’re using your own leg power to get up there) and Lairg, I remember stopping by the roadside for a moment and thinking to myself “life doesn’t get much better than this”.
Then a little voice in the back of my head said, “You’ve got a tumor”.
I remember berating myself at the time for being so negative, and I dismissed it. Life was good – I was coming up to my 40th birthday, I was as fit as I’ve ever been in my life, with three wonderful children and a loving husband. I had a job I loved, one flexible enough that meant I could take a week or so off to go on an epic adventure like bike-packing from Shetland to Fort William to climb Ben Nevis just because I wanted to.
The thing is, I did have a tumor.
I don’t know how long it had been there, silently and painlessly growing in the buccal space in my cheek. I found the pea-sized lump one evening last Autumn as I absent-mindedly brushed my cheek with my fingertips while reading my book in bed (I was reading Diana Gabaldon’s Voyager, if these details interest you).
Fast forward ten months and I’ve recovered well from surgery. In six months the tumor had grown from the size of a pea to 3.1 x 2.0 x 2.0 cm. My surgeon skillfully removed it intraorally, so I have no visible scar (17 stitches inside my mouth though, and that was no fun!). It took the pathology lab six weeks to figure out what exactly it was, too, finally diagnosing it after cytology and immunology tests as a solitary fibrous tumor.
Solitary fibrous tumors are very, very rare neoplasms which, when they do appear, usually appear in the lung pleura, and even then there are only around 800 cases reported, worldwide. There are only 38 cases of solitary fibrous tumors appearing in the buccal space – two in a million, my surgeon said, and I was the first one he’d ever seen in his 30-year career. Trust me to grow something weird.
They’re usually benign, but solitary fibrous tumors (even benign ones) have been reported to metastasize, recurring or appearing elsewhere in the body up to 15 or even 20 years later. Very little is known about the behaviour of this neoplasm, so although mine was considered benign, they’re going to keep a very good watch on me for the next 20 years, just in case.
I can’t possibly express to you how reassured I am about this. Despite the fact that the final pathology report indicated that there may have been incomplete excision (which, from the literature I’ve read, is a contributing factor to recurrence/spread. I’ve spent the last few weeks worrying that I was going to need radiotherapy or further surgery), my surgeon is very confident that he did indeed get it all out.
So, to celebrate the good news of finally feeling I can move on with my life and stop worrying, I went clothes shopping last Friday after my follow-up appointment with my surgeon. I’ve got a couple of press trips lined up at the end of this month and the start of next, so I wanted to get something new and nice to wear on them.
The thing is, I utterly detest clothing shopping. I tend to buy my clothes from the village charity shop and then wear them until they fall apart so I don’t have to do the whole new clothes shopping thing. The only thing I dislike more than shopping for clothes is shopping for shoes. I remarked this to the shop assistant in the new Burns Lane Clothing shop on the Lerwick high street, saying I’d probably only browse for five minutes before my attention span waned and I’d leave.
In that five minute window, my eyes fell upon a row of skirts – their bright colours and unusual patterns lured me over. The shop assistant said that they were a new range launched that day by local Shetland textile artist Angela Irvine. I kept going back to the blue and green one, with its fairy-like butterfly pattern. My husband suggested I try it on, just to see.
It fit perfectly! While waiting, and worrying for surgery, I’d put on a stone in weight from inactivity. It wasn’t that I was over-eating (although there may have been a degree of comfort eating involved), it was just that I stopped exercising and the weight crept on. I’m delighted to report that I’ve lost most of that weight now, having restarted my fitness program once my energy returned after surgery. Having this skirt fit perfectly was… a rather nice feeling.
So I bought it.
Inspired by Shetland’s nature, this ‘Migration’ inspired quirky, limited edition mini skirt is a beautiful work of art. The pattern is a hand-drawn engineered butterfly print and traditional hand-knit Shetland fine lace patterns in undyed Shetland wool feature on the two pockets. A local dialect phrase translating as ‘sit down and we will have a drink’ is hand-painted onto both the front and back panels of the skirt. It’s absolutely stunning.
It turns out my skirt was her first sale on the launch day, which is a little bit exciting. I liked contributing to another individual’s potential feeling of success, and not spending my money on mass-produced factory-made garments. Win-win. A thoroughly enjoyable shopping experience.
It was a beautiful, warm, sunny summer’s day that day and I wanted to take a photo of my new skirt to share on Instagram for three reasons: to celebrate my good news, to celebrate Angela’s launch day and to begin the process of overcoming my aversion to being photographed. My husband and I went to a local scenic spot and had a lot of fun with this photo shoot.
The buccal branch of my facial nerve was a casualty of my surgical experience. It was taken out along with the tumor, but it’s a small price to pay. It means that I don’t have the function of my top left upper lip, but it’s hardly noticeable unless you really look. I can’t whistle like I used to, I’ve had to adjust my drinking style from a sports bottle when out on my bike rides (that was a messy lesson the first time I discovered I couldn’t drink properly!), chewing is still hard work (but I think it might get easier with time as my facial muscles repair) and I can’t say the f-word with any degree of conviction without sounding like a snorting horse. Guess that means I should stop saying it?
My smile is a little bit squint too, but at least I’m still smiling. There’s also some lingering paraesthesia, likely due to sensory nerve trauma. It’s a constant reminder for me though. My perspective on life has very much changed over the last ten months. I am, more than ever, focussing on living in the now. Life has slowed down, and the things that I used to stress about don’t seem as important any more.
I’ll be getting quarterly check-ups for the next few years, as well as yearly MRIs, so I feel very reassured that if/when it does come back I’ll be well taken care of. I’ll be ok. Everything will be ok. Today is the first day of the rest of my life.
Shop the look
Migration Skirt by Angela Irvine £125 (size 10-12)
Vero Moda Vmmaxi My Soft Long Tank Top Noos £9 (size XS)
Marco Tozzi Boots (from a few seasons ago, bought at Cee & Jay’s) £80 (size 5)
Uradale Farm Organic Shetland Wool (hair wrap)
Charnos opaque matt 60 tights, black (medium) £5.99
Low-Carb Gluten-Free Cauliflower Pizza Crust
I am so glad that it was better news than you were expecting – I held my breath when I read tumour 🙁 Love your skirt though – here’s to pretty skirts and positivity!
So glad to hear all went well! Your positivity and outlook on life is awe inspiring! You look beautiful in that skirt, it’s such a gorgeous colour! Siobhan x
I am such a strong believer of the law of attraction and I believe the more positivity you give out to the world the more you will receive back and I truly wish that for you ❤️
You have an amazing outlook on life and that skirt looks absolutely amazing!
Wow it seems like you’ve been through a lot. You have such a positive attitude about life it’s wonderful to read your blog. And that’s a lovely skirt by the way!
Bless you hunni. It sounds like you’ve been on quite the journey, but after everything you’ve been through I can tell you’re still thriving and it hasn’t dampened your spirit. Atta girl!
Dear Elizabeth,
Thank you so much for sharing your experience, strength, and hope with all of the world. I have had solitary fibrous tumors four times now. I hope that yours never come back! I have recently had genetic testing done and have just started a clinical trial (that I’ll be the first SFT patient to get this combo of meds) at Dana-Farber Cancer Institute in Boston, Massachusetts, United States. The theory is that they can arrest the tumors I have and stop new ones from forming. I’d love to share whatever knowledge I have with you. I’ve read almost every article written about SFT’s over the years and while I’m not a doctor, I sure have learned a great deal about our kind of cancer. Here is my email information if you’d ever like to get in touch: [xxxxx – email edited out for privacy].
Sincerely,
Liz Wilson Greer
Sorry to hear everything you have been through, reading this makes me really appreciate life that much more! Love your skirt!
Wow, it sounds like you’ve gone through so much lately, but I have to say that skirt is gorgeous x
What a worrying time you have been through. I’m so glad the worst is behind you. That skirt is stunning.
Bless you hunni. It sounds like you’ve been on quite the journey, but after everything you’ve been through I can tell you’re still thriving and it hasn’t dampened your spirit. Atta girl!
Bless you. It sounds as though you have been through so much. I am so pleased to hear that you are on the mend and that they will be monitoring you closely. This is indeed the first day of the rest of your life. I have no doubt you will live it to the full.
The skirt looks gorgeous and it is great to see some images with you in them too. x
i’m sorry to hear you’ve been on a tough journey, but pleased that you’ve been well looked after and are hopefully in a much healthier position. what a great idea to celebrate with such a beautiful skirt, it looks great on you.
The skirt is gorgeous, its so different. it looks great on and I am sure you will dazzle on the press trips. So glad that you can leave the worry behind. Sounds like you have dealt with the whole ordeal really well and are an inspiration to many x
I’m so glad your surgeon is confident your tumor is gone. Also good to know you’ll be well cared for going forward. And I think you thoroughly deserve that beautiful skirt. It’s absolutely beautiful and looks amazing on you.
You have been through so much and been so brave! Shopping is the perfect way to celebrate and I love your skirt choice 🙂
I really love the pattern on this skirt, it’s so quirky and unusual – little chance of turning up in the same outfit as anyone else!
That is a beautiful skirt, so vibrant and cheerful. Sounds like you have been on a real rollercoaster but it can only be onwards and upwards from here
The medical team sound like such an amazing team of people. Your skirt is absolutely gorgeous!
Xx
Your beautiful and life-affirming attitude match your gorgeous skirt. I’ve followed your story on Facebook and am so happy for you and your family. I’m also really glad that you had such a brilliant surgeon and team. The NHS is a precious institution. It saved my life and it looks like it is saving yours. Something to celebrate – and remember when times inevitably get bumpy, as life tends to do. You’ll always remember that feeling when they say you to go live your life. All the very best to you. And damn, if that’s not the most beautiful skirt! xx
So relieved for you Elizabeth. You and the skirt both look stunning, I look forward to seeing more pictures of you on the future
The skirt is amazing … almost as amazing as knowing you have come through and out of the other side of surgery with such a good prognosis.
I don’t often comment, but love your blog, and LOVE your skirt! I’ve never been to Shetland, but we are spending our holidays going further and further up the Scottish coast, so hopefully we’ll make it up there before long. I’m sad that you’ve been having a horribly tough time recently, but glad that through cooking, eating (and shopping) you’re putting a smile back on your face 🙂
h xx
Congratulations on getting through such a scary time and I think you definitely deserve a treat or two after the year you’ve had and this skirt looks amazing on you!
C x
Wow that sounds like quite a lot to deal with over the last 10 months – so pleased you are feeling positive. I have been told by a doctor I was 1 in a million with a diagnosis and it did not feel good to be that unlucky. But it is amazing what we can overcome. I think your skirt and your photos are really lovely and look just the thing to cheer you up. Good luck with learning to live with your mouth slightly altered and good luck with your check ups.
I’m so pleased for you! That must have been so worrying and stressful. It sounds like you are being well looked after by the medical team.
The photos of you are so beautiful and the skirt suits you so much! It’s gorgeous!
I am loving this skirt it is gorgeous, i am glad you can move on positively with your life, your positivity is infectious.
I was meaning to comment on here after hearing you on the radio yesterday and then I saw this post. Well done on getting through – and for such a positive outlook xx
Wow Elizabeth what a lot you’ve been through! So glad you’re over the worst and you look amazing in your new skirt it really suits your personality. Hope you enjoy wearing it!