A 26-year-old woman who has been battling a rare form of cancer for 11 months is urging others to trust their bodies and not give up if they think something is wrong.
Christie Williams, from Aberfan, had a benign tumour in her neck six years ago and once it was removed says she was told by doctors that she would unlikely have another.
But, almost 18 months ago, severe headaches and jaw pain led her to think something was wrong. Medics would later find that a tumour had grown back in the same place, but this time it was a rare form of cancer: sarcoma.
Soft tissue sarcomas are a group of rare cancers affecting the tissues that connect, support and surround other body structures and organs. Around 5,300 people in the UK are diagnosed with sarcoma every year and there are around 100 different subtypes, according to Sarcoma UK, while they often have no obvious symptoms in the early stages.
- A group of family and friends have been fundraising for Sarcoma UK, the bone and soft tissue cancer charity, and are set to complete the Welsh Three Peaks challenge on Saturday (April 22). You can donate to their cause here.
"It started when I was 20, when I was diagnosed with a schwannoma, which is a benign version of what I have now," said civil servant Christie. "I had major surgery for that to be removed in 2017. They removed it, said it's benign, it'll never reoccur. I had scans for about 18 months afterwards and they were all clear, and that was that."
But four years later in November 2021, unexplained symptoms included jaw pain and headaches. "They were the two main symptoms and they were really bad. I couldn't sleep or eat."
Christie said she was back and forth the dentist at the time, who suggested she could have a TMJ disorder - which can cause pain in the jaw joint and in the muscles which control jaw movement.
"Then I lost hearing in my left ear, so I ended up in A&E one day. They were looking at my scans previously from when I had a tumour and referred me to see a consultant, and gave me antibiotics because my white blood cells were low."
By this point, Christie was in pain 24/7 and just wanted answers, so made a private appointment at Spire for January 2022.
"I went to the private appointment and he said straight away 'you need a scan, you could have a recurring tumour'. I paid privately for the scan as I would have been waiting too long and at this point I wanted answers. They emailed me the report of the scan, so I found out by email that it was a recurring schwannoma."
She would have to have more surgery to remove it again.
"It took a few weeks to plan the surgery. They had obviously done it once before but it involved splitting my jaw and didn't really want to do it again. But they agreed it was the best thing to do so went ahead. It was around seven hours."
Eight weeks later in May 2022, Christie, aged 25 at that point, and her parents Andrea and Mark were invited in to discuss the pathology results.
"That's when they said 'it's not come back as a schwannoma, it's actually a type of sarcoma' but they didn't know at this point what type. I had to wait another week and that's when they diagnosed it as a malignant peripheral nerve sheath tumour, a rare, aggressive type of sarcoma."
The main treatments are surgery to remove any tumour, radiotherapy – where high-energy radiation is used to kill cancer cells - or chemotherapy and other medicines to kill the cells.
The next step for Christie was to have radiotherapy overseen by sarcoma specialists in London to target what was remaining, but during preparation scans medics discovered the tumour had already grown back 5cm.
"We went a few times to meet the surgeons in June and they wanted to do a 15-hour surgery basically reconstructing the left side of my face to remove what was there, telling me I would need counselling because of how bad I would look afterwards," said Christie, who now lives in Aberdare with her partner Lloyd.
But, after a biopsy was performed to confirm it was indeed cancerous, Christie said the decision was made that operating would be too dangerous due to the close proximity to Christie's main blood vessels in her neck.
So she instead started chemotherapy last July in a bid to shrink the tumour to enable surgery, having five rounds through to the end of October.
"I found out after three rounds that it wasn't shrinking the cancer but was making it stable, so I still went ahead with another two rounds. During round four I had a call from London again to say 'the chemo's not working, no-one will operate, it's too dangerous, there's nothing more we can do, you're going to have to have radiotherapy'.
"I just started to think 'am I going to be alive this time next year?'
"I then wanted to send my scans to as many surgeons as I could to see if anyone else would operate, but said if radio's the only option I'll get started with it."
Thankfully, just before Christie was due to begin radiotherapy, a surgeon from Birmingham came forward and said he wanted to operate, so in early November, Christie and her family travelled to Birmingham to meet with the skull-based surgeon who said he would operate via her nose three weeks later.
"When they operated, it was starting to push through - it hadn't gone through to my brain, luckily, but it was touching more areas behind my nose and eyes."
Surgery saw 80-90% of the tumour removed, and on December 28 - weeks before her 26th birthday - Christie started seven weeks of radiotherapy to try and target what remained. Next week, she will find out how much has been removed in total.
"When they remove cancer they like to remove a margin of healthy tissue around it, but because of the location of mine they can't do that because it's my eyes and nose. It's unlucky that the type I have is really rare, but head and neck cancer in general I've heard is a lot more difficult to treat because of the location."
As well as worrying about how her body would cope to various procedures, Christie has had to adapt to it changing on the outside too - losing both her hair and weight.
"During chemo, I couldn't eat for about a week after each round, then food would taste horrible for another week and I could eat again. The one thing I really didn't want was to lose my hair, but I lost my hair. There are some amazing wigs about, and now I think the hair growth process is actually way more annoying than just being bald!
"During radiotherapy I couldn't eat any solid food at all, I couldn't even swallow soup. I was living off compact protein drinks for about eight weeks. My throat was so swollen and sore, it hurt but also there was no room for food to go down.
"Before all this, I loved food and now I see it as a chore because I've not been able to enjoy food for the last six months. Now, I can eat more but the taste hasn't fully recovered but that will apparently take months."
The NHS website says of the outlook for sarcoma patients: "If it's detected at an early stage or is a low-grade tumour and it can be removed during surgery, a cure is usually possible. However, larger, high-grade tumours have a greater risk of coming back or spreading."
Christie admits there will be a time in the future when she will need treatment again.
"It's been just over a year since my first surgery, it's been surgery then chemo then surgery then radio - I haven't had a chance to recover from each one. Now it's nice to start feeling more human again.
"At the minute, I don't need any treatment but there's going to be a time when I do need treatment again.
"I could be 'cured' for now after this radio but because the margins weren't removed, it will likely come back. It is aggressive. I'm having a head and neck MRI and a full body one to check that's all still clear. I won't know for sure what the radio's done until I have those results, but my oncologist seemed pretty confident that that would sort things out for a long while, at least.
"It's better than it still growing now. After the last 18 months, even if I just don't need treatment this year I will be more than happy. It's been so back-to-back, I've just not had a break, and I've not felt normal at all.
"I guess there'll be a new normal now but I felt so exhausted all the time. Even doing the simplest of tasks during the day have been really hard work.
"It is hard, but it is what it is. I've said 'it is what it is' about a million times this last year! If I was to sit in the house and cry every day, the situation would still be the same."
While Christie tries not to dwell too much on the past, she believes wider awareness of sarcoma both among the public and in the medical profession can only be a good thing.
"I started chemo during Sarcoma Awareness Month in July, so I thought it was a good time to say what I was going through. I thought I should raise awareness. It isn't something that's common.
"So many people around me know what I've gone through but apart from my parents and Lloyd who have sat in every single appointment with me hearing bad news after bad news, they are the only ones who really get how bad some points of this last year were.
"I didn't want to be repeating the same bad news over and over again to different people. I kind of just keep it brief with people."
Right now, Christie is focused on enjoying her life with her partner Lloyd, parents and young dog Woody.
"We got Woody straight after I finished chemo. He's the best thing we ever did. There's been days where I probably would have stayed in bed but I have to get up, I have to walk him and you just can't be sad when you have a puppy running around.
"This year, I'm actually booking holidays and things again, whereas a couple of months ago I wouldn't book anything that was more than a month away because I thought 'I don't know what's going to happen in a month'. But now I just think I've got to make the most of it and book the holidays and things.
"We got a converted van over Christmas so we'll be able to go for weekends away with dog around here. Life's too short and I don't actually know what's going to happen long-term, so I want to be able to go for long weekends away."
As for her support network, she said: "My parents are amazing, I can't thank them enough. If it wasn't for my mother, I wouldn't have had half the scans I've had. She always pushed for things to be done sooner. She was always on the case, sorting out the millions of appointments I had. Both of them and Lloyd have been my biggest support. I'll be forever grateful to them."
As for her advice to others, Christie says trust your body.
"You know if there's something not right with your body, just keep pushing. Not everyone has money to pay private but I think if you do get to that stage and you can afford £100+ for an appointment, I would 100% recommend it. If I hadn't paid private then, the situation might be different now. It might have grown too much. Keep pushing. You need to advocate for yourself."
You can donate to fundraising activities for Sarcoma UK in honour of Christie here.
