Today’s Reader’s Story is from 23-year-old Jade McCann. Jade is currently receiving treatment for Stage 4 PEComa, a type of sarcoma cancer, and she’s not letting anything hold her back. Here’s Jade’s story in her own words and how she’s making the most of every day.
Your name, age and where you’re from
My name is Jade McCann, I’m 23 and I’m from Greystones in Co. Wicklow.
Your diagnosis story
At the end of 2017, I realised that my left vulva in my pelvic area was a lot more hard than the other. When I went about this, I was diagnosed with vaginal cysts but something about that didn’t feel right. I did everything they asked me to with this ‘Bartholion’s Cyst’. I had salt baths, I massaged it, I took seven courses of prescribed antibiotics. After three months of me repeatedly going back to the hospital, they agreed to operate and remove the cyst. I went in overnight and the procedure was conducted. I was called back a week later and asked to come in for a meeting. This was when I was told that what had been removed was not a cyst at all, in fact, it was a sarcoma tumour – a leiyomyosarcoma to be exact.
I went through intensive radiotherapy on my primary tumour and the next step was supposed to be surgery. But, after my radiotherapy was finished I was giving another scan only to find that my lungs were showing signs of cancerous activity. Sarcoma cancers tend to be linked to activity in the lung so this was being kept an eye on. But once leiyomyosarcoma goes to a ‘Grade 4’, meaning secondary and primary cancers are visible, there’s very little that can be done in the way of curing. The focus shifts to prolonging the life of the patient or keeping the cancer under control.
But even this diagnosis didn’t feel right. So my family set up a GoFundMe and we went abroad seeking second opinions. My tumour was re-tested in London by a Sarcoma Pathologist and again, it came back that IN FACT I had a Grade 4 PEComa. Which, okay, isn’t great. But it is a newer type of cancer with more treatment options available. Sarcoma is a really rare cancer with over 50 different types and there is no sarcoma specialist here in Ireland. So it took me, in total, 7 months to get my official diagnosis that I was actually comfortable with. In the meantime, I was offered to go on various chemotherapies – to which I stood my ground and said no. I’m just so blessed that my gut feeling was so strong, that I had such amazing support from my family, friends and following. That and I did not give in or give up too soon.
How did you feel when you were first diagnosed?
I was absolutely terrified. It was like everything around me just fell into the core of the Earth. I remember looking at my mum, who was there with me, and just thinking ‘What are we going to do!?’. Especially because my Dad had just been diagnosed with Stage 4 Prostate Cancer three weeks before. We were just so confused and lost. Of course, one of my first questions was ‘What kind of God would do this to a family?’ and that is a valid question. But I’ve come to learn that I’m just human, like everyone else, and these things can happen to anyone at anytime. Sometimes it’s not about faith, diet or lifestyle, it’s just about bad luck.
Your treatment plan
As I mentioned previously, I did five weeks of intensive radiotherapy. And after that, I informed my team here in Ireland that I was uncomfortable because I wasn’t under a sarcoma specialist and that I wanted to seek a specialist and get advice from them before I went ahead with anything else. So while I was off researching with my Mum (HATS OFF TO THAT WOMAN, SHE BASICALLY SAVED MY LIFE), I was basically left to my own devices. In which time, I went to a healer and switched to a more plant based diet, took supplements and just tried to really mind myself until something came up. I also started taking THC, the illegal weed oil. I’ve always been against cannabis, personally, but I couldn’t ignore the testimonials that I read online and in print about this element in cancer patients and their success with remission because of it.
After we found out about the PEComa diagnosis, I was started on an oral drug named Sirolimus. This drug is mostly used in transplant patients but in PEComa, it targets the protein that drives the cancer and can be effective for remission results in 4/5 patients. Because it’s a newer drug, we don’t know how long this remission lasts. But I’ve been on it nearly a month and have a scan in November so hopefully we’ll have an idea soon enough of how I’m reacting!
How did treatment go for you?
Radiotherapy of the pelvic area was tough. I’m not going to lie and say it was easy. I was extremely burned down below, it damaged my anus and my bowels and I am now infertile. That’s a lot to deal with at twenty-two. But I had good supports. I think what got me through my more intense treatment was that I just tried to live as normal as I could. Even as an inpatient, I didn’t sit around and wallow. I got up everyday and showered or bathed. I took enough medication so that I could function and go out on dates with my boyfriend or out with my family.
The new drug I’m on, Sirolimus, can cause bowel problems like diarrhoea. It can also cause nausea and headaches. It is an immunosuppressant so you are more likely to catch infections. These, for me, tend to be the only side effects and to be honest, in comparison to how harsh some cancer treatments can be, these are totally manageable. I have Valoid for the sickness and certain medications for pain. I’m also just more mindful of germs and stuff while I’m on this drug so I tend to have my own stack of towels, cups and cutlery at home. It’s small things that can make a huge difference in my comfort.
I do tend to sleep a lot more than ever before whilst on treatment. I am still taking the THC and that can make me stoned so I tend to take it either as a suppository or at night time. If I take it as a suppository, it goes into my system but doesn’t make me high. If I take it at night, I sleep a lot better. No cancer treatment is easy because there is always a feeling that we shouldn’t have to go through it. But I suppose my journey has been most complicated because of the lack of specialists here in Ireland.
Worst/best part of treatment?
The worst part of treatment was definitely the radiotherapy. There are so many harsh cancer treatments, like chemo and radiotherapy, that do not carry enough of a benefit to outweigh the burden. Like when I was offered chemotherapy here in Ireland to prolong my life. I couldn’t see why I would go through that only to pass away regardless with barely any time added on. And I’m also shocked at how okay I was with the concept of dying! I suppose the best part of treatment was the gratitude and life experience that came with it. I’ve never appreciated going to the bathroom normally or bathing myself more! It’s really hard to accept help from strangers. But it does come with a serious chunk of humble pie!
What got you through treatment?
I’m almost embarrassed to say this because I have never been that kind of girl, but probably my boyfriend, Bren, for the most part. And not because he pandered to my every need, but because he just looked at me like a normal person and treated me like normal me through it all. I felt alien enough but Bren just knew how to make it all feel and seem completely okay. Even as an inpatient, he’d come and collect me and bring me on dates almost every night. He’d bring treats in and we’d watch films together. Of course my family and my friends were AMAZING in this, too. But Bren just gave me a serious amount of hope and enthusiasm for the future. And we were only dating three weeks when I got diagnosed! I want him Sainted!
Single best advice that helped you?
That’s a really tough one. I suppose for the most part it’s just not to give up. EVER. I’ve seen it in other patients and just humans in general, the minute you doubt yourself or your recovery, problems occur. I always had a deep down feeling that I would figure this out and really make a difference. But if I had have given up when they told me I was terminal, I wouldn’t have made a difference at all. There’s always another layer to be revealed. And there’s someone somewhere that knows more than we do. It’s about being persistent and just not giving up. Even when giving up seems like the best idea ever. Give up for an hour, cry about it and then get back to work.
Where are you now/how are you now?
As I said, the Sirolimus has given me some side effects but nothing that can’t be managed. I’m living life as best I can and really trying to get myself back on track with blogging, filming and writing. I’m not going to wait until I’m well. I’m going to be as well as I can now and not regret wasting time in the future. Physically, I’m really okay. My energy levels vary but I can rest. Mentally, sometimes I find it tough. I do have moments where I want to stay in bed or cry myself into a nap. But I have amazing people that care so much about me that make sure I do what will actually make me feel better. I’m excited to see how the THC and Sirolimus has treated this cancer. Hopefully in November we’ll be celebrating remission!
How do you feel about your cancer experience now?
I know it’s far from over – whether I make it through or not. But I do plan on making a serious mark before I go anywhere or move on at all. I know it wasn’t for no reason. I genuinely do believe that everything happens for a reason. Sometimes, it’s so hard to see. But once it gets realised and things fall into place, it’s kind of worth it. If I have to be an example for the state to improve their health system, so be it. Or an example for the next person to get a second opinion and improve their treatment plan, so be it. I don’t feel like this was a waste of time.
Has cancer changed you, if yes, how?
It matured me right quick, I can tell you that much! It made me a lot more grateful, compassionate and motivated. I feel like I have a purpose now. Which, before, I did feel but I was always unsure of what exactly that purpose was. I’ve lived this and it’s not in my head. It’s happening, both physically and mentally to me. And my experience can help the next person so that hopefully, their journey can be that bit easier. It’s made me more me – if that makes any sense. I take a lot less crap and I waste a lot less time. I do what I feel like doing and I know now that I really don’t need to care what people think or have to explain myself to anyone. I can be unapologetically who I am. And I’m okay with who I am! Which is something I never thought I’d say. I used to hate certain parts of my body, for example, my weight. But now, all I want is for everything to work enough for me to stay alive. The love handles on my hips are irrelevant. The size of my nose doesn’t matter. As long as my lungs and other major organs are functioning, I’m okay with that. I suppose a level of self-acceptance came with this, is what I’m trying to say. And I probably wouldn’t have felt it if it wasn’t for this experience.
Have you changed anything in your life as a result of cancer, if yes, what and how?
Well, I realised who was really there for me and who wasn’t. So I said goodbye to a lot of people that I thought were my friends. I’m also a lot more conscious of my body and mind. I try to eat healthier and drink more water. I take my medication daily and get my rest. I’ve stopped being so hard on myself – which is probably the most important one! I’ve just realised how petty my worries were before this experience and how amazing it is to be alive.
What helps you now if you have a difficult day?
When I have a difficult day, I find the best thing to do is exactly the opposite of what the voice in my head tells me. So, if my head is telling me to stay in bed, I’ll get up. Even if I only make it to the kettle and the sofa, the garden or the local park, just get up. Because I know I’ll feel better if I do. I also try to do little things that’ll make me feel better about myself. For example, getting back to e-mails or checking in with my care team – things I’ve been putting off! But yeah, difficult days can be really impossible in my mind. But all it takes is for it to be broken down and taken a half an hour at a time (a deep breathe and a cuppa helps with that process) and most things can be achieved.
Single best purchase that helped you through cancer
A good TV, Netflix and a chromecast! Without a doubt. When I first got diagnosed, I made sure my bedroom was patient-ready! Just for the bad days. To be honest, I don’t spend a lot of time in bed. I like to get up and out. But when I do rest or go to bed at night, I enjoy catching up on YouTube videos or Netflix and really indulging in an escapism. It’s just nice to float away sometimes!
If you could give one piece of advice to someone recently diagnosed, what would it be?
ALWAYS, ALWAYS, ALWAYS get a second opinion. Especially if it’s one of the rarer cancers and specialists are hard to find. Google worldwide specialists, get a copy of your reports and scans and send them to ANYONE who will read and view them. Set up a fundraising page and ask your community for help. I was really embarrassed to do that but people genuinely do want to help and contribute in some way. Lastly, consider alternative treatments like THC or going to a healer. I’ve tried these things because I suppose I don’t have anything more to lose and to be honest, it’s not even about results. It’s about feeling productive and well – and alternative treatments have helped me to feel more self-confident and comfortable in my skin.