We Need To Talk About Cancer

This is something I’ve been thinking about sharing with you for a little while now but I wasn’t ready until now. I’ve alluded to something big going on behind the scenes a few times and I’m really nervous about sharing this, but the truth is that I have Stage 4 cancer.

In June last year, one of my routine scans showed up a suspected tumour in and on my pelvis, and after additional tests and a particularly unpleasant bone biopsy, it was confirmed that I had Stage 4 Melanoma. So much has happened between now and then so bear with me while I fill you in.

The really good news is that at the moment, I seem to be winning the battle. I’m not really sure what my medical status is right now to be honest. By some amazing miracle (and our incredible NHS) my last set of scans were clear, so as of two weeks ago there was no visible cancer in my body. Current status is CANCER FREE and long may it continue! However it’s far too early to be classified as “In Remission” and I won’t be for a while, so I know that I’m not out of the woods yet. I’m so afraid to make an overly positive statement because I’m very aware how quickly things could change. Equally, I believe in celebrating the successes because you never know what’s around the corner. Needless to say I’m extremely relieved and grateful to be in this position and have everything crossed that this streak of good luck and good health continues.

I know what you’re thinking…how on earth did you manage to keep that quiet? Well, for a while at least, it was the easiest option. I kept it quiet for a number of reasons…everything was very scary and very uncertain and I needed to lockdown and be in a bubble to allow myself and my family time to process the new reality we were faced with, and then to focus on what needed to be done. I needed space to think without the noise. I follow Deborah James aka @bowelbabe and I think she’s amazing and was so pleased to hear that she was recently given a similar result to me. Her fight, her spirit and her tireless work to spread the word about cancer is incredible. But everyone’s journey and how they handle it is different and this is what was best for me and my family. I’m fighting in my own way.

The other reason I kept it quiet was because I was very worried that it would affect my work, and that brands wouldn’t want to work with me as they would see me as ‘unwell’ or ‘not up to the job’. The truth is that in those early months, work was one of the things that helped keep me sane. It gave me something else to pour my energy into, beyond cancer. If I was busy I wasn’t thinking about what might happen to me, my family, my babies etc. I have also been very lucky that I’ve tolerated the treatment I’m on very well and so for the most part, this hasn’t affected my ability to work.

So I kept it quiet and I’ve thought long and hard about putting this out there because there is security in privacy. However by the end of last year, keeping everything quiet was starting to have a negative impact on me. I’ve started to feel like I’m living a double life and the pretence of carrying on as if nothing has changed has started to weigh quite heavily on me. By December, I felt like I was burning out, and I’ve no doubt it was a combination of the more obvious challenges of fighting Stage 4 cancer, but also the effort it was taking me to carry on as if everything was ok. I felt drained. So I gave myself a break in December and gave myself chance to regroup. It worked, because we’ve had some positive news, things are looking up and I’m feeling like myself again. I’ve started the year with a spring in my step, I’m full of enthusiasm and ideas for the blog and for the first time in a while I’ve allowed myself to start planning ahead. Not too far but a little. And I’m ready to be open and honest about the journey I’ve been on over the last few months. It’s had a huge impact on my life behind the scenes, and as a writer, I think this is partly my way of coming to terms with everything.

The other reason I’m writing this, is that when I was given the news by my doctors, I went home and did the thing you’re not supposed to do and I googled. I was desperately looking for positive stories but all I found were negatives and if Dr Google was to be believed, my future was very bleak indeed. And that plunged me into a very dark place. I don’t Google anymore. But I know that there will be many more in a similar situation who will do exactly what I did, and hopefully when they do, they will find this, and they will know that there is hope. And hope is everything when you get a diagnosis like this.

So to start from the beginning.

Last June I was told that the Melanoma that I thought I had said goodbye to in early 2018 was back. The truth is it had probably never left. If you’re a newer follower, you may not be aware that I was first diagnosed with Melanoma back in November 2017 after my husband found a dodgy looking mole on my back. I had surgery to remove the mole and the lymph nodes under my left arm in early 2018. At that point, the cancer was identified as Stage 3a and the team at Guy’s were pretty sure that they had got it all so there was no further action to be taken.

I was going back for regular check-ups and scans and I had finally got to a stage where I wasn’t terrified every time I went to an appointment. For the first time I had told my husband he didn’t need to come with me for the results because I was pretty sure there was nothing to worry about. The irony. We had just got back from a mini break in Madrid and I knew he was busy and didn’t want him to miss any more work. I sat down and my Consultant delivered the news that they had found what they believed to be a tumour on my pelvis, which would mean I had Stage 4 Melanoma.

On a rooftop in Madrid, no idea what was about to hit us.

I crumpled. All I can remember is that it was like having the breath taken out of me. My lovely nurse Alison came in to comfort me as I was on my own but all I remember is white noise and sheer panic about not being here for my babies. I phoned Dave and he dropped everything and ran from work across London Bridge to be with me and he must have run fast because he was there in double quick time.

I was told I couldn’t start treatment straight away because they needed to be sure of what this growth was. The problem being that the position of the tumour on my lower pelvic bone meant it was hard to take a biopsy. It wasn’t something Guy’s had the expertise in so I was referred to the Royal National Orthopaedic Hospital in Stanmore. They told me it was a pretty invasive procedure, there were no guarantees they could get the biopsy and that I didn’t have to do it if I didn’t want. But of course I was going to do it. Afterwards my doctor told me I was brave for going through with it, but I can honestly say bravery didn’t come into it. As far as I was concerned it wasn’t a question. You have more treatment options available to you when they know exactly what they are dealing with and I would have done pretty much anything if it meant I had a better chance of beating this and being here to see my children grow up. Though the two week wait for the operation, followed by the week wait for the results was very hard.

We were sent home to wait for an appointment. Home to our children and home to tell my mum, dad and brother, and the rest of our close family the news. I have no idea how we got through those couple of weeks. My husband took some time off work just to be with me, which I think we both needed. Overnight my confidence had shattered and I found it hard to be on my own. He is the strong, silent type and he really was (and continues to be) my rock, it sounds like a cliché but there’s a reason people use that term, he held me steady when I felt like everything was falling away from under my feet.

We managed to carry on as normal as possible with the children, but at night when it was quiet the anxiety would take over. I had several panic attacks and I would scream and punch into my pillow. By this point I was angry. I was really angry that this had happened to me, I was angry with the doctors for letting me walk out of that hospital in early 2018 and allowing me to believe I was ok. I was furious that I was now facing the very real reality that I wouldn’t be here to grow old with my husband and my children. I had to blame somebody because at that point I felt so helpless and powerless to stop anything. I’m not angry anymore, I think this is all a process you have to go through on getting a diagnosis like that. Your mind is an incredible thing and I really believe in expressing things and going with your feelings in order to work them through. I’m not someone who holds things in, I let them all tumble out and it’s fair to say that I cried a lot over those weeks. Through it all Dave held me, and told me there was no way we weren’t going to get through this, when inside he must have been scared as hell too.

I had the bone biopsy and that confirmed that it was indeed Stage 4 Melanoma. By this point, it had been around four weeks since the initial flag had gone up and I had had time to process it all. I still wasn’t sleeping so well but I had calmed down a lot, gained some perspective and it was time for me to start fighting back. I explored all kinds of alternative treatments and dietary choices which might work alongside my treatment. I feel very lucky that my consultants were open-minded and encouraging about me following certain paths, and also wasted no time telling me when something was a bad idea or a waste of time. I stuck to a mainly plant based diet, I cut out sugar, massively cut down on my alcohol intake and focused on my gut health as advised.

They were also keen to impress on me the fact that stress wasn’t going to help me and that I had to have a positive mindset to take this on. I listened and did as they said. I wasn’t going to let this thing get the best of me, so I gradually cried less and started occupying a positive mindset. I stayed busy and I refused to let it drag me down. That’s not to say I was Little Miss Sunshine at all times and I didn’t have wobbles because I did and I still do. But I try to talk it out with my my mum or Dave, and then move on.

Just before I started my first round of treatment, we took the kids to Camp Bestival, we all dressed up as Thundercats and we had the best time. Again, it’s another cliché, but things like this make you see the beauty and joy in moments you might have taken for granted before. When you can’t think about the future, you are forced to live very much in the present and that weekend was magical, despite (or perhaps because of) the uncertainty that laid ahead.

I should say, the children don’t know the full story of what is wrong with me. David and I have talked about it and decided they are both too young to understand. I’m lucky that I’ve coped pretty well physically, so not much has changed in their eyes. They both know mummy hasn’t been well and that sometimes I get tired and have to go to bed, and I go to the hospital to have medication to make me better, and for now I think that’s enough. That was one of the other main reasons for keeping this quiet as it felt wrong to write it without them knowing. However I hope that when they are old enough I will be able to explain everything to them. And I hope that this remains in my past, and not in my future.

So treatment started in August. Melanoma can’t be treated with Chemotherapy so I was prescribed a two-year course of Immunotherapy, you have probably read about it in the newspapers. It hasn’t been around very long but in some cases it is radically changing the prognosis for those with Stage 4 Melanoma. I had four sessions of a drug combo known as Nivolumab and Ipilimumab, once every three weeks, and now I am continuing with just the Ipi once a month for the next two years, which is very manageable thankfully. That’s the plan for now anyway. This will change if the Immunotherapy stops working but lets hope that doesn’t happen. The important thing is I have options. Options are good.

Immunotherapy tends to be gentler on your body than Chemo as it is effectively doing the opposite by taking the brakes off your immune system to allow it to fight the cancer cells. I find it truly incredible that my body has done this. However it’s not without its side effects and I was warned that 30% of patients don’t make it to the 4th double combo and have to stop at three, because the side effects are too much. They range from the milder things like nausea, dizziness, headaches, fatigue, all of which I had; to the much more serious pancreatis, colitis, encephalitis…basically you are risk of any of the auto-immune -itis’. And unlike with Chemo those side effects are permanent. Once you have Colitis that is it, it doesn’t stop when the Immunotherapy stops. Not that any of that matters if you’re alive. Like I said, I’ve been very lucky so far and have tolerated the treatment very well, but just before Christmas I was told that I have Hypothyroidism, aka an underactive thryoid, which I could have done without to be honest, but I’ve been prescribed medication to help me balance all those side effects out and I’m feeling fine, and again, sorry to sound like a broken record, but I’m just glad to be here!

August was also busy for me workwise, I did campaigns with La Redoute, DFS and Disney and they were a welcome distraction and we were allowed to escape for a week to our beloved Cornwall which was exactly what we needed. I came back for my second round and I was feeling very focused.

It wasn’t all plain sailing. Workwise, I was totally fine with the styling and blog writing etc but for a while I found it hard to attend events. Social situations, outside of my core friendship group were hard because my confidence had taken a knock and I was super clingy to Dave, the poor chap. I drew my friendship circle close and only really wanted to be around the people who knew me really well. It was hard to go to an event and pretend everything was ok. Mainly because when someone asked me “How are you? How’s things? How have you been?” I’d have to lie and pretend all was hunky dory, because really who wants to be sat next to the sober fun vampire, when you thought you were out for a evening of light hearted entertainment. Plus I’m a terrible liar. So I pulled back from most of those kind of events for a while. But eventually I did tell a few people in the industry who I consider friends what was going on with me.

It’s not that I became a hermit, more that I was putting all my energy into my treatment and my work projects, and I was tired, so when I did go out, I wanted to make it count and be around the people I loved. And I didn’t want to have to pretend.

Then in September I went to my bestie Carol’s hen do in Ibiza. I had actually ruled myself out because a) I didn’t think I was up to it, and b) I was due to have treatment the day we would have got back. But then something happened which I have filed in the folder #cancerperks (it’s a pretty small folder as you can imagine). In the weeks before they were all due to fly, I started to feel quite perky and like maybe it wasn’t such a bad idea after all. I LOVE Ibiza and I desperately wanted to see Carol fall in love with the island too, as it was her first time. I spoke to my consultants and they encouraged me to go and enjoy it, but don’t do anything silly. Obvs. So at the eleventh hour I was back in. I surprised myself by managing to go out sober raving (yes really!) every night until 3am and wake up at lunchtime feeling refreshed and ready to go again. It was an incredible weekend and I’m so glad I was there to share in it.

We later found out that the reason for my perkiness was that my thyroid was extremely overactive at that point which probably explains both my massive appetite and the fact I had the energy to stay up dancing all night. Like I said #cancerperks (Please, please take that as it is intended. Obviously there aren’t any perks, I’m just trying to find the humour in all of this).

We came back from Ibiza and I had my third round the following day, which also happened to be my 37th birthday. I had been warned that round three might be tough on me, and it was. It played havoc with my hormones and I felt pretty wild with emotions for the 10 days or so after. My mum came to stay with me and helped me through it, even though I was a bit of a cow. That was also the week I hosted the West Elm Networking Event and I’ll be honest and say I had to dig deep for that one. I spent the morning crying my eyes out and feeling massively overwhelmed and then I put my best dress on and went to play the hostess with the mostess. I got through it and I don’t think anyone noticed. It was such a wonderful event and I’m proud I did it, but I remember speaking to panellist’s Charlotte Jacklin and Medina Grillo after the talk and feeling like a right wally because my mind went blank and I couldn’t get a coherent sentence out of my mouth. I think I’d used up all my superpowers…sorry about that ladies!

Very proud to host this West Elm networking event with these wonderful women.

Since then, treatment has continued. I made it to the 4th double dose and it then it was time to find out if it was working. I had a full MRI and Pet scan and at that stage I had no real expectations of what they were going to say. I had prepared myself for the worst but there were so many variables in between. When I went to get the results, my consultant delivered what I think is known as a “shit sandwich”. The good news was that the tumour on my pelvis had completely gone. Which was incredible because of all the things I had expected them to say, I hadn’t expected to hear that so quickly. However he quickly followed up with the news that they had spotted something on my brain. It was very, very small, the size of a freckle, but still….FFS. He explained that it was so small that they had to leave it a few weeks to see what happens. Which I’m sure you can imagine I was thrilled about. He booked me in for another MRI a few weeks later and I would get the results on the 19th December. Just in time for Christmas! They said that if it did turn out to be Melanoma they were confident they could blast it with radiotherapy but that carried it’s own risks so they needed to be sure. That’s when I pretty much checked out of social media. It was too hard to keep up the facade. By the way, I’m posting all these pictures to show that it is possible to have Stage 4 cancer and keep living your life.

Running alongside all of this was the fact that one of my best friend’s mums was fighting her own cancer battle at the same time. She was diagnosed a few weeks before me and our treatment cycles ended up falling on the same day for two of the sessions, so we met up in the Chemo Centre at Guy’s and joked it was like a really shit coffee morning. She was so fit and healthy and I was so sure we’d get through it together. But as is the way with this cruel and contrary disease, things didn’t go to plan for her. She passed away on the day I got my results, and I was, and still am, devastated that she was taken so soon. It’s not my story to tell, but I think of her and her family everyday, and it’s a constant reminder to me of how lucky I am to still be here.

So December 19th came and I was a bit of a wreck. This time the consultant didn’t even give me chance to sit down before he delivered the good news. Whatever it was had gone. We have no way of knowing if it was a trace of Melanoma or something else entirely, but whatever it was, it was no longer there. It was good news but we didn’t feel like celebrating for obvious reasons.

Christmas was spent at my mum and dads in Yorkshire, along with my brother and sister-in-law and my gorgeous little nephews, and I made sure we all got lots of fresh air and walks in. My mum and dad had a tough year between me, and my Nana needing to go into a care home, and I was really glad that my good news took some of that stress away from them at Christmas, as they deserved a break.

We then started 2020 at Bluebell Manor in Devon (review coming later this week) with some of our closest friends. More walking, cheese eating, a lot of fun and all very good for the soul.

I had another set of scans in early Jan and got the results two weeks ago and it was another all clear and to be honest I still can’t quite believe how lucky I am. Like I said, none of us know what’s around the corner but for now at least I’ve given cancer the middle finger and sent it packing, and I’m optimistic that I can continue to get the better of this. Cautiously optimistic but optimistic nevertheless.

I wouldn’t wish cancer on anyone. It’s not something anyone should have to go through. But looking for the positives, I know that it has changed me, and for the better. It’s made me softer, more empathetic and I’ve calmed down a lot. From a work perspective it’s made me more decisive and more determined. You might have noticed that I’ve switched things up a bit on my feed. Interiors will still be my main focus but I want to incorporate the other things I love too, like fashion, food and travel. I’m really enjoying creating content at the moment and life’s too short to put yourself a box.

I want to say the biggest thank you to my family and friends for getting me through this last nine months. I love you all so much. And to Dr Harries and the rest of the Dermatology team, and all the nurses in the Chemo ward at Guy’s, you are all my hero’s.

And a reminder to please check your moles (in fact, check everything!) never wait and see, and always smother yourself in Factor 50.

Oh and it goes without saying but F**k You Cancer!

Onwards and upwards. If you’ve made it this far, thank you for reading.

Jess x