Starting this article was always going to be the hard part; I have kept so much of my story to myself over the past twelve months that I know that once I get going it will be like opening a floodgate, so then the problem will be as to what to include, what is relevant and interesting to you as a reader. I guess it’s best to start at the beginning.
Back in 1992 I was diagnosed with a skull tumour, it was very aggressive so needed to be removed, but after an emergency operation it started to come back very quickly. This led to lots of tests and seeing all different kinds of specialists at different hospitals including Great Ormond Street, until I was eventually diagnosed with Multi-System Langerhans Cell Histiocytosis, a rare condition that is normally found in children under the age of twelve months. The treatment was intensive intravenous chemotherapy, which thankfully cleared all of the symptoms and removed the tumour.
Back then, there was very little information available, but now things are different and there are a couple of websites that have more in-depth details so if you want to find out more about the actual illness, I will add a link at the bottom for you that in my opinion has the most clarity.
I have had several relapses over the years, which has led me developing different conditions such as diabetes insipidus, diabetes type 1, hypothyroidism and also my body is unable to manufacture it’s own natural steroid, cortisol, I even had a tumour in my ear, which after treatment, when it healed, the bone fused over my eardrum leaving me completely deaf in my left ear. As a result of a relapse back in 2010, where I once again needed chemotherapy, (this time in tablet and injection form), I was finding it challenging to work regular 9 – 5 hours in an office environment, so took the decision to set up my own company, Virtual Support UK Ltd, providing virtual administration and services to businesses and supporting myself financially while working around my symptoms and many hospital appointments.
This is a condition I have lived with for many years, having periods of remission followed by relapses and periods of treatment to keep it in check; the general treatment being chemotherapy and immunosuppressants in tablet or injection form, medication I could self-administer.
Back to the Present: 2019 – 2020
I was completely unprepared for a new onset at the beginning of 2019 which took the form of a particularly aggressive skull tumour that was pressing into my brain causing intense pain. My LCH had returned and was once again in my bone marrow. After tests, scans, and consultations, it was decided that I needed to undergo intensive intravenous chemotherapy, a stronger dose than back in 1992, as further tumours were also found in my shoulders, spine and hips – I had thought the pain in these areas, as not so intense, were due to my age!
It was at this time that I confided in a client, who felt more like a friend, with whom I was working closely, that I had to pull back on some of the ‘unpaid work and services’ that I was providing to her as would need to concentrate on giving myself time to cope with the weeks and months ahead. I did not go into specific details about the treatment, just that I had to take care of myself more. Sadly this confidence was not kept and before long I heard that this client, ‘acting out of concern’ had passed on information to other clients and colleagues I was supporting, asking them to ‘hold back’ and not to ‘bother me’ as I was so very ill. I felt completely betrayed and it goes without saying that I stopped working for this particular person. To safeguard my livelihood took the decision to keep my illness and treatment a secret, never revealing the full extent; some of the people I work closely with will be learning the full truth in this article for the first time.
It is not that I wanted to be dishonest or mislead people, but I had worked hard over the past 9 years to establish my business, working through each relapse and managing to support myself and more importantly create a niche for myself in an industry I loved; To lose this as would have been too much to bear.
You may wonder why I thought I would lose business, well to put it simply, some people are scared of cancer, they almost have a fear that they can ‘catch it’ by association and I was scared of how I would be ‘viewed’, would clients feel that I was incapable of looking after them?
I have lost a few close friends (well I thought of them as friends) to their fear of my illness, so I had learned to be protective of the truth. I had also recently formed EY Matters and although Virtual Support is my business, EY Matters is my heart. Many of you reading this may have heard me use this phrase before, but it is true! I did not want to ‘colour’ people’s view of me or what I do by them having knowledge of what was going on and neither did I want pity or applause for continuing to work in the circumstances. I had formed my Virtual Support company to provide me with a sense of future, an income and also a means of focus during my periods of ill-health and it has been the ‘thing’ that has in a way kept me going, but now I had EY Matters as well and coupled with my love for all things Early Childhood this gave me even more of a reason to keep going.
The chemotherapy sessions commenced in May 2019, 5 days out of every 28 I would be hooked up to a drip delivering the toxic treatment I needed. I persuaded my Oncologist to allow me to attend as a day patient, arriving at around 2pm each day on treatment days so I could work at home in the mornings and he also allowed me to bring my laptop with me so I could work during the sessions. Following the infusions, I was allowed to go home and then would rest for a couple of hours before picking up any tasks that I needed to complete for clients or EY Matters. I was in essence working an 8 plus hour day during the treatment, and then in the 3-week gap between rounds of chemo, I would work as normally as possible, in so much as the side effects would let me.
There were a couple of people in the sector that became aware of what was happening, and without their calls and support, I doubt I would have managed to keep things as hidden as I did and I will always be eternally grateful to them. It means so much to have people to listen to you and encourage you to keep on, knowing that this is what you want to do, offering to represent you at various meetings that you could not attend, checking up on how you were doing, the odd card, text message and other forms of communication. I felt loved, secure, and supported by these actions, and they were not scared, they did not run a mile and it is with their support that I now feel able to write about this period and share with you.
My ‘trademark’ long blonde hair quickly fell out just after the first session and I was also admitted to hospital with sepsis; once again I obtained permission to bring in my laptop so I could work! My Dad, Roy, and my partner, Tony, were with me every step of the way and Tony helped me by shaving off the rest of my hair when it was far too patchy … enter stage right my Sigourney Weaver look, although to me I looked more like Phil Mitchell!
One of the most memorable and emotional moments was just after I had received the news that I was to undergo the chemo was when Tony sat beside me on the bed, put his arm around me and then asked “Where am I?” I didn’t know what he meant… so he said, “Where am I sat?” to which I answered, “Beside me” he then asked me, “Where is my arm?” I replied, “Around my shoulders” He then said to me, “I will always be at your side as I am now, I will always hold you, as I am now and I will always have your back and support you, in the way that I have my arm around you now” Yep, I guess you can say he is a ‘Keeper’ and I am a lucky lady!
It was a strange few months, I was rarely allowed out due to the issues with my immune system and low white blood cell count due to the treatment; I guess you could say I was on ‘lockdown’ prior to COVID-19! I coped by focussing on work and cherishing time with family and friends. At times it was a strain that I had not revealed my situation publicly, but I was still feeling protective of myself, my business and my privacy so at the time it was the right decision for me.
I avoided mirrors and photographs; I hated the way I looked, how bloated I was, how odd I looked without eyebrows and how sickly and dry my skin looked; also by not seeing myself, I could pretend that it wasn’t happening – I still felt like ‘me’ inside; I wanted to feel that I looked like ‘me’ on the outside!
I also cared for myself mentally by meditating, resting when I needed and celebrating successes. I was determined to be Juls and this was also helped by interactions on social media, with lots of lovely Early Years folk, so many of them will not know how much the weekly #EYMatters Twitter Chats kept me going!
There were also times when I felt wretched, so sick and tired that all I could do was cry; at those times I would tell myself it was ok to cry, it was ok to be sick for a while as it would subside then I could be ‘Juls’ again.
I took a risk and ventured out to the LEYF annual Margaret Horn debate in October; I was meeting Alison Featherbe there, she is one of the very special people that had been supporting me. This event was special to me and I wanted to support it; the previous year at the invitation of June O’Sullivan, I had provided social media coverage via Twitter during the evening as EY Matters, a night that I felt ‘special’ and ‘part of the sector’ and had ‘found my place’!
When I arrived that night, June noticed straight away that I was different but thank goodness did not make a thing of it, she simply said, “I had no idea” and then we carried on as normal. Thank you so much for this June – it was what I needed to calm my nerves and apprehension of being out with the wig, you made me feel normal and accepted.
It was decided at the beginning of December, after further tests, that my body could not cope with any further sessions of chemo, my white blood cell count was extremely low and also the treatment was affecting my liver function. In some ways it was a relief that I would not have to be hooked up to infusions any longer, but this was coupled with a fear that all this treatment had been for nothing as the tumours, although reduced, had not completely gone.
I had plenty to focus on with Christmas around the corner and also the ‘Wellbeing for All in Early Years’ conference scheduled for the end of February; ticket sales were double what I had expected, and everything was falling into place. I was worried that I would not be able to attend, but put these thoughts out of my mind, and concentrated on the organisation of lots of little details to make it the best experience I could – I was determined.
A week before the conference, I suffered damage to my knee and so was on crutches, those who were present will probably remember this! It now transpires that a tumour had developed in the back of my knee, and healing had put strain on the ligaments and cartilage, causing a slight tear in the meniscus.
The conference was amazing, I was extremely emotional to start with due to actually being there and the support of Aaron (Bradbury), Gary (Coffey), Sue (Allingham), Alison (Featherbe), Gina (Bale) Amanda (Frolich) and Penny (Webb) all of who had become aware of my treatment through one way or another, made me even more emotional. These very special people will never realise how they got me through the day and how they made the whole event so wonderful for me. These were also the people that had ‘got me through’ the treatment, had kept me going, supported me, challenged me, and never allowed me to give in, all wrapped up in a big bundle of precious friendship. Thank you, guys, you more than rock!
I also made my Dad cry when I presented him with a gift at the end of the conference to thank him for being him and all the support he has given me, attending all of my hospital appointments, holding my hand during the chemo infusions, sitting with me day after day, making sure I had constant drinks and was eating! As I was being allowed to attend hospital as an Outpatient, my Oncologist was very clear in his instructions that I was not to be on my own; I had a lot of dizziness and was prone to falling over. Dad’s daily care also allowed Tony to go to work and be my partner, not my carer, something else that was important to me and also others who have had similar experiences will understand that you need to feel ‘normal’ and not just a big blob of treatment and illness.
The following Friday, I was proud to attend the London Sports Awards Ceremony at Guild Hall in London with Ali Golding and the MovementWorks Team – I felt so honoured but also apprehensive as I had never revealed the full extent of what I was going through to Ali, but she was great as were the team and no mention was made. Little did I know that this would be my last outing for a few months.
So here we are now! At the time of writing I am in lockdown and shielding, only being allowed to have the upstairs windows open to a maximum of three inches, not allowed to visit my garden, but I am keeping safe, it will keep me well and as usual I am surrounded by the love and support of my family and friends, even though remotely! Relationships are for me, are key. Due to COVID-19 and being classed as extremely vulnerable I have not been attending hospital as catching coronavirus is more of a risk than the tumours or LCH but I do have regular contact with my Care Team and blood tests when needed are done by one of the Community Nursing Team. Following the chemotherapy infusions, the tumours were still present but greatly reduced and the medical teams are of the opinion that they will continue to shrink until they disappear despite no further treatment at the moment although if this does not happen they will re-start Chemo but by injection and tablet form once they are sure it will not have any detrimental effects.
Over the past 25 years I have now come to accept that I will have ‘flare-ups’ as well as periods of remission and adjust my life accordingly to deal with it – this condition is part of me, it is normal for me and I could roll over and give in or I can just deal with it and refuse to let it take over… I think you may have guessed I have chosen the latter.
Do I have any tips for you if you find yourself in a similar situation? What works for me is counting my blessings, to the point of writing down all that I am grateful for and reading this back at low points. I also ‘allow’ myself to feel sad, anxious and worried, I tell myself it is ok, it is normal and then I write another list of things I need to accomplish, even small tasks and make sure I accomplish them! I also feel the need to reach out and have contact with people, to support others, to feel useful and an inane desire to make things better – this comes from my heart and Early Years is very much part of my heart.
If anybody has or is going through anything similar and would like to talk in confidence, then just reach out, don’t be alone and don’t worry that I am ‘too busy’ .. I am never too busy to listen, to support and never ever too busy to care.
It is important to acknowledge that I made the decision for people in my life on how I thought they would react, this is probably unfair as the majority of my clients and colleagues are wonderful caring people, so I just hope that they understand my deception of them by not revealing the whole truth at the time. This is no reflection on them, it is how I felt I had to cope and preserve my life at the time.
I would like to thank Aaron for sharing my story, this is the second time it has appeared, originally written for Kate Moxley for her initiative Early Years Mental Health Awareness Week (#EYMHAW); I still feel apprehensive on how people will view me so did not want to add this article to my own website as the illness is just an illness and I do not want it or the treatment I have undergone to define me or to be the thing people view when they visit EY Matters or Virtual Support websites.
Oh… and yes, I still avoid mirrors and photographs, even though I know that my outside shell is just that, a shell, I am the inside person, I am Juls and I am strong, and on days when I am not so strong, I strive to be more ‘Juls’.
Promised Link: National Cancer Institute – LCH
At Aaron’s request, I am sharing some photographs with you … captions are my own!