My name is Milad Hilli. I am a 28-year-old doctor, training to be a General Practitioner (GP). I am also a daughter, a fiancée, a sister, an aunt and a friend. This is my story about my battle with cancer, and my continued journey to defy the odds.
How it all began
My story begins in the last week of February 2016. I was working in a hospital in obstetrics and gynaecology when one of my patients (a young teenager) presented with bleeding in early pregnancy. She also had a really bad cold, and after a few days of looking after her, I seemed to have caught this cold off her. Over the next few weeks I was having on and off high temperatures, night sweats and itching all over my body. Ignoring my body and putting my symptoms down to a ‘viral infection’, I continued to work and even sat through an exam.
I was becoming more unwell but I still chose to dismiss the alarm bells, confident that I was invincible and immune to illness. However, on the 29th April 2016, as I was completing a night shift in hospital, a concerned colleague refused to let me go home before undergoing tests. These included a chest xray, which displayed ‘shadows’ on my chest, followed by an urgent CT scan of my body which confirmed lesions across my upper body. Within a week, I found myself undergoing surgery for a lymph node biopsy; what followed changed my life forever.
I was diagnosed with Hodgkins Lymphoma – a form of blood cancer. That day, I went home, opened up my laptop, and started to write. I wanted to express myself, share my journey, and raise awareness about a disease rarely spoken of. This marked the beginning of ‘Listen To Your Body’, my blog which I would then use to document my journey over the 12 months that followed…
A Rough Ride to Remission
I have had an ongoing battle with cancer for almost a year now, undergoing multiple treatments, including surgery; fertility treatment; and ABVD chemotherapy. I had six cycles of gruelling chemotherapy, which were split into twelve sessions every two weeks for six months. My journey has been far from smooth. I have had multiple complications, including nerve damage to my fingertips as a result of chemotherapy; a blood clot below my right shoulder and an admission to hospital with potentially life-threatening sepsis.
After almost eight months, my scans showed that I was clear of cancer and the doctors told me I was in remission. I cried countless tears of joy. I had gotten through each and every hurdle that had come my way, and I finally felt the loosening of those thick chains that had been suffocating me over these months. The rush of excitement and happiness this news brought to me and my family was indescribable, and beyond measure. My life slowly resumed and I began to return to ‘normality’ – going out often and enjoying every moment of freedom. I was confident that this would be my year. I returned to work in the same hospital that had treated me, and even found time to plan my wedding which I had scheduled for 23rd August 2017. I was so grateful and life could not have been sweeter.
Reliving My Nightmare
Less than four months later, on the 3rd of May 2017 my life was to take an unexpected turn. I received the shocking news that my cancer had returned. I was to be admitted to hospital immediately for more aggressive treatment. It struck me for the second time: I was not well.
I had mentioned to my doctor that I was breaking out in hives all over my body, so he arranged a routine scan to reassure me (neither of us were particularly concerned). It was very nonspecific and could have simply been an allergy. I had also noticed some weight loss and confidently put that down to dietary changes. The chance of relapsing so soon was very rare, and for this reason, I went about my day to day life normally whilst I waited for the results.
I can never forget the day I received the phone call that changed everything for me… again. I was with my mother driving to our local shopping centre, where we were planning to spend the day shopping for a surprise ‘hen-do’ my best friends had arranged for me. En route, I received a call from a lady working at the ultrasound department in my hospital. She said she had called to arrange for me to come in urgently for a biopsy of a lump found on my scan. At this point, I had not yet received the result of my scan, so this phone call took me by complete surprise. Recognising the total shock in my voice, she politely ended the phone call. I asked my mum to stop driving and explained to her what I had just heard. My phone then rang again, this time it was the consultant radiologist on the line. He apologised for how the news had been broken to me – they thought I had already been informed by my haematology team. He then asked me if I could come into hospital immediately for an urgent biopsy – and so my mother made that U-turn, and out of nowhere our day had turned into the reliving of a dreadful nightmare all over again.
The news of my relapse really saw me fall to my knees, making me experience the darkest of moments. I always saw myself as a strong person, not one to easily break down in the face of difficulty, and my entire battle with cancer had been a positive one. The honest truth though, is that I have never cried nor felt as much pain as I did when I heard my cancer had returned. The immense lack of expectation of the news; the way I had heard it; and the timing of it all had made it so difficult to comprehend. Following that soul-destroying news, I began to see flash images of losing everything all over again. Part of me wished I had never gotten better for those brief few months, as it is so much more difficult to pick yourself up and re-fight a battle you thought you had already won.
Looking back now though, I feel so thankful for those few months of normality, for that breathing space, as I now know what I have to look forward to. I did it once and I can do it again. Here I am today in hospital… both mentally and physically ready to fight cancer, to fight for my life, for the second time in the space of one year.
My Ongoing Treatment
I am now in hospital undergoing ESHAP chemotherapy which is more intense and requires me to be an inpatient in hospital. Throughout my previous chemotherapy, I would come into hospital for one day, undergo chemotherapy over a few hours, and then go home. Now I am on a chemotherapy drip for 24 hours a day non-stop over five days. I will go home once I am well enough, resting for three weeks before returning to hospital and repeating this process all over again.
After the treatment is complete – and if my cancer is shown to be responding to chemotherapy – I will be transferred to another hospital for further chemotherapy followed, by a bone marrow transplant. At the moment, I feel too much has happened, and happened too soon, which makes it difficult for me at times to absorb all this information at once. I am still in a state of shock, and sometimes I find it best to take each day as it comes.
Living for Today
With time, I have come to strongly believe that God does not burden anyone beyond that which they can tolerate. Every individual’s hardship and struggle is unique to them and to what they can deal with. I find it wrong to compare one person’s misfortune with another, as each person’s suffering is relative to them and no journey is identical. We are all very different and the way we respond is a matter of perspective. I try to constantly remind myself how lucky I am for the many blessings which I have been given. It is much easier to focus on the negative aspects of life, but even the most darkest of moments can be looked at through a positive light.
I do not feel sorry for myself and I do not find myself unlucky. I recognise that I am much more fortunate than many others and I am so thankful for my faith in God, which gives me strength to fight on, as well as the support from my loving family and friends, the roof on my head, the safe country that I live in, the education I have received, the 5 senses which are so easily taken for granted yet add so much to my day. The blessings we receive are far greater than the downfalls we face, and life is truly beautiful if you choose to see it that way. As I said, it is all about perspective. I am much happier and at peace now than I have ever been. In spite all of this I will never sugar coat my illness or journey; it is very tough, more than I could convey through words. I know that I am very sick, but likewise I also know that I am very resilient.
To most people, cancer is a terrifying word which many associate with hopelessness and even death. As a doctor I always saw it as a disease just like any other. I entered this profession for one sole reason and that is to help others and to give back, but unfortunately with time doctors – including myself – can become desensitised. A patient becomes a figure, and their disease part of a statistic. When you are ‘on the other side’ and that doctor-patient role is reversed, it completely changes your outlook on things. I feel that my life has taken this turn and that one of the reasons I am on this journey is to become a better doctor.
Illnesses, cancer or otherwise, are part and parcel of a larger package, and the implications it has beyond are far greater. My cancer has impacted my personal life, my family, my work, and pretty much everything else. In less than one year, I have had to cancel my wedding twice, leave the work that I love for a prolonged period of time twice, faced losing my hair completely and witnessing all the physical changes that come as a product of being a cancer patient, twice. My health has prevented me from sharing important memories with my loved ones, most importantly of which was missing my sister’s engagement and wedding due to being in hospital. I may play it down at times, but not every day is easy. There are many struggles to deal with both mentally and physically, and without the love of God and the support of my loved ones I don’t think that I would still be going this strong.
I have found that the treatment for cancer is far worse than the disease itself. The side effects of chemotherapy can be unforgiving at their best and completely demoralising at worst. As I have now restarted chemotherapy I am slowly beginning to get all the dreaded side effects I once had before. Not only does my body ache all over as if I have been beaten up, what I struggle with the most is the intense soreness of my mouth and lips which make even the drinking of water feel like torture. Fortunately, with all the medications and support from my medical team, my symptoms can be managed to an extent. Sometimes as humans we really take the smallest things for granted, such as being able to sleep without struggling to find a pain free position, or simply being able to taste food, wet your lips and swallow a drink with ease. Throughout my previous chemotherapy I experienced a lot of nausea and vomiting, I would vomit for days at length which left my body extremely weak, and no medication could control this. As I have only just begun chemotherapy again, not all the side effects have kicked in yet. I try to not think about them and to be thankful for each day as it comes and passes.
I have been told to expect the side effects to soon kick in, including the complete loss of my hair again in the next five to ten days… but I plan to live for now, for today, for each moment as it comes, but look forward to embracing what tomorrow brings.
Looking forward
My wedding is something I have mentioned quite a bit throughout my blog; every girl dreams of that fairytale day and I am no exception. I feel every part of my journey has been a real struggle. I just want to be like any other bride, have that one special dress, hair done up and that happy ending with my soul mate. I worked hard on planning it two times and paying the utmost attention to every detail, but for the second time it feels like the rug has been pulled from under my feet. I cannot begin to describe the emotional stress this has caused.
To make matters worse, me and my fiancé and loved ones find ourselves standing alone trying to fight a wedding insurance company (John Lewis) who like many large corporations are typically resourceful at finding a clause so they don’t cover your claim – in my case, it is that I have had cancer before. At the same time, we are trying to negotiate a financial compromise with our wedding venue with whom we signed a non-refundable contract and have incurred a significant cancellation fee. Money, as all material things, comes and goes and has no true value, but these are examples of the burdens an illness can bring. To those looking in from the outside as my story unfolds, it seems to be more and more of a nightmare, however I have great belief that despite all these stressful factors, everything happens for a reason, and that the best is yet to come.
I find this verse from the Quran (8:30) very powerful;
“They plan, and Allah plans. Surely Allah is the best of planners.”
However much we feel we have got our life sussed out and that all is perfect… it can simply take one phone call to put a standstill to your life and turn it upside down. However, only YOU can choose whether to turn your life back up the right way, and to keep smiling in the face of darkness and to defy all odds. I will now close my phone to get some much-needed rest, but I leave you with hope, happiness and a sprinkle of positivity: my fight against cancer may have restarted, but I have already won both mentally and spiritually. I have an army behind me, led by my backbone – my fiancé and my beloved mother, and my family and friends who have sacrificed a lot for me.
Together we will win.
