It all started with a kalamata olive loaf…
Finding a job these days is not easy; we all know this. For me it took seven months and about eighty rejections, but finally that day came where I received a phonecall to say I was being offered a job. I celebrated in the expected manner: went to the pub at 11am on a Thursday and did some shots (salted caramel – I’d recommend). Seven months of docility, monotonous lack of structure and stagnation was over; I was soon to have a routine and be able to focus having time for me again, where I could start new activities, read more, and learn and socialise in my evenings instead of refreshing the Guardian Jobs page. My life was going to change! I’m sure we’re all familiar with this born-again sense of hope. I just didn’t know how much mine would change.
A week later I was flat-hunting in London. A few too many glasses of wine the night before had lead to a very hungover slog around London, and my go-to cure is bread. Throughout the day I ate a whole baguette of kalamata olive bread and it was so goddamn delicious. Though throughout the afternoon, I started to get a pain in my lower back and stomach, and gradually it began to hurt to walk. I’ll admit my first thought was that I was constipated, but alas I was not so lucky. The fat girl that lives in all of us thought it would be a good idea to buy another loaf of kalamata olive bread and, like the greedy chicken I am, I devoured it throughout the evening. It wasn’t a good idea. The pain persisted and spread to my chest and back, to the extent that that night I was unable to sleep in any position, and no pain killers even touched on relief. It became more severe, getting progressively worse over the next few days when eventually I couldn’t walk or breathe with ease; I can only describe it as the feeling as if someone were compressing your torso whilst simultaneously hanging a pulley-weight for measuring holiday luggage off your rib cage. I took myself off to the hospital.
My birthday fell on my third day in my new role, though instead of celebrating with a liquid lunch or a fancy brunch, I instead felt my chronic pain coming on again
I like to think that in general I’m one for making a positive first impression, however being admitted to hospital with chronic pancreatitis twice in my first three weeks of work probably won’t earn me employee of the month.
Maybe my body just couldn’t handle the adjustment of a 9-5 routine. Time went on, and I oscillated between chronic pain and constant dull aching of the entire torso. I realised I hadn’t really felt properly well for two months by now. The results of the endoscopic ultrasound scan and biopsy came back, and the big question on my mind was ‘is it benign? Is this pancreatic cystic tumour, as they were now calling it, benign?’. I was assured it was, though it still rocked my core reading on my reference sheet that I was being fast-tracked for cancer. However, this is a routine procedure for any cystic mass, so my mind was put at rest. However, a consultation with the doctor later revealed I would be requiring major open surgery to remove it. In a way, it was relieving, my pain would be cured. I was told that this tumour wasn’t going to degrade, and would just sit and slowly grow over the coming decades and likely – the prognosis suggested – become a malignant pancreatic tumour in the future.
The procedure I was to have is called the Whipple Procedure, and to be performed on someone my age, 23, is exceptionally rare. To remove the tumour, the surgeons have to cut out a third of the pancreas, part of the duodenum and completely remove the gall bladder, and then effectively re-plumb your internal system so your pancreas now redrains into your stomach. There were risks as with any procedure, and potential long term side affects of diabetes, but because of my age I was assured I should recover well and begin to feel relatively normal again within six months, with a full recovery in a year. Considering the prognosis was a future malignancy and an eternal constant degree of pancreatitis, which can be life-long damaging, surgery seemed the only option and despite the magnitude of it I was excited to think that eventually I’d be well again. This major surgery would take eight hours and require twelve surgeons’ skill, and I would be in a recovery period off work for two months. I broke the news to my employers, continuing the sterling impression I had already made.
Ten days in hospital to recover. The first four days were in intensive care and I really couldn’t count the amount of tubes and bits of things going into parts of my body. I came round at the end of the anaesthetic when I was having drains pierced into my stomach to remove excess fluid which I can only describe as feeling like Neo in the Matrix when they stab the device into his skin to remove his bug. The pain was unbelievable so the doctors gave me ketamine. A fuzzy head and a blackout later equalled one mad Friday night, and I was delirious – in conjunction with the morphine of course – for the next couple of days. I couldn’t move, I was stuck on my back, on day three the nurses helped me out of bed and it was the most excruciating pain I’ve ever felt. Day four I attempted to walk for the first time; it felt like I was dragging a carthorse by my stomach, my legs were shaking, I was bent over like Quasimodo it was probably the first time that I did feel sorry for myself, I’ll admit. But I had an awesome scar, so silver linings. Considering the major surgery, I recovered phenomenally apparently, though it wasn’t without its difficulties. Even as I became more conscious, I was still in constant pain, so hooked onto Fentanyl – a stronger version of morphine – for a week; my face was gaunt and eyes wired, I lost a stone in two weeks and I’m not a large lady by any stretch of the imagination. But progress was progress, and although some nights were continued agony eventually I was discharged with the doctor’s blessing and encouragement and released out into post-Brexit London. The hard part (well, in terms of my health, not in the car crash of political events that have rippled the earth throughout the last couple of months) was over, it was done!
Oh the hard part so wasn’t over.
As I said, I was making an incredible recovery, and within about two weeks after being discharged I really was starting to feel like myself again. I was more mobile, walking better, my appetite was coming back and although I still became lethargic quickly I was feeling better in body in spirit every day. However it was about two and a half weeks after I was discharged that I got the phonecall that the results of my biopsy – the removed tumour – were in. I had lymphoma, and had to meet with a specialist urgently that week.
To that rather sombre paragraph end, it’s worth me adding here that I actually didn’t know what lymphoma was (god bless my medical ignorance) and the news was given to me rather carefully: the mass that was removed was a lump of white blood cells which, although was a by-product of lymphoma, was in itself benign. So, when I asked whether what was removed was benign, I was told it was, and thus spent two days not panicking and in high spirits – I think my response was ‘Oh, okay! Sure I’m free to meet Thursday – cheers!’. I never google medical-related things as I find it fuels our inner-hypochondriac, and ignorance really was bliss in this case. Alternatively, my other half, Luke, did do some research into lymphoma, and I cannot speak highly enough of the strength it must’ve taken him to keep calm and collected in front of me in those few days before the consultation, being sure of what I clearly didn’t know.
I‘m not the greatest fan of hyperbole when it comes to raw emotions, but in that little room in St. Bart’s Hospital, London, I really did feel my world change. I’ve got a bit of a rogue imagination, and I’ll admit I’ve thought before how it might feel being faced with that conversation, as 1 in 3 of us supposedly will be in our lifetimes, but I think I lack the creative flair to describe it in any more eloquent terms than the bare facts of what it was: stunned shock, a thousand thoughts racing through my brain and a million more questions. I held it together pretty well: I didn’t cry, I breathed, I attempted wise cracks at what special and unusual patient I was – a lump of lymphoma being found in the pancreas is fantastically rare, even more so in someone my age and has only happened in a few named cases. I tried my utmost to intake all the information my doctor gave me, but relied on Luke to remember the details, because in essence all that was going through my head was that word: cancer. Pre-empted conversations with loved ones, family and friends played in rehearsal in my head, I would have to say those words to them: ‘I have cancer. I am going to have chemotherapy’, and it was mostly the idea of breaking that to those people I care so deeply for, and I know do so deeply for me too, which upset me more than anything else, much more than anything else. I think it’s quite a human thing to worry more for others than ourselves.
Before I continue, a little on the diagnosis.
I was diagnosed with non-Hodgkin lymphoma, and an aggressive form of it. This was concerning; it means that the cancer will quickly take over my body because the white blood cells are dividing at a very fast rate, and requires chemo to be started urgently. However, there is a medical advantage in this case: because the cancer is aggressive, it should respond better to chemotherapy as the cells can be targeted much easier, whereas in more dormant, low-lying cancers, which although do take many more years to present themselves, it can be more challenging for the chemotherapy agents to target those cancerous white blood cells, in which case the process may not be completely curative. In my case, it was a freak medical occurrence, which couldn’t have been prevented by anything I should have or should not have done, and I felt that reassuring to say the least.
It’s been a whirlwind of a few weeks, with a load of new information to digest. Although there isn’t an explicit correlation between fertility and chemotherapy/radiotherapy, oncology patients are informed about the potential implications of treatment on their fertility and as such are offered IVF, or a similar process, which they can take if they wish. For anyone who knows me, my dream is to have a hundred babies (and as many golden retrievers), so safeguarding myself against the potential risk of infertility was incredibly high on my agenda – although of course there are many other wonderful ways to have children – and for a week fertility became my primary thought. My chemotherapy is urgently requested to start as soon as possible, so I am undergoing fast-tracked IVF. I had to make some quick decisions on whether to freeze eggs or embryos, the latter of which have in general a slightly higher survival rate and therefore prompted a somewhat premature conversation between Luke and myself! But one that, I must say, also felt like the most natural thing in the world, which was a wonderful feeling amidst all the madness. I’m currently being injected with hormones daily in preparation for me to harvest my eggs, and will end up being given temporary menopause to protect my ovaries against any chemotherapy poisons. It’s like a big, druggy, medical holiday.
I am currently writing this from my hospital bed, as a few days ago I found out I have a new lymphoma tumour which has formed in my chest, which is greater in size than an adult liver, and has been causing the most horrendous cough. This is currently being treated with steroids, which are miraculous drugs – I feel bloody fantastic. In addition, my heart has been being monitored for the past three days, as they’ve found an excess of liquid around it. I’ve had two near black-outs on the London underground within the past week, the catalyst of which I am 100% sure is the festering sweatiness of the Central line but the cause of which we believe is this liquid which, if grows, can stop the heart from beating. I purely mention this, because I’d like to share with you my somewhat hyperbolic and dramatic, albeit completely factual, account of my medical state as of this moment in time, which I sent to my friend with the mindset of ‘if I don’t laugh I’ll cry’:
“Current state as of 18/08/2016: recovering from severe open surgery of re-plumbing of internal organs (1/3 of pancreas removed, gall bladder removed and part of duodenum removed) whilst having a sleep-depriving cough caused by a shiny, new, extra cancerous lump in my chest and a potentially heart-stopping amount of fluid causing blackouts. Add a few steroids in there but oh don’t forget all the IVF hormones that I’m having injected too because of potential infertility, just to prepare to undergo sedation for egg harvesting with a needle rammed up my uterus, and just to make sure I feel a little challenged let’s soon pop in a healthy dose of menopause too because the imminent chemotherapy is just too easy a ride. Look forward to likely hair loss and don’t forget that diabetes is still a possibility too, and every bit of food is now accompanied by some lovely enzyme supplements to control your crippling stomach gas post-op.”
I’ve shared this because it leads me to the crux of why I’m writing, the importance to me of mind over matter, and the power of our brains. The above naturally prompts responses of ‘You poor thing! What next? It’s so much to think about’ and of course it is. It is a lot, and it’s probably more physically draining than I realise, but I don’t feel yet like it’s a lot; it’s not weighing me down emotionally. I feel happy, I genuinely feel happy.
My mind is in overdrive processing new information and although this calm pragmatism will decrease when dealing with the disease becomes tougher, I’m still noticing one small but very significant thing: I can still see the lighter aspects in each new revelation and the positives that can be found. So I almost feel ‘yes, what next?’ because I can handle this, and it is all down to that inexplicably miraculous organ that is the brain, coupled for me with the overwhelming amount of support and love from Luke, my family and my friends.
Although I’m fortunate enough to be told I’m in a safe place, and that the doctor is optimistic about my recovery, nothing is ever certain.
Of course I have to acknowledge that I have a potentially life-threatening disease, without treatment for which I will not survive. But that’s all I do: acknowledge it, know it, but don’t dwell on it. For me, that is the only thing I can do, know there’s a small possibility chemo won’t work and I won’t be cured and accept it as the unlikely event that it is, much like the risks I had during surgery, or the chance of something happening to me when I go to the supermarket or go out for a drive. So I acknowledge the truth, that there are risks, I do, but I don’t give them any precedence in my thoughts. In my mind, there is no other option than for me to be cured and to be healthy again, it is the only outcome.
On a lighter note, it’s sod’s law as I just bought my first hairdryer in three years, with a three-year guarantee
I’ve never been a particularly materialistic person, and growing up with Peter especially, the brother with cerebral palsy, has given me a perspective on life that I’ll admit I’m proud of: always show kindness, nothing is more important or significant than relationships, modesty and empathy. So I don’t see, as could otherwise be expected, my diagnosis changing my outlook dramatically, rather I see it as the affirmation of how I believe is the best way to interact with others around us and the world itself, though perhaps it’ll intensify how wonderful those sensations are. I’ve therefore found already that my diagnosis has reaffirmed a lot of aspects of myself that I find encouragement in, and for that I am almost thankful. So I could self-indulge, which would be completely within my rights, and may be the route I begin to lean to when things get more challenging, but now I’m choosing not to, for me it’s counterproductive.
I’m a happy person, every day I wake up happy and I will shout out a big ‘fuck you’ to cancer if it thinks it can take that from me. And to anyone who experiences this in any similar way, friendships, love and your amazing brain are your greatest weapons.