Diagnosis Story

Written September 2019.

I thought writing a few updates in a blog might be a helpful way to keep everyone updated with my news, and pass some time as I spend the next month in hospital. So far we are almost one week down. It has been a surreal few weeks.

I found out I had Acute Myeloid Leukaemia on the 1st August. Only a week or so after I'd arrived back from 3 weeks in England catching up with friends and family, to be honest i thought the Doctors were just being over the top - 'they're so thorough over here!'. I had gone to the Drs before leaving to England, I wanted to get a CA125 blood test - an Ovarian screening test due to my BRCA1 gene mutation - the Dr had asked if I had any other symptoms. I said I had been tired recently, but who isn't eh. He decided to do a full blood count along with everything else, and despite me thinking he was pretty silly as he told me the best way to test for Ovarian Cancer in Australia was a Smear test (ladies - group sigh) I guess he inadvertently set in motion my diagnosis. I went back to the Doctor's the next week, decided to see a lady Dr this time who is absolutely amazing (shout out Dr Kalai) and she said a lot my levels were low in the blood test, but I had a pretty stonking cold when I had the blood drawn, so she thought it could be down to the virus, but to come back in 4 weeks time to retest and make sure they'd all gone up to normal. Simples! I went to the UK and had a great time. But I was really fatigued, that kind of sleep for 9 hours, still don't have the energy tiredness and not really feeling motivated to do anything, having a really busy day wasn't on the cards. I put it down to jetlag and general tiredness. As I would keep saying to the Doctors soon enough, isn't everyone tired! I remember even telling a few people how thorough the Drs seemed to be in Australia - when have you ever had a full blood count done on the NHS in the UK, how much better the medical system seemed to be, trying to find an answer rather than ruling out one thing and saying to wait and see. I got back from the UK and was able to walk in to a blood test a day or two later (oh yeah, you don't need to book an appointment for a blood test here!) and went in for the results a week later. I thought it funny that the Dr said she was going to call me about my results but saw I had an appointment booked in to discuss anyway, I was so not worried about the results that though my results were back on Tuesday I'd waited till I was free before work on Friday to go in (you don't have to wait 3 weeks for a Doctors appointment here either!). I went in and the Doc said although my blood counts had gone up - they were still not within normal ranges and she was going to do a referral to Flinders Hospital Haematology. Gosh I thought - bit of an over-reaction, I was expecting to find out I had an iron deficiency. Starting to get a little bit more concerned I asked the Doctor what she thought it could be. Worst case scenario, she said, would be blood cancers. Which we need to rule out. My mind started to spin but I said but, it could just be a virus? Yes it could be, but we just need to find out. I now know that there really wouldn’t have been another likely reason that blasts (immature white blood cells) would have been seen in my blood results - they spill out from the bone marrow and infiltrate the blood, where they shouldn’t be… so at this point the Doctor likely had a strong inkling I had leukaemia). She did the referral then and there, I went home with my blood results and started to google. I was sure there was something it could be - a weird virus, had a picked something up on the plane? Parasites, EBV? I googled a lot but all that kept coming up when I searched about having blasts in my blood, low white blood count, was Leukaemia. I decided to stop googling and let it be. Perhaps I had some rare genetic thing, my bloods have probably always been like this and no ones realised. What weird countries have I been to over the years, it's probably something weird that I've picked up eating street food that's lay dormant in my body. The Doctor did the referral on Friday 26th July, and after a weekend of a trying not to worry about it I rang the hospital on Monday to ask how long the wait was for a referral. She said it needed to get triaged out, but if it was urgent, a couple of days, not so urgent, a few months, going up to a year or so for something that wasn't very pressing. This put my mind at ease, it can't be that bad as a feel alright so I'll probably get my appointment in 6 months or so. Nothing to worry about. Fast forward to Wednesday where I got a voicemail at work from a Doctor in the Haematology department at Flinders asking me to call her back urgently on her mobile. Somethings probably gone wrong with the referral, maybe they lost my bloods or didn't do the right ones I thought. I called her back and she started to explain to me that I needed to come in immediately to do another blood test and that I was booked in to have a bone marrow biopsy the following morning. I told her I couldn't, I was at work and she asked if I needed her to speak to my manager. I was now starting to get the seriousness of what she was saying, which felt bizarre because I was at work, reasonably healthy, but she asked if I could bring someone in for moral support, I said Luke was at work too and she asked if I wanted her to call him and his work to explain. Literally I started spinning out as she went on to explain that my bloods could be crashing and I was to come to the emergency department as soon as I could and she would let them know I would be arriving. I tried to breathe deeply and said okay, I'll come in, give you guys some blood and then go home and pop back in for the bone marrow tomorrow? No, I needed to stay in overnight so I could be monitored. In fits of tears I called Luke, spoke to my manager and tried not to panic... went home to pack a bag and then we went to the hospital. It's a weird thing when you have a feeling something might be wrong with you but you don't actually know what, but everyone seems to be quite a bit more concerned than you, or than you think is really warranted. A bit of a mix between keep telling yourself 'it's probably nothing' and 'what if it really is something'. We went to the hospital emergency dept, of course they have no knowledge of my arrival and can't find my name anywhere. I speak to the triage nurse and try to explain why I'm here - but he keeps asking me my symptoms but I don't have any. I just had a blood test and thats it. He looks at me as if I am mental. I repeat that I have just been told to come in, did he want the mobile number of who I spoke to? I’m told to sit down, so I do and call the Doctor I spoke to previously back and let her know I’m waiting. She says they’re in a meeting but will be down to collect me shortly, and then stays in text contact updating me. Then we just waited. It was weird, should we be worried or not? A nurse came and got us and started to go through my medical history. There was some confusion, because this nurse also had no idea why I was there, and neither did I really, so I was trying to explain my medical history whilst also trying not to panic. Midway through this conversation, two of the registrars came up asking if I was Sophie, and they took over. Turns out they had been looking for me. They took me into a partitioned off area, with curtains around and began asking me a long list of questions. Asking my symptoms, nothing really just a bit tired, not sure why I am here, me trying to make some jokes and them just looking quite concerned. Trying not to have a panic attack whilst sensing their nervousness. They explained the bone marrow biopsy procedure to me, which did not sound as bad as it actually was, luckily I was sedated but theres no real nice way to say, we will be drilling into your bone and taking out a sample from your hip. Thank god for being sedated in this country (I’ve heard you’re not sedated in the UK). I remember they kept asking me about my previous work and exposure to chemicals, as that is one of the risk factors for leukaemia, certain workplace chemicals. Me working in a soul crushing bank office for many years was not a risk factor. I stayed in the chair for a few hours, until a bed was available for me upstairs in a ward. I felt bad almost taking a bed in hospital, when just a few hours ago I was at work, there was nothing wrong with me.

Eventually the bed was ready and we were taken upstairs. From here my memory gets a bit blurry, which I was told by a psychologist is a normal reaction to a state of fear and panic, your body is in fight or flight so stops sending blood to the bit that remembers stuff, cause remembering isn’t that important when your life is on the line.

The Doctor came to me at some point. I remember asking him; when would we know what was going on, when would the results come back from the biopsy. He said he initial results, which would tell us whether it was blood cancer or not, should be back within a few hours, so by early afternoon. If it was some weird, complex, rare genetic thing, which was what I was going for, then it may be a few days. I remember reiterating to him, so I will know if it is cancer or not by tomorrow afternoon. Yes.

I do remember that I was the youngest patient I saw by about 40 years. I was in a ward with 3 others, all elderly. This was the haematology ward. This made me go between thinking I was definitely in the wrong place, and that something was seriously wrong. I think we just tried to pass the time. Luke ended up sleeping on the floor next to my bed with a thin hospital blanket. I’m so glad he was with me overnight. I tried to get some sleep but failed, I don’t think I caught a wink. The noises of the hospital and other patients kept me awake and seemed to make every minute stretch longer. I streamed the last series of Orange is the New Black from my phone. I still haven’t been able to finish it as… turns out PTSD for things like this is very real and the thought of watching it takes me right back there.

So anyway, somehow morning comes, I’m still watching OITNB, and we wait for me to be taken down to have my bone marrow biopsy. I try not to think about it whilst also freaking out internally. Its funny that I just can’t recall much of what happened. I remember feeling so fine, so well, but everyone was treating me like I was sick - that I was meant to be in bed, I had to be wheeled down to get the biopsy, coming in and checking on me etc, but I felt fine. I was at work a few hours ago. How could I be sick?

I was wheeled down to the biopsy, I remember waving goodbye to Luke. I don’t remember much else. I remember having some pain afterwards, when I was back on the ward, they gave me a rolled up towel to put pressure onto it. I asked for pain relief. I think I was just given paracetamol. Little did I know this would be the first of four bone marrow biopsies I’ve had, where they take out a portion of your bone and bone marrow from your hip. Luckily I have always been sedated enough to not recall any of them. We asked the nurses what food was good, and Luke went and got me a salad from a cafe downstairs at Flinders whilst he ate my roast dinner meal from the hospital. I remember this because I took a picture. Luke looks scared, worried, concerned. There was a real sense that we were both freaking the F internally yet both trying to hold it together for the other one. Time ticked on. At some point in the early afternoon, a junior doctor came round. She seemed nice, young, younger than me. Made me think I couldn’t imagine having this job. She asked if I had any strange rashes, little red dots. Not that I knew about. I said I hadn’t really looked, so stripped off so she could look. I felt confused, there were no outward signs of anything, I was sure. She didn’t find anything. As I was putting my clothes back on, she said that it wouldn’t be long before the Doctor came in, they were just going through my treatment plan. This is where everything changed. If we were in a film, this would be where the soundtrack stops and you hear that ear piercing ring like your ear drums are going to burst. Where the rest of the world just falls away. Treatment plan? I asked. Within a few seconds, we had both realised what she had done. She had, without meaning to, just broken the news that I had cancer and my life would be changed forever. Why else would I need a treatment plan? If it was the rare genetic condition that wasn’t life changing and I’ve just always had but no one noticed before, I wouldn’t need a treatment plan. The results of that wouldn’t even be back yet. I thought back to the doctors telling me the day before that we would know by the afternoon if it was worst case scenario. And now it was worst case scenario.

I start freaking out, I’m at the beginning of a panic attack. I ask the junior Doctor if they have anything for anxiety, that I don’t feel well. She says she doesn’t want to make me drowsy before the Dr comes to speak to me. (Fat chance, at this point I am practically shaking and struggling to breathe) I somehow hold it together, nod her along, wanting her to get the hell out of my space. She goes and I think I collapse into Luke’s arms. My mind is running, what did she just say, what is going on. Piecing it all together, treatment plan, the doctor said we would know by now. This must have been a horrible sequence of events to hear if you were my ward neighbours. The most wonderful nurse came in. She asked if I was okay, I think she said she was there to check my obs but I wonder now if the doctor let slip of what had gone on. I explained somehow to the nurse what was happening, did I have cancer? Is that what she was saying? She made me reiterate what she had said. Had she definitely said treatment plan? Maybe it had been a slip of words. She hadn’t heard anything. I presume I asked for anxiety medication again, and within seconds she appeared with a lorazapam. God bless her because at this point the room was spinning and I think I was very close to blacking out. I remember my hands shaking as I tried to put the tablet in my mouth. The nurse tried to reassure me. We both knew it was fruitless. Things were beyond repair at this point. We waited for the lorazepam to kick in. This would be the first of 2 weeks of straight lorazepam. Eventually, some hours later, a different consultant came round. I can’t remember when but I think I was handed over to him from the original doctor has he had more blood cancer experience. The lovely nurse with the lorazepam had offered to come into the room with me, to help us understand and so that she could take in the news too and help to explain to us later. So they all came and got me, the consultant, a registrar, and the nurse. Me and Luke sat on one side and they sat on the other. We went into this narrow room with chairs on facing each other against the wall. I think it was cold. I think I was shaking, trying not to spin out. Knowing this is never going to be good news, being taken into a room for a ‘chat’. Like when your boss drags you into a room and you’re thinking of all the crap you’ve been pulling for the past month and wondering which thing they can pull you up on. Did they know you’ve spent most of your time in the office on the internet and have your browsing history? But much much worse. The consultant started speaking but I have no idea what he was saying. Again, no memory really of this part, aside from honing in on the booklet which was on his lap, on top of some papers on a clipboard. Little did I know at this point these booklets, ‘Acute Myeloid Leukaemia’ by the Leukaemia Foundation would become a major trigger for me. Everyone gives you one, I had read it so many times and given it to other people, and I can’t bear to see another one again. I could only focus on this booklet. I didn’t know what these words meant, I barely knew what leukaemia was. Apart from this was bad, this was really bad. I don’t think I took anything in, I don’t think either of us did. I just remember Luke rubbing my back. Up and down. He was in shock also. At one point I had to ask him to stop because I was struggling to breathe as it was. he didnt know what to do either. how do you process that information. The one thing I remember asking the consultant, I suppose this must have been after he spoke about chemotherapy, was ‘am I going to loose my hair?’ He said yes unfortunately, but also put across that really this was the last of my worries right now. In perspective now, I realise that I was effectively dying and had months to live. my bone marrow was failing, my body was not properly making blood cells. At the time, loosing my hair was a quantifiable, picturable way of being sick. That was what cancer meant. That was what I had tried to avoid by having a preventative mastectomy. I had tried to avoid ever being told those words, ‘you have cancer’, and now here I was a year later, in this weird cold room, being told I had cancer. I never wanted to loose my hair. I never wanted to go through chemo, that was the deal that I made when I decided to have my health body parts chopped off. How did I get here? How was this fair?

I think the registrar tried to explain some bits, they spoke about treatment plan, chemo, but I can’t really recall. I just remember that bloody booklet. I knew about the cancer before it had even been said, I think the doctor was explaining about cells, or something, when I just read the top of the book. Maybe that makes it easier. They left the room and said they would give us some time to process. the door slid closed and I just wailed. This guttural, empty wail. Everything was gone. What was happening. I collapsed, hunched over in the chair, just sobbing and sobbing, what the hell was happening. How was this my life? Was this real? In this sterile room. I’m not sure how long we were in there for. At some point I remember looking around and noting that this must be the cancer breaking-the-news room. The weird pastel ‘happy’ colours, the boxes of tissues. The fake flowers. I wondered how many other people had had their hearts ripped out of their chests and lives forever changed in this room. How was it fair that a room like this even needed to exist. What did we ever do wrong?

At some point we must have left and gone back to my bed on the ward. I remember walking out of the room and catching the end of nurses and doctors glances, everyone knew by now. The new cancer patient. I felt marked. It was written on my head. Would I live or die? God I was so scared. I had no idea what was ahead of me at this point. I can’t really remember what else happened at this point. when we left, I asked the doctor on call for a script for a sleeping tablet and anti anxiety tablets. This was a godsend. The doctor did do it, but spoke to me about meditation helping. I said I already meditated but really needed something stronger just to see me through. He understood. I thought that was pretty cool, a doctor recommending meditation. Meditation did help me through, and continues to help me through all this, and a credit it with being a large part of getting to where I am today, helping me process what was happening, and allowing me a space to be upset, to be with my emotions, and come back to my breath and for glimmers, though not for a while, a sense of peace.

The next few days, rolling into weeks were a blur. From my camera roll I see that me and Luke tried to immerse ourselves in the bus, but couldn’t really concentrate. We took the bus for a weigh in a few days later, an excursion. But everything was so jaded as we didn’t know what the hell was going to happen. Every single one of our plans and expectations for the future was completely shattered, we had no idea if I would even live, we had a bus to build, let alone travelling. I told my family and friends. A lot of this is a blur. I can’t really remember telling people. I’m not sure how I explained this, the words I used. There was a lot of shock, from me, from everyone. You are floating in this alternate atmosphere at this point, with a very tenuous grip to reality. Nothing seems real anymore, the rug is pulled out from under you. You don’t know if you’re coming or going, literally. Everything has forever changed, nothing will be the same again. There will be a ‘before’ and there will be an ‘after’. Two points in your life, a split in the road. I know our friends and family rallied around at this point, and thank you for all being there. You go through the motions of living, of getting up, showering, brushing your teeth. But you are numb, does any of it really matter? You try and fail to get a grip of what is happening, but it doesn’t really work. Only time will help you understand this, or at least with time you get used to the idea that you have cancer, it doesn’t seem to strange to say anymore.