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My son was 4½ months old when I was diagnosed with acute myeloid leukaemia (AML).
Listing everything together now, it is clear something was up, but because I was a new mum and expected to be exhausted (and unreasonable!) it wasn’t actually that clear at all. However, throughout the four-and-a-half months since birth, I did keep going back to the doctor with a variety of symptoms (or what at the time everyone may well have thought were just the anxieties of an overwrought new mother) – concerns about my birth wound, dizziness, tiredness, nose bleeds; each symptom on its own didn’t look particularly suspicious. By the time I had bruising and aching joints and had had a black-out coming down the stairs holding my baby, I think the last GP I saw probably put everything together. She asked lots of questions and ordered blood tests. Later, she told me and my husband that the people who were looking at my blood noticed I was very anaemic and had a look for a reason for this, hence the diagnosis.
The day I was given my initial diagnosis was the day of my brother’s wedding. I was admitted to the Royal Marsden in Sutton and had to call my father while we were waiting for a room, to let him know we wouldn’t be able to make it. I thought I was fine, but when it came to it, I couldn’t speak, so my husband had to tell him. It was pretty tough on everyone, and none of us had any idea what a diagnosis such as this meant. My father also had to keep it to himself during the wedding lunch, which wasn’t something I had thought about when I called. My own thoughts were that this diagnosis was not good news, but I don’t think I could really process much about it at the time. Luckily, we had our baby to think of, although the burden of his entire care suddenly fell on my husband. He is self-employed, so had to cancel pretty much all his work to look after me and our baby. He was amazing, but I know it was incredibly difficult.
That first night in hospital was very, very lonely. The nurses were lovely, as were the doctors, but there were so many feelings and anxieties floating around in my head – added to which I’d had to say goodbye to my husband and son, not knowing really much of what was going on – that no amount of kindness could really take the isolation away. I think it was a pretty awful, equally lonely night for my husband, who was also thrown into a completely surreal situation. After this, the nurses located a cot for my son, which meant at least for my first admission, before we got used to this new way of life, he could go down for naps and they could both occasionally stay the night. This became less of a necessity once we became used to things and my husband was able to start taking on a few jobs every now and again, when his parents kindly looked after our son.
I had blood tests taken the day I was admitted to determine the type of leukaemia I had. Initially they thought it was acute promyelocytic leukaemia (APML) and were planning to treat me for it, but held off after an initial blood test didn’t confirm this. It took a few days for all the results to come back, and luckily for me it was good-risk AML.
I met my amazing consultant, who said that what I had was ‘a serious disease, but curable.’ I clung to that throughout my treatment. I swear that the assumption that I was going to get better is what got me through. The only time I wavered, due to a chance remark by a nurse that my son and husband gave me ‘something to fight for’, I became pretty ill. It hadn’t occurred to me that I had to fight, as it hadn’t occurred to me, since that first meeting with my consultant, that I wasn’t going to survive. But after this shock (which is what her comment felt like) I got a staphylococcal infection, bacterial and viral pneumonia and C-Difficile, and for the first time I felt very, very ill. This was also after my first high dose cytarabine treatment, so I’m not laying all the blame on the nurse’s comment! Another nurse gave me a pep talk during this period, and that pulled me out of my black hole. I needed to see a way through, and she gave it to me.
My treatment was daunorubicin and cytarabine in fairly small doses, twice, and then two infusions of high dose cytarabine. (In the end, I had half the high dose for my final round; I begged to be let off the final round altogether and my consultant relented and said I could have a half dose, but I had to have it – although I’m sure it was more medically informed than that!).
Most of my time in hospital was fairly standard – receiving treatment, having the odd x-ray, waiting for my bloods to go down, then up, peppered with reading lots of books, watching lots of DVDs and taking up embroidery (which currently lies incomplete in a cupboard somewhere), along with visits from my husband and son/friends (when wellness and strength – mental, as well as physical – allowed). It became very normal, very routine, and we all just got on with it. However, there were two or three occasions when I was actually pretty scared. Shortly after my admission, an x-ray showed a shadow on my lung, and I was very, very scared indeed that I also had lung cancer. They took me for a CT scan, and the wait for those results felt like a very long one, although it probably wasn’t at all. When they told me I had pneumonia, I could have jumped for joy. It was the best news I could have had – I was absolutely delighted!
Another time I found myself feeling very anxious was during my ill period (my third admission). I sweated so much I had to change my clothes with alarming frequency. I was also freezing cold, and so weak I couldn’t have a shower. I suddenly understood what it was to be ill. Some nurses came to see me with a different uniform (purple), which terrified me, but luckily they didn’t take me away. (It turned out they were ICU nurses, coming to see if they needed to move me to their unit.) I think my fear was perhaps a recognition of the fact that different uniforms meant something serious was going on. I was very relieved to have my blue nurses back the following day!
I was pumped full of potassium (apparently I needed to be at a certain level of potassium before the purple nurses were convinced I was okay where I was), which made me so bloated that I eventually begged my consultant to let me just eat lots of bananas and drink the horrid potassium suspension they had. He kindly said they could move me on to the suspension and I didn’t need to go overboard on the bananas. I was also on oxygen for a period during this time.
The final incident that caused me particular anxiety was also during this time, when a nurse told me I had to get ready to go in an ambulance to go to another hospital for heart monitoring. First, that came completely out of the blue and I had no time to mentally prepare for it. Second, I had temped at this other hospital, and I had not liked it, and somehow I felt if I was sent there, I might never escape. I was very, very unhappy about the whole thing. Added to this, my husband was on his way up to see me from Wiltshire and was stuck in traffic, and I really, really needed him at that point, particularly if I was going to the other hospital, which in my imagination had become a looming, dark, gothic monstrosity! Luckily, a short time afterwards the same nurse came back and told me my bloods were ‘demented’ and therefore I couldn’t leave. I cannot tell you how happy I was to have ‘demented bloods’!
Once the fever had passed and I was feeling a bit better, I had a medicine I had to wash in, which meant I had to have a shower. Not having had one for a few days, perhaps this was just the doctor’s way of getting me to have a wash! But I will always remember that as the worst moment of my stay at the hospital because it was the first (and last) time I had to ask for help to bathe. I hated it. There were many indignities, which you just have to live with, and there were inconveniences such as being attached to a drip all the time, but asking for help to shower was the thing that did it for me. It was nice to be clean, however, and I managed on my own after that, although it was exhausting. I remember my husband calling as I came out of the shower one time and talking to him on the phone so out of breath, it was as if I had just come in from a long, hard run. All I had done was walk 10 paces from the shower to the chair!
My mother came to visit me when I was starting to recover from this third round, but I was still quite weak, and she arrived before I expected. Normally I wore something on my head all the time, but at this point sometimes I didn’t bother, as everyone had seen me at my worst. But my mother hadn’t. I will never forget her arriving before I thought she would, and realising I had no head gear on. That was probably the most ill she had seen me, and I imagine it was a huge shock. I will always regret the impact that must have had on her.
My family were amazing. However, of five siblings, not a single one was a match with me for a stem-cell transplant (SCT), although luckily I didn’t have to have one. I hadn’t really realised at the time the impact my illness had on everyone, and were it not for picking up titbits of information afterwards, I would never have known. They all put on amazingly brave faces. And visiting me wasn’t easy – my parents live in Scotland, my brother was in Sheffield, one sister was in Russia, two of the others had small children, and one was in Manchester. My parents-in-law lived two hours’ drive away. I do not underestimate the effort people (and not just family) made to visit me/write to me/send me things (such as lovely pyjamas and slippers and bed socks – people were incredibly thoughtful). I had a cork board on which I put my letters. As it filled and then began to overflow, I found it a real comfort. I felt like I hadn’t just disappeared into a hospital room, but I did and would exist outside it. I also had a simply enormous pile of books by my bed. So many people brought in and sent reading material that I would probably never have a chance to get through – it was brilliant.
Most of the time I was in isolation, but for trips down to x-ray I enjoyed bumping into ambulatory care acquaintances in the corridor as we travelled along in our wheelchairs. It was nice to see people other than nurses and doctors. For that reason, having bone marrow biopsies was actually a bit of a treat, as it meant seeing other people and being in a different environment. There was also a wonderful therapist who came in and gave the best foot massages. I really looked forward to her visits.
I wasn’t in hospital for months. I had four or five weeks, then a two-week break for Christmas, then another three or four weeks, then another break of two or three weeks while my white blood counts recovered (this took progressively longer and longer). The third and fourth treatments, I could come in for the infusion and then drive home, to be admitted again when my counts dropped. This was nice, as I had a (small) level of autonomy, plus I could be at home with my husband and son. I don’t think it was very restful for my husband, though. In some ways, me being at home was scarier for both of us than me being in hospital, as suddenly there was no back-up. In the end, I was admitted on 19th November 2010, and discharged the first May bank holiday of 2011.
Oh, and my hair fell out. I got my husband to shave my head on my first break from the hospital, as I was worried the baby would ingest the indiscriminately dropping bits of hair. After that, I couldn’t look in the mirror, as I wasn’t happy with the shape of my head! Thus, the idea of headgear and a wig became supremely important. There was a brilliant website called Suburban Turban and I think for a while I must have been one of their most voracious customers.
One of the hardest things about being in hospital for extended periods of time, and being in isolation, was being separated from my baby for long periods i.e. when he had a cold (and he did seem to have a few!). It was also hard not having the energy to see him for long when I DID see him – that is a horrible thing to have to admit to oneself. My parents-in-law were brilliant, looking after him when my husband had to work or needed a break, and my cousin was a very kind and willing babysitter on evenings when my husband had to work. When I came out of hospital for good, I had to work hard on re-bonding with my son; I felt we’d lost our connection and it took a long time to re-establish it. Of course, that makes perfect sense to me now – his primary carers during that time were my husband and my parents-in-law – he’d spent longer being looked after by them than by me by that point. But I felt it and I struggled with it.
Once I was out for the final time (and my goodness, I was praying and praying my white blood cells would remain high enough for discharge) I felt simultaneously deeply relieved and absolutely terrified! But the changes quickly became normal. We moved house shortly after this, from London to Wiltshire. I hadn’t realised how affected I would be by everything, and how long it would take to feel ‘normal’. I felt guilty about feeling too tired to do things and made ridiculous excuses for not doing things rather than just saying I felt tired, which, in retrospect, would have been perfectly acceptable! All in all, it took a good two years for me to feel properly normal again. I went back to work six months after I left hospital, but it was hard – I was commuting a four-hour round trip to London, leaving at 6am to get to work for 8am, to ensure I could leave by 4pm to pick up my son from nursery at 6pm – it was a bit fraught. I also worked in a job that was quite emotionally demanding. Added to this, our son was not a good sleeper, and we were often in to see him five times a night. After a year of this I resigned, as I was feeling fairly frayed.
During this time, my husband and I had decided to use our remaining frozen embryo (I had had to have IVF to get pregnant before). It didn’t work. I resigned myself to the fact we couldn’t have more children. However, two months after I resigned from my job, I found I was pregnant. Nobody believed me (including me). I did eight pregnancy tests and still the doctor told me to return the following week and if the result was still the same, then pregnancy was likely! I had mixed feelings, having finally accepted we couldn’t have any more children, but now I can say that both my pregnancies, for different reasons, were the best two things in the world. And now we have two amazing sons, who are nine and five. Unbelievable, really. My consultant was really pleased; he had always expressed a belief that this might be possible, and he was proven right. I think it also meant he could say with conviction to his female patients that it was not a given that infertility would follow treatment.
In January 2016, I was signed off for good. I was a bit sad, as I actually associated my trips to the hospital as positive ones and I would miss chatting to other patients, some of whom were familiar faces, some of whom weren’t. I would miss my amazing consultant and the amazing clinical nurse specialist. I would miss the relief of my bloods yet again being okay!
So really, I had a very good and positive journey. I was lucky in my diagnosis, I was lucky in the support I had and that everyone offered to my husband, and I was incredibly lucky to get pregnant. I will always be grateful to everyone I came into contact with at the Marsden for giving me a very good experience of what it is to be cared for with such professionalism when I was very ill, and for giving me some really good memories. I should also add that I met some wonderful patients, not all of whom made it, and that is the flip side of my experience; not everyone does have a good experience – a lot of people struggle through awful times, sometimes to no avail. I know that, and I know how lucky I was to survive.
The trouble is that if you look up any symptoms of leukaemia (as I have several times since!), you could have anything. And certainly, for me, something like leukaemia would never have occurred to me. Prior to my diagnosis, leukaemia was a fairly mystical illness, and very far removed from my reality. So, a bit like the campaigns making people aware of sepsis, I think being aware of it is really important, partly because it can be so fast moving. The more we know, the better armed we are. I think we know when there is something seriously wrong with us, we just don’t know what it is that we have. Being aware of what the symptoms are might just be the link that some people need in order to get help faster