Emily's pituitary journey
I knew I wasn’t right, I can’t put my finger on exactly what it was but it’s strange, you just know. Yes, life was stressful and work was challenging but I just didn’t feel my bubbly self. I felt like I was empty and had no means of re-filling. Nights out would take days to recover from, and mornings were an increasing struggle. “I’m getting old,” I kept saying, joking with friends and making excuses for wanting to go home early from a night out to pyjamas and sleep.
But it wasn’t just at the weekends that I needed sleep. I’d be driving to meetings and feeling as if I were to shut my eyes for just a moment too long I’d be asleep behind the wheel, often pulling over and opening the window to wake up for fear of actually doing so and crashing the car. I remember feeling freezing cold in the heat of summer, shutting the windows and putting the heater on. The air coming from the fan felt icy cold and I didn’t seem to be able to warm up. Those moments would pass and I could almost convince myself that it was normal to have such variations in temperature throughout the course of a day, or that there were a lot of bugs around and maybe I had picked one up.
I remember I was in a meeting once and I was so tired I couldn’t even focus on the speaker, my eyes were closing and I was forcing them open, almost boss-eyed at times. I fumbled in my bag for my glasses, feeling sure I needed my eyes tested, but the truth is that I did not. My biggest worry was that I had become ‘one of those people’ who turns up at the GP surgery on a monthly basis, saying I felt unwell but can’t give any more detail than that. I felt like I was wasting their time as the initial blood tests showed nothing. Was it all in my head? Was this really all down to a stressful life? I couldn’t help but feel that it was more. I started to get headaches in the morning, sometimes they would be so sharp that they would wake me up. Taking paracetamol in the morning turned into the norm, but again I put this down to stress. I mentioned the headaches at my next GP visit: it was at that point they made a referral for me to have an MRI scan.
I remember thinking “oh this has gone too far, there’s no way I need a brain scan”. I was thinking more along the lines of glandular fever or maybe even an auto-immune problem, maybe the bloods had been wrong and I had something like that - I didn’t need a brain scan though.
On the morning of the scan, my friend and I woke up in my flat. We’d been out the night before and she was particularly unwell, we both loped around the flat, drinking tea and sitting in our pyjamas chatting. Realising the time I suggested to her that I just rang and cancelled the scan as we really weren’t up to it!
“I feel like I’m wasting NHS time and money by getting it done- there’s no way I need it, the headaches aren’t that bad,” I said. Nevertheless, we decided to go, I should probably add at this point the deciding factor was the decision to go shopping at the designer outlet afterwards.
I left my friend in the waiting room, went to the scanner and despite the loud clangs and crashes of the machine, I nearly fell asleep in a blissful state of unawareness due to my raging hangover.
Weeks passed and I didn’t even think to ring to get the results, after all I knew it would show nothing.
That’s when my mum rang me at work to say that a letter had come asking me to contact the GP surgery. Without making the link, I rang the practice and asked what the letter had been regarding.
“Your scan results have come back abnormal,” the nurse told me on the end of the line. “Your brain scan is abnormal.” “What do you mean,” I said. “What do you mean abnormal?” “I can’t give you any more information; you need to speak to the Doctor.”
My heart sank and I felt myself go cold. I don’t remember leaving work, or the 20 mile drive to my mum’s house, I only remember turning up there where she and my step-dad were already in their coats waiting at the door. In convoy we walked to the surgery which was only a few houses away. I don’t think we said a word to each other, but I can’t really remember.
“You’ve got a mass in your brain,” the doctor said to me. “It looks as if it is in your pituitary gland though and nearly all tumours in this part of the brain are benign.”
Its amazing how suddenly, when your health and mortality are in question, somebody telling you that something is ‘almost always ok’ isn’t a particularly reassuring prospect. The weeks that followed consisted of waiting for scans and reading about the pituitary gland and what it does. I mean, who actually knows what an earth it is before something like this. The body is made up of so many complex pieces that we can’t possibly be familiar with them all, especially the ones we can’t see. Was it fast growing? How would my life change? Was I going to die or, worse still, feel awful forever? I had no idea. I was referred to a London hospital for specialist treatment. Time had suddenly stopped.
When the second scan came through there was a clearer image of the tumour. I remember sitting next to the consultant’s desk with a picture of the scan on his computer. The picture was a variety of shades of dark grey with the recognisable side profile of my face (and unfortunate-sized nose), but in the middle of my brain was a bright white patch. It was almost as if somebody had got a rubber and rubbed out a circle in the middle of the image. This was the tumour.
They call it a ‘macro adenoma’: larger than the more common ‘micro adenoma.’ Strange that something that is only 11mm wide can be called large but in a ‘pea-sized’ gland I suppose it is.
It’s hard to explain how alone I felt, even with friends and family around me doing everything they could to make me feel ok. Because it’s in my actual head, it felt like it had taken over my whole personality - who I was, what I thought and how I felt. I can’t say for sure that it would be better or easier to handle if it was somewhere else - like on my leg or arm… but I can’t help but think it would be.
Getting used to the regular MRI scans was harder than I thought. I remember thinking “this is nothing, people go through much worse”, but I couldn’t help but feel anxious as they put the head cage over my face and slid me deep into the MRI machine, any feelings of claustrophobia stamped down by guilt at feeling anything other than relieved it wasn’t worse.
I was asked to have an insulin stress test. For those of you who don’t know what that is (I certainly didn’t!), you are put into a hypoglycaemic shock and the way that your pituitary gland reacts to this gives an indication whether you are producing cortisol, which is your body’s hormone to help you cope with stress, a hormone that is produced by the pituitary gland. After blood tests every 10 minutes to measure this, you are given glucose to pull you out of the shock. Exciting stuff eh!
Two weeks later I received a call from the hospital. I hadn’t produced enough hormones which meant the gland was not working properly. I had to start taking steroids immediately, three times daily and for the rest of my life. I would need to carry a steroid card and be trained to give myself an emergency injection, in addition to carrying round an ampule for medical staff to use in an emergency. The news hit me like a train. I was convinced the tumour would just be there, that it wouldn’t cause me any problems because it was benign - right? Surely that meant it was going to be ok?
Suddenly I was reliant on medication. I didn’t know at the time that this was just the start of a long list of prescriptions that I would soon be collecting just to keep me functioning.
Three scans later and they were convinced it was very slow growing, it would need to come out one day but this could be months or years away. It was a ‘watch and wait’ situation. A chance to breath out and take account maybe?
As the months passed by I fell lower and lower. I didn’t understand why this was happening to me, I felt constantly unwell and tired while everyone around me seemed to be young, happy and enjoying life. If I forgot my steroids (which I did frequently), I would feel like I had been on an all-night drinking session, the day would be overshadowed by feeling exhausted and irritable. This would happen even if I remembered but took it late. Suddenly, I felt different to everyone around me. I felt alone and like no one really understood. It’s not something you can just talk about constantly, it just gets boring for people. ‘Feeling wiped out’,’ emotional’ ‘unwell’ and with a constant dull headache. These are all things everyone has from time to time, but mine was constant. I didn’t want to talk about it to people around me for fear of pushing people away, I didn’t want to be that person, that ill person who leaks negativity and brings people down. But it was a struggle and mentally pretending to be ok was breaking me. I felt like I’d forgotten who I was, who I used to be and what it felt like to feel healthy and ‘normal’ Why wasn’t I getting any better? Was this how it was going to be now for the rest of my life? It’s hard to imagine living a long time feeling like this, in old age surely it will be even harder. I feel old.
Further visits to the consultant confirmed my thyroid was also not working. More tablets - more hope of feeling like the old me again.
The biggest change for me came without doubt when I hit rock bottom. My anxiety had hit levels that I had never known before, I was erratic and felt absolutely devastated most of the time, in-between feeling angry and alone: something had to change. I had to take charge of what was happening before something bad happened.
I kept thinking “this is me now. My hormones are all over the place and always will be so this is who I will be - fickle, unconfident, insecure and, at times, brash. A shadow of the person I used to be, the girl who was always up for a party, last on the dancefloor and always up for a laugh.”
The truth is that no, I’m not that girl anymore, but I’m not sure that I miss her that much. I feel like my experience has made me grow up and see things, people and life from a perspective that I possibly never could have before. It’s not bad, it’s just different. Obviously I would prefer not to be taking lots of medication all the time but its better that than feeling the way I did for sure. By accepting what has happened I can let myself off the hook for having a pyjama day or finishing the night out at 10pm in search of sleep. Alcohol, cigarettes and dancing have been substituted by brunch, walking and spending time with those who I love and who make me feel ok for being me - whichever version that is!
It’s hard to see a situation that has been the catalyst for those kind of changes as a completely negative one. Yes I feel sad, but I also feel very lucky for lots of reasons. Accepting the situation and looking forward to how life will be rather than how it was is the key to coping with this. Grieve but be grateful. They say this and it’s true: you really do know who your friends are when you go through something like this. If the ones you love can withstand the ups and downs, then the love is strong and worth holding on to.
I currently take nine tablets a day and that is likely to increase as things progress. I found myself feeling quite low about the number of tablet packs kicking around in my bag so I invested in some dosset boxes - each day with four compartments. Just doing this small thing had such an impact on me. Having a discreet pot in my bag rather than strips and strips of pills felt like my handbag looked like any other 29 year olds’ again, just back to the usual make up, half packets of mints and shopping receipts! I usually find half an hour on a Sunday to sort the tablets into boxes for the week and it makes my life so much easier. Now I take my tablets, at the right dose, at regular times of day and I feel so much better than I did when I was sporadically taking tablets because I couldn’t keep on top of what I had and hadn’t taken.
The latest results have seen my fertility hormones plummet and, although expected, it’s still a shock. I don’t want to think about the possibility of not having children; it would be heart-breaking for me. I’m told it can still be possible though so I cannot do anything other than wait and see.
I’d be lying if I said I wasn’t scared sometimes, or worried about the future and how I will feel as time goes on. Some days are definitely better than others, but I just try go with the flow, making sure that I rest and sleep when I need to. I do worry that it is changing because I have started waking up with headaches every morning again and am feeling increasingly tired and lethargic. I really push myself to get glammed up and go out with the girls, which is still possible but I feel more unwell than ever for the week to follow as a result. I am due to have a scan next week so I will find out then if anything has changed.
The last 18 months have been a roller-coaster of emotions but has also been an amazing journey of self-discovery. I’ve had to take a long hard look at my life and focus on the things that make me feel well and happy and get rid of the things that cause me upset and anxiety. It sounds like the logical way for any of us to live our lives but if we are completely honest, most of us don’t.
Having something like this has completely changed my perspective on things and I have begun to see people very differently. There are so many people walking around, getting on with their day to day life, who have long-term physical or mental conditions and rely on medication to keep them functioning. So many people who feel unwell most of the time and who struggle to keep positive with the prospect of not knowing how, if and when they might feel worse, clouding their future. I wouldn’t say that this brings me any comfort but being one of those people is a very humbling experience and the fragility of life and health becomes very real.
It’s hard to feel sad, angry or upset about this because it has definitely resulted in me being more aware, more considerate and more empathetic to other people. In addition to this I am much more conscious of my health and what I put into my body.
My advice to anyone who has just been diagnosed with a pituitary tumour is to give yourself time to digest what is happening. Shock can take months to come to the surface. You will go through the grieving process - anger, denial, sadness and guilt - but try to recognise that this is part of coming to terms with things. Don’t be hard on yourself but don’t let it take you under either. Just take each day as it comes. Getting the hormone levels right takes time, much longer than I expected (and I’m still not sure it’s quite right!) and there will be days when you think that you just want to give up on it because you feel like you will never be ‘you’ again. But stick with it. You might not be the ‘you’ that you were before, but who you become and how you choose to be in the future is completely your choice and totally within your control. You may just have to adapt the way you do things slightly.
Don’t try and keep up with others or push yourself. If you feel unwell or tired, then rest. Don’t see it as the tumour beating you, rather see it as you taking control back. If you don’t, you will have to spend more days recovering, both physically and mentally, and this will be harder the more you just try and keep going. Don’t underestimate the effect hormone imbalances will have on you. It can be completely devastating and bewildering but do what you need to do to get through it. If you need some help with coping with the anxiety or coming to terms with what is happening to you, then take medication to help with this. It really is worth giving yourself the best chance you can to accept that this is how things are going to be, rather than fighting it in a state of upset or denial. Take any hormone replacements that you need to on time and regularly. Don’t forget or think that missing doses is ok. Doing this for a prolonged period of time will make you feel very unwell - I’m talking from bitter experience! This is something that you need to take seriously. Wear a medical alert and let those around you know if you are steroid dependant so that they can pass information on in the event of an emergency.
Learn to love yourself, I mean every side to yourself. Over the next weeks, months and years you will get to know things about your personality that you never knew were there - both good and bad. Use this raw exposure and inability to hide your vulnerabilities and insecurities as an opportunity to understand yourself and focus on being the best version of you that you can be.
You will be ok.
Strangely, when I write that I still find myself struggling to believe it fully in relation to myself… but that is because I am still relatively early in my journey too. Although so much of my life feels out of my control now, I am determined to work harder than ever to ensure that the bits that are, grow and develop to become exactly as I want them to be, amazing and full of good friends, family and love.