Cushings Syndrome: two steps forward one step back
By: Laura Woodfine-Jones
Tags: Cushings Disease, Nhs, Recovery, Invisible Illness, Hospital

It’s Boxing Day 2020 and whilst many will talk of how Christmas was different this year and not in a good way, for me this Christmas was better than I could have hoped for. This Christmas was the first year since I had heard of Cushings that I could spend the whole day enjoying time with family and I haven’t thrown up my Christmas dinner. It appears that the fourth time really is the charm.

Christmas 2017, I was still recovering from my IPSS and had just started steroid suppressants. You could still see the outline of the bruising down my left forearm and I was a queasy confused mess from the drugs, I struggled keeping down most meals never mind Christmas dinner. Christmas 2018 was the first after my surgery, I was still battling to get the balance of drugs right and had a full relapse. I threw everything up and was tucked up in bed within an hour of lunch. Christmas 2019 I had been suffering with a bad cold from the start of December, I had been on sick day rules for a couple of weeks and was yet to go in for some antibiotics, again I threw everything up and had an early night. But this year, this year I was up early, I took extra steroid to sustain me through and I did not throw up once. Yes I stopped eating after main course and did not go for nibbles in the evening, yes I had ten minutes quietly sitting by myself to stabilise, but all of that is OK, it is healthy, it is normal.

Now, before I get too side tracked by the festivities back to my story and where we left off. For this bit it is important to note my issue was in my head, this next bit will be remarkably different from those whose cause is linked to their adrenals. So I am afraid this account is better suited to help those of you with a pituitary tumour I cannot advise on the after surgery experience of adrenal surgery.

It was July 2018, Manchester was enjoying a heat wave and the city was high in the hope that England was one match away from the World Cup final. I was packing up my bag to leave my flat for around six weeks whilst I went in for my surgery and got over the initial rehab at home with the support of my parents. I had read the pamphlet detailing surgery again (with hindsight that was definitely the PG version); I had bought multiple sets of new pyjamas that buttoned up as I was warned I couldn’t get a t-shirt over my head due to monitor wires and I packed some magazines because surely I would be sat in bed bored… LOL as it turned out I was never awake long enough to get bored.

The surgery involved drilling through the back of my right nostril and going through to the pituitary gland which is located behind your optic nerve. There was a complication with my tumour meaning that although it was no more than 5mm long, it had managed to embed itself into the gland rather than the more common position of sitting on the edge. I was therefore warned that in order to be sure I would not relapse or need to go back in for a second surgery it was highly likely the right half of my pituitary gland would be removed in surgery, this turned out to be the case. Unfortunately the pituitary gland is not quite like your appendix, it is not one of the more ‘optional’ organs. It is colloquially known as the “switch board” and is your archaic brain which existed before the brain as we know it evolved. Therefore I knew that despite being cured, I would be on daily drugs for the rest of my life, the question would be which ones and how much.

The surgery was a success, through micro surgery techniques the right half of the gland was cut out and cauterized; and as the ever charming Dr G stated “disappeared somewhere up the sucker”. To this day I do wonder just how much was shoved up my nose, I promise you it really isn’t that big! So the three to four weeks of nose bleeds leads me to believe more than is natural. The whole process took six hours which I am oblivious to. I have flashing memories of the recovery ward, the nurse holding my hand as I opened my eyes, his patience in talking utter gibberish with me, the first time I had to go to the toilet on a bed pan, the first eye test, but more than anything the wave of nausea and the start of the vomiting. I had an antiemetic tablet which I duly threw up resulting in more being introduced to my drip. Other than that I distinctly remember seeing Dr G’s dinner bag on the side and talking to Dr G about his tea. Considering I spent three hours on that ward I only remember around ten minutes the drugs were so strong.

As I mentioned, I do not remember seeing my parents when I reached the high dependency ward. My next memory comes in the dark, I was woken up for another eye test. I scratched at my face panicking at the mask and gasped struggling with the padding taped over my nose making it hard to breath. There was beeping, wires taped to my chest and back, a drip coming out of my arm and railings either side of my bed, but with the calming influence of a new nurse I was settled and accepted this state of being. It was only really that morning when the anaesthetist warned of the monitors that I had even considered I would not be able to survive post surgery without the machines. Another thing you don’t realise is that in the first 24 hours, every 20–30 minutes you have to be woken for an eye test for fear that there may have been damage to your sight or at worse that you have gone blind. Though rare, the risk is real. By the time of my mum’s first visit I had seen the text so many times my mum pointed out that even in my doped state I had a photographic memory so I had probably stopped reading before breakfast and was merely reciting without realising. From that point on the eye tests were a variety of texts so in good news I really could see.

On the first day I didn’t manage to sit upright. I had to use bed pans and the monitors bleeping various warnings was pretty constant. I drifted in and out with the blur of time punctuated by the violent vomiting the minute any antiemetics wore off. I was on drips and wore a snazzy pair of circulation socks which were to remain on for at least the week. In good news on my quiet ward I had the window bed and after getting used to the mask, the blood and the monitors, when I opened my eyes and stared into space, for the first time in a long time I felt calm. It could have been the success of my surgery and lack of steroid, more likely it was the morphine and codeine cocktail.

My mum came at the start of visiting hours and patiently sat with me while I struggled to piece together incoherent sentences. I repeated myself, I used the wrong words and I slurred. My poor parents spent the next three weeks questioning whether I was brain damaged, the truth was I was brain exhausted. One thing I did manage to communicate to my mum (other than the fact she had a nice drive over — it turns out I asked around six times) was that I had a very specific and very sharp pain in my head. It was an odd place for a headache and was behind my ear. I could actually point to the pain. To calm me my mum went to look at the spot. I remember the shock and the panic as she instantly called the nurse, the spot I referred to had a hole there and was covered in dried blood. Chris was there in an instant and explained if we looked we would find three more identical holes. Surprise!!! Turns out my head had been in a brace. In order to prevent any slight movements which could have been fatal your head is locked in a brace for surgery. Not something that was mentioned in my pamphlet! Made total sense when the nurse explained it and just like that my mum was calm again.

The other thing my parents took in their stride was the number of bed pans dotted around my bed. The constant nose bleed and regular vomiting meant I needed a constant supply. The nurses swiftly removed bowls of bloody tissues and supported my body when I was sick. My face was numb from the drugs so my parents would politely indicate when it was time to mop up my face again without showing any panic that the bleeding hadn’t stopped. They would note each machine as it was removed and calmly wait while I battled with the English language.

I guess that is the thing when you are a parent of someone with an invisible (or at that time pretty darn visible) illness. You learn to react, process and recalibrate in real time to protect the patient. You become so efficient at processing the information and emotions that any spectator would be forgiven for getting whiplash. So now that we had identified my holey head I simply took more painkillers and drifted off. I next stirred when my mum and dad came back later during visiting hours. That was their routine over the next couple of days, prepare my food in a morning (I really don’t like hospital food), come see me at the start of visiting hours, go away and kill some time before returning again later in the day. I was so exhausted I couldn’t handle prolonged interaction. I think my parents spent more time in the trafford centre that week than since it originally opened.

Due to the trauma in my nose I lost my sense of taste and smell. I even asked my parents to buy me some pickled onion monster munch! I went through three multi bags in the following couple of weeks and couldn’t smell or taste a thing… it probably took around six months before I had a more normal sense of smell.

On day two I managed to sit upright and use a commode. Gradually some of the monitors were removed and the eye tests became hourly. I had drinks provided upon request and one of the helpers even hunted me down a bottle of cordial. I was thirsty. I continued to nap though a truly deep sleep was impossible due to the pressure in my head and the constant ache as I went from pain killer to pain killer. another day I did not get around to reading those magazines.

That night I remember the room spinning whenever I opened my eyes: breathing was laboured and my body felt as though it was at sea. I had never felt like this but I knew something was wrong. In my state I was not thinking clearly enough to call a nurse and did not have the strength to show that I was awake. For that reason it was not until the nurse change first thing in the morning that anyone noticed something was going wrong. My blood pressure had plummeted and the new nurse swiftly appeared with a blood sugar test. My blood sugar was so low I had spent the night in hypoglycaemic shock. I was given a tube of glucose syrup which I had to finish before the nurse would leave. For those of you who have not tried eating a tube of flavourless toothpaste … it was grim. However; my blood sugar stabilised and I was back to my usual state of dopey.

On day three I was determined! Today I was going to walk. The reality, with Nick and Chris on either side of me(two of the most phenomenal nurses I have ever met) I shuffled a few steps and back again. Shattered I went back to sleep. I managed some dry toast for breakfast and it was nearly lunchtime before I threw up. In the early afternoon I shuffled to the bathroom near my bed where a chair had been set up in the shower. I had a wash!!! When you are still attached to a drip, you cant stand independently and every muscle feels like a dead weight that was an achievement. I put on my button up pyjamas and then the nurse who had spent the whole time waiting by the bathroom slowly helped me shuffle to bed and hooked me back up to the machines. I went back to sleep only to wake when my mum arrived. My mum kindly put a lose braid in my hair as there was no way I was putting a comb near those holes. My dad fetched me some fruit pastels and Ribena from the shop so I could keep my blood sugar higher. Turns out vomiting isn’t that good for you.

If that first wash showed me anything it was how tired my muscles were. If I was the type of person who ran a marathon I imagine it is how your legs feel at the end. But I am not that person, I am the person whose muscles had spent the last ten years wasting and so there was nothing left. Well that isn’t true, there was one thing left… another nap.

Day three was also the day that the senior nurse walked in. I don’t know her name I just remember she was tall, moved with that quiet grace only mastered by nurses and had a kind smile. I think because she helped me shuffle to the toilet or when I was too weak had the commode brought in that she realised just how often I needed to wee. Therefore she got me some pen and paper and told me to tally every time I had a drink she also discreetly had my wee measured. Not only did this start me using my brain and hands (magazines still nowhere in sight) but it also helped her to call up the consultant to confirm that I had diabetes insipidus. My body had stopped retaining any liquid and I was in a vicious cycle of dehydration. Whether this was temporary or permanent remained to be seen.

I always remembered in one of my many consultations with Dr G that he had said many Cushings patients could go home on day four. So in my head I was going home on day four, no matter how hard I had to work. During the morning rounds the consultants left it open that it would be a maybe. So I walked to the bathroom by myself (nurese on standby watching me go), I managed a second wash, I ate the dry toast and even had my drip and the final monitors removed. I was on an adrenaline fuelled roll. By lunch I was told I would have to stay. When my parents came for their first visit of the day I was sat in my chair deflated, but I was clean. After they left Dr G came for a visit by himself. He saw how deflated I was and knew from many consultations with me and my parents that I would be going back to their house for full care. For that reason he wrote prescriptions including desmopressin for the new found diabetes insipidus, set a high level of steroid for the first week to keep me stable, some antibiotics, some epic pain killers and a dose of antiemetic to get me home. To the shock of the nurses, provided I returned every Thursday for a check up Dr G let me go home.

My parents came back and packed my bag whilst we waited for the drugs. My magazines remained unread as they were packed up again. That shuffle to the car leaning on my dad was the first time I had left the bedroom. Unlike the football which had been lost the night before (sorry England I dozed through that match), I was going home. I was gingerly packed into the front seat of the car and my parents took me home. As we arrived back a neighbour started to walk over to say hi and see how I was doing, one look and she waved and backed away. My parents took my weight as we got inside the house and I was put straight to bed. I slept the rest of the day only to be woken at intervals by my mum at drug time, eighteen individual doses to be timed with military precision. But that did not matter, I was home.

Speaking of home I think that is enough of the story for Boxing Day. Writing this has made me realise that maybe it would be more realistic to expect a mini series rather than me being able to summarise my life in two quick posts. But trust me, now I have started I will be sure to finish! After those first few days in the hospital there is a rapid improvement and I was flying to Sri Lanka by November. Keep hanging in their cushies and do not doubt that the brief fight is worth the freedom yet to come. So with the hospital stay behind me and the initial stabilisation complete, I will leave the acclimatisation to my new life for another post. Yes those first few days were hard, yes my failing body scared me; however, the calming influence of the hospital staff rallied me and no matter how tired you are, your body can always fight back. After my brief stay in hospital I will say one thing, no matter how many times we clapped for the NHS this year it will never be enough.

Now where are those Christmas chocolates…