Anaesthetic, have you ever had it?
I used to enjoy coming round from anaesthetic, almost like a reawakening or some sort of mystery drama. Where have I been for the last few hours? What’s been going on? Or, as someone with a massive over active imagination… what year is it?
In the past, I’d often have an overwhelming urge to hug everybody in the room as I came round, which is completely not like me. On the whole, the experience has always been pleasant, full of relief and utterly fascinating really. It’s certainly never caused me any fear.
After my last surgery, to remove the third tumour back in October 2019, I remember being overly thankful to anybody and everybody in the room as I came round but I was too weak to hug that time. That surgery had been around 3/4 hours and everything was okay, I experienced some severe pain when I was put into a bay on the ward but that soon subsided with some hard drugs and being moved to a room on my own away from the noisy cow eating crisps like a pig opposite me while phoning every family member who I can only assume were all deaf.
Anyway, the fourth tumour arrived around February 2021. I’d had about ten months respite since the last one.
I’m frequently asked how I know they’re back, do I have regular scans, etc? I have an MRI around every 6-12 months but I always know if it’s back before then because of symptoms. I have a good relationship with my consultant and doctor so I can get blood tests and an MRI done if and when I reel off my concerns – my self diagnosis has always been right! Many of us are so in tune with our bodies after major things happening that we know when something is off – this time it was hair loss (clumps of it in the shower) and I’d gone from being able to exercise regularly and occasional fatigue to being completely floored and in bed for four weeks.
Now, I know it’s hard to know what to say to people that are undergoing surgery, and maybe even harder when you know they’ve done it successfully 3 times before, but something I can’t seem to shrug off was someone saying to me ‘you’ve done it before so no real biggie is it?’.
(Biggie = slang for Big Deal)
That’s why I wanted to share it this time.
I think the fact that millions of people are having to wait for surgery due to the pandemic and I didn’t tells us that it’s a biggie. It couldn’t wait.
After it was confirmed by letter that the fourth tumour has arrived I had a video call with my consultant, previous surgeon and a new surgeon called, Kumar, about what the plan of action would be this time.
Sadly, it’s not about getting rid of the tumour forever, it’ll always come back – that’s just how it is for me not for everyone – so it’s about getting me some respite.
I’m told this surgery would be more aggressive – hell the hospital where it’ll be done is one of only five in the world who do this procedure. ‘Aggressive’ often a word people use to describe me if they owe me money, but this time it’s used on hospital letters as consultants express regret that we’re having to try and stop this mofo again.
Although pituitary tumours are indeed rare, mine is also pretty unique in it’s tenacity and unpredictable locality to vital blood vessels, etc., and it’s inability to stop blooding multiplying or reacting to medicine and intervention.
The tumour has latched on to somewhere new this time, like a game of hide and seek with a toddler its finding new areas to grow and is precariously close to major blood vessels this time.
We are told from the offset that the surgery this time would be all day but as a self-employed person an all day job can mean four-and-a-half hours with a break for Bargain Hunt at 12:15.
Monday, 28th June 2021
We arrived at the hospital just before 7:30, that’s my check-in time, we couldn’t be any more than 10 minutes early so they could manage footfall during covid. I had to go in on my own, you’re not allowed anybody with you unless you need a carer, so I said goodbye to my partner and wandered off with my suitcase to the admissions lounge. It wasn’t long before I was called in to a holding room where they prepare you for theatre, I was hoping to God I’d be one of the first on the list for the day, not because I was anxious because I was bloody hungry. It’s important for me to let you know at this stage that I get hungry and if I think I’m hungry I’m even more hungry I could have eaten 30-minutes previously but once my mind latches onto food I’m convinced I need to eat or die – we will revisit this on Sunday.
Sat in a glass cubicle I was labelled up with my name, allergies and my personal possessions were labelled up too. What followed was a visit by the anaesthetist and a cannula inserted which I was told would be one of about 4, my neurosurgeon came to see me along with the ENT surgeon and a doctor, oh wait, and another nurse.
Bloods taken, the risks of the surgery gone through again, obviously death, stroke and more prevalent than ever before a CSF leak. For those messing about at the back in science / biology GCSE, me included, a CSF leak is a brain fluid leak and because I’ve had so much surgery there before it’s highly likely this could happen and would need to be rectified with more surgery.
Also, I’m told to remember that the previous surgeries were less intense; ‘imagine last time the hole made was a two out of a possible size ten, this time it’s a ten out of a ten in size’. I’ll also need a graft and replacement flaps. Nose flaps! Grow up.
Sorry, I probably should’ve mentioned to you earlier that the surgery is done through my nose, so no head scars or hair loss. Amazing, huh?
Warren, the ENT surgeon, went through the list of his risks again with me including one thing he reckons he told me in a previous clinic meeting; my nose may change shape forever. I don’t think you did tell me but it’s 8:30am I’m hungry and I wanna get this s*** done. Who cares about a collapsed septum anyway?
I had to sign document to say all that had been explained and they would see me in a minute in theatre.
So, ‘flattering’ hospital gown and brand new dressing gown from John Lewis on, which the nurse comments on how pretty it is – she’s got good taste – and 10-minutes later I’m walking myself to theatre between two gents whose roles I can’t remember. I feel quite superior as I walk past the other holding cubicles of other patients – who all seem to have wild scared eyes – who are not going into theatre yet.
I don’t really feel anything more at this point other than recalling a story on the BBC recently where they dropped a woman during surgery. How does that even happen?
I’m asked to get up and into a pre warmed bed with blankets. To my right I can see nice cold easy-to-clean bed and I know I will be magically slid (patslide) over to that as soon as the anaesthetic takes hold, which it won’t because I’m going to out smart it. This will be the time I out smart it.. Wait… The transfer to the cold bed must’ve been how they dropped that woman.
Oxygen mask on, ‘ok Catherine start counting for me…’
Ten hours later
It’s now 7 p.m. on Monday the 28th of June and I can hear something like ‘it’s all done Catherine’ I begin to open my eyes I can see a nurse, my main surgeon and somebody else I can’t picture now.
‘You’re done, we had a bit of the problem at the end with an unexpected leak but we think we sorted that out’
Ten hours I was being operated on and they didn’t stop for Bargain Hunt!
As I still come round I don’t really take in his words because the pain is not what I’ve experienced before; it’s a biggie. I’m going to be sick, but I can’t be sick I can’t put any pressure on my head because it will create another CSF leak and I’ll be back in surgery. I can’t eat – I want toast – but I need to be nil by mouth in case of a CSF leak and I need to be back in surgery.
The risk of this leak is huge and it must be avoided.
I can’t lie on my side, I have to stay on my back and my head must not be elevated above 30% in case of a CSF leak and I need to be back in surgery!
The fear is immense, as well as the pain.
I won’t lie. I am scared.
What follows is hours in ITU with the most loving nurse, Millie, originally from the Philippines – you know, one of those ‘bloody foreigners’ coming over here taking our jobs, and doing them better than many – Millie spent the hours crushing tablets putting them in water, squirting them into my mouth, because I couldn’t swallow anything solid in case I needed to go back to theatre, just to try and ease the intense pain – morphine, codeine, IV paracetamol, repeat.
We tried turning my head to the side to ease some pressure, but it instantly created a leak from my nostril and they couldn’t determine what the fluid was. CSF fluid is clear but of course this had some blood in it from the surgery so they couldn’t determine what the fluid was. So, it became necessary to wake me up if I nodded off to ask me if I had any fluid running down the back of my throat they weren’t quite sure otherwise how to determine if it was CSF.
Millie knew I was in so much pain and I had at this point been sick a few times so we stopped the morphine in case it was that and all she could do was just hug me as I drifted in and out of a haze with zero concept of time. Millie really was amazing.
At some point I was sent down for a CT scan to see if they could see anything re a leak, nothing untoward showed. This in itself was hugely frightening as I’d not been moved since the surgery was done and I was scared any slight movement would cause this damn leak.
At 5 a.m. they called my main surgeon to give him an update, he was happy but it’s still to be nil by mouth, I was to lay on my back my head was not to be elevated by more than 30% and complete bed rest until further notice – I’ve got a catheter I’m not super human.
I remember watching the clock and seeing every hour go by thinking; my other half will be here at 11 am, I’m going to be too tired to talk to him and he can only stay an hour.
I got to the ward just before 11 a.m. on Tuesday, taken by two lovely porters. I had to wear a mask when going between wards and one of the porters picked one up for me, he gently placed it on my face but not before showing me its brand name ‘WINNER’. ‘That’s what you are’, he says. He makes me smile.
I get to my new ward and am given a private room (get in!) on the high observation unit which means 1 nurse to 4 patients and very regular observations.
I’m given a packet of custard creams as they feel I no longer need to be nil by mouth as I’ve not had a CSF leak for a few hours. It’s been 42 hours since I’ve eaten. At this point I have so much respect for those who observe Ramadan.
Food helps the pain relief work for a couple of days.
My nose is bulbous, packed with what the ENT surgeon called mini tampons to help it heal and the grafts to take hold. I lay 24/7 with a bolster of gauze and tape under my nose to catch the blood and any other leaks.
I’ve also got silicone things stitched into each nostril to stop my septum collapsing. They feel like guitar plectrums.
Day 3 and I’m allowed to sit above 30%. The catheter is also removed which means I’ve got to remember any feelings of wee are not dealt with – gutted. Healthcare assistant Tony is called in to help me with my first toilet visit. He was caring, brilliant, funny and I didn’t feel embarrassed at all but it felt weird standing up after so long. How does one walk again?
However… I can’t bend forward at all, which makes wiping after weeing and teeth cleaning, picking stuff up, moving up the bed, etc. very difficult – it’s amazing how often we bend our head – consider it for the next few minutes after reading this blog. I can’t sneeze, can’t strain, can’t lift stuff all in case of a CSF leak, for at least two months.
From now until the moment I am discharged all of my water intake and output is measured and tested to ensure I haven’t developed diabetes insipidus. Even if I have it can be treated with medication, or sometimes subsides after a few days, but they remain happy with my fluid intake and output throughout my stay. And I’ve only been told off a couple of times for peeing in the toilet and not in a pan.
So today has been epic; catheter removed, sitting up, going to the toilet eating full meals and talking with my other half briefly. I can’t phone my daughter at this stage as my eyes don’t yet focus, and when I talk my nose bleeds. I still need to be careful about that CSF leak happening.
We’re on the mend, yeah?
From here things get hard. Very hard.
I wake up in the middle of the night, maybe early hours of the morning, with the most epic pain across my eyebrow and the middle of my nose, it hurts behind my eyes I don’t know how to describe the sheer intensity of it. I mean I have had 5 day hangovers before and this just doesn’t compare. I’m still concerned about having the morphine because of being sick in ITU, and I can’t be sick as it puts pressure on my head, but I can have codeine and paracetamol every 4 hours up to a maximum of 8 tablets, but it’s not just every 4 hours – it gets complicated – if you imagine if I was to have 2 paracetamol at 8 a.m. I can’t then have my 9th and 10th tablet until 8 a.m. the next day and the pain doesn’t stop when I’m asleep in fact I’m not asleep for long because I’m classified as high observation, meaning they wake me up regularly to make sure everything is ok; with oxygen blood pressure temperature and they also ask you who the prime minister is, what the date is is and where I am – unlike me I don’t even have the energy to make up silly answers.
I can’t express in words the pain and it just wouldn’t subside for more than an hour. I was aware of my fists clenching with the distress. I can’t cry, I can’t think, I can’t shut my eyes, I can’t open my eyes, I can’t have the light on, I can’t bear any noise, I can’t walk – all I can do is just live with it. Perhaps it will be better tomorrow?
My overnight nurse says that it’s probably because I did so much the day before; you know sitting up and having a wee. Great!
It’s easy for me to write now that the day goes by but it was unbearable I have not experienced pain like it and I really don’t want to have to experience it again. I never want to put myself through this surgery again.
The next day brings equal pain in fact it’s been so hard because four hours between pain relief is a long time when the respite is down to about 20-30 minutes.
That night reaches fever pitch. Since surgery, my body temperature has felt quite high so all I wear is a baggy t-shirt and knickers all day. I bought a pretty nighty to go with my pretty dressing gown but I’m too hot. In the early hours of the morning as the pain pushed against my head like million fists pushing on my forehead, I led there thinking; this is the fourth tumour, the fourth time we’ve tried to deal with this disease, and there’s no guarantee it won’t come back again – that’s not me being negative, I’ve got a high mitotic rate – can I keep doing this? Why do I keep doing this? Do I want to keep doing this? My respite has been less than 2 years and in that two years my quality of life has never gone back to what I’d hoped I would be at 44.
Pre surgery, I slept for sometimes 15 hours a day and still had no energy, I can’t do even an eighth of the exercise I used to before these tumours started back in 2011, I can’t arrange anything face to face without planning the whole week around it because of the fatigue, I can’t do things spur of the moment. I always have a holiday with just my daughter every year and lately it’s been a case of a lovely location but not being able to do anything much together while there, I want to give her more than that. I’ve lost friends cus they don’t understand, people give up asking to do stuff because they think I’m being aloof or difficult. Is that a life to keep fighting for?
It was at that moment that I searched for a way out of the fog of the pain. I looked at the clock on the wall and it was another 5 hours until my next pain relief. I can’t do this. I decided I would find my way to the top of the building and jump. But a security guard would probably stop me because I was just wearing t-shirt and knickers I therefore had to put my dressing gown on but then I thought, what if the dressing gown acts as a parachute and I just end up hurting myself I’m going to be in more pain.
That stopped me as I didn’t want any more pain. I’ll wait 5 hours.
At 7am my pot of morning medication, along with the pain relief, is delivered by my lovely nurse, Gemma. I feel too sick to even take the tablets but I slowly make my way through a pot of about 10 types of medication. I can hear the breakfast trolley coming too. I don’t feel hungry. But it might speed up the pain relief working.
Weetabix with a dash of warm milk and loads of sugar please.
After I’ve swallowed my pain relief I tell my nurse what went through my mind overnight. I’m too dazed to know if she’s listening, but she is…
Everyone checks on me throughout the day, more than usual – including a lovely junior doctor called Som – to ask me about my suicidal thoughts the night previous. Reassuring me that I must remember I’ve had serious major surgery and that I am already doing incredibly well and that we will manage the pain. He also offers me access to plenty of immediate support if I would like it. I’m going to retry morphine mixed with a bit of squash, and an anti sickness drug, to help with the pain.
I think those words ‘you’ve been here before so no real biggie’ had stayed with me until Som came into the room and looked at me with his lovely dark eyes and stressed just how big this operation had been. That my body had been through so much and was still dealing with so much trying to heal from such a massive amount of work.
Later that day, my main surgeon, Kumar, comes round too and says the ENT surgeon will be round later to remove the packing from my nose to try and ease the pressure, which might be causing the pain. They all know I’ve not done well overnight and I know they’re all communicating to make this as easy as possible for me.You might wonder why they didn’t take the packing out earlier? Because it needs to be in to stop things falling out and to aid the healing.
I really do hope removing the packing might ease the pressure and thus some pain?
High on morphine, codeine and paracetamol the ENT surgeon calmly removes the packing from my nose. I was high, not him!
That was a rather unpleasant experience but I instantly feel less packed out, cleaner and dare I say it, some pressure has lifted.
The silicone guitar strummers will remain in place for a while longer to stop my nose doing a Daniella Westbrook. I actually can’t wait to see what the ‘plectrums’ look like.
High on morphine I make the ENT surgeon talk to me about Garden Rescue coming to do my garden next month. He said he’d like to be on telly. He’s not sure what, maybe, Location, Location, Location or Love It or List It but he’ll need to check with his wife. We decide on Ru Paul’s Drag Race and say our goodbyes. He says he’ll see me in two weeks to clean out my nose for me. Nice chap.
The morphine helps and I have not been sick.
It’s now Saturday evening, the pain doesn’t get as bad as it did and I’ve chosen a roast dinner for lunch tomorrow. I’m also going to have a go at washing my hair tomorrow as I have a chair in my wet room. I’m so excited.
Saturday night, 9pm. A porter comes up to take me for a post surgery CT scan. The late hour isn’t unusual. They clear the inpatient scans at night so that the outpatients don’t back up in the day. I’d been down for an MRI the night before.
When I return my nurse, Nancy, says… ‘Your surgeon phoned. He’s been trying to phone you all day. He’s going to call on the ward phone in half an hour’
That’ll be 11pm. I’ll stay awake. I’m not concerned. I know he works 24/7 and a half.
11pm goes by and I decide I’ll go to sleep. They’ll wake me when he calls.
At breakfast I ask my nurse if he called, ‘no, he’s going to pop in to see you this morning’.
I have breakfast and am still excited about washing my hair later, and… roast for lunch!
It’s 12:30 and I can hear cutlery. LUNCH.
The nurses coordinate their observations around food so there’s never chaos, so when my room door opens and it’s my nurse, Elaine, I’m a bit disappointed it’s not my roast.
She looks sheepish.
They better not have given my roast away.
‘Catherine, has your surgeon spoken to you?’
No, he was going to call last night but didn’t then was going to pop in this morning, but I’ve not seen him yet.
‘I’m afraid you’re nil by mouth, you shouldn’t have been given breakfast, I believe you’re having more surgery’
Utter fear strikes through me.
I’m literally just seeing some light
What surgery? What for? What’s happened?
‘I don’t know, Catherine. I’ve just been told to make you nil by mouth. Let me get the surgeon on the phone and find out’
Elaine was devastated at having to tell me like that.
I phoned my family. I didn’t know what to do.
Speaking with them briefly gave me my ‘sort this out’ head back and I whipped off an urgent email to my surgeon asking him to phone me immediately.
My roast is literally within touching distance.
The surgeon called…
‘The MRI from the other evening has shown a shadow that wasn’t there before.’
He thinks he can see tumour in the remaining pituitary gland, so while I’ve not yet healed they’d like to go back in and get it.
‘It might not be the disease but there’s a 5-10% chance that if it is, it could mean you have longer respite’. He says, the problem is there is no white paper on me, I grow this disease differently so not everything can be easily determined.
He said he can come in later today to do it, tomorrow or Tuesday even though he’s now on annual leave. I love how they’re so matter of fact.
It’s also mentioned that the risks are the same but a CSF leak might be even more likely. In a nutshell, I’d be back to where I was when I first came out of theatre on Monday night with an increased threat of a CSF leak.
My partner is on his way and we’ll call my daughter on facetime to discuss together when he arrives.
I tell the surgeon I’ll get back to him later today but that I definitely won’t have any surgery today and therefore can I have my lunch?
I raced down that corridor as fast as my legs could go without causing a nose bleed and got my roast!
A nurse later commented; ‘Catherine definitely doesn’t need to see a physio before she’s discharged, you should’ve seen her chasing her food around’. Haaaaa
I spoke with my family about what the surgeon said and told them, I can’t do it again. Not yet and certainly not for a small 5-10% chance of longer respite if part of that respite includes risks, such pain, fear and thoughts of jumping off a building.
I decline the surgery. I’m not starting again. My family 100% support my decision and that means so so much.
Two days later I can be discharged and I feel ready.
The hospital have been absolutely superb throughout, 100%. I’ve been in a few hospitals over the years with this, not just the surgeries, but radiotherapy, appointments, adrenal crisis’ and nowhere do I feel safer than Southmead Hospital.
I’m sent off with a bag of medication and my other half wheels me out in my newly hired wheelchair from The British Red Cross.
I arrive home and straight to bed.
I feel safe. I fear the pain and a CSF leak but I know I’m going home to real love and care from my other half, and hopefully soon I can see my daughter in real life too.
I can’t currently have visitors who haven’t had a negative COVID test and completely isolated afterwards, yes I am double vaxinated (spelt wrong deliberately), but given my ailments and how weak my body is I may not fight the virus very well if I caught it, plus… can’t cough as it’s too much pressure on my head!
Even without surgery, diarrhoea and vomiting puts me in hospital because of my Addison’s disease so this is why we’re having to be super careful despite the country opening back up.
There are a few cards from friends, family and clients and a little envelope from my daughter with a Spacemask in – OMG have you tried one of these? It’s long expired of its warmth but has been my eye mask to help me sleep in the day ever since. Something so small has been playing a huge part in my recovery.
I didn’t realise the masks had a ‘way up’ until I sent this photo to my daughter. The slit should be at the bottom of my nose, right? Whatever, the brain’s not quite working yet.
Now? Three weeks after surgery.
I still currently stay in bed around 23 hours a day and we’re fighting the pain every few hours. Sometimes it wins, some days I do. The pain is all across my brow, at the top of my nose and then goes behind my eyes and down the back of my head. I call it the ‘neanderthal’ as it’s so prominent on my brow line. The days it wins are the days I know I can never put myself through this again.
I try and walk up my street some days, that’s around 10 metres – bless me, but most days having a shower is all I can do.
My mind is starting to get bored but I can’t read or look at my phone for more than a few minutes at a time (you wouldn’t believe how long it’s taken me to write this) as it creates pain. A lovely, thoughtful friend bought me some Audible credits so I’m listening to a book and I wear Spacemasks every day as my daughter bought me some more.
I’ve got no sense of smell. It came back briefly but it’s gone again. It might return, but no biggie if not. You don’t need to smell chocolate to know it’s going to hit the spot.
So what’s next?
I’ve been told who my radiotherapist will be, she comes highly recommended by my 24/7 always working surgeon and I’ll be hearing from her in the next couple of months to go through the plan of action with how much radiation I can have. I had a big dose in 2014, which kept the shitbag at bay for a whole five years, but they’ve got to go careful this time as I had lots last time and it’s all a bit close to the bit in my brain that controls my sight and the risk here is I will go irreversibly blind.
From there, Chemo drugs will be discussed if needed.
The tumour will come back again, but we don’t know how long my respite will be. The most I have ever had is five years. I’d quite like at least ten.
And. I can’t wait to grow my business again.
I’ll no doubt be back on social media frequently again soon, but until that time keep up to date with me here, it’s going to be more business than brain tumours, promise > Join my newsletter community or contribute to my Less Stress Page here.
If you haven’t been where someone is going, or has been, don’t assume you know how they feel or what lies ahead. Ask them how they feel, ask questions, find out.
Nurses at Southmead included, Shannon, Gemma, Nancy, Mini, Millie and health care assistant, Sahar. Kumar and Warren were the surgeons. There were many many more involved and I wish I knew all their names.
Huge thanks to everyone who’s sent me good wishes and kept in touch. I can’t always reply as my eyes and energy won’t allow, I don’t take your kindness for granted, ever. Every message means so much. Thank you for sticking with me.
Another massive thank you to everyone who has donated to my Little Less Stress page. You’ve so far provided me with an LPA, wheelchair hire and a TV for my bedroom to stop me going mad – although in the TV will probably drive my other half mad as I’m watching too many home renovation shows and keep redesigning our house on the back of tissue and medicine boxes.
Much love, Catherine x