Sunday, August 02, 2015

Getting Rid of an Annoying Tumour

I really wasn't quite prepared for the white-knuckle ride that surgery for my pituitary tumour turned into.

I rocked up to the hospital on Wednesday the 22nd July, in the evening armed with a book, a suitcase, some vague notion of what was about to happen and the even vaguer hope that it would go well and I'd be home by Friday or Saturday by the latest. I signed the consent sheet with the surgeon that evening and he asked for my input:I kept it witty and short. Denial really is a river in Eygpt.

In fact I'd spent the previous week totally not wanting to think about it. So much so, that my husband thought it would be a good distraction to head to Carlingford, hire two bikes and cycle the Greenway, a flat, scenic 7k cycle/walkway between Carlingford and Omeath, which follows along the foreshore of Carlingford Lough.

I didn't even make it five minutes out of the hire-shop, when I pulled on the brakes - which didn't seem to respond. And then responded only too well, flinging me over the handlebars onto the palms of my hands & my face - right in front of a church congregation coming out of 12am mass. Bizarrely, a passing ambulance stopped to see what I had done, and helped me. I was badly shook, but nothing major broken, as a later x-rays showed, apart from my nose, and my dignity.

That gave me something else to focus on, so that when it came to Thursday morning, at 11am I was seated in the surgery area, with my lovely gown, hat and groovy slipper covers on & staff were still asking me what happened and looking doubtfully at me as I replied (I'm sure some were convinced my husband was a wife-beater). It helped pass the time as I watched everyone else being walked or wheeled into surgery - I was the last one to go to my allotted area.

I was delighted when I came around in Recovery, although that didn't last long, as I discovered that my bladder was working way overtime: there are probably two reasons for this. One is that I had to have steroid cover during the operation, as my own ability to produce these is currently impaired; the other is that poking around in the pituitary gland tends to 'upset' it a little, causing it to stop producing the hormone that regulates the kidneys in urine production. Between the two, and the IV drip in my arm to flush out the anaesthesia, a whole lotta liquids needed to come out.

Suffice it to say, that I spent the time in Recovery (and indeed the next three days) either thinking about wee, wanting to wee, trying to wee, or trying not to wee. The Game of Thrones theme tune came to mind a few times, as they kept wheeling in the commode for me, & I christened myself Queen of Thrones. They snuck in my husband for a few seconds so that he could see I was okay. Apparently I told him that I was "Slur, slur, slur, slur, slur". He couldn't understand a word, as my nose was packed with bandages, along with a rather fetching nose trumpet.
3 Hours Post-Op - bruise from bike accident on far eye - spot the nose trumpet!
"Make sure you take my good side, darling!"
They eventually moved me on to the High Dependency Unit, Thursday evening. The fluttering, wailing noise of the all the wards' alarms on the heart-rate and respiratory monitors haunts me still. I was still looking for the commode on a regular basis, so much so that they gave up and left it beside me. I was feeling alright, but very 'high' - again this is because of the amount of steroids they pumped into me. Normally my daily replacement dose is 15mg spread across the day. On the day (& the day after) of surgery I had 300mg pumped into me across each entire day - almost 30 times what I normally would take, so I could not sleep that night, nor the following. Rocket fuel - but I really wouldn't recommend it.

I had surprisingly little pain, apart from a dull back-of-head headache, which I now realise was related to the frequent urination. I had the classic symptoms of Diabetes Insipidus: headache, raging thirst, frequent urination. Luckily this has completely stopped now, but it did take a while to get the staff to recognise what was wrong. Because the staff thought my headache was related to the surgery they pumped me full of all the drugs they could find: morphine and all its many sisters, cousins and half-related hybrids - and this meant when my poor husband came to see me on the Friday I was having morphine delusions of a most horrific kind. And as for when the surgeon came to report his findings - I am really hoping that they see this sort of thing all the time, and that he won't hold my sobbing against me. From my POV, it was not a very civilised way to hear and process the news about what he'd found in surgery.

I was glad to move back to the actual day ward by Friday lunchtime. It meant getting away from the monitors and the bustle, back to a room of one other person, and being able to rest, or so I thought.
24 hrs Post Op - nose swollen, bruises starting to show.
"Get your fresh hell here!"
My roomie was lovely, a similar age, similar interests, so we were able to prop each other up, metaphorically. She'd had surgery to remove a spinal disc and was in a great deal of pain. I was still unable to sleep properly at night, so the following day, Saturday,  my consultant recommended valium for bedtime and desmopressin to stop the overproductive kidneys. Both helped to some degree, but I kept on having small fits of shivering and bad headaches only relieved by an ice-pack that I found in the fridge in our room. However, nothing prepared me for Sunday morning.

For four hours I shook, and wept uncontrollably and ended up having to sit in a cool shower to get rid of the sensation that my skin and head were literally burning up. I felt like a hedge-witch in olden times being subjected to torture by the village elders. The nurse who oversaw me had such compassion and just the right amount of black humour, and is literally an angel - funnily enough, her name is Angela. I am so glad this happened in the company of a woman, because I honestly think my poor husband would have run away never to be seen again, had this happened at home with him. I think that this episode was down to the hormonal flood released from an angry and irritated pituitary gland, post surgery. All I know is that I never, ever, want to have to go through it again. I really thought I was going to end up in a psych ward.

As things normalised across Sunday and into Monday, I was able to contemplate leaving. Going home was a nightmare, in that I couldn't actually cope with the rapid onslaught of traffic from my passenger seat. I had to close my eyes to cope with the journey - a blindfold might have been a better bet, in hindsight. A journey that ought to have taken an hour was extended, by an incident that happened on the M1 home and involved a 45 min detour - bottom line is that I got home, and was put to bed in a darkened room. I have never, ever, ever, been so glad to lie on the mattress that is mine and just revel in its comforting, soft, familiarity. I now have a passionate hatred for hospital mattresses.

1 week Post Op - bruises well developed under eyes & around mouth.
"Hmm, think I need an eyebrow trim."
So: the tumour itself. Well, I'll paraphrase the surgeon: the tumour was located between the two spheres of the pituitary, the anterior and posterior pituitary; it had a clear, liquid centre, making it likely to be a Rathke's Cleft Cyst, or possibly a true adenoma. According to the literature, this is really rare, and is likely to have been there since I was a twinkle in my mother's eye. Pending an MRI at the end of September, that's as much as can be known, The MRI then will show if all of it was got - and if it is a Rathke's Cleft Cyst it will not recur, which will be good!

As of today Sunday, 2nd August, I am recovering slowly and surely. Each day brings different things. For instance, yesterday I really enjoyed listening to music in a way I simply haven't felt in well over a year - music usually makes me happy and want to dance. That's back. My sense of humour had disappeared: that's back. My quick-wittedness and ability to make black jokes: that's back! Visual focus and the ability to sustain it: that's back! My gratitude to everyone and everything that has helped really knows no bounds - but I shall have to write another day about that and the tests that need doing in the future, writing this has been quite tiring - I still tire very easily, but I'm pushing myself a little every day as much as seems sensible. I'm just delighted that this part is done and behind me.

So, I just feel really, really lucky. Watch out world: Babs is back!
Today, Sunday Aug 2nd Bruises beginning to fade.
"Ah, that's better!"


Anonymous said...

Just catching up with your blog... Best of luck with it all - it's a familiar story I can empathise with. My partner has had her pituitary removed - twice. Unfortunately, her tumour grew back. Fortunately, that was about twenty years ago and everything's been fine since. She takes growth hormone injections and thyroid tablets but only hydrocortisone in physical stress situations. They do scans now and again just to check everything's OK. She's just had her hip replaced - we were pretty worried, as you can imagine, hoping they got the steroids right, but they did and everything was fine. Life goes on!

My partner says make sure they keep an eye on your cholesterol level over time as it can mess with it.

Unknown said...

Wow Sackerson, it's brilliant to hear from someone with direct experience of it that's had much longer in dealing with it & the aftermath. It's affirming as you do need to know that life goes on & you guys show that it does. Thanks so much for dropping by & leaving word. & yes, I will check out the cholesterol levels as soon as! Cheers!