A new normality

Nuala giving it socks at Miss Emily launch.

It's been taking a while to get used to my new normal since surgery. When you are at home all the time, you get cosseted into a false sense of being better than you are. Some of the things I've done this month keep reminding me that I am recuperating, at a better rate than I think sometimes, but still with a cost.

Poetry Divas: my gig essentials!

For instance in week 2, about the 6th August, I decided it would be a good idea to drive to Cavan to visit a good friend and colleague of mine - about an hour and a half of driving. Halfway into the journey my eyes started playing stalks with me, making me wish I'd waited perhaps another week: but I did do it and enjoyed the most wonderful afternoon tea at the Crover House Hotel, minutes from her home. This looks like a great place to stay in for a weekend away from it all, scenic lake, woodland and lots of walks - one for the future!

Afternoon tea at the Crover House Hotel

A few days later I enjoyed a whistle stop tour around the Ring of Gullion region with an artists' collective, ROGHA (Ring of Gullion Handcrafts and Art) which I thoroughly enjoyed, but also tested my tiredness limits. I was very enthused by the work on show, and the artists and handcrafts' people were really passionate about their own fields of interest, which rubbed off on us, their lucky audience.

Felting demonstration at ROGHA day out

Two weeks later I had a mini-holiday in Belfast with a friend, which consisted of an awful lot of talking, a huge deal of laughter and two (non-alcoholic!) late nights, but reminded me just how much I seemed to have lost when I was actually ill before the surgery - I'd gotten very 'cowish': quiet, insular and withdrawn (some of the symptoms that presage a pituitary tumour).

Sandwiched between those, was the wallpapering of feature walls in the family bedrooms, which was necessitated by the moving out of another offspring - middle son! - into his own independence. This means that the three left out of the sic, now have a room of their own, which of course they are delighted about.

My lovely bedroom wallpaper & a piece of felt art by Rachel Tinniswood

Somewhere along with all this I've been nursing a pinched nerve in the neck. I think I may have picked this up from the surgery, as I've since discovered that they bend your head right back, so as to get a good downward angle up your nose to the brain-base where the pituitary is located. I've been getting physio, and another MRI scan of the cervical spine reveals that there's a lot of disc degeneration - again, could have been related to lack of some hormones that help your body maintain its bone repair.

But in all this, I think there's an element of impatience with the recovery period - getting back to normal is all I want, but I don't have much patience with myself, as those who know me well, know only too well - so it could be said I've been getting in the way of my own wellness; although it's understandable when you've missed so much. There's an Irish expression that people have: not lying under an illness... as though it's a mortal sin to give in and admit you're unwell!

Anyway, a sign that things are coming to a new normal was that I was able to attend Nuala Ni's book launch last night, for her new and third novel, Miss Emily (nice review there), as well as performing with the Poetry Divas at Flying South, in Dublin 7, a wonderfully convivial artsy gathering of musicians, spoken word artists, comedy, drama, and whatever else you're having. They gather in the name of promoting the theme of mental health issues and I must say there was some really good music, stories and poetic material being aired: I was hugely impressed! I didn't do a lot of 'mingling' as I was trying to conserve energy, but I was happy with what I managed to achieve and I suppose you could say it was an affirmation of my own mental health.

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!"

Pituitary Problems 2: Surgery OR Out Damn Spot

Since the last post, there have been some developments. After a review MRI done in April, I got back to see the neurosurgeon, just last week, for his assessment. The drug I was prescribed back in December, Dostinex (cabergoline), which I take weekly, has done wonders for suppressing the prolactin that I was over-producing. Sadly, it has not had the effect of shrinking the tumour.

If anything, it's grown marginally - they are known to be slow-growing, so this in itself is not a major problem.

So, the tumour cannot be described as a prolactinoma; it's more likely to be a non-functioning tumour. Put simply, this means that it doesn't produce excess hormones, in and of itself. The raised prolactin levels actually demonstrate that it is the pituitary stalk producing prolactin  - think of it as a protest at being squished up out of the way by this rogue growth.

After mulling a few options over in the consultation, I decided to get it out. The surgeon offered the 21st of July as the nearest date, which I was happy to take. He says that it is fairly straightforward. It's called a transsphenoidal surgery, and basically he goes in just above my front teeth in a line back to the skull/brain base, breaking a small hole in the sphenoid bone, and using endoscopic techniques he'll go in and (hopefully) take it all out. I'll only be in hospital for a few days, and willl recover at home in about 2-6 weeks. Hopefully in time to make it back to work in September.

In myself, I'm seeing a gradual improvement, week on week. I have a bit more stamina, lasting the day and only feel whacked if I've overdone it - but so often I don't realise I've overdone it, until I've overdone it! But compared to my last visit to this blog, I can really see a difference - and the good weather recently has really helped too.

Yesterday after visiting the endocrinologist, he agreed that it was probably the best course of action to have it out, but warned that it was unlikely that I would regain any lost hormonal function. So I could well remain on cortisol (steroids) and growth hormone injections for the rest of my life.

But hey, it will be nice not to have this bump in my head, and it pressing on my sinuses, giving me headaches and vision problems and all the other problems; as well as having histology and pathology done on it to ensure there's no nasty surprises.

So roll on July 21st!

Pituitary Problems - or, how I learned to chillax about stuff

About last October 2014, I began to experience really debilitating fatigue. I couldn't understand it, I wasn't ill, or so I thought, just a long-standing sinus problem that wouldn't go away.

I had been feeling that same fatigue previously, in February 2014 – but I was doing a year-long post-graduate course in Education, working 19 hours a week in teaching and doing the usual mother stuff, so I put it down to that. I remember going to see a herbalist in Meath, who prescribed me a tonic, reckoning that my adrenal system needed some support. That tonic did seem to perk me up and I hobbled through the rest of the academic year, having some time off in August and picking myself up a bit.

At the same time, I noticed that I just couldn't stomach alcohol any more – I mean even a pint seemed to make me feel more than woozy, so I basically avoided drinking. I also seemed to start avoiding most social situations – Christmas, anything with friends: I just couldn't cope with anything beyond a working day.

Then finally my menstrual cycle ground to a halt in October. I waited until the end of November to see if it’d restart and when it didn't, I visited the doctor.

She sent me for blood tests to see what was lacking, with the mild warning that it could well be the onset of menopause. However, the tests revealed that I had a high prolactin level. She then requested an MRI scan to check out my pituitary, as she suspected I might have a pituitary adenoma.

She was right.

Just before Christmas, I was then referred on to a neuro-surgeon to see what he thought. He walked me through the MRI images: a 2cm tumour, and prescribed cabergoline, a dopamine agonist, to help suppress the prolactin, and possibly shrink the tumour. But he advised me to see an endocrinologist to see what hormones the pituitary was not making, as it is common for pituitary tumours to suppress normal pituitary function. He wasn't going in there, until the endocrinologist had established what function the pituitary did still have.

I now know more than is healthy to know about this tiny pea-sized master-gland located just beneath the brain, about 2 inches directly back from the bridge of the nose. It governs the release of ACTH, which tells your kidneys to make cortisol (and other hormones), as well as human growth hormone, which maintains normal cell function and has implications for the liver (hence the aversion to alcohol), as well as TSH, which stimulates the thyroid gland in the neck, not to mention all other hormones to do with sexual function and reproduction.

When these are governed normally by the pituitary, you don’t notice. You just have a normal quality of life. When these are suppressed, well, let’s say your quality of life ebbs away, drip by drip. It’s insidious and you really don’t notice it, except as a gradual withdrawal of living: fatigue, disinterest and just paring back to basic life functions. I hadn't been writing for a while, but at this stage I wasn't even interested. I had no interest in books either. I seemed to have a complete sense of humour failure too.

The special test that I needed came up towards the end of February. I underwent an Insulin Tolerance Test. In this, I came fasting to the hospital. They inserted a cannula to withdraw blood at regular intervals and then injected me with insulin. This is what is called a provocative test: basically the equivalent of inducing hypoglycaemia in a diabetic patient.

You don’t feel much discomfort, you just feel a little sweaty like you’re going to faint. The nice part is the Lucozade and biscuits you eat once you've achieved a low enough blood sugar count. The test also provokes the pituitary gland to release ACTH and growth hormone, a normal bodily response to an invoked stress. About a month later, in March 2015, I headed back to receive the results. I was still feeling very much under the weather, in fact, I was even worse than I had been before Christmas, but I now found out why.

My body wasn't releasing enough ACTH to stimulate normal cortisol production: basically I was only producing about a 1/3 of what I needed for normal daily function. So the endocrinologist said I needed to replace this with hydrocortisone. In other words, steroids. I have to take these every day, in the morning and early afternoon, to mimic the body’s normal pulses of these. If I am ill or vomiting, I have to double the dose. If I can’t keep them down, I would have to go to hospital to get an injection.

That was a shock in and of itself, but the next shock was to find out that I wasn't producing enough growth hormone. My numbers showed to be only 10% of what I should be producing. This hormone regulates cell function, liver function and without it, your cholesterol levels rise (something I hadn't got checked in yonks anyway), and your body fat rises. I had noticed my upper arms and tummy getting extra flab, but I had just put this down to getting older. It also effects your stamina and ability to exercise. Both of which had lately just had me flummoxed – I couldn't walk up the hill in Carlingford (a steep one, but a great one to get your heart going) any more, and just found it so hard to get from A-B in class – I’d come home wiped out from teaching most days, but lately I was wiped out after just driving the hour it took to get to work, never mind trying to get through a 5 hour class.

My eyesight doesn't seem to be as good as it used to be either. Sitting looking at a laptop or on my iPhone has a tendency to make my eyes feel sore after a while. This could be down to the tumour too, as where they develop they can press on the optic chasm: where the nerves from the eyeballs go back into the brain. As a tumour develops it can press on the nerves causing vision problems. I probably need to be assessed for this too.

The stage I am at now, is waiting to see. I am on growth hormone therapy and steroids – and could possibly remain on them for the rest of my life. The tumour itself has been scanned since, just last week, late April. And it doesn’t seem to be responding to the cabergoline, which I take every week – it’s more or less the same size. Whether it will need to be removed is something I’ll find out down the line: I've to wait and see how I stabilise on the additional drugs. Since beginning the extra drug therapy I am seeing minor improvements in stamina, but it doesn't take much to tire me out. I can manage a morning, but I get tired in the afternoon easily. Needless to say, I'm not at work – I haven’t been able to go, since the March visit to the endocrinologist.

I found that once I started the steroids I was all over the place, as I was when I started the growth hormone therapy. Four weeks in, things are starting to level off, but the advice I've been given is that it will take a long time to get back to normal – possibly six months to a year. I have a lovely app to help remind me to take everything, as there’s so much to take at different times I’d forget, if it was left up to me!

To be honest, this is the first time in a long while I've managed to type anything of substance. But it is a sign that something is coming back and at the very least the tumour I have is unlikely to be malignant. Reasons to be cheerful – 1, 2, 3.

Reviews of The Angels's Share

Slow, slow, slow!

A year later--okay over a year later--I have discovered some reviews of The Angels' Share online. I am quite excited by this, as these are some more than the first collection got: showing that it takes a terribly long time to get going in poetry-- as well as showing that I must be terribly idle to even be looking!

First, I found one in Australia: Tintean, a journal for the Australian Irish Heritage Network. They used to be a hard-copy journal but have gone over to an online version. The reviewer is quite kind, overall, but isn't keen on Pair Bond-- one of the poems that goes down a storm at readings--nor some of the Mallory poems--where I would have 'recycled' some of Mallory's quotes from his letters and journals, which I suppose might have made the poems seem stilted, as the language of the early 20th C is more formal than our 21st C brogues. Can't win 'em all, I guess.

Then there's a very warm one from Dublin Duchess --on an aside, her reading list is quite exhaustive and worth checking out. She loves Pair Bond, but thems the breaks, as they say.

 Mike Begnal's review on Todd Swift's Eyewear blog is very generous, I got the impression he really liked the book and his favourite towards the end, Modern Fantasia is one of my favourites too. 

And lastly there's one on Magma poetry's blog but alas, I don't know what it says yet, as there seems to a problem with the website--maybe it's just me!

By the way, if you're wondering what Pair Bond is all about, click on the link for a very short video of me and some Poetry Divas giving it what for (thanks to you-know-who for putting it together for me).

Awfully Brrr for May

Coldy, coldy coldy. Out weather here in Ireland is giving us much pause for thought, what with these unseasonable northerly winds. The garden outside was given its annual shearing about three weeks ago and has been behaving immaculately ever since.

My pinky clematis looks lovely, spread all over our neighbour's wall and all the other plants I put into a small raised bed are thriving - bar the bean plants. Is it the cold? Is it the rain? I don't know.

What I do know is that the peas I put beside them are thriving; already climbing up the string and bamboo wigwam I set up for them. But the beans are withering and looking decidedly peaky. I should have just stuck with the peas overall, perhaps.

In writing news, all is very quiet since the end of the Dundalk Book Festival back at the end of April - almost a month ago. I believe most events were well attended and we Poetry Divas helped to rock the Panama Cafe on the Square (hai). We had an interesting afternoon, with many readers and even a musical interlude. More on Michael Farry's blog.

A highlight for me was Noel McGee, doing an excerpt from a one-man play, I, Kavanagh. This is a brightly woven piece with excerpts from Kavanagh's work and work about his work. The audience loved it - what with Patrick Kavanagh being from out the road a bit - and I saw many audience members mumming the words of his poems along with the actor.

There were parts in it I remembered from Antoinette Quinn's Biography of Kavanagh, which by the way if you've never read it is a fantastic read and full of inspiration too. One to buy rather than borrow. "O he was a quare one..." Kavanagh's poetry is something I return to time and again, probably because of the local connection but also because of his way of talking about the land. When you're a country girl, like me, it's nice sometimes to be grounded by what you've come from.

Underground Competition

Ever spent any time on the tube?

Submissions are now open for the first Fire Hazard anthology, "Underground".

To mark the 150th anniversary of the opening of the world's first underground railway in London in 1863, Fire Hazard is compiling a print anthology of poetry dealing with experiences of underground railways and their impact (for better and worse) on the communities they serve around the world.

Themes could include (but are by no means limited to):

Construction of underground railways

History of the lines and the stations

The above-ground communities the underground serves

The experience of commuting / travelling underground

The art of the underground

People experienced on the underground

Subterranean geographies / cities

Mapping the underground

If you would like your work to be considered for this anthology, please send up to four poems and a brief biographical note to us at firehazardpoetry@gmail.com with the word "underground" in the subject title. The deadline for submissions is March 31st, 2013. All included poets will receive an electronic copy of the anthology, hardcopies of which will be available for purchase in early summer.

Turbulence Magazine subscription rates: single issue £2; annual subscription (four issues): £6 (UK rates - please email for international rates). Please send cheques / postal orders (payable to "A Fisher") to: A Fisher, 29 Finchley Close, Hull. HU8 0NU. 

Visit their website at http://turbulencepoetry.blogspot.com/