Archive for February, 2013

7 Finding the balance point.

February 16, 2013

7 Finding the balance point.
In the garden, the air is cool and calming. I listen to the birds sing as I drink my morning cup of tea. It feels so safe. I lean into its stillness. I am awash with tears. I can’t seem to stop. Chaotic thoughts collide angrily in my head. I’m full of what ifs?
I feel dizzy. My ear prickles and aches. I’ve woken up with another face ache flat headache.
Is this the Schwannoma making its presence felt? Is it sticking out its elbows and pushing at anything it comes across. Is it leaning up against the nerve running to the ear? What else is it pushing up against. Is this what it feels like when it’s growing? Is it swelling, invading and possessing? I topple into worse case speculation. What will it be like with a numb immobile face? Despite my glistening sunken pink orbs, I don’t currently frighten children or dogs, and I’m not an unpleasant sight. What will I look like with a numb immobile half face as well?

Clearly I’ve not found the balance point with this new episode in my life. I give myself a right talking too.
“It’s not the first time you’ve faced something potentially devastating and life changing,” I castigate myself. “Get a grip!”
I can’t stand the uncertainty. I’m not good at waiting. I sometimes think impatience is my worst impairment. Until I have the conversation with the brain surgeon I won’t know what comes next. But the waiting is pretty mind fucking.
Still I’m not dead yet and not likely to be in the near future. It’s no use worrying about what level of incapacity I may be left with after surgery. I won’t know till the time comes.
I draw closer to the rowan tree and stroke its cool bark. It’s not big enough to hug but I feel its stillness calming me. If I can focus on each day, each our, each minute as I meet them, perhaps I can get through this. Just for now, I am alive and kicking, even if I am a little sore and rather frightened.
Friends, my invitation to you is to take me to trees if you are in my neck of the woods. If you’re not, then go to trees and think of me. Spring is coming and I want to savor every unfolding, opening, reaching up to the light, every bud that flowers, leaf that opens and uncurls and allows the cool breeze to air kiss its surface. In this way, maybe I can find a place of balance and comfort in nature, the renewer.


6 6 Meeting the Schwannoma

February 15, 2013

6 Meeting the Schwannoma
The sun is out. It is beginning to smell like spring. The air is cool and the birds are singing. What a nice day!
Ms Wolf and I lean against a London Plane Tree in Queen’s Square Garden’s hard by the London Neurological Hospital. We’re looking innocent but secretly, we’re talking to the tree!
I’ve been feeling a bit beleaguered in recent days. I rest my head against the tree trunk and breathe. My feet are on the soft ground, the bark feels rough and dry against my cheek.
The world stops rocking. Everything that should be, stands still. In a growly voice, the tree sings to me, so I join in and Ms Wolf and I regale Queen’s square Gardens with a cheerful rendition of “Trees Grow Tall …” yep, it’s true . I sing to the trees!
In the little room with no windows, the doctor says the abnormality is a Schwannoma, an overgrowth of the neural sheath. It’s encasing the Trigeminal nerve and is quite large. It’s not malignant but if not moved will grow and lean on other nearby nerves causing problems in all kinds of nasty ways. “Bollocks,” I think, that means soddin’ brain surgery!”
Ms Wolf observes that presumably Mr Schwann discovered this particular phenomenon. The doctor confirms this and goes on to say that any nerve can get a Schwannoma, but they’ve only found one in my brain. A scan of the spine will reveal if any others exist.
Briefly, the doctor muses about a possible genetic cause. He’s led down that road by my mentioning that my twin brother is a bit deaf. The Professor is consulted and advises that it’s likely to be a singleton Schwannoma and probably not genetic at all. Twin bro is reprieved from an hour in a clanking can tube thingy.
The next step? There’ll be an appointment with the brain surgeon. I still have to have the extensive hearing and balance tests but I don’t have to do that next week. I will have to have a spinal scan and at some point they’ll take more bloods off me – I don’t know what for. And at the end of all this, I will have to have brain surgery.
“Bollocks” I mutter again.

AS we leave the room, Ms Wolf says aloud, “oh well maybe a bit of work with swans will be helpful.” Now the doctor must think we’re completely barking. She’s right though.
“Swans not spiders eh? Hmm,” I think, trailing after her, my mind full of soft swans down and serene graceful creatures swimming down the river. The Neurological hospital’s cafe is cheerfully called “The Spice of Life”. WE sit it in it and Ms Wolf does battle with the hospital appointment system whilst I tackle an elicit lemon and poppy seed muffin.
The appointment gate keeper says “Patients aren’t allowed to change their appointments.” We’re trying to move a rather exhausting sounding balance and hearing investigation from a busy day in my diary to some other day when I can afford to be hung upside down, pinched, poked and twiddled with until I don’t know which way up I am anymore! Ms Wolf is charmingly commanding, if not a little determinedly steely and the appointment is moved. Thank the goddess for Ms Wolf and her charming steel, I think, crumbling the last of the lemon and poppy seed muffin into my mouth. And thank the goddess for all my friends, stepping up to support me at this rather difficult time. Please form an orderly queue to volunteer for hospital appointments buddies. If it embarrasses you, I promise not to talk to trees (well not out loud at least).

5 The wonders of PALS

February 11, 2013

5 The wonders of PALS!
Morning comes and I dive deeper under the duvet. I don’t want to get up today! I’m thinking about having to untangle the confusion of appointments and specialists. Anxiety works overtime to make a mountain out of every innocently simple molehill, I think impatiently.

I’m on the lav when the phone rings. Snatching it up, I hear a reassuring voice asking for me. It’s someone from UCLH Patient Advisory and Liaison Service, responding to my garbled message of Friday afternoon.

She says she’s been doing a bit of digging. I’m amazed, but then remember I gave the answer-phone my hospital number when I rang.

The doctor who spoke to me on Tuesday left a message on the “system, she tells me”. HER job this morning is to talk to the relevant secretary, (she knows who this is) and get an early appointment for me.

The appointment on 19th is for hearing and balance tests. In the scheme of things, she says, it’s probably more important to get the appointment to discuss the scan’s findings.
“You don’t need to make any other phone calls,” she tells me, “I’ll do it and get back to you.

Momentarily, relief renders me weak, and I begin to cry.
“O for fuck’s sake!” I snarl at myself, “Get a grip!”

Someone who knows the system is sorting things out for me. I don’t have to attempt to coordinate my brain and gob to explain anything. Thank the Goddess!

Whoever invented the Patient, Advocacy and Liaison Service in UK Hospitals is a wonderful person! I tweet. Hurrah for UCLH PALS!

Anxiety drives rational thinking out of the window when people are anxious about health things. Even I, a bulshy assertive dyke-of-a-certain-age, find hospitals intimidating. I shouldn’t feel ashamed of tears of relief and gratitude, but I do. I shouldn’t feel ashamed that I haven’t been able to sort this out myself, but I do.

A little part of me, the overactive self-critic has far too high expectations of myself for my own good.
“Bog off, you arse!” I say to it. I’ve got things to do.
I’m just moaning!

4 Abolish the institute of marriage?

February 10, 2013

4 Abolish the institution of marriage?

On Radio 4’s Any Questions today, Julie Bindle welcomed gay marriage for the equality it now signified, and hoped that now all marriage would be abolished! If people wanted to form partnerships, everyone gay or straight should be able to form Civil Partnerships!
What a good idea! It seems heretic to say I am troubled by the notion of gay marriage. Don’t get me wrong, I felt a sense of pride when I heard the Equal Marriage Bill had passed it’s second reading, and with such a thumping majority too.
I am old enough to remember when there was barely any protection in law for LGBT people. Now there’s widespread legal protection. We’ve won, haven’t we?
Well yes, if equality to enter a patriarcle institution like marriage is what we strive for. But, hey what ever happen to smashing the patriarchy and turning our backs on hetro-normative aping practises? Why is a partnership between two people, irrespective of their sex, to be commended beyond the single state or the polyamorous partnerships that many of us aspire to or choose to live in?
As a terminally, stubbornly single, at-this-moment-in-time celibate dyke, why is my single state seen by so many as less desirable, somehow a failure and even a threat?
So good on everyone for getting this far with equal marriage, let’s finish the job and then abolish the institution of marriage altogether! “I’m just moaning!”

3 I’m just moaning

February 10, 2013

3 Im just moaning!
Sometimes, I think I inhabit a parallel world! I wander along, oblivious to major trends in thought and speech. I blame this woeful state of “off-trendiness” on the fact that I don’t have a telly, and am a Radio 4 obsessive.
So when I hear a succession of forty-something woman comedians of my acquaintance using the term “I’m just saying”, in the space of a few days, I am unaccountably irritated. I tish and pish like a right Tumbridge Wells habituĂ©, for it sounds so irritatingly bimboesque, if that isn’t itself an unforgivably sexist stereotype?
I know what irritates me about it! It’s defiantly defensive. I think if you’re going to be argumentative, do it with self belief! Don’t hide behind unnecessary aggression when you could use your brain to apply your devastating wit!

I’m thinking of adopting something similar by way of mocking my own grumpiness. I’m doing a lot of bellyaching right now. It’s not my usual personality default. So if I say, having grumbled for half an hour about something, “i’m just moaning”, you’ll take it in good heart, I hope will you?
So, “I’m just moaning, right!

2 Spider Tattoo

February 10, 2013

2 Spider tattoo
I try not to think about the trigeminal abnormality which is impertinently loitering somewhere between my jaw and base of scull. Doggedly, I go about my day.
I have been struck by unaccountable indecisiveness, unable to work out how to deal with getting the right hospital appointment. I don’t seem to be able to decide what to do! Irrationally, I imagine that the appointment I have secured isn’t going to be in the right clinic. I have no evidence for this belief, I am just doing anxiety.
I’m in a cafe on Thursday, when someone’s secretary rings to cancel and rearrange the follow up appointment made for 4 months time! I have the wits to extract the name of the secretary of the original consultant. Having done this, I am filled with doubt about whether this is actually helpful since the kind doctor on Tuesday evening said that a Neuro Surgeon would need to see me.
Anyway, I ring said secretary on Thursday afternoon and then on Friday afternoon, meeting only a cheerful answer phone message. My brain and tongue seem to have given up communicating. I burble something and put the phone down. “What’s the matter with me?”
Sensibly, I remember the Patient Advice and Liaison Service and ring them. They’re not in either. Well it is Friday afternoon, isn’t it? My tongue and brain waggle impotently at each other and I mutter something incoherent and put the phone down.
They’ll think I’m a complete nutter when they hear that, on Monday morning,” I think savagely.
Spiders have been dancing intermittently across my face, or so it feels. They seem to be taking different paths, as though making some kind of invisible tactile tattoo! Ha-ha! Tatoo, spiders dancing? Get it! Idiotically, I wonder what the finished secret design will be. Will it be an intricate criss-crossing of journeys, a mesh-like fine weave of tiny treads? If the spiders had stepped in coloured ink before they began their dance, what would that be like? What colour ink might be available? What coloured ink would I like them to use? Surely, since this is my fantasy, I can choose!
“Rainbow ink is too common and obvious,” I challenge. Let it be grades of greens, moving gracefully through to teals, turquoises and azure, ending up somewhere around the Perry-winkle blue urring towards a purple-blue. I like that!
Another retreat into whimsy. Where else is there to go?

1 Meeting the spider?

February 10, 2013

1 Meeting the spider?
Tuesday February 5, 2013:
The doctor from the Neurological Hospital rings to say the MRI scan found an abnormality on the trigeminal nerve. Bugger! That explains the face ache – I thought it was because I’m a miserable cow!

He says they will decide what to do with it but will probably do a biopsy to see just what the abnormality is. I’m not listening. I’m already panicking. He is being extremely nice to me. That makes me feel worse! I put the phone down, curl up on the sofa and howl.

Pulling myself together, I stumble back to the computer and set about googling “Trigeminal Abnormality” and am oddly comforted by what I find. It’s caused by something leaning on the nerve, an innocent swollen or floppy blood vessel, an innocent cyst or a rather more suspicious tumour. My mind is caught by one piece of information. One of the options for an abnormality appears to be called an “arachnoids cyst”. I imagine a fat little spider sitting at the base of the nerve, its legs dangling over the three branches of the nerve in a pleasingly symmetrical manner. My face gives a little tingle as though the critter is having a little dance. Maybe it is this spider that dances the wild fandango over one side of my face when I’m trying to sleep?

I don’t like the sound of the biopsy. Just where will they stick the needle? Eeek!

I don’t know what the next step is. I amuse myself in literary whimsical indulgences. I can prattle on amiably, entertainingly, bravely, but I don’t mind admitting that right now I need a hug, or a whisky, or both.

Bollocks! That’s what I say. As if I didn’t have enough to deal with, without an abnormal spidery thingy dingle-dangling around the place where the trigeminal nerve branches off and wanders around my face! Oh bum!