Friday 13th

A couple of days in bed dreaming of morphine. Some friends come to visit and visibly recoil at my appearance. I seem to spend all day begging for drugs only to be told “just wait half an hour”. Friday 13^th arrives and I know very little of the events of this fateful day. But I can recommend Adrian’s excellent blog post here https://tarquinchronicles.wordpress.com/2010/08/17/aftershocks/    Suffice to say I never want to put anyone through the trauma of watching me have a ‘turn’ again. I still have bruises 2 weeks on from the attempts to take blood. Having my stitches out was painful, but it meant I was able to wash my hair which, as the nurse put it, will do me more good than anything and indeed when we get home Uncle Dave washes my hair in the kitchen sink with baby shampoo and a Pyrex jug. Bliss. Friends have sent me scarves so I try and emulate Isadora Duncan with my silk squares.

Now it is just a question of resting, healing and waiting until my follow up appointment on Monday 6th September. At that appointment I will find out whether Tarquin is malignant or not, and also what my continuing treatment will be. I have so many questions: When will the pain stop? When can I drive? When can I fly? When can I come off the epilepsy drugs? When will I be me again?

Home Sweet Home

Monday morning and Mr G breezes in and tells me I can go home. At this point I haven’t got out of bed for more than 15 minutes, have not showered, cannot walk unaided nor feed myself. I can’t believe it. My phobia of the John Radcliffe is not only cured, I actually want to stay here. My nurse explains:

Nurse:  “As far as the surgeons are concerned you’re fixed. They have done what they needed to do and now they want to move on to the next. We know you need care to get better but you may improve quicker at home with your family to care for you, good nutrition and your own bed. Plus the longer you stay here the more likely you are to get an infection.”
Me: “Can I take morphine home with me?”
Nurse: “No. But you can have paracetamol.”

So my Mum arrives at 3pm and soon after (thank God) Liz and Frank arrive and between them they get me to the car and home.  Pain is now off the scale. And I am cold turkey on the morphine.

The morning after

Mr G comes to see me with a retinue of colleagues including the Dutch and Danish surgeons. He informs me that all went as well as possible and that with any luck I should be home by Wednesday. Later the Danish surgeon comes back to check on me and excitedly explains that she has just arrived from Denmark and that five surgeons worked on me and that her job was to “unravel my brain”. She tells me with great relish how they had to totally skin my head back to my shoulder and that she sewed up half the wound while Mr G sewed the other so I should see two different hands in the stitches. I know it is their day job and I am probably as matter of fact about my career, but I think her bedside manner could use some work.

24 hours on and I am a morphine addict. I have no clock in my room but can tell the time by my acute need for it. Sherlock Holmes was a laudanum addict and I can totally see the attraction. The pain relief is instant and lasts for about 90 minutes and then the last 30 minutes are bedlam. If I were to describe the pain I would say I have a severe headache inside my head, plus that sickening headache you get when you bang your head on a cupboard door, plus my skull aches where the sunroof is and my scar throbs like hell. Equally disturbing are the noises in my head. They warned me I would hear my brain move but the sounds are deafening at times; swishing, clicking, scraping and dripping. Add to this crystal clear aural hallucinations such as my Grandmother singing Cole Porter(a triggered memory) and a brass band playing Mama Mia (definitely not a memory), and sometimes I can’t hear the real world at all. Without the morphine the pain is amplified to a Spinal Tap-esque 11, with it I can cope with the dull roar of around a three.

My family visit me every day. Mum, DC, Uncle Dave, Dad, Carolyn and of course Adrian. They take it in turns to help me eat and drink. Adrian tends to come in the evening after work and the lovely tea trolley man brings us both tea at about 7pm. I am sure of all the fabulous dates we have had Adrian sitting on a hospital bed holding my hand and helping me sip tea through a straw is not in his top 10.

Operation Day – 6th August 2010

The nurse comes in at 6:30 to get me to shower ready for my operation. At 7am the anaesthetist Dr Y comes to visit and explains what will happen. He thinks that as I am “robust” I should cause him no problems at all and he looks forward to seeing me later. At 8am I am wheeled down to the operating theatre. Dr Y greets me and puts the needle in my hand, it smarts. He tells me that this is the most painful thing he will do to me – while I’m awake anyhow.

Dr Y: Do you want to continue?
Me: What if I say no?
Dr Y: Then I get a really long coffee break, so feel free!

The next thing I know a nurse is talking to me and I am in a different room. The clock says 1:35pm. Where did the last 5 hours go? She asks me the questions that will soon become familiar:

Nurse: What is your name, what is the date and who is the prime minister.
Me: Justine, 6^th August 2010, and I am not sure whether David Cameron is on holiday which would mean that the Deputy Prime Minister Nick Clegg is in charge. And by the way can you tell me whether Mr G used Product X, I believe I am in a randomised clinical trial?
Nurse: There’s nothing wrong with you.

Mr G comes and tells me that Tarquin was indeed calamari-like (not his exact words) and that he was able to remove 95% of the tumour. We don’t yet know if he is malignant. He also explains that at one point he had to make a decision about whether to be more aggressive in removing the tumour, knowing that it would cause permanent damage to my optic nerve. Considering the damage already done to it, he went ahead and as a result I am now permanently blind in my right eye. We had discussed this possibility before the surgery and I was prepared for this outcome. But still I feel a little sad. He then goes up to tell my parents who have been waiting together in the reception area.

At 2pm I am wheeled up to my room and my parents meet me. I can tell from their faces they are relieved I am alive but shocked by my appearance. Adrian arrives and takes a photo for posterity. I call it Brain Surgery Chic.

That night the charade begins; nurses wake me every 2 hours to give me my beloved morphine, check my blood pressure and temperature, ask me my name, the date and who is prime minister. I play along but eventually crack and say “Grand Duchess Anastasia Romanova, 1917, Lloyd George.” Nurse H just shakes her head and leaves.

Checking in – 5th August 2010

So as directed I phone the JR and they confirm my bed is ready. Adrian and Mum drive me to the hospital and we are all somewhat distracted during the journey. On arrival they tell me my bed is not actually ready at all but they will do their best to admit me. The receptionist then tries to find my records and asks me why I have come in to hospital. I try to explain (quietly) what the situation is and she tells me (loudly) she can’t find me on her system. Visions of the Little Britain sketch “Computer Says No” flash through my head. She then asks me how I knew to come in today so I show her my letter. She still looks puzzled and asks me to take a seat. Then she has a strident conversation with her colleague about the inadequacies of the system, her colleagues, my admission letter, the funding, all at the top of her voice in the open reception area where other patients and their families hang on her every word. This is not boding well, eventually they find a way around the system and I am taken to an open ward and sit on a chair next to a clearly ill patient who has just had surgery and we attempt to complete my admission.

My nurse’s name reminds me of the malted bread from Northern Ireland, but she is from Ghana and has limited English which means she has to repeat her questions twice and I have to repeat my answers three times. Then the lady next to us asks for a bedpan and the poor thing has to ‘perform’ whilst my interrogation takes place just inches away. Don’t hospital staff realise that whilst those flimsy curtains provide some visual privacy, everything else is entirely audible.

I meet with Mr G and he explains he may use some exprimental glue to seal my dura mater and gets me to sign a consent form. Eventually I am shown to my own room which is actually not bad, complete with en suite shower room and a lovely view of the graveyard (below). Dad and Carolyn arrive and Adrian and I say a quick goodbye. I hate long goodbyes anyway and there is so much I want to say but don’t even know where to begin. Dad and Carolyn visit for a while and Mum stays with me until bedtime (8pm). Then I have to do something I have never done before – take a pregnancy test. As I can’t see I have to ask a nurse to tell me the result (knowing the answer already). I call Adrian to inform him we are not pregnant and lay down and try to sleep.

I’m back – sort of

Hello!  It’s been a while.

Tarquin has kept me rather busy of late. I will blog about my experiences and about my (slow) recovery but for now I just wanted to thank everyone for their kindness, thank the surgeons for their skill and thank my family for their unending devotion and care.

The surgery was successful in that 95% of Tarquin has been removed, so he has gone from a golf ball to a marble. We hope that Sheffield can deal with the remainder. However I have a shaved, weird shaped head, have permanently lost the sight in my right eye and have developed (hopefully short term) epilepsy which has frightened everyone to death. It’s not so bad for me as I ‘check out’ during the seizures, but I am sure to anyone who has witnessed one, they are hellish scary. Still at least I got to ride in my very first ambulance with some pretty hunky paramedics.

More to come soon.

Aftershocks

What a week it’s been. Justine has been steadily improving, Uncle Dave has been angel and one of Justine’s greatest wishes came true. The main theme of the week seems to have been movement, improving movement as Justine gets more steady on her feet, lack of movement (closely monitored by Juliet) and a couple of incidents of unwanted movement.

When Just came home last week she was my ‘Funny Frankenstein’ (apologies to Cole Porter), her looks were not so much laughable but, in the interest of public decency, they were un-photographable! As well as being a sight for sore eyes she was very sore, I can testify to that based on the number of times I was woken during those first few nights with demands for more pain relief. Fortunately those demands have become fewer and less frequent. So on Thursday evening I was looking forward to good night’s sleep and a lie-in as I was working from home on Friday.

At around 1 am on Friday morning my blissful sleep was disturbed by the alarming sound of retching beside me, the thought of being chundered on had me awake and alert in a flash. I reached for the light switch and turned around. The sound changed to a rasping, gurgling sound…a Cappuccino  I thought, how lovely. I was completely unprepared for what happened next and the sight of one’s beloved shaking uncontrollably, her body and face contorted with uncontrolled muscle spasms, eyes rolling wildly and pulling faces only her mother could love is not one I recommend.

The technical term is seizure but after much debate Justine and I have decided to use the quaint colloquialism ‘turn’. Anyway after a couple of minutes she’d had her turn, she lay her head on her pillow and continued sleeping unaware of the terror I had just experienced. Well reader having been woken in such a fashion I’m sorry to say I was not performing at my best, I remembered that the leaflet I’d read prior to the operation mentioned seizures and ambulances so I was roused from my bed and went to check what I should do next. There she was shaking uncontrollably and foaming at the mouth like a rabid dog – run away!

I called NHS Direct for advice:

NHS Direct Advisor: ‘Is she breathing?’ – Of course not, that’s why I thought it would be a good idea to spend 20 minutes in a queue at 1 am to talk to you…

I get passed on to the NHS Direct Nurse: ‘Is she breathing?’ See my previous answer…I obviously need to work on developing an idiot filter for the phone system so normal people don’t get asked such moronic questions.

NHS Direct Nurse: ‘Is she responding to touch?’ Doh!…maybe I won’t get filtered out after all. I trudge upstairs to test, her eyes open, she looks at me and goes back to sleep.

NHS Direct call the ambulance and pass me on to the ambulance controller and I am not giving any prizes for guessing what he asked! Now he wants me to time her breathing at which point Justine wakes up and I have to explain why I’m talking to strangers on the phone at 1.25 am.

By 4.30 am we are back in bed. We have been visited by a quick response paramedic and an ambulance, Justine and Uncle Dave have travelled to the John Radcliffe in the ambulance and I followed on with my old cock Linnet. Justine has been assessed by the emergency room doctors, they’ve consulted with the neurosurgeons and they have come to the startling conclusion that she’s had a fit! The neurosurgeon knows a magic pill that will help, casualty don’t have it so we can we see our doctor tomorrow and ask him for it. Oh and you can go home, nothing to worry about.

Juliet arrives about 9am and we brief her on the evening’s adventure. Justine had an appointment with her doctor to have the stitches removed so we just need the magic pills added to the list. Justine and Juliet wander upstairs for mother and daughter bath time and I dial in to a 2 hour conference call (what a glamorous life I lead!). Ten minutes into an esoteric discussion on the finer points of business requirements the fabric of existence is shattered by the blood curdling scream of a million banshees on day release from the darkest recesses of Hades aka my future mother in law.  Justine had her second (and thankfully, so far, last) turn in the bath.

The ensuing trip to the doctors was an all hands affair as none of us was prepared to step aside. Dr H prescribed the magic pills but not before offering the JRH some constructive advice on their discharge procedures and their apothecarial competence. We left his surgery a much happier bunch than we entered. Top marks to Dr H.

I didn’t do much work on Friday but my employers have been very good about allowing me to be flexible with my hours and my colleagues have been very supportive. As I probably shouldn’t name them I will use an impenetrable geek’s code and say thank you HAL for all your support and understanding during this time.

We passed a largely uneventful weekend in the company of close friends and family. Mandy kindly volunteering to stay with Just to allow me some sleep and Uncle Dave a well deserved break. On Sunday Juliet and DC arrived with lunch and I escaped with DC to the pub. We returned to enjoy a lovely lunch after which Peter and Carolyn arrived. We all sat around the same table and Justine realised one of her dreams as her Mum and Dad sat around the same table with her for the first time in 30 years.

Now the stitches are out, Justine has been able to wash what is left of her hair. She is on magic pills to stop the twitching (the down side is we won’t save on electricity, I had asked Juliet to throw the washing in the bath with Justine if she had another turn but Juliet just scowled) and for those of you who, like Juliet, are worried by the lack of movement, Syrup of Figs does work!

T+24; OD+4 The Homecoming

I must be mad or dreaming, that title proves what many have suspected over the years, that I talk utter rot! Well that may be so but on this occasion the almost unbelievable has happened, only four days after undergoing major brain surgery (is there any other type of brain surgery?) Justine is home!

I was standing at Paddington station last evening on my way back when I got a call from DC to tell me that Juliet was on her way back from the hospital with Justine. I’d received a message earlier in the day that this was a possibility but despite several later attempts to make contact I could not get get confirmation. So it wasn’t a complete surprise but very pleasant none the less.

I met DC and Uncle Dave (DH) in the pub (their idea!) and then we went back to DC’s where Juliet was looking after Justine and cooking a sumptuous feast. Just can’t manage to open her mouth wide or chew very hard as yet, her jaw is very painful on the side they operated, her head is still swollen and the bruising has taken on a bright yellow hue which contrasts beautifully with the Action Man (GI Joe for those reading in American) scar across her head. In short she looks fabulous, she doesn’t think so but we do, without admitting it to each other I know that we had each contemplated scenarios where things had not gone as well as they have. So for her to be back with us just the way she was, is a prayer (well hundreds) answered.

I say the way she was…Just has been talking since Thursday and after the anaesthetic wore off her speech has been completely normal, her vocabulary has returned and she is no longer struggling to find words as she had been a few days ago. On Saturday she was allowed out of bed and sat up for a while. She also staggered to the bathroom in her room with assistance, by Sunday that assistance had reduced to little more than holding her hand for balance as she shuffled across the floor. She gets tired easily and I have had to remind her just how serious this whole episode has been when she gets frustrated with her ‘slow’ recovery.

There is one thing that has changed, the sight in her right eye has been lost completely. She didn’t have much sight in the eye anyway thanks to tarquin and the surgeons realised that the damage to the nerve was irreparable, so they decided to take a more aggressive approach with tarquin. It seems like a huge sacrifice to me but Just had become accustomed to only having one half decent eye and so we’ll settle for this as a result! In fact now that the right eye is doing nothing at all, she tells me it has made it easier to see with her myopic left eye.

After our feast last night, we all escorted Justine to my car and fussed over her as she reclined in the passenger seat in a cotton nightie, white dressing gown and blue slippers (no heels), oh and happily no surgical stockings. I drove her home when DH and I helped her upstairs to bed. DH has been staying with us since he flew in from Canada on Thursday to be close by and he will be providing most of the day care during his stay. A big thank you to the lovely Uncle Dave.

Justine slept well and though she didn’t feel that she was ready to leave hospital, I think she was happy to be home. I know the house and the world felt much more ordered for me last night knowing she was back home with us.

T+21 Post Operation Dagger

The two words are neither Pinot nor Grigio today, no the words for today are Calamari and stockings.

Calamari, so I’m told on good authority, is a fair approximation to the consistency of Tarquin. Strange really because I’ve heard of Roman Emperors marrying their horses but this is the first time I’ve ever been aware that one of the living gods of the ancient world has been likened to seafood. ‘The Rise and Fall of the Roman Empire’ will never again have the same mystique.

Still Calamari was what we wanted and so I’ll be forever grateful for that minor disturbance to my slightly strange reading habits – probably best to go buy the August edition of White Dwarf!

I almost forgot about stockings (not like me at all!). Apparently the NHS standard issue compression stockings don’t match any of the shoes or bags in the wardrobe and they are certainly not for the fashion conscious. I thought I was being helpful when I observed that they reminded me of Norah Batty and her wrinkled stockings however, it appears there’s enough hot water for both the Calamari and me to be in!!!

So we now have a niche market for high fashion compression stockings to go on sale at all good operating theatres and airports. All that is left is to design and manufacture a range of Gold Lamé, Fish Net and Seamed compression stockings. Imagine the sales pitch:

‘Now Justine, you must wear stockings for surgery, you can have these ghastly hideous free NHS ones that quite honestly do no one any favours or, for a very reasonable upgrade fee, you can have your choice of the latest line in designer surgical lingerie…’

Aside from the important culinary and fashion matters which we discussed at length, I can hardly believe the first thing Justine asked me when she saw me was ‘How was your day? What happened in your meeting?’ Five hours with a team of surgeons poking around in her head and she wanted to know about my day. Is it any wonder that I and so many others love this lady as much as we do?

She’d been right about me going to work, it kept my mind partly occupied, stopped me becoming a complete nervous wreck and best of all it gave us something normal to talk about, a pleasant change from Tarquin, the mechanics of major surgery and the routine of hospital life.

So life is returning to normal. If only for the time we sit together in hospital and discuss the mundane or even sit in silent companionship. Normal is a long way off but Justine has started her journey of recovery and we have both had renewed glimpses of our future together and it is a wonderful feeling.

T+21 13.50 Operation Dagger Phase 2 Completed

Fantastic News! I am pleased to be able to report that Mr G has completed his part of Operation Dagger. Tarquin is now a shadow of his former self (about 5% left) and our heroine is awake in recovery.

I look forward to reporting on her first impressions of the (almost) post Tarquin era!

Before then a quick moment of self indulgence to express my thanks for all the wonderful wishes we have received and prayers that have been said. – Thank you from the trusty sidekick, Adrian.