The plaster is still on

It has been a while since my last blog entry. There’s nothing sinister in this. In fact the reason is nothing. Absolutely nothing. I have done nothing at all in the last couple of weeks; I haven’t improved vastly, haven’t contributed anything, haven’t really achieved anything . All of which is boring enough for me to endure never mind for you to read about.

Seven weeks on from the surgery my days consist of sleeping, trying to accomplish something, however small – eating with a knife and fork, emptying the dishwasher (although I still can’t bend down to empty the bottom tray), washing myself, making the bed (which takes at least 10 minutes and is so exhausting that I immediately have to lay down on it again). Today is a classic example: it is now 1:45pm and my major accomplishment has been to get up, shower, dress, make the bed and eat breakfast.

Breakfast looks like this:

(Who said OCD?)

But I usually take it like this:

Just to feel the familiar shot glass in my hand.

Soon I will go for another sleep. I still can’t read nor listen to music or the radio, but sometimes I lay down on the sofa with the TV on. The afternoon schedules in the UK are mainly populated by detective series. I am pretty confused most of the time anyway but when I fall asleep in an Inspector Morse and wake up in a Midsomer Murders I am entirely bemused.

I was warned that it would takes months to heal and that chronic fatigue would be an issue but this is ridiculous. However as my friend Mandy pointed out, if I had broken my leg the cast would still be on. Mandy is right of course, but please don’t tell her.

My visitors are now more of a trickle than a tsunami and it is great to see them when I can. People’s kindness and baking skills know no bounds. Well no bounds except the waistband of my jeans which is straining against the various cakes I have consumed. Adrian and I have started our pre-wedding diet which should hopefully remove that extra bit of both of us that is down to Tarquin.

So to news of the remnants of Tarquin. Within 24 hours of my meeting with Mr G the JR administrators wrote to me confirming my next appointment with him – in September 2011. I will be seeing him lots before then but hey, at least I am in his diary. Four weeks later the admin team managed to send me the date of my next MRI – 1st November which has scuppered Adrian’s plans to take me away for a long weekend to celebrate my birthday. I can’t fly (imagine what flying does to your ankles and then apply that to your head) so we were just hoping to go away to Cornwall but will have to re-think now.

Still I am here and capable of complaining and for that I am grateful. Others may not be so grateful for the complaining. I feel as if I am a burden on the benevolence of others, that I contribute nothing positive to those around me and that is hard to take. So at the ripe old age of 29(!) I am learning the art of patience. It is a tough lesson to learn, especially for someone who usually lives their life at 100mph. But to quote Shakespeare (again):

“How poor are they that have not patience!
What wound did ever heal but by degrees?”


Results Day

So today I travel back to the JR to meet with Britain’s answer to Doogie Howser and hopefully learn the plan for my continuing treatment. As Adrian has to be in London, Mum takes me. My stomach turns over as the edifice hoves into view and my Nosocomephobia kicks in.

Mr G greets us and takes us into his room. We talk in general terms about how my recovery is going and I interrupt him to ask “could you tell me the histology please?” He is surprised and apologetic that no-one has informed me. This sets the pattern for the meeting. I won’t bore you with the details but will cut to the chase:

Good News: Tarquin is a Grade 1 tumour. This means I don’t have cancer anywhere else and although he will grow back without further treatment, he is slow growing. Fantastic!

Not so Good News: My treatment and recovery are going to take a long time. Much longer than we had imagined.

I know I probably had unrealistic expectations  of today’s meeting; I hoped he was going to say “right, let’s do your MRI today, get you up to Sheffield tomorrow and you can be back at work on Friday”.

However what he actually said was a series of ‘wait and see’, ‘I don’t know’, ‘it’s hard to tell’  and ‘that will take time’.

So what’s next? I need to wait six weeks for my MRI until the swelling has gone down and my brain has stopped bleeding (as this can occlude the MRI). After that they will send my scans to Sheffield and see whether they think they can treat me with the Gamma Knife. If not then we just wait for Tarquin to grow back and then either do more surgery (no!) or treat me at that point with the Gamma Knife.

I’m not keen on the idea of just waiting and seeing what will happen. Any headache or stumble could mean just that I’m a clumsy creature or it could be Tarquin on the warpath again. I have so many unanswered questions:

Will my sight come back? “I don’t know.”

When can I drive again? “Not for at least a year.”

When will the headaches stop and when will I be able to walk unaided? “I don’t know, it could take months.”

When can I return to work? “Not for at least 3 months and then only for a few hours a week.”

Can I fly? “You can fly, but don’t travel outside of a very few EU countries that have good private hospitals and a reciprocal healthcare arrangement. Make sure you have proper health insurance for cancer patients. On no account travel to North America.”

Can I come off the medication? “Stay on the epilepsy drugs for another 3 months, try to wean yourself off the painkillers.”

When will I be better? “You are 30 days post-op which is very early days. Just take time to rest and recuperate. We consider that neurological recovery takes 18 months. Don’t expect to resume normal life before then.”

What are we going to do about the rest of my tumour? “We’ll wait and see.”

Mum and I left fairly upbeat. I only have a small remainder of a primary tumour in my brain and I don’t have cancer anywhere else. And that is a very good thing. We decided to stop on the way home and have a lovely lunch to celebrate. But part of me did not feel celebratory.

The afternoon was spent fielding calls from friends and family and I just desperately wished I had something concrete to tell them. Repeating all the ‘don’t knows’ and ‘time will tells’ were exhausting. Throughout this process I have only had a few moments of feeling sorry for myself and yesterday afternoon was one of them, so if you called me – I’m sorry!

But my melancholy didn’t last long. I know I am incredibly lucky – I have had excellent treatment, wonderful support and the outcome will (eventually) be a good one. And to top it all my hair is growing back.  However, in amongst the new growth are three – THREE – grey hairs. Elsewhere my locks are glossy and titian but my new hair is like a badger’s bum. Tarquin – you suck.

The view from Sue

My dear friend Sue came over from her home in Germany to look after me for the weekend. She kindly wrote a blog post of her own about her experiences. Here it is:

To all of Justine’s friends who are scattered all over the globe, I wanted to reassure you all of her amazing progress. I understand exactly how you must feel the miles intensely at a time like this. So, I hope my report helps to allay any worries you may have had.  First up, please forgive me but there’s no way I can match the eloquence of our heroine or hero. However, in my own words, I just wanted to share with you, my impressions after the long weekend I’ve just spent at Adrian and Justine’s.

I know Justine was concerned about of all the possible changes that could occur after brain surgery. Let me reassure you, she has not turned into Justyna, speaking Pidgin English with a Chinese accent: she is 110% Justine again! Appearance-wise, (the importance of which should never be underestimated) Liz has performed a miracle with her hair – it looks as full and luscious as ever. She has learned to apply her own make up again, with extremely restricted vision. I saw her 14 days post op and you couldn’t tell she’d just had major surgery – she looked the same as ever, it was amazing!  As you probably know, she has unfortunately had to suffer the loss of sight in her right eye in the battle against Tarquin – but again, an outsider would never notice. Her right eye and eyelid move in perfect synchronization to the left one and it still looks full of life. So, no fear, those gorgeous, deep brown eyes are back in business! The medication appears to be keeping those pesky turns under control. Her speech and comments are exactly the same as before – there maybe the odd word she has to search for to complete a witty punch line, but she’s still a heck of a lot quicker than I’d be after 2 glasses of wine!

I’d have to scan every English dictionary I possess (after living abroad for 19 years – that’s a fair few) to find enough superlatives to express how amazing her recovery has been, up to now. As far as I can establish, it’s due to a combination of factors; beginning with her own positive, resolute determination to make a full recovery. She could not have had better professional care directly post-op than her Uncle Dave has given her. Her Mother has been indefatigable in her daily support – cooking like a trooper and keeping things in order, attending to details, however small they may seem. Her Dad and her entire extended family and circle of close friends (too numerous to mention) have been brilliant in coordinating efforts, ensuring she gets the care and attention she needs. And last but not least, Adrian’s constant love, support, care, patience and understanding have all been vital in achieving this fabulous recovery.

Naturally, we must not lose sight of the fact that she is only at the beginning of a long journey. She still has Tarquin’s autopsy and further treatment to go. She won’t be up to marathon-shopping trips or driving a car for a while, and there are many more (sometimes painful) steps to go before she can return to a “normal” lifestyle. But, the recovery so far has been so sensationally quick and positive, I, for one, believe she’s going to get there sometime soon.

Thanks, guys, for a terrific weekend – can’t wait to book my next flight!

(The German connection)

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 13th arrives and I know very little of the events of this fateful day. But I can recommend Adrian’s excellent blog post here    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, 6th 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.