On a happier note…

So March turned into April which turned into May – the month of our wedding. I was still struggling with my recovery but was determined that everything would go smoothly. It was to be a small wedding, just 40 of our closest family and friends to celebrate our special day. On the Monday I woke up with a strange sensation on the right side of my face. Since I was a child I have suffered with recurring shingles on my face but hadn’t had an outbreak for about 4 years.  I looked in the mirror and the whole of my right side was red and sore. Cue emergency phone call to the wonderful Dr H and by lunchtime I am stuffing anti-virals into me like a matelot on shore leave. Hopefully by Saturday it will have cleared up enough for Liz to plaster makeup over the worst of the blisters and send me down the aisle. Maybe it is just God’s way of telling me to wear a veil.

So Friday comes around and with a face full of scabs we head off down to the Cotswolds. On arrival at the hotel we are told our room has been changed as someone booked our room in January. Having booked our room (and our wedding) last September I have my one and only (so far) Bridezilla moment. Once the poor girl had composed herself we retire to our (correct) room and open a bottle of vintage champagne and share it with my dear friends John & Iris who had come over from Ireland. After a wonderful meal with them we climb into bed tired but excited. The next morning I am awoken by a phone call from Frank. Liz is very ill and has been in hospital most of the night. He will still be coming to the wedding to do the photography, and will stand in as hairdresser but Liz can’t make it. I am so sad, not just because now the blind woman is in charge of her own makeup but because my Auntie Lizzie won’t be there. I want her there much more as my Aunt than my makeup artist and I know she has bought a fab new outfit. She must feel awful. At breakfast I tell Iris who suggests we just pool our resources and have a go ourselves.

And that’s what we did. Adrian and I go to the little chemist in the high street and buy all the makeup we can find. The shop is rather old fashioned but between the frosted blue eye shadow and the Coffee Shimmer lipstick we find what we need.

Back at the hotel Iris and I tip our makeup bags into the middle of the bed and hope for the best. Frank arrives and starts on my bridesmaid Georgie’s hair – long dark curls – gorgeous, while Iris, Nicky and I try with the slap. Nicky is somehow put in charge of the false eyelashes. After attaching them to me upside-down giving me the look of a Jersey cow with depression, she admits she has never done this before. At that point I order a bottle of champagne and we start again.

In amongst all this Adrian is trying to getting ready and Frank does an amazing job of our hair and the photography and keeping Adrian sane. I told him he just needs to learn how to do flower arranging and he’s a one-man wedding!

From our room we can see everyone arrive in their finery and soon it is time for us to meet with the registrars who are absolutely wonderful. We prove we are neither illegal nor insane (one easier than the other) and the band strikes up “Someone to Watch over Me” which is our cue. We walk towards the chapel door, enter, and see 38 heads turn towards us and with that all 40 of us start to cry.

It was a beautiful service, very poignant, but with some lighter moments too. There were terrific readings by Al from ‘Les Misérables’ and Katie who performed a witty poem which had everyone laughing. The hardest part for us was the vows. We had deliberately not chosen the “in sickness and in health/til death do us part” bit for obvious reasons, but we hadn’t appreciated how difficult the replacement vows would be.

“I promise to care for you with love and friendship and to support and comfort you through good times and through troubled times. I promise to care for you with love and patience, to respect and cherish you and to be faithful always. These promises I make to you for the rest of my life.”

As I said the last line Adrian looked at me and we both had exactly the same thought “however long that is”.

At that point we had to take a break and the registrar handed out tissues, Pauline shouted from the back “Have you got one for me?” The service resumed and we were pronounced husband and wife.After the service we had drinks in the garden and went in to dinner. The six tables were named after the places we went for our first six dates. I joke that as Adrian proposed after five weeks I only really got six dates. Instead of having a top table, Adrian and I moved around, eating one course with each table so that we could spend time with the people we love most in the world. After that there was much jollity, drinking, singing, games and everyone seemed to have a thoroughly good evening.  I shall draw a veil over some of the proceedings to protect the guilty. You know who you are.

The next day we headed off on honeymoon to the Caribbean where we spent two idyllic weeks together.

And now it is August and Mr & Mrs Grace are home and real life is the order of the day. I have good days and bad days, days when I can’t get my head off the pillow and days when I feel indestructible and the ‘old’ me again.

My next appointment with the neurosurgeon is in September when hopefully I will understand yet more about what is happening to me and what will happen in the future. I try and remain hopeful and positive but on occasion I fail. When I fall over or mess up my words or forget something simple or drift off in the middle of a conversation I know that Tarquin is still with me, still living, possibly still growing. And there is almost nothing I can do about it. But whatever the future brings, I know I have the love and support of the most wonderful man, one who has lived his vows long before he said them.

A painful but necessary update

Forgive me reader. It has been many weeks since my last blog entry. I have been struggling with recovery and also struggling with revisiting this part of my journey in order to write coherently about it.

On re-reading my last entry I see that I was so full of hope that the Gamma Knife surgery would bring an end to Tarquin. But he is a stronger opponent than I gave him credit. So I shall set out the facts as they happened, pieced together from my recollection and that of those who were with me.

We trek up the M1 to Sheffield and I am swiftly admitted and taken downstairs to be fitted with the head frame that will hold me in place during the treatment. As I go in a lady in her 70s comes out complete with head frame and tells me not to worry, it doesn’t hurt at all. I am bolstered by this kindness.

In the room Mr K and his team are ready and they begin to attach the frame. To do this  they inject me with a local anaesthetic and then drill tiny holes into my skull through which they tighten screws by hand with a screwdriver. Surreal. Two at the base of my head at the back and two on my forehead. The ones at the back go in pretty easily. I can feel the screw threads biting on my skull but there is no pain. The one on my left forehead causes discomfort but no real pain but the one above my right eye, the side where I had my craniotomy, causes me such pain and discomfort that I have a grand-mal seizure. On recovery even the nurse looks pale, but the doctors carry on screwing the frame to my head through my blood-curdling screams.

I am wheeled up to my room where Mum, Dave and Adrian are waiting for me. But I am not me. I can’t talk properly nor focus on their faces. My nurse explains I was ‘taken poorly’ during the frame fitting and puts me on the bed to wait. I am given painkillers, sedatives, steroids and an anti-depressant. Adrian acts as photographer.

The latest in Brain Surgery Chic

Soon they return to take me to the Gamma Knife Surgery Suite where a radiographer will deliver many hundreds of doses of gamma radiation through my brain to the centre of Tarquin. I am clamped into the machine, my head suspended by the frame. My head feels so heavy just hanging from two screws in my forehead but thankfully the drugs help me, as does the soothing music. Although I can never listen to any of those songs ever again. Over 200 rods are attached to the head frame, each one delivering a measured dose of radiation before the machine moves me by mere millimetres to deliver the next dose and so on. Most treatments last between 5 and 10 minutes.

One hour and a quarter later I am released from the machine and wheeled away to have my head frame removed. Again the screw above my right eye causes me to scream out in pain. I ask the nurse why the elderly lady lied to me about how much it hurts. The nurse explains that she was just trying to help me through it. I can do without that kind of help.

Back in my bed I can see that everyone is pleased to see me back safe and sound. The elderly lady (the liar) is in the room opposite me and is sitting up having a cup of tea. Having taken two paracetamols she expects to go home in an hour or so.

I am put into bed, the sides are raised and the nurses begin my routine of two-hourly morphine injections. The rest of the day and night are a blur, my only lucid moments coming when the nurses arrive to give me my beloved opiates.

The next morning (Friday) I am determined to get out of the place. I know I must appear lucid and pain-free if I am to escape. They let me go home with no drugs other than ibuprofen, paracetamol and codeine. We haven’t gone 10 miles before I have a petit-mal seizure, and I continue to have these over the next hours and days. The pain is unbelievable but I bear it as we have been told so many times that this is a pain-free procedure. My mother tells me that I must have a low pain threshold, but I can’t find the words to explain anything, let alone tell her how much I hurt.

At home that weekend Adrian says I was incoherent with pain; crying out and passing out. But as it is the weekend there is nothing we can do other than follow the advice we were given. On Monday morning we see my GP the wonderful Dr H who phones Sheffield to berate them for discharging a patient without any pain relief or anti-inflammatories. He suggests we get back in the car and drive to Sheffield.

We do so and Mr K sees us immediately. He has come in specially. Another MRI reveals no sinister cause for the pain. It is simply that in attaching and detaching the head frame the bone flap over the site of the craniotomy was moved and then moved back, causing pain and disturbance to the part of my brain which causes epileptic seizures. He shows us the MRI of Tarquin taken that morning. He is enormous. Much bigger than before my craniotomy. As well as completely devouring the optic nerve to my right eye, he has now distended the nerve to my left eye. Mr K describes him as a “big beast” and says he has only treated one tumour larger than Tarquin and that patient had to have two procedures six months apart. He thinks that 75 minutes of treatment should stop the blood flow, eventually killing the tumour. We won’t know if the treatment has been successful for a full 12 months. He says he will see me in March 2012 to determine whether Tarquin is indeed dying or whether he needs a little more assistance on his journey. He increases the dose of my epilepsy medication, prescribes as many painkillers as he can and sends me on my way.

The extra epilepsy drugs make me very dopey and tired. They stop me thinking clearly, make me stumble and fall and forget my words but at least they stop the seizures.

I have now had a headache for 8 months, but never as bad as this.

Back to square one

Yesterday I finally made it to Sheffield. I had been waiting for seven months for this appointment and we set off on the eight hour round trip full of hope. What we got was unexpected bad news.

I know I have long bored you with the inadequacies of the NHS administration, but I think in this instance it bears repeating:

Diagnosis             12 July 2010
Referral to Sheffield’s Gamma Knife Centre        26 July 2010
Decision to operate rather than have Radiosurgery at Sheffield 28 July 2010
Surgery                7 August 2010
MRI Scan at JR   1 November 2010
MRI Scan received by Sheffield 14 January 2011
Visual Field Test at JR     12 January 2011
Visual Field Test received by Sheffield    4 March 2011
Consultation at Sheffield              17 March 2011
Gamma Knife Radiosurgery scheduled for            24 March 2011

You will see there is one defining moment in this timeline. The day I became a private patient.

Sadly before Christmas I had to leave my lovely company Realia. They have been remarkably kind to me throughout and continue to be incredibly supportive.  But by December I had been on sick leave for six months. It is only a small company and I felt it was unfair to continue on sick leave when I had no idea when I could return to fully discharge my duties as an Account Director. So I resigned and resigned myself to living off family and on benefits.

In the New Year my old employers Quantel got in touch and kindly offered me a part time contract for a few hours a week. I accepted and when I started I was handed a pack containing details of their private health insurance and was told to call them. I did. And within seven days I saw the specialist Neurosurgeon I had been waiting seven months to see on the NHS.

At this point I had very mixed feelings; elation that I was finally getting the treatment I needed, but also sadness that we have a two-tier health system. I am extremely lucky to have this insurance, but what about those who don’t? How was I ever going to repay Quantel’s kindness?

So on 17th February, St Patrick’s Day, Adrian and I head up the M1 to see Mr K. The only appointment we could get was 4:45pm but we were not in a position to argue so we arrive in plenty of time and wait in the waiting room. All the feelings come back, we are apprehensive but happy that we are seeing the right person and confident that this is the final phase in Tarquin’s demise. I should be healed and healthy in plenty of time for our wedding, which is 9 weeks away.

We go in and meet Mr K who shows me the MRI scan taken on 1st November. And there he is. Changed but not diminished; Tarquin, my tumour, is back. As big and clear and life threatening as ever.

After my surgery Mr G had informed me that he was able to remove 90% of the tumour. Mr K informs me that this is either not the case, or that we were mistaken in thinking that Tarquin was a slow growing tumour. Tarquin is back to 3cm in size, he resembles a broccoli floret rather than a plum but he’s there. And now he’s managed to grow around more nerves and as well as taking the sight in my right eye, he now threatens the sight in my left eye. Surgery is now not an option as any resection would damage the nerves and would cause me to lose my sight completely. All we can do is Gamma Knife radiosurgery.

Adrian and I look at each other in disbelief. How could this happen? How can Tarquin have grown back in just three months? And this scan is four months old – what size is he now? How can anyone have looked at my scan in November and ignored what is plain to see (even with one eye)?

Mr K continues with the news that my visual field tests which took six weeks to get to him, are worthless as they were done by two different methods and therefore cannot be compared. He  also explains that when he does a pre-operative MRI scan on Thursday,  it may be that the tumour is too large to treat in one go and that I may have to come back in a couple of months for a second procedure. But doing nothing is not an option; we must act and act fast. He schedules my surgery for next Thursday. One week’s time.

The Gamma Knife Surgery will cut off the blood supply to the tumour. There will be no immediate effect, but over a number of years Tarquin will turn from tumour to scar tissue and eventually be absorbed by the body. Mr K is confident that he can apply the Gamma radiation to most of Tarquin, but he will have to leave the part nearest my optic nerves in order to safeguard my sight.

As we leave his office Mr K tells me to “cheer up”. An odd thing to say, but as we know Neurosurgeons are not known for their people skills. And I really should cheer up. He could have told me to go home and put my affairs in order. He didn’t. We have an opportunity, a chance and that is something to be grateful for.

On the way home we find it hard to talk. We stop for something to eat and a pint of Guinness (well it is St Patrick’s Day and I can’t let a little thing like brain cancer get in the way). Once at home we sit and hug and cry. It’s just like getting the diagnosis all over again. We feel like we are back at square one, only this time it is worse. I am still recovering from brain surgery which will leave me with lifelong side effects. I am now permanently visually impaired, have reduced cognitive function and epilepsy. It feels like the last seven months have been for nothing.

For the first time I feel angry. I’m not sure who my anger is directed at. Adrian’s is directed at the inadequacies of the NHS. In particular the temporary staff member who has consistently lost letters, MRI scans, Visual Field Tests and just giggles inanely when I phone to chase things up. He considers her to be negligent. I just blame Tarquin.

Phoning my parents was so hard; they too had such high hopes.  But when I check in to hospital next Wednesday I know I will finally be getting the treatment I need. Tarquin will be banished and die in exile like his namesake. But I can’t help wondering whether this could have all happened sooner, and indeed when I would have been treated if my health insurance weren’t paying a significant sum. But you can’t live by ‘what ifs’, it will drive you crazy.

Now then, where did I put all those modest nighties?

Profiterole vision

As March is Brain Tumour Awareness Month I thought I should write something. I feel I have moved into the category of ‘living with an inoperable brain tumour’. I am not undergoing any cancer treatment as I am still waiting to hear from Sheffield. I did phone them this week to chase and they had STILL not heard the results of my most recent tests – a visual field test – which I had done on 12th January. This was to test my peripheral vision – or as I kept calling it – my profiterole vision. I had the test done in the Eye Hospital on the ground floor of the JR building of which Mr G’s office is on the 3rd floor. Considering the execrable administration I have encountered, I nearly offered to walk the test results upstairs myself, but I thought that may be rude. How I wish I had!

The test itself was tragi-comic. They covered my right eye and with my left I had to look at a screen where essentially lights are flashed on in various places, and I had to press a button whenever I saw a light. So the lady flashed the lights and I duly clicked the button. She mapped my profiterole vision onto a chart and then she moved on to my right  eye.
Eye Lady: “How much vision do you have in your right eye?
Me: “None”
Eye Lady, with no sense of irony: “Oh. I can’t test you then. I can only test people’s vision who can actually see. If you can’t see then you need a sight test with an Opthalmologist. Please take a seat in the waiting room and I’ll see if I can find one.”

Eventually an Opthalmologist was discovered in the Eye Hospital (amazing) and she set up the machine to do my right eye. She gave me the button and started the test. Now of course I know what the machine sounds like when the lights are flashed on and off, but I see no lights, or indeed ships.  So really what I should have done is hand carried this entirely blank chart up three floors and put it in Mr G’s pigeon hole myself.

So still ineptitude among the NHS admin staff and still no date for Gamma Knife treatment. There may be some light at the end of this tunnel, but I can’t see it. With either eye.

Happy New Year?

Has it really been 2 months since my last post? Doesn’t time fly when you’ve got cancer? Actually no, it drags. Really drags. It drags worse than Kerry Katona on ice skates. And I should know (more on that later.)

“So what’s been happening in Tarquin land?” I hear you cry. Answer: Sod all.

Well if you count yet more ineptitude by the NHS administration as ‘something happening’ then I guess something has happened. After mis-referring me TWICE, eventually Oxford and Sheffield have got their act together an I am now officially on the waiting list for Gamma Knife Surgery.

I was originally referred in August 2010 but had to wait until my November MRI scans to be sent before I got on the waiting list. This seems to be a crafty ruse employed by hospitals so that they can massage their figures. As I am not on a waiting list, I can’t be waiting longer than their charter allows. Oxford forgot to send my scans, twice, but have now done so and as at 14th January 2011 I am officially waiting rather than just waiting in my own time. The hospital says they have a charter to see me within 18 weeks of referral, well 18 weeks from 14th January takes us to 20th May. And we’re getting married on 21st May. Fantastic.

I hope they will be able to see me at least 2 weeks before the wedding so that my head and face can heal and so that I am able to fly off on honeymoon. But there’s no guarantee.

So I sit. And I wait. And I hope.

Generally my health is improving. My balance and co-ordination are better but my chronic fatigue is still as debilitating as ever. A late night, a busy day, too much activity (ie any at all)  take their toll on me the next day and I am wiped out.

My lovely cousin Dan got us tickets to Dancing on Ice and we thoroughly enjoyed it – I was in Z list celebrity heaven! Even Adrian got a bit starstruck over Freddie Flintoff. It was a long day but the adrenaline kicked in and I was able to stay for the whole show. However, the next day I could barely raise my head off the pillow. Luckily I didn’t have to.

Adrian is now away on business for 3 days, the first time we have been apart since my stay in hospital in August and the first time I have been at home alone overnight. My Mum is in Canada visiting her sister Gloria (wife of the wonderful Uncle Dave) who is not well at all. I feel rotten that Mum has had to go alone, I wish I could go with her but I am not able to fly and know I can’t be of any practical help. The old me would have taken it in my stride and hired a car and helped out in any way I could. The new me just has to stay at home and hope everything is OK.

The other thing is that I have written an article for ELLE Magazine which will appear in the March issue (out on February 6th). The features editor got in touch with me after reading this very blog and asked whether I would write an article for them. It is a little about Tarquin but more really about Adrian and I, how we met and how we fell in love during my cancer treatment. I guess to others it might seem an unusual story but to us it seems the most natural thing in the world. It isn’t an ideal way to start a relationship, but I think the way we have handled this, we can pretty much handle anything life cares to throw at us. So please go out and buy the March issue of ELLE and let the lovely people there know how much more you would like to read from their new correspondent! Well, now that I am walking better I have my eye on a new pair of Louboutins……….

The waiting game

Four weeks on and no word on my MRI so I decide to call Mr G’s secretary. Her voicemail informs me she is on maternity leave and says not to leave a message. So I call the main number and ask to be put through to the secretary who is covering for the one on maternity leave and I am put through to a voicemail which explains that the person at that extension is off sick. So I call the main number again and ask to speak to Mr G himself. I get his voicemail. So I leave a message and follow it up with an email. A couple of hours later he responds:

I have written you a letter but essentially the scan shows some residual tumour as we expected. I suspect that some is within the cavernous sinus (the big vein in the middle of the brain). Therefore I have sent your scans and another referral letter to Mr R at Sheffield and hopefully he will now want to see you to discuss gamma knife treatment. If you don’t hear within 3-4 weeks, please let my secretary know and she will chase it up.

Hope you are well

Well the good news is that we now know exactly what Tarquin is. He is a cavernous sinus meningioma. He is an aggressive grade one tumour and is therapeutically challenging. Which means he is located in a vital part of my brain (is there an expendable bit?) and what remains of him is completely inaccessible. He is obviously affecting my vision and has the ability to crimp my carotid artery and we can’t just leave him as he is so Mr G has referred me AGAIN to Sheffield. This means more waiting, more limbo, more uncertainty. We continue to be unable to make any plans but we try to remain upbeat. We succeed about 80% of the time.

Not even Mariah Carey could make a decent song out of ‘All I want for Christmas is gamma knife radiation therapy.’

I really am getting fed up with this whole cancer thing now. I just want to see an end date and there isn’t one. Three to four weeks takes us to Christmas, Christmas will take two weeks out of their schedule, then how long will it take for my appointment? I just want to get back on with my life. Whatever my life looks like after Tarquin I want to turn the page and start a new chapter.

So rather indulgently after reading the email I took myself off to bed with my two cats and pulled the duvet over my head and cried. I should at this point extol the virtues of having cats around you when you are recuperating as they are very soothing and remarkably therapeutic (or just ‘filthy vermin’ if you’re my Mother). Lily and Daisy are great company and cuddle up to me regardless of whether my legs (or head) are shaved or whether or not my makeup is running, and they can always tell when I’m upset. They come and look at me with plaintive eyes as if to say “Why are you crying? Look at me, I’m beyond cute. Stroke me and you’ll feel so much better. No not there, a little lower please. Now how about some prawns?” But there are definite downsides to being half blind and owning cats. Not just that they almost trip me up every time they walk towards me from the right, or that I can’t see the dead mouse/vomit/fur ball until I step in it bare footed. They have an uncanny knack of making me look an idiot. This morning whilst getting ready I was chatting away to Lily as she was curled up on the bed (don’t tell Mum). She was her usual chatty self, i.e. not very, and as I passed I bent to stroke her head, only to find she was in fact Adrian’s grey scarf. Lily looks at me from her vantage point on the window sill with  a very disdainful gaze, and then turns her head and continues to watch the snowflakes settle on the garden below. Hopefully by the time the daffodils are out Tarquin will finally be banished and I can start afresh.

Getting out and about

Over the last couple of weeks I have been leaving the house more. My friend Daphne made a huge sacrifice and abandoned her husband and 14-month old son to fly transatlantic and spend a week looking after me. They weren’t so much abandoned as well looked after by grandparents but it is still a tremendously kind thing to do. It was a week filled with laughter and we even managed a couple of lovely outings while she was here. Each was a logistical nightmare as I can’t see well and still need help to walk and navigate so wasn’t much help to Daphne who drove a manual hire car brilliantly and most of the time was on the correct side of the road.

I had a rather depressing meeting with Dr H where we talked about my inability to go out in crowded places. He explained that when confronted with a sensory overload (which frankly is two things at the same time – listening to the radio and trying to have a conversation, talking and walking – I have a new found empathy for Gerald Ford) my brain doesn’t know how to process the information and just shuts down. So when I’m in crowds and people are walking towards me, I just freeze in panic.

I also told him that I can’t remember things, especially important dates (I have missed a few birthdays lately – sorry) and I can’t multitask. His diagnosis? “You’ve turned into a man.”  It is lovely to have a laugh with one’s physician but on a more serious note he said I shouldn’t worry and just write a list. He said I am a “new me” and I won’t ever be totally the “old me”. I need to reflect and consider what the “new me” can do whilst celebrating the little things that are “old me”. Hmmm I shall have to work on that one.

After Daphne’s tearful return we went to Belgium with Adrian’s family to celebrate his Dad’s 70th Birthday. Adrian did all the driving and I slept the whole way there and back. We had a super time with lovely food in a place called Ave-et-Auffe which is pronounced ‘ave-it-off. Negotiating hills and cobbled streets was challenging, but the scenery was beautiful and it was my first night away since hospital so it was good to prove we can do it.

Last week my Dad took me to the Gauguin exhibition at the Tate Modern for my birthday treat. No-one realised the irony of taking a blind woman to an art gallery until we arrived. I had my nose pressed so close to the paintings I was in danger of setting off the alarms but it was worth it – it is a wonderful collection of his paintings, sketches and letters from his travels around the world.

Next week I am back at the JR for another MRI after which my team should decide on the next phase of treatment. My hair is growing back quite well. Now rather than an undercut I have more of a mullet. Still there is seven months to go until the wedding and if anyone knows of any Miracle Gro for hair, please let me know.

My mullet