Tuesday, 26 August 2014

Distraction through Love

My number 1 daughter and I are now indulging in a spot of blog ping pong. Her perspective on stuff versus mine. Her world is about to expand beyond my dreams (world expansion not being easy to pull off with four children in tow) whilst mine has contracted so much that yesterday's shopping trip to Harrogate took on the same level of effort and exhaustion as machete-ing my way through the Amazon jungle (more fun though, perhaps!) Anyway hopefully she will give me a window on the world through her blogs in the months to come and I shall not be a miserable pain - we shall see...

 In five weeks, Alex and I leave to travel around the world. The days are getting shorter, my dreams consist of exotic landscapes and I look ahead with a bright spirit of adventure and only mild feelings of trepidation. 

Having lived in London for six years, it is with more than a slight curiosity by which people respond to the news that Alex and I are going away. It strikes a discord with the Londoner's Handbook which requires people slaving away hours in a job that only pays barely enough to cover rent and a social life. Some people even compromise the social life - I can name more than a few. Somehow this ingrained mentality has rebranded itself into a civic responsibility that we are required, that we owe the organisations we work for and the city we work in, our lives. And I for one am defying this principle.

Some think I have always defied this by my choice of careers, but they are wrong. I am like you too. 

Don't get me wrong - financial security is important for being able to provide for your family and your future and I don't disagree that this is a responsibility everybody should shoulder. But we only have one life and I want to be able to reflect on it as being full of colour and adventure; miracles and the lightness of being. Charged and vibrant memories. A year of seeing the world will provide me more of these than a lifetime of servitude in London. It will also, I hope, give me a breadth of perspective, a renewed sense of self, zest and appreciation of life's fragility and its vitality. But I will also go without expecting any of this to happen, releasing all sense of expectation and burdensome benchmarks - so this trip does not fall short in any way. 

Lately I have felt a little plagued by a sense of responsibility. Guilt. It is more one that I have placed on myself than impinged by other people but those can often be the hardest to bear. It is moral. Even worse.

My mum has cancer. 

It feels wrong. 

I know, mum, if you were reading this right now, you would say "don't be silly". And you're right. But nevertheless, it is a cross that I can't help but bear. I can't help but feel guilty, ashamed that whilst I am lounging on a beach, gazing at a sunset, gin and tonic in hand with a little wooden umbrella, that you might be lying in bed exhausted, throwing up into a bucket, or shedding hair. I am scared for you and it just feels wrong that I will not be there with you - tucking you up in a blanket, rubbing your back or squeezing your hand. I am laying my shame bare. 

You and I have been talking a lot about control. And in certain circumstances, the need to relinquish it. Neither of us are very good at this. And I need to accept that this is a situation where both you and I have to let go - you of your body and me of my sense of right and wrong. That in the adventures that Alex and I face ahead, we will experience a part of life that you have dreamed for me since I was born and, in spirit, you too will ride elephants, jump off cliffs, barter for silks, read a map upside down, order dog off a menu (by accident), fart loudly in a temple. And in regaling with you, I will offer the best home remedy possible - distraction through love. 

So I cannot promise that I will shake off this horrible feeling about leaving you before I get on the plane. This might have to be something I do a few thousand feet up in the sky with a hefty drink. And I might have my moments on the other side of the world where I stumble and need to call you for reassurance. I hope that's ok. Sometimes your example can be a little too hard to follow. 

Monday, 25 August 2014

Who's in Charge Now?

What seems like a lifetime ago, I was driving down the old A1 on my way home from playing my last tennis match away at Bedale. To my left, above the embankment, huge lorries were swooshing past northbound while I, below, was alone on the old road with my headlights streaming ahead of me. The next day I was due to go to York Hospital for surgery.

It occurred to me at the time that I could run away, not turn off at Ripon, and just keep driving. Except of course, that you can run away from everything ...except your own body. So I meekly went off to York the next day to begin the process that will take over a year of my life and, whether I like it or not, nothing is as it was before.

I can't remember a time when I haven't pushed my body. All those times when I have made myself run faster, cycle further, hit a tennis ball harder, do that one extra thing for work which makes a good job excellent or dance one more dance when my feet are telling me it's time to quit. And suddenly the boot, as it were, is on the other foot. My body is calling the shots and my mind, however much it protests, must submit. I've been a driven person, the classic 'completer finisher' all my life and it's a steep learning curve to let things go, as let them go I must.

I have to learn to prioritise. To do what's important rather than what needs to be done. Spiders will weave cobwebs, weeds will grow, filing will accumulate and someone - probably not me - will have to attend to such things. But really my priorities haven't changed. Children, my beloved, my wider family, friends  - and home, in the broadest sense of the word, so much more than bricks and mortar - those have always been what matter most. Will my children ever truly know that a spontaneous hug from them is worth more than rubies? That having them all at home, however fleetingly, is so precious. And that watching them grow has been the greatest pleasure of my life.

But there's one other priority now. There's only one person in this body. Only one who knows what must be done to keep sailing through these choppy waters. I am the single-handed yachtsman and I am, despite all my friends and family, utterly alone.  I can't share my pain and sickness, however much you or I may want to. It is mine alone.

I don't want to lie down, sit on a cushion or put my feet up but when my body needs this, I must, however reluctantly, obey. This is going to be hard.

Monday, 18 August 2014

The Hedgehog

A guest blog from my charmingly inappropriate number 1 daughter - definitely post-watershed! She doesn't hold back on the detail. And the quote at the end is a brilliant piece of improvisation from Robin Williams when Mrs Doubtfire's false teeth make an unexpected and unattached appearance at the end of the film. Just in case you wondered...

Poor Winston’s idea of foreplay was “Brace yourself, Effie”. Not that I am about to talk about my idea of foreplay. Don’t worry Mum. But in the wake of Robin William’s suicide and your first round of chemotherapy, there seems to be a tragicomedy theme tune harping in the background this week. Particularly with the story of the Hedgehog. More on this later.

Over the last couple of weeks, it is fair to say that distraction has finally succeeded with your holiday with the infamous singing, dancing doctors and Skip and Mrs Broccoli (even I have succumbed to calling them by their aliases), and my business trip to Mumbai - consisting of crocodiles, bobble-heads, transvestites and overdoing the Indian cuisine. Delhi Belly indeed. Having barely stepped a foot through the door of my London home, I blitzed up on the train north to be reunited with you, my mother - who it turns out was too busy being a marvellous and mildly-distracted MOB to Middle Sister at ‘Pemberley’, to even pick me up. Luckily, one of my new substitute mothers - Mrs O’Polo was able to include me in her entourage home from Knaresborough. 

It is fair to say, I was feeling a little trepidation about returning home for we had two big days ahead - A Level results on Thursday followed by the Hedgehog and 70’s Swimming Gala on Friday. That is, Round 1 of Chemo. Right now it feels safe to feel a little relieved. For it wasn’t all too bad. Both Little Sister and Single Brother succeeded in getting into their first choice universities, reacting to their results in entirely predictable fashion. Robbie casually glanced at his results, texted all of us and then headed off to coach tennis before realising that he had read his results wrong and done even better than he had thought. Sabrina threatened murder to anybody who came within a metre of the white envelope which contained her results. It is not surprising that I then promptly snatched this envelope out of her hand and got chased around the school car park. It is my job as embarrassing big sister after all. There were no tears, hugs or champagne for this pair are just too cool. However, I did notice a lump in my throat that didn’t dissipate until I brushed my teeth before bed.

Friday was the big ball game and the stress levels in the house were palpable. As one does, when one knows their mother is in a frightening mood, we all hid into small dark spaces until it was safe to come out. This was around noon. Now six weeks ago, or so, when you and I discussed me coming back home, I thought I had been invited to accompany you to this wonderful visit to the York Hospital Magnolia Centre. Typically, in deaf fashion, I had misinterpreted. Nevertheless, you were kind enough to allow me to escort you and Daddy in the car. A dubious decision you must have thought.

We have a great bravado, us Barrs. And it never manifests itself so strongly than when we are all terrified. I think if I had grasped your shaking hand before we started, I would have cracked. But there was a job to do. That visual of your courageous, fragile and determined face had to be stored to the back of my mind until bedtime, when I could cry freely. Why you, Mum? As we walked in to the Magnolia Centre, I was darting glances left and right at the other patients in there - they were all so much older. Dad took the first hour shift, and as you asked him to direct me to the Costa Coffee in the main hospital, he looked horrified to leave you for even a second. I think it was then I realised that I was there to do something else - because whilst only Dad could will you through the pain, only I could do justice in distracting you from it. 

Obviously not a surprise.

After Dad begrudgingly let me do the second shift, it was game on. You had an extraordinary pink and black swimming cap on, made out of the same material as a wet-suit, reminiscent of a 70’s flowery swimming cap. At the top of this very bemusing swimming cap was a long pink tail connected to a machine on the side. (The cap contained anti-freeze aimed to prevent all those nasty chemicals from attacking your hair). You did spout out some terribly rude words, mum, about how cold your head was. This is forgivable on a cancer ward but I hope you’re doing penance as we speak as this was not acceptable in front of your innocent number 1 child. Amazingly, my pink and blue woolly hat was a perfect accompaniment to your 70s swimming cap, and the two of us looked terribly stylish as we posed for selfies in the ward taken by the nurses Shirley and Jo. Astonished glances were on the faces of the other ward inhabitants - but they secretly loved it. 

The crossword was a rather unusual experience as you were both unable to put your reading glasses on and convinced that your brain cells had frozen. No mum, it's just the clues were bloody difficult. 

Because you were behaving so well, I agreed to do a reading of the scene that I had performed for Channel 4 on Monday. This was the infamous cafe scene in ‘When Harry met Sally’. Due to your temporary blindness, I agreed to play both parts and did a beautiful rendition that was abruptly stopped right before the ending, by you, my wonderful mother. I am sure that the ward, and the entire hospital in fact, would have loved to hear my loud fake orgasm. I scored a 10/10 for it by the director on Monday. But it was not to be.

It was only in the car on the way home, when I was graced with an explanation of what the ‘Hedgehog’ was in reference to. It turns out, and yes, I am going to say it here, that one of those nasty chemicals they put in you creates the sensation of a hedgehog trying to ram its spines up your vagina. My reaction to this bemusing definition was only exacerbated by my query as to whether the same sensation also happens to men. “Yes Genevieve, only much worse, they feel it in their testicles.” 

Sadly this week, one of the Barr family’s favourite actors - Robin Williams, died and we celebrated his death by watching one of our all-time favourite treats - Mrs Doubtfire. This time around, we were graced with six hotdog impressions (Alex was too mature for this) and a heimlich manoeuvre performed by Dad on me having just swallowed my red wine. We were all casting watchful eyes on you, my beautiful mummy, ready to come to your aid with a bucket in case you were sick. 

So the verdict? It’s now started - the dreaded chemo, and only time will tell how your body responds to the treatment. We will all be patient, supportive and watchful - for you are so precious to us, but at the same time pretend that life is as normal as ever - because that is how you want it to be. A tricky balance, and one that we may never perfectly achieve but as you said - one day at a time. Meanwhile, I am storing up all the laughs for our second stand-up comedy gig in three weeks time. 

Carpe Dentum

Saturday, 16 August 2014

"I'll Have What She's Having."

I spend most of my dog-walking time writing fiction in my head, some of which makes it onto this computer and even, though not successfully, into the hands of a literary agent. But this week, my week, would not make any kind of credible fiction because, as they say, the real world is stranger. And this has been the ultimate roller coaster of a week.

Back from Mallorca just nine days ago (artistic licence here), in the diary for me were the following:
1  Three appointments at York District Hospital including one round of chemotherapy,
2  My maiden voyage as a proper mother of the bride-to-be to look at a wedding venue, and
3  A level results for the twins.
Add into that two client meetings, one charity meeting, two games of tennis, 3 trips to the gym, one to the dentist and in the middle of it all, the arrival of number 1 child.

Item one was meeting the oncologist again to discuss - again - my treatment and the cornucopia of possible side effects which runs to four pages. I won't bore you but, and this is very non-pc, but if we gave every violent criminal currently serving time the drugs that I was to get later in the week with that same list of side-effects I think they might turn from a life of crime. Non-pc says number 4. So I sign myself up for the whole shooting match. How I hate giving up control.

Appointment 2 (after one hit on a tennis court and one trip to the gym) was with the chemo nurse. Let's go through all the side effects again - yes let's! Then I have all the tests, blood, blood pressure, ECG (new one for me and I felt like I was being wired up for broadband - great idea! My lovely, wise friend Mrs O'Polo who is an expert on this stuff says she was hoping for the levitation effect - disappointingly no). Anyway I have passed all the tests with flying colours and first prize is ... six rounds of chemo plus all the other stuff. God only knows what the second prize is.

Then once I've cracked through a couple of client meetings, a charity meeting, another game of tennis and trip to the gym, I have to go to my gorgeous dentist. Yes, 'gorgeous' and 'dentist' in the same sentence. All I want him to do is tap my teeth and say 'perfect' because you have to be in good dental health to pick up the chemo prize. He tells me he needs to do some work and all I want to do is cry. Sorry, R. Anyway he does it on the spot and sends me off with lots of good wishes and only one side of my mouth rather frozen and dribbly to meet number 2 and be MOB.

The venue which is on the shortlist of two for number 2 and her LF's forthcoming nuptials is Pemberley. No, not really but there is that whole Mr Darcy vibe going on and whilst number 2 was being perfectly gorgeous, grown-up, poised and business-like I have half a head imagining her in a wedding dress looking all the above apart from hopefully the last one. The other half is doing the number 2 aged 5 with a head covered in red ringlets and the most cracking sense of humour. "Mum, it's not that I'm naughty at school, it's just that if there are a whole gang of us doing something then I'm the one the teachers can spot!" I've already been banned from showing slides of the tiny number 2 on the day - shame. I love the one with her in her nappy when number 1 and Sam had painted L-plates on the back. Anyway, importantly, especially for number 2, I managed to do the whole wedding venue meeting without crying or mentioning cancer which I think was a great relief to her - and me.

Thursday was the biggest day of the week. Really, no question. I know it's stressful for all parents but for mums and dads of multiples, days like this are a killer. What if one does and one doesn't (entry to Ripon Grammar when they were 10 was much like this) or one cries or, worst of all, both miss out? And I don't really have a plan B and my usual on-the-hoof method of getting out of such situations isn't functioning because of all the other things going on in my head. However, the absolute joy of the new UCAS system is that you can find out online, at home before you face your peers at school which was how it was for 1 and 2.

I'm up at 5.00am, ironing for England and watching the clock. Seemingly you can log on at 8.00am. But by 7.30am, texts are pinging through on my phone so I go and wake the boy. Groan, too early. But moments later it's like the elephants in Jumanji thundering down the stairs and yes, YES,  he's in. Bloody brilliant. Number 4 has her room in the barn so we rush over there with unseemly haste and wake her up too and YES, YES she has also got her first choice and is off to Edinburgh in September. If they can pull that off, then I can man up and do what lies ahead for me. They go off to celebrate with their friends and I go to the gym.

In the middle of all this, number 1 has arrived from London for a few days mother-daughter time and to be my support for Friday. Number 1 has spent the early part of the week filming for the Edinburgh Film Festival. Her role was to recreate a scene from a famous movie. Now, following on from her other roles in an entirely logical way, she's is cast in the Meg Ryan role in when Harry Met Sally and it is, of course, the cafe scene. Yes, the 'I want what she's having' one. Only in my life could all this stuff be happening at once.

Friday. Kept myself busy with housework, dogs, work etc up to the last moment when we have to leave to go to hospital. Number 1 doing her thing in the car - cracking jokes, singing (too hideous to describe) and talking about happy times. I'm grim. I have to live in the moment. I can't look back - it makes me too sad, and I can't look forward - it's too scary.

The actual chemo bit of the whole process takes about an hour and a half. If you want the cold cap (keep saying 'mother of the bride, mother of the bride') it means the process takes four hours. Lesson in hospital-speak: if they say it might be a bit sore, it hurts. If they say there may be a little discomfort, it really hurts. If they say (as they did for the first fifteen minutes of the cold cap) it hurts, they mean it's absolute agony. And it is. I am holding my beloved's hand so tightly that he has to keep changing hands (must be all that tennis - strong grip). I have tears in my eyes and I keep telling him not to let me give up. Fifteen minutes is a long time to be in big brain pain. And then you just get used to it. The rest of the ward are clearly fascinated. People either don't do this often or their chemo doesn't make their hair fall out or, as the nurse told me, most people rip it off in the first five minutes. 'Mother of the bride, mother of the bride.'

Now the tag team that comprised my hospital support - my beloved and number 1 - swapped over as there is really only room for one person to sit on the ward with me. The arrival of number 1 - why can I always hear her from down the corridor? She sits down and immediately puts on her woolly hat. Now we're really getting some interesting looks. The nurses want us to do a selfie so, yes, such a thing exists though I'm not sure anyone but a blood relative is ever going to see it. We also have a problem, Houston. I can't get my glasses on over the cool cap (we're talking size of a motorcycle helmet here) so I can't see. We need to find a way round this and the best we can come up with is the Hugh Grant prescription swimming googles he wears in Notting Hill. Now the rest of the ward are coming up with suggestions - a lorgnette perhaps? So we do the crossword (or not, because I can't see the grid and my brain is frozen) and number 1 is reading out the clues at her usual volume. We have to give the woolly hat to the lady sitting next to us with her husband who is having chemo because she wants to do the crossword later and doesn't want to know the answers so she is now wearing the hat.

Still a couple of hours to go and number 1 refuses to play Connect 4 which is big enough for me to see so she re-enacts When Harry Met Sally. Hilarious and the whole ward is enjoying the comedic presence of number 1. Next gig, same place in three weeks time.

Finally, after a visit from lovely Kim (my breast cancer nurse) to talk weddings and other nice things, it's finally over. We are last man standing - or rather, sitting - in the ward as treatment takes an hour and a half unless you do the cold cap and everyone else has gone. I am finally unplugged from the machine but I can't take the cap off as my hair is frozen to the cap and will come off with it. Have to wait about ten minutes to reach somewhere near room temperature and then it can come off. Round 1 is done. Plenty of drugs that I must take and some I can take if I need to. We'll see but I'm OK.

This is Meg Ryan doing her thing and I am promised the clip of number 1's filming of the same scene so I will post that too - soon.