Tuesday, 23 December 2014

89. Thinking of my mother...

Do you think about your mother? a friend asked me once. Do you miss her?

I have wanted to write about this for months. In fact I have written about it, but the writing has been private; it just wasn't blog-ready. How can you ever really capture your heart in words?

...It's like trying to explain your faith, or your love, or the meaning of life: such things are bigger than words. And because they are bigger than words, they lose some of their truth and their vastness as soon as you confine them to the words that are meant to describe them.

...It's like being asked to describe someone's character in three words. The words you choose are undoubtedly true, but there are thousands of other words you've had to leave out, and they would have been just as true.

...It's like that parable of the blind men who are presented with and elephant and asked to describe it. They end up arguing, because the man near the trunk says that an elephant is like a snake; the one near the leg says it's like a tree; the one near the tail says it's like a piece of rope.

I am worried that if I tell you about my mother's loss, I will give you a tree but leave out the trunk.

Yet my mother's dying, her new absence, has been such a fundamental part of my cancer journey that this blog would be incomplete if I left it out. So I've planned and planned this blog post, but when is a good time to release it? I tried writing something at the beginning of November, around Remembrance Week, when the churches and my mother's nursing home held memorial services (I couldn't go but my sisters kept me in touch; they even filmed the song my younger sister and her friend contributed, which was so moving that it had me sobbing at my computer). But I couldn't get past the words-don't-capture-it problem.

Now it is Christmas time. Perhaps there is no better time to write about a mother's love for her child.

So let me try again, hoping that it won't spoil your Christmas; hoping, rather, that it will shine a light on your Christmas, as it does on mine.

Let me try to speak of the unspeakable.

(Warning: this is a long blog post and you've got Christmas coming up, so you may wish to skip it, or leave it for another, less busy day.)

The quick (and perhaps surprising) answer to my friend's question is: No, I don't miss my mother now.

I haven't had the space or the energy to miss her.

It is undoubtedly different for my sisters, whose daily lives have changed without my mother: the daily worries, the frequent visits, the caring. But for me, here in London, my mother's absence has not changed things much. The truth is that my mother hadn't been part of my daily life, or even my monthly life, for several years. 

Four years before she died, my mother was given a devastating diagnosis of pancreatic cancer. We didn't think she would survive (cancer of the pancreas is particularly nasty). But she was a survivor, and once again, the thought of her children stopped her from dying. She was lucky: one of the few patients with this diagnosis whose cancer is caught early enough and is operable. She decided to have invasive surgery that few people of her age (she was 80) can cope with, and she crawled back from the brink.

But it speeded up the advance of other symptoms. My sisters and I were convinced that something was going wrong with her brain, but the professionals (including the dementia clinic) had dismissed a dementia diagnosis. Instead, they sent her a psychiatric nurse for regular chats, which she enjoyed, but which couldn't stop the symptoms. She was finally diagnosed with vascular dementia.

Two years before she died, she moved into a nursing home. Everyone (except her) thought it was fantastic. She had her own sitting room with her own furniture, bedroom, bathroom and kitchenette. She had nurses keeping a eye on her.

My mother was desperately unhappy with her diminished life. No more cycling! She never stopped complaining about that, and about the many other losses that came with increasing mental and physical frailty. She cried about it. This was hard for us, because my mother was not one to complain, and until that awful cancer diagnosis, I'd never seen her cry.

It also meant that my mother, who used to come and stay with us in London several times a year, could no longer do so. And in the past few years, we rarely spoke on the phone. When I did ring her, it was (I am ashamed to admit) out of a sense of duty. Her deafness, her slight confusion (although she never lost sight of who we were and what we were up to), her uncharacteristically vocal misery: it was hard.

We had turned into carers, cajoling and mothering her.

I found myself turning impatient, unable to listen to her woes. That was hard for me: the fact that I could be endlessly patient with others, listening to them and to their problems with an open heart, but somehow I couldn't do it for my own mother. She was my mother. Somehow, it seemed that being an understanding listener wasn't part of a child's job description, even if the child is grow up.

I don't miss all that.

Perhaps if I went back to Holland, the answer to Do you miss her? would be different. 
I haven't been back since the funeral. I am trying to visualise going back to my home town and not seeing her there. During all the three decades of living in England, my visits to Holland have been punctuated by visits to my mother. Visiting a grave instead of seeing my mother will undoubtedly make reality hit.

Hm. See? This is where my words, however true, point you in the wrong direction. Because of course I miss my mother.

Of course I do. I was brought up short only yesterday, when the Christmas CD I was listening to suddenly gave me Bach's beautiful Jesu, joy of man's desiring. Once, years ago, when my mother was staying with us and she heard me trying to play this on the piano, she rushed in and said, I love that melody! You can play that at my funeral! So we did, and hearing it again all of a sudden brought back my mother's coffin being carried out of the church by my husband and my son; it brought back my mother.

Tears welling up. Of course I miss her.

But during the last years of her life, she lost the ability to mother us. Yes, her love was there, and her pride in us and in her grandchildren. But mostly, her worries were there, for us, but especially for herself.

Perhaps the hole was dug when she became ill with pancreatic cancer. Much of the hole she would leave in our lives was already there by the time she died. I think that is probably true for many families who lose part of someone they love to a debilitating illness - especially dementia.

But here is what has surprised me this year.

I knew that people leave hole when they die. I didn't know that by dying, people can also fill a hole. They can leave a hole and fill a hole at the same time.

The hole-left-behind is fairly easy to describe.

The absence of a mother who has been ever-present, always there, ready to receive me, ready to visit me. The never-again voice, touch, smile, hug, admonishment. Her skin, her eyes, her pleasure in seeing me, her coffee with a biscuit (or better still, cake). Her unconditional love, despite her many suggestions for ways to improve our lives (starting with our haircuts).

The foundation of security on which I built my life.

But the hole filled: that is an unexpected gift.

It was hard, those weeks when I faced a mastectomy and she lay dying. It seemed an impossible crash of circumstances, yet I also knew that it could not be otherwise. Somehow, the two seemed linked. My mother didn't know that I had cancer. I am a passionate advocate for truth-telling, but I knew that her dementia would prevent her from coping with my diagnosis.

But on some unspoken level I felt that she did know, and that dying was her gift to me. Her unrelenting distress at her own situation, her frailty, her need for care, and the worries that brought us (my sisters bore the brunt of this): I suspected that I would not have the space and energy for it all. Not physically, not emotionally.

Once the chemotherapy started, I would not be able to hide my ill-health. Worse than that: how would I cope with the constant worry about my mother, knowing that if anything happened to her, I would - for the first time in my life - not be able to go and support her, or support my sisters?

(And how true did this turn out to be. Several times, during the lowest points of chemo/misery, my sisters and I have sighed: Thank goodness we don't have to worry about mum anymore... How would we have coped with it all if she was still here?)

I cannot capture in words the heartbreak and beauty of my mother's slow dying, nor the profound transformation of my final moments with her.

How many people get the opportunity to share such a moment with a dying parent, a moment when you are both deeply and openly aware that death is imminent and this is the last time? I have seen enough deaths to know that the moment is either fairly unexpected (yes, even in a hospice: the family has said Bye, see you tomorrow but then the person dies in the night), or it follows a time of unconsciousness.

But because I couldn't stay with my mother until the end, because I had to leave her to have my mastectomy, my final moments with her were extraordinary. It is one reason why I feel that my cancer and the loss of my mother are so closely and so importantly linked.

My mother was so close to death that I had not expected her to still be conscious on that evening of our final parting, but she was.

It meant I couldn't just tiptoe out. Neither could I bring myself to say goodbye like so many times before, Cheerio, I'm going now, I'm off to London.

I had to make sure that we both knew the enormity of what was happening. My sisters and I had already told my mother several times that she was dying. That it was OK to let go. (Why oh why, we kept wondering, was she hanging on well beyond physical endurance?) But she had never acknowledged it. Was she too frightened? Too muddled? Too deaf?

That final night, she had barely been awake, but now I found her suddenly lucid. So I put in her redundant hearing aids (didn't want to shout my final words at the top of my voice, and still risk her mis-hearing them) and put my face close to hers.

Mum, I said, I have to go and leave you now.

I know, she whispered.

Mum, I won't be able to come back. I can't ever come back and see you again.

I know, she said again.

But did she? Did she really know? I wondered. I simply had to spell it out, to be sure; to stop me wondering forever after.

Mum, I said, you are dying. You are going to die very soon, and I won't ever see you again.

She looked at me, holding my eyes with the intense gaze only babies and lovers have, the gaze that reduces the world to just the two of you.

Yes, she said. Yes. I know.

With tears running down my cheeks, my face so close to her vulnerable open face, I suddenly I heard myself say: Mum, I will see you again in Heaven.

I will never forget what happened then. It has sustained me throughout my illness.

My mother's face was suddenly transformed: that is the only way I can describe it. She suddenly smiled such a beautiful, deep and genuine smile, she looked at me with such honesty and compassion and joy, it was as if I was looking into the face of God, of Buddha, of Eternity: I was looking at Heaven.

And in that instant, all our worries and fears fell away. All that caring, cajoling, reassuring, patronising of an elderly mother. All that anxiety about her life, her death. It was as if for the first time ever, my mother could see Heaven, and could finally believe that she had a place in it. 

YES, she said.

And suddenly, the hole was filled. For the first time in years, she could be my mother; I could be her child.

I could let go of mothering my mother. Choking on my tears, I asked her something that I could not have asked anyone else. Not in the same way. Because she was my mother, and I suddenly knew that I needed her in a way that had never been this obvious.

Mum, I sobbed, when you are in Heaven, will you pray for me, and for my children?

She looked at me with such love and such joy, a joy I have never, ever seen in her before (and which had definetely been absent during her final years). It was as if she had finally found herself - and in doing so, she had found the eternal love of a mother for her child. 

Yes, she said, smiling. Yes, I will do that.

It was a promise that, like my wedding vows, will sustain me for the rest of my life. 

Her hands, so weak, so old, so trembling, tried to bring my hand to her pursing lips. Thank you, she whispered.

I embraced her, kissed her, Oh mum, you have been such a wonderful mother. Thank you, thank you... I love you. Goodbye mum. I am going now.

I turned once more when I walked out of her room and I saw her looking at me, still smiling, trying to wave.

Where my mother and I said our final goodbyes
I never saw her again. I cried and cried and cried after that. I've cried every time I told this story (and my listeners, bless them, have cried along with me for good measure). I cried when I first scribbled it down, sitting in the Surgical Admission Lounge less than two days later, waiting for my name to be called to have my mastectomy (I know, not an obvious place to be writing such things, but I was worried that the anaesthetic would muddle my memories of the exact words, the exact touches). I am crying now, typing this up more than six months later.

Amidst all the distress of my mother's final illness, and all the distress of my cancer diagnosis and the impending mastectomy, there it was. One of the most beautiful moments of my life. Devastating, but beautiful.

With my mother in 1964 (age 10 months)...
...in 1976 (age 12)...
...and in 2014, in her nursing home, before we both got ill

The most important thing a mother can give her child is absolute and unconditional love.

(And, I suppose, a father - but I wouldn't know about that.)

You may clash, you may argue, you may get annoyed, but the bottom line is that your mother loves you no matter what you do. My mother may not have liked everything we did - she may, at times, not even have liked a daughter very much - but she always, always loved us. Wanted the best for us. Put our needs before her own.

That is a solid foundation for living your life: knowing that you are worthy of love. I have found that the foundation doesn't crumble when the builder dies.

Now that my mother is gone, it may be expected that I miss that love; a hole left behind. But instead, a hole has been filled.

Perhaps this is especially so because I have been ill with cancer. Had my mother been alive, I would have had to hide my low moments, my illness, my distress.

But I find that now she has died, I can simply summon her. I don't need it often, but sometimes, when the day is bleak and the bones are weary and the tears are near the surface, I find myself whispering, Mum, mum, I'm so ill.

And there she is, sitting on the edge of my bed.

In life, my mother could sometimes gloss over my problems or concerns, try to make helpful comments, suggest a bike ride (her cure-all for all woes) or, failing that, a better hairdresser. But if something was really serious and it was clear that no amount of cycling would solve the situation (a miscarriage, say) she would simply be there and acknowledge the pain. Oh my child. That is terrible.

That's what she does now.

That's why I don't really miss her: I don't feel that I have lost her.  Not really. I feel as if I have found her. She has been with me throughout my cancer treatment.

She has been more  present to me in recent months tha she has been for years and years.

There is another hidden gift in all this. Whenever I feel guilty about not being able to do things for my children, being in bed or in hospital or just stranded on a chair, I think how in the end, that mattered most between my mother and I was how much she loved me. Not how much she did for me: simply, how much she loved me.

And then I know that however ill I might be, I can still build that fundamental foundation for my own children.

I don't think I have finished grieving. Perhaps I haven't even started grieving properly, but am just delaying things until I am better. When I think of my mother properly, I feel so sad that she is no longer here. Sometimes, that makes me cry. 

But I also feel warm, filled with love and gratitude. And I know that the day will come when I think of her, perhaps hearing a strand of Jesu, joy of man's desiring or looking at a sunny day that would have made her jump on her bike, and I will smile, and smile.

There she goes, my mother!

Christmas can be hard for those who are missing someone they love, and especially those who have lost someone this year.

I hope that this Christmas, you too will be able to think with a smile of the people you love, past and present, who are the foundations of your life.

I am now going to take a break from blogging until after the New Year.

HAPPY CHRISTMAS EVERYONE, and thank you for sticking with me throughout this turbulent year.

Monday, 22 December 2014

88. The bone scan triumph

I wasn't going to bother telling you about today's scan, because scans are thirteen to the dozen if you're a cancer patient. This one was to check my bone density, ahead of the years of hormone treatment that will follow the radiotherapy. The hormone pills can play havoc with your bone strength, apparently, so your skeleton needs to be up to scratch. 

But both the trip to the hospital and the scan itself turned out to be such a triumph, I can't resist a bit of boasting.

For starters, I walked to the hospital.

It's 3.6 miles (4,2 km), exactly a tenth of a marathon. Could I do it? Off I set, with my brand new step counter and my brand new shoes. About 45 minutes and 5,200 steps later, I arrived, my head itching with a sweat rash.

(Note to self: wearing a non-cotton beany hat when exercising is a mistake)

I had planned to arrive well ahead of my appointment, so that I could wipe away the sweat and get my breath back, but Bone Scan Man was waiting for me. A nice chap with a strong Polish accent, making me wonder, as usual, where we would be without all these fantastic immigrants. (I suppose I wouldn't be here either, come to think of it.)

Five minutes later, I was stretched out on the scanner, a soft pillow under my head. Aaaaahhh. LOVELY.

This probably wasn't the standard reaction to getting scanned.

"I've just walked all the way from Clapham," I offered by way of explanation to Bone Scan Man, who was hidden behind a screen. "It's good to lie down. Take your time, I'm fine lying here."

Bone Scan Man's head emerged, surprised. "I thought you've had chemotherapy?"

"Well, yes, but it's finished now."

"When did you finish the course?"

"Just over three weeks ago."

His eyes widened. "Three weeks ago?! You look amazing. Fit and healthy. I'm telling you, people don't usually look like that after chemotherapy. Looking at you, you can't tell."

"Hm. Apart from having no hair, you mean?"

"Well no, it could be a... a style."

I laughed out loud at that. HA! Like a fashion statement?

"Yes!" he said, and he wasn't joking. "Exactly." And then, picking up a huge cube, "I've got something even better for you now."

He wasn't half wrong. The cube was put under my lower legs, keeping them raised in a table-top position. Wonderful. How relaxing. The scan was disappointingly quick, but Bone Scan Man let me stay like that whilst he looked at the results.

And? What was my bone density like? Some of the chemo drugs, he explained, really affect your bones. I think that includes mine. It has felt like it, anyway, with my skeleton turning into overstretched rubber. It's only just reclaimed its usual sturdiness, but it still aches a little. (So do my muscles. Walking all this way required some gritting of teeth, but once they'd been gritted, it was OK.)

"Good news," he said, peering at the graphs and the picture of my hip bones on his screen. "Your bones are fine. In fact...," he peered some more, "it's well above average for your age group. You have the bones of a 30 year old."

Well, that's made my day. I attribute it to being raised on vast quantities of milk, cheese and bikes. (Thank you mum). In fact, I was so inspired by having a skeleton that's several decades younger than the rest of me, and I'd had such a lovely rest underneath the scanning machine, that I ditched the go-home-by-bus plan and started walking back to Clapham. I only got halfway, but still.

Just before getting on the bus, I popped into my favourite haunt, the sewing shop. I have never gone bare-headed out in the street, or in public places, not wanting to frighten the locals. But now, my poor head was so hot and itchy that I took off my mis-judged beany hat.

Nobody looked at me. I was almost sorry, because if they had, I would just smile back at them with confidence.

That woman with the steaming, shiny scalp and the rosy cheeks, browsing the fancy fabrics?

That's not cancer. She is just a Fashion Queen.

Never mind the scan, just let me rest my bones...

It is now official. Owl has no bones at all.

Sunday, 21 December 2014

87. The REAL end of chemotherapy

Well done, you've finished the chemo! people said to me after the final drop of poison had dripped into my vein, three and a half weeks ago. You must be so pleased!

But it's hard to feel pleased when you're laid low, which you are, in the post-chemo weeks. I knew in my head that the worst was over, but it still felt bad. You, faithful readers, know all this. The deepening exhaustion that follows each bout of chemotherapy; the tears when things just don't seem to get better. 

Only now do I begin to realise, and believe, that the chemotherapy really has come to an end.

Since the beginning of August, "recovery" meant: hide yourself away during the worst of the side effects (about ten days, usually); then take a deep breath and keep going, because you have to recover just enough to cope with the next dose, which is just around the corner. It's always - always - just around the corner.

Perhaps that's one reason why I felt so low and weepy recently. I think that in my mind, I had to be better three weeks after my VIP session. You always have to be better three weeks later, because that's when the next blow comes along. So you do your very best to stay positive, because if you don't, you just can't cope with another chemical attack. But it gets harder every time, and recovery takes longer every time. I started to wonder whether I'd make it to the three-week-date. Wouldn't I still be too exhausted?

This time, the magic three-week-date came and went. It was four days ago, and it heralded a subtle but significant shift. It was only then that the end of chemotherapy became real.

No more chemotherapy. 

There I was, feeling too tired to do much, but this time, it didn't matter. If I had needed eight cycles (as some women do), I would undoubtedly have pulled myself together, taken that deep breath, put on my smile, gone back to the VIP lounge, here's my arm, I'm ready. You can force yourself to be ready, if you have to.

But I don't have to. Not anymore. So the recovery and the tiredness take longer, simply because that's OK now. And boy, the relief! That feels good! It didn't, three weeks ago, because my body didn't quite believe it. But now, hurray and hallelujah, I can just sit back and watch my energy seep back in, and not worry that it's going to be knocked out of me again by an ever-imminent trip to the VIP lounge. 

(You may note that I am conveniently ignoring the radiotherapy-induced tiredness that I've been promised. I just can't believe it will be as bad as the chemo. Famous last words perhaps, but hey, just leave me with my illusions for now.)

Slowly, slowly, things are getting better.

Every day, I can sit up a bit longer, walk a bit further, talk a bit more sense, do a bit more Christmas shopping.

I am clawing back my old life.

Yesterday, I picked up my guitar for the first time in, oh, months and months. Everything needs building up again. My calloused fingers have softened with the non-playing, and softened even further with the chemo-induced skin-peeling. One song, and the guitar strings were imprinted deeply and painfully on my baby-soft fingers. Never mind: my muscles will strengthen. My hair will grow back (one day... at the moment I'm still losing it). My fingertips will  harden.

I almost cried, sitting there, plucking the strings and singing. Singing! I can get through a whole song without fainting! Oh, the joy music-making can bring.You know what? I'm going to sing in church tomorrow, guitar and microphone and all! Before I could change my mind, I emailed my fellow musicians with this plan. 

And I did it, this morning. Ave Maria and Oh come oh come, Emmanuel. And unlike last time, I didn't collapse. I cannot tell you how wonderful it was to be back playing music and basking in everyone's delight to see me.

Last night, I went to a Christmas drinks party. Haven't been to a party since the spring. I needed an afternoon snooze in order to manage it, but still, it looks like I don't have to keep saying Sorry, I can't.

(And the compliments keep coming. You look wonderful! Nice skin! Nice scarf! Nice everything! I don't know how you do it! I can tell them how it's done: a steroid-induced moon-face and a make-up lesson combine in covering up cancer-induced misery. But it's nice to hear, all the same.)

The thought of doing the MoonWalk has really inspired me.

It is giving me hope and something to aim for. The Night Owl Team has grown to 12 walkers, with more people planning to join or sponsor us (which you can do here... hint hint), so I can't let the side down. I've even bought myself a new pair of walking shoes.

These shoes are made for walking...

So here I am, facing a rather lovely Christmas break because there is nothing to worry about.

I look back at 2014 and see some pearls shining in the mud. I won't go as far as saying that cancer has been A Good Thing. It is never a good thing. It's bloody awful. I would never, ever choose to have it. I wouldn't wish it on my worst enemy.

One day, a while ago now, I made the mistake of looking at blogs of other breast cancer patients. Mistake, because those blogs absolutely don't help me have a better understanding of my own situation. I don't really want to hear other women's stories, because my own is quite enough, thanks very much. But that day I couldn't help myself, and once you start blog-browsing, it's rather hard to stop.

I found the blogs that were full of Cancer has been a wonderful thing to happen to me! I have discovered what matters in life! especially annoying, however true I know it is that cancer helps you (re-)discover what matters in life. I can think of better ways of discovering such truths.

I am saying this to validate the rotten feelings of other breast cancer patients reading this blog, before I dare go on to say...

...there have been definite pearls, in the shape of the love and support I have received from family and friends and even relative strangers. 

One woman's response to another blogger has stayed with me, because it was so very sad. Sadder, almost, than the blogs by women who are looking at incurable cancer or even imminent dying. (Warning to other women with breast cancer: Do Not Read Such Blogs!). Here it is.

"I am almost 69, live alone, divorced, childless and - unlike most bloggers it seems - I don't have the requisite army of friends and family waiting to rush to my aid! All the self-help books and general info seem to stress the importance of a support network, but surely there must be SOME folk out there who don't have one? Friends are ok for one-off stuff, but regular visits? Not really. It's bad enough having to deal with this vile disease without having anyone to rely on. People tend to make vague promises but don't follow through, so I will likely have to rely on paid professionals to help as I daren't assume anyone is going to step up to the plate! It's a bit difficult to feel positive or hopeful right now."

I look forward to Christmas, knowing that I am loved, and that I have not had to face this devastating disease on my own.

Last year, I might have hoped that to be true. Now, I know it. How lucky is that?

Wednesday, 17 December 2014

86. The day I got a tattoo

Yes, I thought that might get your attention, but I'm afraid the title of this blog post is as exciting as it gets.

I know that some women do get spectacular tattoos after having a mastectomy. I've seen them on the internet. Like these ones, for example.

But whilst getting such extravagant tattoos is clearly right for some women, it isn't for me - in the same way as getting your breast reconstructed is right for many women, but not for me. I'm more of an au naturel kind of person.

My tattoos (four of them, to be precise) are tiny black pin pricks to indicate where the radiotherapy beams should go.

That's what this week's appointment at the cancer hospital was for. I needed to be poked, measured, marked, scanned (to be sure that the marks were in the right place) and finally, tattoo'd. When I have my daily radiotherapy in January, the beams have to enter me in exactly the same place each time.

So I now have a permanent ballpoint mark in what used to be my cleavage, one on either side of my chest, and one below my collarbone. You can barely see them. They are rather lost among the many other spots and dots that seem to accumulate with, shall we say, seniority. But no matter: I can now rightfully claim that I've been pierced with inky needles by a professional tattooist.

It goes without saying that Owl has undergone the same procedures. The radiographers said that he was the first ever owl they have ever scanned and tattood. Here is the evidence.

Owl in the CT scanner 

Getting ready with the black tattoo ink

Dot marks the spot

This Radiotherapy Planning Appointment was, I am glad to say, a positive experience.

Unlike the previous time at this hospital, when I was subtly robbed of my personhood, I was treated in such a personable way that all was forgiven and forgotten. It helped that I was determined not to be lost - and if I was, I was going to ask for clear directions and instructions. So I approached the first receptionist and told her that I probably needed Radiotherapy Downstairs, yes, I know how to get there, thank you. I approached the receptionist at Radiotherapy Downstairs and told her why I was there; she gave me almost-clear instructions about how to get to Reception Desk Number 3. I did get lost but asked a passing porter, who was very helpful.

Once there, I was called in almost immediately by a very friendly radiographer. "Mrs Tuffrey?" Not an Eye-reen in sight, so I knew it was definitely me. When he did ask, after the necessary question-and-answer session, whether it is OK to call me Eye-reen, I thought I'd better point out that actually, it's ee-RAY-na

After that, everyone called me by my proper name. A-ma-zing. Such a small thing, making such a difference. Friendly Radiographer sent me back into the waiting room with clear explanations: "You have to wait for your CT scan, where they will check and mark the right place for the radiotherapy beams; there is one person ahead of you; it will take another 20 minutes or so; this is where you can find the free coffee."

Well, that had me settled comfortably. And when it was my turn, the other radiographers not only knew my name: they also knew all about Owl. Friendly Radiographer had told them everything. Full marks to the lot of them.

They are rather a cheerful lot, these radiographers.

There were two of them in the scanning room. They were like a chirpy double act, explaining to me what was involved (lying bare-chested on the trolley with my arms up in stirrups, mimicking the radiotherapy position), then standing either side of me, poking me with their hands, feeling for ribs and goodness-knows-what, calling out numbers, trying to mark the right spots.

About here, do you think?
Up a bit, perhaps.
It's nine centimeters.
I'd like it to be a bit more.
Ten centimeters, yes, perfect.
I'm happy with that.

They sounded oh-so-positive and confidence-inspiring. It was a bit like being at a jolly art session in a kindergarten, with me as the canvas. Out came the felt tips to mark large crosses on my chest. Out came some sticky dots to put in the centre of the crosses, special ones that show up on the scan. Out came the scissors and a length of wire, to stick across my scars with a bit of tape.

The wire intrigued me, so I quizzed them about it. This is what they do: making an educated guess when marking where the spots should go; then checking on the scan (which shows up my ribs and suchlike) whether they are bang in the right place. But they can’t see the mastectomy scar on the scan, and as any leftover cancer cells are most likely to have congregated near the scar, they need the metal wire to show them where that is.

So now we know.

Cheerful Radiographer Duo disappeared into the glassed-off control room, pressed the buttons to send me in and out of the scanner, came rushing out once to adjust one of the sticky dots ever-so-slightly (“we are perfectionists here”), and that was that. Ready for the tattoos. It's all very technical and precise.

The actual radiotherapy sessions will be with a different team.

"But don't worry," said one half of the Duo, "you'll have to go every day so they really get to know you."

Have they read my blog? Because she added one more thing, without any clues from me.

"I'm sure they will even learn how to pronounce your name."

Sunday, 14 December 2014

85. How to turn a person into a nameless patient

It is 9.30am. I walk into a leading cancer hospital feeling confident, strong and in control. I am Irene.

I have come to discuss with the doctor whether or not to have radiotherapy. My husband has come with me, wearing his suit and towing a smart little case on wheels because he has to fly off on a business trip after my appointment. He looks the part as the companion of someone confident, strong and in control. 

By 10.15am, my confidence has dissolved. I am Irene no more.

I am an anonymous patient. My personality has crumbled, the pieces strewn across the shiny hospital floor. Anyone can come along now and kick them into a corner.

It is only when the doctor finally arrives and picks up the pieces, addressing me as if I am Irene, a whole person with a brain and a unique story, that I slowly begin to reassemble myself. Who am I again? Ah, yes, I remember. I'm me, not just any old patient.

I am due back at this hospital tomorrow morning. I feel fairly strong again, and this time, I will try and hold on to myself.

I will not be cowed by receptionists who give you the feeling that you ought not ask any questions, however bewildered you are by the unfamiliar procedures, because they know what they are doing and you should just trust them. Not bother them with anxious questions, am I waiting in the right place, have they forgotten me? My wife is due at another hospital at noon, will she get there in time?

Then, in January, I will have to go every day. I will undoubtedly get to know the routine. I'll know exactly where to go. I'll be a seasoned patient and I may even have a name. If I'm really lucky, they will know how to pronounce it (ee-RAY-na!).

I will forget that very first day.

But it is worth remembering how it happened, the rapid deconstruction of my personhood. So let me take you back to that morning.

It isn't for lack of facilities. This is a world-famous state-of-the-art cancer hospital. The place looks clean, organised, efficient. Fragrant coffee shop, gleaming floors, fresh paint, clear signs everywhere. Radiotherapy Downstairs. (Well, it doesn't say Downstairs, but there's a clear arrow pointing down the stairs.)

When we finally make it to Radiotherapy Downstairs, the waiting room there is spacious and calm, with inviting comfy chairs. It even has a machine that spews out free coffee and hot chocolate. There is a huge sparkling tropical fish tank, perfect for those who don't want to look at their shoes, or their fellow patients, or the bountiful leaflets on The Long Term Effects Of Pelvic Radiotherapy On Men.

My appointment is at 10am.

We walk into the hospital half an hour early, because I have telephoned the doctor's secretary to ask how long it will take. Will I make it to the lunchtime appointment at my own hospital? Oh yes, she had said. But come 20 minutes earlier, because you have some forms to fill in first.

"Take a seat," says the receptionist, gesturing broadly towards the assorted chairs. "There are a couple of people before you."

What, wait here? How about Radiotherapy Downstairs? Better not ask. She seems so sure of herself, and she's taken my appointment letter so I'm without evidence that I need Radiotherapy Downstairs, and anyway, we still have half an hour.

I choose strategically placed seats from where I can observe proceedings. Time ticks by. Ten minutes. Fifteen minutes. Twenty minutes.

"I'm going to ask again," says my husband, concerned that I'll miss my 10am slot and he'll miss his plane. (Not an ideal day, this, but the referral letter only came in the post one working day ago, so we didn't have time to arrange things better. The short notice is a bit annoying, as I've been asking for this referral for the past two months. But hey, let's just be delighted that we are here at last.)

"No, wait," I tell my husband, "I think I've figured it out." Clearly, the system is so obvious to the receptionist that it doesn't need explaining, but it isn't obvious to me, so some figuring out is needed. At ten minute intervals, someone is called into a room that says Registration. I think we're next. Perhaps this is where the form filling happens?

Ah, yes, I am right. Someone emerges from the room and calls out, Eye-reen Tuffrey!

(I don't think the system was clear to the crying woman who went in before me, either, nor to her bewildered looking husband. At least I had a head start, with my confidence-on-entry.)

In we go. ("Should I come with you?" my husband asks. I don't know, because I have no idea what will happen in that room. We play it safe and go in together.) Tiny room, two empty chairs. Sit down. The woman slides in behind the desk.

Nurse? Administrator? No idea. She hasn't introduced herself, or told us what we are doing here.

Only doctors, I have found, unfailingly introduce themselves and explain what their job is.

Utter silence for the next two minutes or so. She looks at her computer screen, types things, looks at the forms lying on her desk (mine?). She doesn't look at us. We look at each other. Should we talk amongst ourselves? Would she notice if we did? I'm glad I'm not alone, because at least in my husband's eyes, I am important.

Finally, Silent Woman looks up and hands me my form to fill in. Including a consent form for "my tissues" to be used for medical research.

"You understand what that means, don't you?" asks Silent Woman.

I smile and nod, yes of course, although in truth I am puzzled because hasn't everything that needed cutting out of me already been cut out and (presumably) incinerated? I sign anyway, and then I spot in the small print that "blood samples" are also tissues, so perhaps I can help advance medical science after all. And at least I did understand that they weren't talking about the tissues in my handbag.

I wonder whether the woman before me has managed to read all this through her tears.

Now we're done and ready for my appointment. Silent Woman insists on taking us to the lift and pressing the Down button, although the one place we would have found with confidence is Radiotherapy Downstairs, courtesy of the clear arrow. And when the lift takes ages to come, we decide to take the stairs anyway, following that arrow. It feels strangely rebellious: not taking the lift = not doing as we're told.

I present myself to the next receptionist and settle down by the tropical fish.

"I think someone is calling you," my husband says after a decent wait.

Yes, now I hear it too, a repeated: Eye-reen Tuffrey? I go off in search of the voice and find its owner around a corner. Probably a nurse, but again I'm not sure: no introduction or explanation. I rush back to my husband, "it's my turn," and he gathers coats, bags, suitcase-on-wheels. Unnecessarily, it turns out, as I've only been summoned to stand on the scales in a far corner, my husband looking rather forlorn, like an overloaded coat stand.

"Weight and height," mumbles Probably A Nurse. I step onto the scales, back turned to the measuring post attached to it. I feel a push against my shoulders. What?! Ah, she's pushed me off, before (not after) offering "Other way!" as an explanation. Oh, I see, turn round. First weight, then height. I should have guessed. Silly patient.

Remembering this now... started with a grin (Ha! Wait until I report this in my blog!) but when I'm actually writing it down, I suddenly have to swallow back the tears. They seem so small and insignificant, all these things. Not worth complaining about. Not even worth mentioning.

And yet that is how it happens, the disintegration of the self, bit by bit. Being called into this strange new alien world, this world that is the radiotherapy hospital, and not being helped to understand how it works. Being made to feel silly because you don't quite understand it.

And that is me, Irene the nurse, who speaks Hospital Language. When I use that language here, ask the receptionists questions, ask the nurses who they are, I am wordlessly put in my place. Don't you worry, dear, is the unspoken message. We know what we are doing. We have an excellent system here. They are polite, these staff; the message is a subtle undercurrent.

It is why I am sometimes tempted to keep my professional badge around my neck when I go for appointments at my own hospital (although I never do that on purpose, but sometimes, when I pop down for an appointment during a day at work, I forget to take it off). When receptionists think that your are a staff member rather than a patient, they treat you differently. With more courtesy and respect.

The last straw is being put into a small clinical room by Probably A Nurse.

"Wait here for the doctor," we think she has said, before going out and closing the door, leaving us without a view or a clue.

We sit down on the hard chairs, confused, staring at the examination bed and the syringe trolley. Five minutes. Perhaps they've put us to wait here, rather than by the lovely fish and the free hot chocolate, so we'll stop causing trouble?

Ten minutes. Hm. 

"I'm going to ask," I say, trying hard to hold on to being someone with a name. Irene is my name.

"Let me do it," says my husband, and off he goes.

He returns with a resigned smile, shaking his head. "They're perfectly friendly," he says. "It's not that they tell you to just wait and be quiet. It's just the feeling you get."

And then, thank goodness, the doctor strides in, sits down on the examination bed, and talks with us (with us! not to us!), restoring me.

None of this registers on the scale of hospital disasters.

Nobody was expressly unkind or unhelpful. I bet the receptionists would have described themselves as very kind indeed. And as for Silent Woman, and Probably A Nurse, well, didn't they just do their job and get the necessary results? Forms filled in, consent obtained, patient weighed and measured and ready for the doctor.

But I do wonder whether a very simple change in attitude would transform the patient experience. Receptionists, I have found, are crucial in helping patients cope with new and worrying situations.

So here, for all it's worth, are my tips for hospital staff. Any staff, but especially those on the front line.

1. Look at your patient and smile. Please. And also at their partner/daughter/friend. Please. I know that's a lot of smiling to be done in a day, but I'm telling you, it makes all the difference. Especially if you are a receptionist.

2. Treat every patient as if they've never been here before and are lost. You'll find out quickly enough if the patient is experienced and not at all lost. Better be safe than sorry (and that's the patient I'm talking about, who will feel un-safe and very sorry if they feel lost. You can help!)

3. Introduce yourself. Introduce your job. Tell the patient why you are seeing them and what you will be doing. You have done this (whatever it is) a thousand times. Your procedures are blindingly obvious to you, but believe me, no procedure is obvious to the uninitiated.

4. Perhaps more important than anything, this: your procedure may be the same a hundred times over; but you will have a hundred different patients, and that turns it into a hundred different procedures. Every patient has a different story. Please remember that. Please see all patients as the unique individuals that they are.

Here is the good news.

One friendly and helpful receptionist, one personable nurse, can transform a patient's day. That could be you.

Imagine that: a hundred patients a day; a hundred transformations. Marvellous.