154. A patient must be patient

 I need a bit of revision on this crucial How To Be Patient course. It comes in three modules:

1. A patient must wait patiently in waiting rooms.
2. A patient must wait patiently for test results and doctors' verdicts.
3. A patient must wait patiently to get better.

Let's go through them in turn.

1. Waiting rooms

This, I am delighted to discover, is an outdated module. I can only think it's thanks to Covid, although I'm not sure quite how that has made it consistently possible to see me within five minutes of the appointed time, whereas before I'd have to settle in with my knitting. So, moving swiftly along to module 2.

2. Test results

I really thought I'd got better at this. One day last month, the hospital sent me five letters simultaneously (clearly, Covid hasn't quite managed to sort out a way to reduce spending on postage). Each contained instructions about a different trip to hospital. (There were a couple of other trips too, including a Covid test, but for those I was summoned by phone).

22 March: check that I'm fit for surgery

31 March: get breast injected with something radioactive

1 April: get operated

8 April: get wound inspected

13 April: see the surgeon in the Breast Clinic.

That last one... that's the one I was waiting for. That's when I was going to be told whether anything dodgy has shown up under the microscope. That's when I'd find out whether it's onwards and upwards from henceforth, or whether it's back under the knife, the radiotherapy machine, perhaps even (gulp) the chemotherapy lounge.

I hadn't realised quite how much my life has been on hold until that pivotal verdict. I thought I was fairly relaxed about it all, perhaps more or less convinced that it'll be the Onwards & Upwards possibility. But you never know until you know.

I much prefer to attend tedious appointments (injections, tests, operations) on my own, but for anything involving news & information, Husband comes along as it's not just news for me, it's news for both of us. So, we duly turned up for my 11.50am slot and were called in by a junior doctor at 11.51 (see? No need for module 1). When she took us past the Chief's office to a room all by herself, I knew it was Good News - in the same way I knew it was Bad News when on previous occasions the breast care nurse called us in and accompanied us to the surgeon's office, as such reinforcements are usually needed for bad news situations.

What I hadn't counted on was that it was simply No News. The lab results hadn't come back yet. Nothing more to say. The Chief will see you next week instead, or actually, let's make that a phone call.

It was a lovely doctor, but she didn't know the answer to any of our questions (to her credit, she didn't make up any answers either, but wrote them down with a promise to pass it on to the Chief). Questions like:

How does hormone treatment work? Is the job of those pills to prevent the cancer coming back in your breast - in which case, is there any point in taking them, now that I have zero breasts? Or is it their job to prevent any cancer cells with travel plans? Also: Now that I've got two breast cancers under my belt, would it be prudent to have genetic testing? Two daughters, you see. And what is the best way to cope with all that spare fluid sloshing around behind my new scar?

It was a case of all dressed up with nowhere to go. I barely had the energy to sit upright on the bus home. I collapsed for the rest of the day, not just with the physical effort, but also (I think) with the distress of having to wait yet another week for those possibly life-changing results. Tips on how to cope with that kind of waiting, anyone?

3. Getting better

It's not easy for us, women of the multitasking generation, to go with the flow and have NOTHING on the must-do list. Now that I'm two weeks post-surgery, I realise that Do Nothing was in fact on my to-do list, but that was last week's list. For this week, and the weeks after that, there were things like Go for longer walks and Sew a new wardrobe and Sort out photographs and even (in week 5 perhaps) Write that paper you won't have time for once you're back at work.

You see, even at times like this, there are expectations. That's my own expectations, by the way - everyone else (including my colleagues and manager at work) instructed me to "take as much time as you need" and "don't worry about anything". They are right, of course, but will I listen??

Because here I am, worrying about my inability to do Restful Things, like sewing, or reading a book every day, or talking to friends.

At least I really do know now that it will get better. But when? That is not under a patient's control. Last time, I was properly back at work after a year but it took about three years before I was truly back to full health and energy. I don't even dare think about that now.

Here endeth lesson 3. I'm going to have to lie down after all that. I won't be back on this blog until next week, so you'll just have to be patient. Happy Easter everyone!

Note to self: Be patient...

123. The C-Word

Did you watch it? “The C-Word”,  a BBC docu-drama based on the blog and book by Lisa Lynch. 

Lisa was a freshly married 28 year old when she discovered that her nasty lump was an invasive breast cancer. She died in 2013, aged 33.

The film was broadcast on 3^rd May. If you haven’t seen it, you may still be able to catch it on iPlayer. It’s completely brilliant.

There is a surreal moment when Lisa and her husband sit in a counsellor’s office, trying to get their heads around the news that the cancer has come back. No more chance of a cure.

“There is a book,” the counsellor says soothingly, producing a copy out of her cupboard. “I think you’ll both benefit from reading it.”

Lisa and her husband stare at it in horror.

“What’s wrong? What have I said?” the counsellor wants to know.

Well. Ehm.

“I wrote it,” Lisa finally offers.

Ah. Oh dear.

I’ve read that book.

It was also recommended to me at the hospital, before I had my chemotherapy.

“You must read it,” my breast care nurse had said. “It’s brilliant. The way she copes with it all. Oh, and they are making it into a film. The BBC came to talk to me.”

Lisa had been one of her patients. I duly started the book. I was entertained, but it was grim too, all those horrid bits about chemo. Still, it would be good to see how she got through it.

I’ve blogged about this before. My horror when I (like that counsellor in the film) found out that Lisa’s story didn’t end when the book ended, with the all clear. It ended in a funeral.

It took me until after I’ve got through all my treatments before I could read other cancer patients’ blogs and books again.

The book made me think how differently we all cope with having breast cancer.

Lisa fumed her way through treatment: exactly right for her, but not something I would (or even could) do. It struck me again when I read other cancer patients’ books. How the person we are defines the way we cope with our cancer. (After my treatment, I read three such books in a week: John Diamond, Kate Granger, Philip Gould… it seems that you have a better chance of getting published if the cancer is killing you). 

It annoys me when people (especially nurses) say things like She coped with it so wonderfully (with regards to Lisa) or even It’s brilliant, the way you cope with it (with regards to me).

The truth is, you cope with your cancer the only way you can. If that is by hiding under the duvet for a year, crying all over the shop or moaning to everyone in sight, so be it. When it comes to ghastly life events like this, as far as I’m concerned, you can be as selfish as you like, and others will just have to put up with it.

So Lisa swears her way through it all, defying cancer’s hold on appearances by buying wigs that cost more than £1000 and having a beautiful breast reconstruction. If anyone understands that my choice to keep my flat side is exactly the right one, just watch that film and you will see that Lisa’s choice to keep her cleavage is also exactly right.

So, reading Lisa’s book I was struck by our differences.

But watching the film, I was struck by the similarities.

Not just in the way we both used blogging as a coping mechanism. There were so many moments when I wanted to laugh and cry at the same time, oh god yes, I remember that.

The huge arrow they draw on your breast to make sure they don’t chop off the healthy one.

The things people say to you (“My cat died of that” – yes, I’ve heard that one too).

The annoying way in which some people insist that cancer is a gift. Yes, I know there is beauty to be found everywhere, but I would never, never, never insist that a cancer patient should look for it. Here's a lovely present! Happy birthday! As Lisa’s friend despairs, “No-one ever says that a vaginal prolapse is a gift.”

Lisa wanted to re-dress the balance, and that’s why she wrote her blog and her book. Tell the world what it’s really like to have cancer. And yet, there was a moment in the film that is not in the book (they must have got that from talking to the family afterwards), and for me, this was the biggest tear-jerker. Because it made me see more clearly than ever that however much you try to tell the world how it really is, the real horror of cancer is seen only by your family. Not even by the hospital staff: just by your family.

To the outside world, and probably even to her blog readers, Lisa is defiant, gobby, bouncy – yes, she writes about being depressed and about not recognising herself when she really cannot be positive, but still, there she is. At her brother’s wedding, looking spectacular, right at the end of her chemotherapy.

How?

By huge effort and determination. She had her eye on that prize all along. “If only I can make it to my brother’s wedding.”

I think back to my determination to go and chair a conference at the end of my chemo. (Honestly, couldn’t I have chosen something better? But there were no weddings on my calendar.) So there I was, looking good (so people told me) despite having struggled through four months of relentless chemo. And like Lisa, I thought it was just wonderful wonderful wonderful that for once, Lord Cancer wasn’t the centre of attention and the sole topic of people’s conversations with me.

“I don’t know how you do it” - There was plenty of that.

But then there is Lisa, lying in the bath, looking desperately tired.

She calls her husband in tears. He rushes in, breaking open the locked door, “What is it?”

“I can’t get out,” she weeps.

Well, that had me in tatters. The husband lifts her out of the bath, this weak woman who is nothing, nothing like the person she really is.

I think this is why I really didn’t want people to come and see me at home during my treatment, because such weakness and vulnerability is just too difficult to share. I hated inflicting it on even my nearest friends. You try and sit up for half an hour, making dinner table conversation, but within minutes your head drops onto your arms because you simply cannot hold it up. And before pudding arrives, you just have to sign off and crawl back upstairs on your hands and knees.

You cannot really blog about that. Who would want to read this? you wonder. Plus, by the time you have enough energy to do the writing, you are able to put an entertaining spin on it, softening the blow for your readers.

I was devastated by Lisa’s Bath Moment, because I recognised her despair at the fact that her husband had turned into a carer. (Her husband, of course, didn’t see it that way. For him, being a carer was an integral part of being a lover. But try telling that to a needy cancer patient who has lost all her strength and all sense of control.)

My personal Bath Moment wasn’t quite as dramatic, but it was certainly memorable. I call it my Stir Fry Moment.

The Stir Fry Moment

Exhausted by chemotherapy. Determined not to rely on my family for absolutely everything. Surely, surely I could cook my own stir fry? Empty a packet of chopped vegetables, empty a ready-boiled packet of noodles, throw in some sauce. I was too tired to stand up, but I had put a stool by the stove, so what could go wrong?

Lifting the spatula and stirring, that’s what could go wrong. I simply didn’t have the strength to stir all these ingredients together. I tried and tried again, but it was no use. The children were at school (otherwise I would have called on them and called it Parenting – look, I’m teaching my child how to cook). But my husband was at his desk upstairs. I hated calling him, yet again, for help. Of course he didn’t mind. But I did. I laughed about it (Hahaha, look at me, I can’t even stir my own stir fry) but what I really thought was, What on earth has become of me??!!

I still get frustrated by my ongoing lack of energy.

Yesterday I came home from work early, as the simple effort of cycling into the office and sitting on a chair for six hours all but floored me – and that’s four months after the end of treatment! Will it never end? I'm taking a day off today, trying to gather strength for tomorrow's trip to Copenhagen (yet another conference; this time I'll be gone for four days).

But then, after a bit of a lie-down, I was back at that stove, cooking supper not just for myself but for three hungry school children. Stop whinging! I told myself. At least you can Stir Your Fry.

During my Stir Fry Moment, it was hard to believe that such family cooking could ever happen again.

So when people ask me how I am, I smile at them and I say I’m really well! I can do everything again! I don’t tell them (too much) about my frustration that I still need so much rest. I don’t tell them that I still don’t quite recognise myself.

Lisa’s Bath Moment brought back to me how horrid it all was and how far I have come. The fact that she only had two good years before her cancer came back is just too devastating for words.

At least I don't expect that to happen to me. I truly don't. And for that, I am grateful.

101. The IKEA friend

More observations from the cancer waiting rooms and wards:

The friend, the husband, the daughter.

They come in all shapes and sizes, the people who come along with the cancer patient. There is usually a certain "match" with the person they are with.  I have been as touched and intrigued by them as I have by my fellow patients.

Here we go, shamelessly stereotyping.

The elderly husband... He is as bewildered as she is, but both the husband and the wife sit quietly through their ordeal, side by side. They rarely speak; they don't need to. He doesn't leave her. He might have brought a newspaper, attempt a crossword, but you sense that his mind is really with his wife. He carefully puts away her walking stick. She looks vulnerable. So does he, but as you are sitting there looking at them both, you ponder that at least they have each other. They've managed to get through a lifetime of ups and downs together and now they find themselves here, in an alien world that is just about bearable because he is there, she is there. What will he do without her?

The just-about-to-retire husband... They have both worked hard all their lives and now they are on the cusp of retirement. But here he is, with his wife, in the breast clinic. He looks worried and she is trying not to. They had plans and breast cancer wasn't one of them. What is going to happen? They read the leaflets, get a take-away coffee. Once the treatments start and they get into a routine, he will do the crossword, focus on it, finish it. Or, more likely, she'll bring a friend.

(Hm. We're not quite ready to retire, but I think my husband fits this category nicely.)

The young husband... Of all husbands, he looks most shell-shocked. He holds her hand when they sit down. No crossword for him. What can you say? 

The busy sons and daughters... They may be busy, have jobs and children of their own that need attention, but they are faithful. Here they are, waiting with their mother, sitting with her as she has her chemotherapy, because she needs them. She couldn't get here on her own, for starters. They have dropped everything. They may be on the phone to a sibling, giving updates. ("Still waiting.") They ask mum if she wants anything, they go off to the hospital shop, they return with a hospital sandwich and a bag of hospital crisps. Unless they come prepared with provisions. Halfway through, their sister comes in. They give a brief handover, and they're off. As I said: they have a job to go to and children to collect from school.

The daughters of the mother who doesn't speak English... These daughters (they are almost invariably daughters) warrant their own category. My South London hospital has a large Asian population in its catchment area, so I've seen enough of these daughters to be able to turn them into a stereotype. The elderly mother shuffles in with her long thin hair in a tight bun, a warm coat over her sari. The daughters come in twos or threes, or in shifts. They chat and chat (the daughters, that is. The mother only speaks when spoken to.) It can even be quite jolly at times. It's always touching, because they may have busy lives, but they don't let it show. Mother is ill: they give her all the time she needs.

The teenager... A rare breed in hospital, the teenage sons and daughters who sit with their. mother in waiting rooms and treatment areas. They are probably there to provide practical help rather than moral support. They don't speak or look around. For all you know, they could have been waiting at the airport or queueing at a bus stop, plugged into their iPods whilst playing games on their iPads. Love 'em.

I had a couple of these with me - although only one was true to stereotype; the other was reasonably chatty and brought her knitting instead of a gadget.

The supportive friend... Where to start? The friend is less devastated and more practical than the family member. She (it's mostly a she) is equally focused on the patient, but the illness doesn't affect her life quite as much. Unlike the husbands and sons and daughters, she won't need to watch this patient go through the misery of side effects day after night after day after night. So it's easier for her, perhaps, to pull out the stops during this hospital session. If the environment is somewhat alien to her, she doesn't let it show or get her down. She gets on with it, she is helpful, she is kind, she occupies herself or talks quietly: whatever is needed. Marvellous.

I was lucky. I had several of these supportive friends. Thank you kindly.

The I-know-best friend... Thankfully, these are a rare breed too. I've seen a couple and it's enough. I always felt sorry for the patient. There he is, the weak-looking, defenseless patient, marooned in his chair and hooked up to a drip. There she is, the matronly friend, fussing over him, drowning his soft voice with her stern one. Has he eaten well? He must look after his diet you know. And not give up. Acupuncture is rather good, she has heard. Has he tried it? No? Why not? He must.

It's best to have your own supportive friend with you when there is an I-know-best friend about, so you can exchange looks and shake your head imperceptibly. If you're on your own, you just sit there brewing resentment.

The IKEA friend... This is the most puzzling breed of all. The I Know Everything About-this friend. The reason she Knows Everthing About-this is that she has been there herself. I am sure there are many people who have been there themselves and it turns them into a Supportive Friend as described above. The IKEA friend is different. She is determined to let everyone know that she has been there herself. She strides into the waiting room exuding confidence. She owns the place. Hey! says her body language. I am at ease here! I am a member!

What sets the IKEA friend apart is her determination to save not only her own friend (the patient) with her expertise-by-experience, but all the other patients too. Including me. When she talks to her friend, she talks to all of us in the waiting room. It won't be long before she lets us all know that she Knows Everything About-this, because she, too, has had breast cancer. (And she's not afraid to say it out loud. BREAST CANCER.)

The most perfect specimen of this breed was the friend who came along to the radiotherapy waiting room. I was sitting there minding my own business, hot and hat-less after my long walk to the hospital. I can't quite remember apropos of what exactly she started telling us all that she was an IKEA type of person. Apropos of nothing, probably. But there she was, holding forth, her friend (the patient) standing quietly by her side. And suddenly she whipped a photograph out of her handbag and put it under my nose. Look! she said. That was me, a couple of years ago! The photograph showed a group of people congregating around someone's front garden, and one of them was bald. 

You see, this is what puzzles me. What is the IKEA friend trying to say, exactly? Don't you worry about your cancer/baldness/misery, look at me, I have been there, done that, and I've re-assembled myself, and so can you? Which assumes that I am worried about my cancer/baldness/etc, which I am not (well, actually yes, I am, but she is the last person I'd share that with). Or is she somehow missing the feeling of being special that comes with being a cancer patient? Does she feel she has to justify her presence in this place? Or does she genuinely feel that she is being helpful?

Whatever the reason, I am still wondering what the correct response is to a stranger who shoves a photograph of their previous bald self under your nose. Answers on a postcard please. (Or on this blog.)

If there are any IKEA friends reading this, let me tell you: it is not helpful to draw attention to yourself in the cancer waiting rooms and VIP lounges and wards. Because that requires the patients to focus on you, which is the last thing they need. Before you know it, you will turn into an I-Know-Best friend, and then where will we be?

The thought occurs that there is another type of IKEA friend, and I'm afraid I fit the bill. They are not IKEA customers, but IKEA staff members.

The I Knows Everything About-this staff member is also an expert, not through having been a cancer patient, but through having worked in the cancer world. They are doctors and nurses who speak the language. I hope that this only bothers the staff and not the patients. I have spotted them, sometimes, and they usually fall into the Supportive Friend category. You just notice that they know how to work the system and they know what questions to ask. The patient usually seems reassured by her friend's presence. When you get talking to her, she may even nod her head gratefully into the direction of the friend: She's a doctor, you know. 

Here is evidence of my membership of this breed. A friend of mine once texted me to say that she had just been admitted to hospital. Her situation was distressing and I knew that her partner couldn't be there, so I hopped on my bike and went to find her. It was mid-morning. I did the confident stride onto the ward, Look, I Know Everything About-this, I'm a professional. It didn't quite stop the staff nurse from telling me sternly that visiting hours were in the afternoon, but I looked over her shoulder to the ward sister and asserted, Well, yes I know, but don't you agree that a woman needs her friend with her at a time like this? They conceded. Just as well. My friend was in no fit state to advocate for herself. "I'm soooo glad you were there," she said later. "I would just have gone along with the treatments they suggested even though I didn't really want them. I was scared and it would have been so much more awful if I had been on my own."

Which makes me think that there are merits in having an IKEA staff member around. I hope so, anyway.

This week, another friend told me she needs to have a shot or two of chemotherapy treatment.

Not for cancer, curiously, but to help with another long-term condition. 

I was about to offer my company, as this was one of my Supportive Friends who has been to the VIP lounge with me. Wouldn't it be jolly? But as soon as I visualised it, I felt ill and vaguely nauseous. I have managed to sit through all my treatments with reasonable level-headedness, but boy, I don't even want to THINK about going anywhere near another VIP lounge any time soon.

And when I am ready to face that world again, in a couple of years' time perhaps, beware. If I'm not careful, I shall become part of a terrifying species. An IKEA staff member and IKEA customer rolled into one.

I KNOW EVERYTHING ABOUT THIS! I might say to everyone willing to hear it. And I really mean EVERYTHING. You know what? You should read my blog.

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.

82. Saved by my GP

When I look forward, towards the year's end, I see the road of recovery. It has a big sign on it, saying Strength This Way.

I think I've put that sign up myself. It is surrounded by friends and relations cheerfully pointing ahead, go on, off you go, you're all done with the chemo, you must be feeling happy, the only way is up.

Well, that's the problem. I do not have the strength to go Up. That road ahead feels like a muddy slope. Given my tendency to lay down whenever my skeleton refuses to stay upright (when sorting out the washing, say - my younger daughter found me outside her bedroom, merrily stretched out on her pile of clean clothes*), a muddy slope quickly turns into a slippery slope. With me sliding down, not up.

*(a) Yes yes, I know I shouldn't be sorting out the washing. My husband has already told me off. (b) My younger daughter doesn't bat an eyelid at this kind of thing. She had come to show me what she'd made, and just sat down on the floor beside me, so we could carry on the mother-daughter thing regardless.

But when I turn round and look back on the year behind me, it is perhaps not surprising that I feel so utterly exhausted.

These are of some of the things I see.

2 operations

3 trips to A&E
4 hospital admissions

7 scans

8 visits to the chemotherapy lounge (including a couple of visits to sort out infections)

9 bags and 9 large syringes full of Vile Intravenous Poison

33 self-administered immunity-boosting injections
50+ waiting rooms

(That's not even counting 3 emergency trips to Holland, 9 days at a death bed, umpteen phone calls/skype calls/emails, 1 funeral.)

Endless travelling to hospital, travelling home, recovering at home. Physical and mental preparation; physical and mental recovery time.

Then there was a never-ending string of decisions to be made, to be explained (and, at times, defended) to doctors and nursed and friends. Should I be reconstructed/irradiated/wigged/drugged? Should I blog/work/go to A&E? Should I have a mastectomy or sit with a dying mother? (That particular one was definitely the worst of all.)

It’s no wonder my skeleton sometimes won’t hold me upright. Quite apart from the latest chemo-knock-out (and that's cumulative, getting worse with every cycle), looking backwards at that list of body-crushing, life-changing events is enough to make me want to lie down in a darkened room.

But I don’t think that’s the only reason why I felt in no fit state to make my planned return to work this week.

There is something hugely disconcerting about being sent off after the final VIP session and not have a follow-up appointment until two months later.

Actually, it’s not even a follow-up appointment. It’s an appointment to plan the fourth and final part of my treatment schedule that reads (1) surgery (2) chemotherapy (3) radiotherapy (4) hormone therapy. I think (4) is with the same team as (2), but I’m not even sure about that.

So here I am, feeling dreadful, but with nowhere to go.

I’ve had three different consultants: (1) surgeon, (2) oncologist, (3) radiotherapy expert. I haven’t yet met (3), only her junior team member - who was, it must be said, excellent. In fact, most doctors have been excellent. The surgeon was outstanding.

But the thing is, there have been so many of them.

They say that in hospital, your liver goes one way, your bones another, your heart another. You enter a whole person, and out comes a patient in body parts. Well, it seems that even your cancer cells get split four ways, needing four different specialist teams:

• one that cuts them out
• one that poisons them
• one that zaps them
• one that stifles their growth.

You’d have thought that these teams work seamlessly together, and I’m sure they try. But if one team cannot answer my questions that are more within the remit of another team, and it takes months before you get to see that other team, the word "seamless" doesn't really spring to mind.

There are, of course, the breast care nurses. But even these are split between surgical ones and chemical ones: no-one has followed me through.

I was unlucky with Breast Care Nurse 1 (the surgical one). But whilst Breast Care  Nurse 2 (the chemical one) has been warm and supportive, she has also been largely absent; on holiday, off sick, that kind of thing. If you don’t ask, you don’t get. And I won’t ask. What is there to ask? Practical stuff, yes (“Where is my radiotherapy appointment/wig appointment/breast prosthesis?”) although I am now left hanging with a few questions I forgot to ask (“When can I stop worrying about picking up infections and having to rush into A&E at the slightest hint of a fever? When can I go to the dentist again?”)

Once, Breast Care Nurse 2 rang me at home, just a couple of days after my first dose of chemo. "I like to see how my ladies are getting on," she explained. I appreciated it hugely, and I understood her need to see how I was, because people's responses to chemotherapy are so unpredictable. But I haven't heard from her since.

Oh, how I would have appreciated a phone call at the end of the last chemo. Before the distant End Of January Appointment. Better still: regular contact that doesn't need any initiative from me. Because believe me, as a cancer patient you are just grateful for what you get. You don't dare ask for anything more. You know resources are scarce and nurses are busy.

There seems to be a strong emphasis on physical coping. When doctors from the chemo team ask me how I've been, what they really mean is: How bad were the side effects? They ask, because the next dose of chemo needs to be prescribed and you don't want to knock the patient out completely. Now that there is no further chemo, there is no need to ask me how I've been.

I understand that doctors might not have time for the whole patient, only for the cancer cells that need poisoning. But I had vaguely thought that the breast care nurses would pick me up, follow me through. Maybe they, too, simply don't have the time? (Mind you, a five minute phone call once a month would have sufficed.)

I wonder whether, as a competent and smiling patient, I am simply not on the list of priorities. She's fine, she is coping.

I have the sinking feeling that even though I have received intensive and excellent cancer treatment over the course of the past nine months, there is nobody at the hospital who has followed my story.

Nobody who knows me.

The surgeon came closest, but of course she had to hand me on. The oncologist is nowhere near “knowing” me. I’ve seen her three times, including a lengthy assessment-and-talking-things-through session where I thought she got to know our story; but the last time I saw her, it was clear she didn’t really remember me. I had to remind her that I’d had bad reactions to the chemo and that I’d been admitted to hospital (even though she had come to see me on the ward just a week earlier).

Don’t get me wrong: I understand how that happens. I’ve been there myself. You see so many patients, so many families, it can be hard to put names and faces and stories together.

I’ve been in situations where I have sat with newly bereaved families, talking to them for ages, having cared for their dying relative; then, when they walked onto the ward a few weeks later to say hello to the nurses, I couldn’t quite remember the details. But you find ways to remember, and I always tried, making small-talk until they give you a clue and the pieces fall into place. (“So good to see you! Now remind me, how long ago was it…”).

Surely, the patient's notes provide such clues? When my consultant calls me into her office, I would hope that she would at least have a quick read of the notes to remind herself about me.

I remember the absolute lowest point in my dealings with the hospital. I've blogged about it before. I had arranged to see Breast Care Nurse 1, but when I talked to her, she didn't know my exact diagnosis, nor the identity of my surgeon (and she didn't have my notes with her so she couldn't look it up). It took me weeks and weeks to get over the distress of feeling so utterly unimportant.

So here I am, feeling weak and exhausted and rather dazed by this hospital whirlwind that has now come to a temporary halt. (I’m not counting next week’s radiotherapy planning appointment. That’s a different hospital altogether and feels like a new journey.)

I am feeling vulnerable and yes, weepy. I haven’t felt weepy for some time (not since That Wood!), but I feel it now. What I need, I realise, is not just someone with whom I can talk about the wisdom of going back to work.

I need someone with whom I can talk through the whole sorry saga. Me having cancer, what it means, how I cope, why I wobble, what holds me up.

A counsellor perhaps? But no, the very thought of having to explain myself to someone new is too exhausting for words.

I don’t want to go to a Cancer Support Centre either. I’m not sure why not. Perhaps it’s an on-going reluctance to be the recipient of a service where I could so easily have been the giver, the therapist, the nurse. After all these months of being a patient, I still find it hard to identify myself as a patient in need of support.

What I need is someone who knows me.

In particular, I need someone who can relate to me being a health care professional with cancer; me being someone who always props other people up. I need someone who understands that the weepy business is temporary but necessary;  someone for whom I don’t have to pretend that I am fine, and who understands that actually, even when I feel I am falling apart, I am fine.

Most importantly: I need someone who can bear my distress and whom I don’t have to protect from it. (That disqualifies the entire contingent of family and friends.)

Enter my GP. (Non-UK readers: that's a family doctor.) 

I have been extraordinarily lucky with my GP. Or perhaps it wasn’t luck? When I moved to Clapham 20 years ago, I asked the palliative care nurse covering this neighbourhood to tell me where to find the best GP. I knew from experience of working with the GPs of my dying patients that whilst most are wonderful, not all of them are able to listen to patients or take advice from specialist nurses. I wanted the kind of GP you can talk to. The kind who includes patients and families and other specialists in the healthcare team. Fortunately, that’s what I got. Two of them, in fact – one of whom is now retired.

My relationship with my GP is an unusual, semi-professional one. We keep doctor-patient boundaries, but I think we both know that we could, quite gladly, be firm friends. We bonded years ago over the discovery that she, like me, had once lived in a L’Arche community together with people with intellectual disabilities. When I turned 50, she came to my fundraising birthday bash.

We usually over-run the allotted appointment time, as there is always so much to talk about. In fact when I went to her with my newly found breast lump, we spent almost all of the time talking about other things. Fifteen minutes later, I had to think for a minute before I remembered why I was actually there. (Oh, yes, breast lump. Just a small one, it's probably nothing.... Ha! Soon, there would be no need to complain that my healthy constitution means I just don't see her often enough.)

During my illness, we have kept occasional telephone contact, and she has once visited me at home. Nothing too involved: it is hard for GPs to know how much or how often to contact patients who are under hospital care.

Given this week’s three W’s (Weak/Wobbly/Weepy), I decide it is time to see her. It is Monday morning. I try to book an appointment on-line – you can do that these days. Hallelujah, miracle, a slot is available on Monday afternoon! Quick, book it! But wait, oh no, that’s not today, it’s Monday 5^th January, in four weeks’ time.

FOUR WEEKS. That’s her next available slot.

A phone appointment then? Thursday, that’s the next one. This week, yes, but now that I’ve decided I need to talk to her, I can’t wait. Even that little word on my screen, Thursday, makes me cry. This is ridiculous.

I ring the surgery.

“Sorry, she is not here today. Yes, she is here tomorrow. But no, she has no availability. No, she can’t even ring you, she’s fully booked.”

“Please,” I say, “please, could you leave her a message? I’m sure she will want to know that I’ve called. She always says that I can ring her any time and she’ll fit me in.”

The receptionist agrees, but warns me that she cannot promise anything. I just about manage to thank her politely without crying, but once I’m off the phone, I put my head on my arms and sob. My husband looks on in alarm. Clearly, something needs to be done about me.

I am taking no chances with the receptionist’s promise. I text my GP (yes, I’ve got her number), apologising about the impertinence. This is, after all, her day off. She rings me and offers to come and see me at home the following afternoon (and this, remember, is someone who doesn’t really have time to fit in even one more phone call tomorrow), but of course I can go and see her instead. I am so, so grateful.

“I’ll give you a sick note for this week,” she says on the phone whilst I drip tears all over her day off, “and then we’ll talk about what else we can do to get you well again.”

So there I am, in her office, and within two minutes she needs to pass me the box of tissues.

We laugh a lot, too. (We always do.) We talk for almost an hour. She is always, always interested in all my observations about the NHS. She only needs half a word to understand my coping strategies, my emotions, my highs and my lows.

And she, as my GP, is the only one who can convincingly tell me that I should look after myself. It’s what everyone else tells me, too: my work manager (really, the only person putting pressure on me to go back to work is me); my friends; my family. But what does it mean, looking after myself?

I explain that every day, I have to decide whether to go for a gentle walk or swim (which helps with the side effects and always makes me feel better, but from which I then need to recover, so that’s my day sorted) – or spend a couple of hours at my desk (from which I also need to recover. In fact I currently cannot manage to sit upright at a desk for more than an hour at most: it’s that funny business with the skeleton’s refusal. I don’t think it’s made of bone. I think it’s been turned into rubber, and stretched a bit too far).

Then there is the need to cope with family life. My daily rhythm has been thus…

• Get up (takes several hours, what with cups of tea, shower, breakfast, back to bed to recover from tea/shower/breakfast).
• Do something (walk/work/stuff around the house).
• Lunch.
• Bed for several hours.
• During my Bad Week, that was it: bed for the rest of the day; perhaps emerge for supper with the family, which they (hopefully) have cooked. Nowadays, I try to be around when the children come home from school. You can find me in the kitchen, sitting for several hours, even cooking a meal (I’ve put a stool by the stove, so I can stir sitting down).
• After supper, I sign off.

Then there is work. I was due back at work this week (my plan, not my employers’). But if I work in the morning, I cannot have my exercise. If I work in the afternoon, I have to resign from family life.

For my GP, it’s a no-brainer. She spells out what Look After Yourself means. Three things matter, she explains: (1) getting well, which includes the exercise thing; (2) family, (3) work. In that order.

“You are just not strong enough to include work,” she says gently. “And you’d be no good at work if you started again now. It would take you so much longer to recover. You need to focus on yourself, and you’ll know when you are ready to go back to work." (This is true. Work this autumn, when I got round to it, has been a joy. Not a strain at all.)

"How would you feel if I told you that you had to go back to work next Monday?” she asks.

I think about this. “It makes me want to cry,” I say.

“Exactly,” she says. “And then you'll have to make yet another decision about whether or not to go back to work. Why don’t I sign you off work until the 5^th January, and then we’ll see. How does that sound?”

I try to answer her, but can’t. Instead, I reach for another tissue. She nods, satisfied. Enough said.

Now, how about my need to talk things through, occasionally, with someone who can take it and whom I don’t have to protect or support? What kind of person might that be?

My GP has been listening to my struggles to be a nurse-turned-patient over the past year, and thinks that as healthcare professionals, our support needs are actually quite different from those of other patients. She understands exactly why I don’t want to go to a place called The Haven, a local support centre for cancer patients. I don’t think I need a Haven. I need another professional - an equal - to walk alongside me, just occasionally.

It occurs to her before it occurs to me...

“Actually, why don’t you use me for that,” she suggests. “I can just book you in regularly for meetings like this.”

I look at her in delighted amazement. How wonderful. I feel better already.

“How about January?” she says.

I won’t need to come and see her that often. I know I won’t. Once every couple of months is fine. But oh, the thought of having someone who has followed my story and will keep following it… that is all I need to keep me going.

When I leave my GP with a big hug, I thank her profusely for making the time to sit down with me on such a busy day, at such short notice. I know how hard things are for GPs. They simply do not have enough time to fit in the ever-growing list of patients, the ever-growing list of tasks and demands that the government throws at them.

“Actually,” she says, “things like this are important. There is always more to do, and you can never do it all, but this kind of thing makes the job worthwhile.”

I suppose this is what sets them apart, the outstanding healthcare professionals: they want to be a doctor/nurse because they want to be with patients. In today’s ridiculously stretched healthcare system, the professionals who remember that calling (because that’s what it is) and act on it despite the pressures, are the ones who truly make a difference to their patients.

The hospital consultants may have saved my life, but this week, my GP saved me.

My wonderful GP