Wednesday, 30 July 2014

24. The scanning rooms

Have the hospital managers read my musings on waiting rooms and instructed their staff to get me fast tracked in order to encourage winning coverage? Or were the scanning people this morning simply helpful, considerate and (crucial, this) not particularly over-stretched?

Whatever the case, we were whizzed through the system, Owl and I.

Arriving early at the scanning rooms because the preceding blood test had been so swift (courtesy of the magic Golden Ticket that allows queue jumping), I was approached every five minutes.

Eye-reen Tuffrey? Too early, you say? Never mind, come in, come in. Within 15 minutes, I'd had my radioactive injection. Tick.

"You will need to wait two hours now before the bone scan. Come back at midday," they explained. (I knew I'd have to wait for the injection to work its way into my bones. I came prepared, book and everything).

"What, you’ve got a CT scan at that time? No worries, I’ll go and speak to them, they may be able to do you now. Follow me."

I followed, and they did slot me in 45 minutes ahead of my appointment. A ten minute scan of my liver and lungs. Tick.

Owl in the CT scanner
Returning for the bone scan at noon, the radiographer spotted me at once and grovelled, "Sorry, I made a mistake, it’s not for another half hour."

The thing is, if you're told exactly how long the extra wait will be (and particularly if it comes with added apologies) it doesn't matter so much. I went out to sit in the sun again. Back in the waiting room at 12.30, someone came specially to tell me that I had to wait another five minutes. And she was as good as her word. At 12.35, I was called in. I almost felt cheated out of my book reading.

A 40 minute session  in the gamma scanner. Tick.

(No, I didn’t know what a gamma scanner was either. I do now. The radioactive stuff lights up the busiest cells, including cancer cells.)

They even let me choose the music - although their interpretation of “anything classical” was panpipes and guitars.

Owl in the Gamma Scanner

When it was Owl's turn, one of the staff pressed the button on the CT scanner so that his bed moved right in. The gamma radiographer will probably soon discover that Owl has no backbone (or any other bone).

All these kind members of staff, acknowledging me as soon as I entered any waiting room, keeping me informed about what was happening and when, actually talking to colleagues in other scanning rooms and coordinating my appointments to make it work for me (rather than stick to red tape)... it has made all the difference. It turned a potentially stressful day of tests into quite a pleasant experience.

It made me feel like a person, not a number. Not even a patient. (But perhaps that's because I'm now getting used to wearing hospital gowns, and can see that I'm still the same person underneath.)

I even managed to relax and rest in the scanning machines, the panpipe/guitar combo notwithstanding.

Today's happy run with the NHS doesn’t end there.

During the allotted waiting time, I rang my breast care nurse to find out when exactly I need to come in for my first chemotherapy session on Wednesday.

“Ah,” she said, “you don’t show up on the system yet. Let me find out and ring you back.”

She did, ten minutes later. “No space on Wednesday I’m afraid. They need more time with you because it’s your first time. They have fitted you in on Tuesday afternoon instead.”

Not a delay, but a speeding-up. Amazing.

I'm pleased that chemotherapy is now booked for the 5th. I will meet my oncologist and nurse on Monday, to talk through the outcome of today's tests and have a look round the chemo room. After that, I might as well get going with it, rather than wait (nervously, I expect) for another two days.

I am now back at the seaside. I will make the most of the remaining holiday.

I am utterly daunted by the prospect of chemotherapy, but also immensely grateful.

All those staff, all those machines, all that medicine, all the time and resources to try and rid me of my cancer. Free of charge. No questions asked.

I think about of some comments I read on American websites.

My insurers wouldn’t pay for an MRI scan and I couldn’t afford it, wrote one woman who was instead given a “wait-and-see” approach – she waited, and saw, many months later, that the cancer had advanced to the next level.

However much I may moan about my hospital experiences, let me just make this clear.

The NHS is a wonderful, wonderful thing.

It has many flaws. I know it has. (I spent the last few years looking at why things go wrong for people with intellectual disabilities in NHS hospitals.)

But fundamentally, it is doing the right thing: offering everyone, regardless of income or background or status, healthcare that is free at the point of delivery.

Today, I can only cheer and be thankful that the NHS is busy saving my life.

Tuesday, 29 July 2014

23. When Owl had surgery

I’m on holiday. Properly, it seems. The kind of holiday that has medieval castles in it, and antique markets, and daily swims in the sea/helpings of ice cream/bottles of wine. There is an un-British amount of sunshine punctuated by some very British showers. I’m even halfway through a novel, the first one I’ve managed in four months. Very gradually, the Winnie-the-Pooh problem is receding. (Let's hope it doesn't strike again.)

A proper holiday does not include cancer, so I’ve tried not to think about it.

With reasonable success. I am not composing any blog posts in my head. I’m pretending that the pixie cut is my own free choice. (And not a bad choice, at that. Gentlemen, you don’t know how lucky you are with your crew cuts. The time saved! The quick transition from shower to I’m ready, let’s go! And that’s not just a jokey way of making light of my limited hair length. It’s the truth. Let’s just gloss over my sharp intake of breath every time I look in the mirror.)

But now I need to take a short break from the holiday, because the hospital scanning machines are awaiting my arrival tomorrow morning. I have left my family at the seaside and made the two hour train journey to London. 

I want to stay in holiday mood though, so I am not writing anything new. Instead, let me empty my drawer of back-dated Owl stories.

My surgeon

This story about Owl’s surgery starts a week before I was due to have my mastectomy.

We did not yet know that it would have to be postponed. I’d had a lumpectomy three weeks earlier. Owl had his stony lump removed even earlier than that, on the day that I created him out of scraps of fabric and a few handfuls of fluff. Now, unexpectedly, we were facing rather more invasive surgery.

My daughters had been wondering how such a flat chested animal could have a mastectomy.

We briefly considered and then rejected the possibility of giving him breasts. Even if I could manage the technical challenge, he would look ridiculous. Instead, I thought, I would just have to bandage him up, mimicking my own plasters, pretending he was similarly scarred.

Then, one night, I suddenly woke up at 4am, thinking about all this. The solution just popped into my head. I would unpick and cut off part of Owl’s right wing. I would have to do it the day before going into theatre, so the children would find him, like me, with a missing part.

I was suddenly overwhelmed by tears at the thought of such mutilation.

I had been completely open and honest with the outside world about the impending loss of my breast and my decision not to have a reconstruction, and I didn’t doubt my choice for a moment. If anything, I felt increasingly positive about it, glad and relieved that I could be so confident about my body.

I was sure I would learn to love my scar, and I had been very upbeat about it. Bring it on! It’s nothing, really! No-one will love me any less!

So there I was, 11 days after being given the news that I would lose my breast and six days before the surgeon’s knife was written into my diary. I had convinced myself that I was absolutely fine about it. I would just go through it all and emerge physically mutilated but emotionally unscathed.

The thought of having to cut off Owl’s wing, however, was unexpectedly devastating.

“Don’t be ridiculous,” I told myself. “It’s only a bit of stuffed fabric.”

But I knew why I was so upset. My feelings about Owl were simply a reflection of my deeper, perhaps inadmissible feelings about myself.

Of course I knew I wouldn’t love Owl any less without his wing. If anything, he would be loved more, for having lived through such trauma and shared it with us.

Even my rejection of reconstructive surgery was echoed by Owl. I knew I wouldn’t want to sew on a perfectly matched new piece of fabric. He would be fine with a prosthesis, an un-matching piece of fabric. He would also be absolutely fine with nothing at all. (And as it turns out, none of us have so far felt the need to fill his wing-gap.)

My positive thinking around living without a breast was real, but it was not my only truth. I hadn't allowed myself enough space to grieve. Too much of a For goodness sake, pull yourself together, it's only a breast attitude.

Thank goodness I allowed myself to howl over Owl instead.

I took myself downstairs and sat on the sofa with an extra-strong cup of tea, clutching Owl, crying and crying for our tough journey ahead.

A few days later, my mother started dying and everything changed.

Instead of undergoing the mastectomy, I travelled to Holland to be with her.

When I returned to London, the impending loss of my breast was the last thing on my mind. It didn’t matter to me. I was just relieved that it would be done soon, so that I could go back to the much more important business of being my mother’s daughter.

I felt none of the distress that had been so prominent a few weeks earlier. My Go ahead, let’s get this over and done with attitude was reflected in Owl.

It was almost midnight. I had flown back to London that day and I was due in the Surgical Admission Lounge early the following morning. My heart was full of the farewell I had just shared with my mother.

Suddenly, I remembered Owl’s wing.

A few weeks earlier, during the 4am sobbing episode, I had envisaged a profound and moving ritual, where I would use the symbolism of cutting his right wing as a way of saying a final goodbye to my right breast. I would take my time over it. There would be reverence and tears. Knowing me, you might even expect candles, incense and bell-ringing.

Instead, I made a quick trip to the sewing box. It was a matter of detached cutting, snip-snip, there we are, done, can I go to bed now? I hardly looked at the result. The result didn’t matter.

I don’t think I was suppressing my deeper feelings, as I had clearly been doing prior to the 4am drama.

Like my own mastectomy, Owl’s surgery had simply become one more thing on my to-do list.

The children’s reaction to his new scar mirrored the way they reacted to mine.

When his bandages came off a week later, they were simply interested to see what he looked like, without judgement or emotion: “Has his wing been cut off? Oh, let’s see then!”

Similarly, when I showed them my own fresh scar revealed by the removal of my plasters, they had a good look and then went off to do something more interesting.

It made me marvel at young people’s ability to take things on board. Their days are full of new information, new ways of looking at things. Owl’s amputated wing and my lost breast were simply becoming part of their world.

Although, admittedly, now that the swelling and the multi-colours have subsided and my chest is settling into its forever-future appearance, they do notice that things are different for me. Only a few days ago, during rush hour in the bathroom, my daughters looked at me emerging from the shower, and the younger one said with feeling: “I don’t want to get breast cancer.”

I’m with her on that one.

If anything, how on earth could she ever bear to put her scissors to Bear?

Thursday, 24 July 2014

22. The pixie cut

“As short as possible,” I instructed my hairdresser yesterday. “Think Judi Dench.”

So here I am in all my film star glamour.

The after picture

The before picture

Of course it wasn’t quite as jolly as it sounds. However much my friends assure me that the new style suits me (they use kind words such as trendy and younger), this is not just a change of image because it’s summertime and I feel like it. This pixie cut is born of necessity, not desire, and the image change comes with a change of identity. I am inching ever closer to being a fully signed up cancer patient.

I wasn’t going to bother. I’d calculated that I’ve got about four or five weeks before baldness strikes. Why waste time and money on a cut that is literally going to go down the drain in a month’s time?

Waste?! I hear you cry, as befits the L'Oreal generation. Nonsense! You're worth it! But I can't help it. Blame my prudent Dutch roots.

My fantastic hairdresser, who I’ve visited faithfully ever since my 16 year old son was in his pram, has long given up hope that I come to his salon more than four times a year. He only has himself to blame. His cuts are so good that they last for months, which suits me nicely, as I usually have half a dozen better things to do than sit in his chair, lovely though it is to see him. But my previous cut was in March, pre-diagnosis, so he must have been wondering whether I'd abandoned him.

Just as well we were on our own in the salon (first appointment of the day), because as soon as I saw him I burst into tears. I'd been brewing those tears on my bike. In fact I’d spent the ride down Clapham High Street thinking up suitable titles for this blog post. Howling at the Hairdresser? Crying over the Crew Cut? Sobbing under the Scissors? Blubbering beneath the Blow Dryer? Any of these would do.

It suddenly occurred to me, cycling along, that this would have been the time when I needed a friend to come with me. They keep offering, my lovely friends, but I am so bloody independent, I don't even recognise when I need them.

(Yes, well spotted, that's a swear word. It's time for swear words. I never swear, and I'm aware of being the reasonably respected Dr Irene Tuffrey-Wijne and a role model for my (hopefully non-swearing) children, but I'm stripping those layers. I'm just Irene now.)

“Breast cancer,” I spluttered before my hairdresser could ask The ususal? “Chemotherapy. Hair will fall out.”

Turns out I didn't need to bring a friend after all, because there he was instead. He got me a cup of coffee and locked the door to other customers.

I had come to his salon, I explained, because suddenly I couldn’t bear it any longer. The thought of my best-before hair spending another month growing past anything resembling a shape. The heat. Bad enough having a hot chest (it’s back to Sock Bra today) without also having a hot head. These are decent, familiar, must-go-to-the-hairdresser reasons.

But the real reason for my pixie cut is that going straight from shoulder-length to bald doesn’t seem the brightest of ideas.

There is a gradual transition I feel I must make, from blow-dried fullness to bare baldness. It needs something in-between.

I can't cope with the thought of all those long hairs clogging up the drainpipe.

My plan is to shave it all off at the first sign of my hair flying the nest, and that seems easier to execute if it’s short.

So with the story told and the coffee finished, the hairdresser set to work.

He was rather pleased with the result. (Or so it seemed. He may just be an excellent actor.) “You’ll be keeping it like this next year!” he said, encouragingly.

My daughters (and Bear) screamed.

The older one because it’s just too much to get used to - although her friend said, after due consideration, “I like it like this,” bless her. The younger one because it is well known that 11 year olds do not want mum to look any different from yesterday.

My son returned home from the hairdresser himself, and with a boy's instinct for winning, he decreed that his is shorter than mine. His lighthearted, shrug-of-the-shoulders dismissal (You think that's a haircut? THIS is a haircut!) was perhaps the most helpful response so far.

I am taking a deep breath, so that I can do the jokes that will, I suspect, wear pretty thin over the coming months.

Think of all the money I am saving on shampoos and conditioners and hair mousse!
And on going to the hairdresser!
And the time saved! No more blow drying! Hurray!


Of course there is some truth in these silver linings. I went swimming in the afternoon and it was indeed a case of Wash & Go, which was rather brilliant.

I also know that fundamentally, I am not that bothered about my impending hair loss. I have never felt defined by my appearance. People will just have to get used to it.

I will get used to it. Still, I have to swallow hard.

The thing is, now I can no longer hide the fact that there is something fundamentally different about me.

Putting my portrait on this blog and on FaceBook at least ensures that I don't have to catch people (and their emotions) when they see me for the first time after The Image Change, but still, I have to get over the hurdle of marching out there and facing the world looking different. That will, of course, only get worse when my hair falls out.

Perhaps my breast care nurse was right when she predicted that shaving my head will be more difficult than I anticipate, however gung-ho I feel about it now.

"It will be emotional," she said. "It will be, even if you think it won't be."

A few weeks ago, I would have thought that blog posts about crew cuts and head shaves and hair loss could be quite humorous. Of course I’ll keep smiling (because what else can you do?), and of course there will be some genuine laughter along the way.

(My younger daughter had us in stitches last week, when we talked about my impending baldness. She suddenly paraphrased a poem she had learned at school, announcing with great aplomb: I was old then and careless, my head, it was hairless.)

But the reason for my haircut is decidedly un-funny. My tears at the hairdresser's were not so much for the loss of my hair but for the loss of my identity as a healthy woman and the relentless onslaught of cancer-related challenges.

So, having half-promised the girls that they can have an afternoon's fun shaving my head when the time comes (“Really? In any way we like? Even zigzags? Yippee!”), I now suspect that I may well need to take up my hairdresser’s offer to do the shaving for me.

“Don’t worry,” he said. “We’ll look after you all the way. Here is my mobile number. I'll do anything you need. I'll come to your house if you want me to.”

In return for such kindness, let me advertise his salon. It’s called Willis B. Ask for Andrew, the owner. He is the best.

Selfie with Andrew

Wednesday, 23 July 2014

21. How to be a healthcare professional

I wasn’t half wrong when I said that cancer follows me everywhere.

Fresh out of the armchairs-and-tissues room of my new breast care nurse, I took my youngest daughter shopping for the uniform she will need when she starts secondary school in September. Sitting on the top deck of the bus, all of a sudden, I saw my breast care nurse smiling at me, larger than life.

I had to interrupt my daughter’s highly important chat. “Hang on a minute!” I said, craning my neck. “I think that was my nurse on that advert.”

My iPhone picture, taken on the way back, wasn’t clear enough, so I googled “Macmillan Cancer Support Adverts”. And yes, it’s definitely her. It even has her name on it. I can’t escape. Fortunately, in the case of this lovely nurse, I don’t feel the need to escape.

It’s interesting how it takes just a minute to establish whether a nurse is of the helpful and supporting kind.

I have given hospital staff the benefit of the doubt, giving them a second and third chance to help and support me, but I’ve rarely been wrong in my first impressions. Which has made me think a lot about what it is that nurses (and doctors, and social workers, and physiotherapists, and radiographers, and receptionists) do to make their patients trust them and feel supported by them.

I am writing this blog post for the health care professionals among you. (Everyone else, feel free to go and have a cup of tea instead.)

I have whittled it down to three key points, all of which can (and will) be shown in the first few minutes.
  1. This nurse (doctor/social worker/physiotherapist/receptionist/etc) recognises me as a unique individual, and treats me as such. Not just a number (or a breast), but someone who matters.
  2. This nurse has time for me. (Even if they have little time. During the few minutes they spend with me, their focus is on me alone.)
  3. I can show my fragile side and this nurse not only copes with it, but she conveys that it is OK and she doesn’t think less of me.

There are many ways in which these three things (or the lack of them) can be communicated. I could write a book about my observations so far – not least observations of myself, the unexpected impact a nurse’s throwaway remark has had on me, the way in which a non-verbal response to my slightest wobble has sealed the deal on future interactions.

Be warned: it only takes patients a few minutes to make up their minds about you.

How much of themselves they show you, how much they will admit to their true feelings/symptoms/questions, will depend on it.

I have felt free to ask the most minor of questions if I felt safe with the doctor or nurse. I have also carried questions around with me, feeling their heavy weight but not daring to ask them in case they were silly, and instead spending hours googling for the answer.

(This has surprised me. If I, an associate professor in nursing, have a question, then surely I can be confident that it is not a silly question? But I have found that as a patient, I am so vulnerable that my professional confidence crumbles.)

It makes me shudder to think of myself as a hospice nurse two decades ago, the many times I must have got it wrong for my patients. I wish I could go back and apologise.

There are unique features to being a patient-with-baggage, the baggage of inside knowledge.

I even work at this hospital. It always makes staff sit up when they hear my answer to “What do you do? Where do you work?”

I will keep those insights for another day, another blog post. Suffice it to say that I need to be spoken to as an intelligent fellow professional whilst being treated as an ignorant patient who doesn’t know anything about breast cancer treatment, and who will try but often fail to keep up the professional facade. That’s not an easy task for my doctors and nurses, and all hail to those who have managed it.

But some things are really quite simple.

On my second meeting with the surgeon, a junior staff member who I’d never seen before called me out of the waiting area with Irene pronounced correctly. That has never happened to me before, anywhere. I usually have to prick up my ears to pick out a mumbled EYE-reen, English-style, rather than the correct Dutch pronunciation ee-RAY-na.

I felt instantly known and important: I felt like me.

When I complimented her, she said, “The surgeon told me I must say it like this.” I was amazed and almost moved to tears by such thoughtfulness. If I think I am going to have more than just passing dealings with a healthcare professional, I do tell them how to pronounce my name, but most don’t remember and need weeks, even months, of training.

I knew in that instant that I mattered to this surgeon, and she never disappointed. She remembered everything about me.

Contrast this with the ward nurses who came to my bedside without looking at my name at all, and without introducing themselves.

Some were brilliant (“Hello, I’m X, and my job is Y. I am here to do Z.”). I might offer them a snippet of important information about me. Others simply turned up and started fiddling with drips/bedsheets/forms, with hardly a glance at the patient in the bed.

Or how about the surgical breast care nurse, who I’d asked to meet because I wanted to talk through some of the details of my situation. I was reeling from the recent news that I needed a mastectomy. It was seven weeks since first met her, when I received my cancer diagnosis.

When we sat down, she not only needed me to remind her of the details of my diagnosis, but she also asked me: “Who is your surgeon again? Is it Mr X?”

It wasn’t. I was flabbergasted, because this nurse had sat in on most of my meetings with the surgeon, including both times when I was given serious bad news. Times that were etched in my memory, probably forever.

I knew then that I could not get my questions answered, or my feelings supported. That meeting ranks as one of the lowest points of my cancer journey. It was worse than being told I had cancer (because I’d suspected that – but I hadn’t been prepared for feeling so utterly unimportant). It still upsets me now, thinking about it.

Of the many examples fighting for a space on my blog, I will tell you two contrasting stories. Both concern my two breast care nurses’ responses to a few little tears that I could not hold back.

How not to be a nurse

This happened on diagnosis day. As mentioned, I was prepared for this bad news. In the surgeon’s office, I asked all the right questions. I listened to (and understood) all the answers. I was in practical mode: Right, now we know the score, let’s get on with this.

But then the breast care nurse, who had sat in on the meeting with the surgeon (see above), took me and my husband to another room next door. To support us in whatever way we needed, I’d imagined. Taking those few steps, I couldn’t hold back my tears.

All it needed, really, was a nurse to turn to me, look at me (and at my husband), and acknowledge those tears. Perhaps just say that this must be a huge shock to the system, and of course there are tears. Sit down and listen to me, or at least give me a few minutes to process the overwhelming new state of affairs. But above all, I needed someone to look at me with compassion.

But there was no acknowledgement of my tears. Instead, the nurse sat down at her desk, back turned to me, and handed me a fat folder that said Primary breast cancer resource pack. I took the hint and did not cry again. I swallowed back my tears and dragged my competent side out of my guts.

“My cancer bible!” the nurse said brightly, enthusiastically circling the relevant details. “Everything you need to know about your cancer is in here. And here is a leaflet for a breast cancer support centre. It’s not far from here! You can get complementary therapies there, talk to other cancer patients…”

I spluttered that I didn’t think I wanted to go to a cancer support centre, but was told that these centres are really very good. It sent me into must-protect-myself-from-attack mode. I’d only been a cancer patient for ten minutes, I didn't yet feel like a cancer patient, and the last thing I wanted was a leaflet on how to be a cancer patient.

What I wanted was someone asking me: How are you? and help me listen to my own answer.

Perhaps, if I’d been given that space (even for a few minutes), I might have been open to receiving information. But without it, the information felt like an assault.

I heeded the unspoken message: this is not a nurse I can be myself with. This is not a place where I can cry. And I have acted accordingly. I have mostly been cheerful, in control, efficient in my dealings with this nurse. I have kept things practical, never hinting at the fact that practical issues were the least of my problems (well, lack of spare Softie aside). She probably had no idea that underneath, I often felt shaky and utterly vulnerable.

The sense that I have to explain and justify my feelings or choices has been one of the hardest things to deal with in my interactions with health care professionals.

This same nurse came to find me on the ward a couple of hours after my mastectomy.

“How are things?” she asked.

“I’m finding it really tough at the moment,” I answered, trying and failing not to cry. (All I could think about, and cry about, was my mother. I had never felt so vulnerable in my entire life.)

“Really?!” she asked, sounding genuinely surprised. “But the surgeon said the operation went really well!”

Enough said. Case lost.

How to be a nurse

I can already see that my new breast care nurse is someone I can cry with. That is high praise indeed. It might even be the litmus test.

In fact I did cry in her office this week, to my own surprise because I was so determined to be in control of my emotions. But she started talking to us about the challenges of looking after children when you’re having chemo. Even teenagers. Even the kind of teenagers that we are blessed with: helpful and understanding ones.

“It’s going to be hard,” she said, “because when they want to push the boundaries, even a little bit, you will be tempted to let them. Anything for a quiet life. You (addressing my husband now) are going to have to work hard to keep the boundaries the same, because she won’t be able to do it.”

We have talked about this a lot at home, even with the children themselves. I could be rational about it. But here was the lovely breast care nurse looking at me and talking about it, acknowledging the challenges we face, noticing my sneaky leaking tears. She simply nodded and handing me a tissue. It felt hugely supportive. She seemed to understand that my tears were not necessarily for fear that my children might throw a wobbly, but for my distress at the daunting and terrible prospect of spending so many months without enough energy to remind them to load the dishwasher. Here, clearly, was someone who was prepared to sit through any distress and walk alongside me.

Most staff have been like this. I’ve been lucky.

The stories of the less-than-ideal scenarios are longer, because they stand out in my memory. But really, most staff have been excellent.

There was the lovely young physiotherapist who came to see me the day after my mastectomy, to show me the exercises I should do at home. I explained why one of the exercises was too painful.

“Look,” I said, showing her. “I’ve got a drain that loops all the way under my skin and tickles my under-arm nerves every time I move my arm this way.”

“You look at your scar really easily!” she commented, sounding amazed. “Most women find that really difficult.”

“Well,” I explained, “to be honest, the mastectomy is the least of my worries…” and I proceeded to tell her about my mother.

“That’s given me goose pimples all over!” she said. “I can’t even begin to think about that.”

She didn’t stay long, but after that, she had my full attention. She had listened to me, even though it was only for a minute, and as a result I was ready to listen to her.

Here is my request to all health care professionals: make no assumptions about your patients.

Don’t go in with pre-conceived ideas about what she needs to know and what you need to achieve. See each patient as someone with a different story to tell, a new and unique way of coping with cancer. You may know about cancer and all its paraphernalia, but you don’t know your new patient and her family. You don’t know how cancer affects them. 

And you will only find out if you listen, because your patient will be working hard to hide it from you.

So thank you, thank you to all of you who have seen through me and listened to me.

Monday, 21 July 2014

20. The Chemotherapy Plan

I have been upgraded.

When we arrive at the breast clinic, my husband and I, the self-check-in-computer by the reception desk doesn’t recognise me. Have I got the date wrong? But no, I am sent on to a waiting room upstairs.

Mine must be the first appointment of the day, because there is nobody there yet. This gives us the chance to have a good nose around.

There’s a whole new set of leaflets with titles like Hair loss support service and Free services for people affected by breast cancer. There is a row of fat novels on the window sill (which you can take home if you don’t manage to finish it during the wait). There’s an oxygen cylinder in the corner, ready to spring into action might I need it.

I have, it seems, entered an exclusive club, the one that only admits Real And Serious Patients. I won’t need to guess what’s wrong with the women waiting here (and when we emerge from the meeting with my oncologist, a good hour later, the room is full of them, but I don’t quite dare to stare as much as I’d like to. I only spot one scarf. What have they all done about their hair?)

I’m even given a golden ticket with my go-and-get-your-blood-taken form (well, a red sticker). “New system,” the receptionist explains with enthusiasm. “Show them the sticker, and you can jump the queue of waiting patients.”

I am procrastinating, of course, telling you all this. What I really need to tell you, what I really wanted to know, is what is happening with my life. My biggest fear was that I’d be going home after seeing the consultant with a bagful of information and treatment choices to think about, but without any firm dates in my diary.

A clear chemotherapy plan would make me much happier, I thought.

Now, I have a plan. And I am indeed much happier because I feel more in control. Waiting for information really is terrible.

The chemotherapy plan did not require discussion, but was simply presented to us.

Six cycles of chemotherapy (for the connoisseurs among you: it’s FEC-T chemotherapy). Each cycle lasts three weeks. I will go into hospital for half a Wednesday to sit in a comfy chair and have my veins pumped full of drugs. Then I’ll go home and spend 20 days recovering from the poisonous effects, before going back for the next shot.

I was ready to argue that I want to start treatment as soon as possible (Get On With It!), but the oncologist took the wind out of my sails by saying, “I’m happy for you to start next week.”

Next week?? Hang on a minute, let me get my head round this first…We settled on the week after, so that we can go away next week as planned – the only family holiday we’ll get this year.

Here it is, then: I will start my chemotherapy on the 6th of August.

Although I am indeed happier having a plan, I also feel completely daunted.

It is the first time in ages that I cannot sleep, and I am typing this at two o’clock in the morning, unable to think of anything else. Perhaps there was some wisdom in letting me recover some strength before bombarding me with information about what awaits me.

Chemotherapy is not going to be a walk in the park.

All the leaflets, information sheets, doctors and nurses keep stressing that “you may get some of these side effects”. Everyone is different, they say. Some women sail through it; some even go back to work during treatment.

But my new breast care nurse (who is part of the patient upgrade package) says, “Most of my patients can’t manage any work at all. Don’t beat yourself up over it.” The oncologist concurs: “You’re looking at six months of treatment, and your employer should be absolutely fine about you taking all that time off work.”

Because despite all the You MAY get… and You are very unlikely to get all of these side effects…, my oncologist paints a vivid picture of the shape of the weeks and months ahead. The following is more or less guaranteed.

First days after chemo: see it as having “a planned bout of flu”. Nausea, in particular. Was I nauseous during pregnancy? (Yes. Terribly. For nine long months.) The doctor makes a note: “Better give you some super-strength anti-sickness medication beforehand. I find that women who were sick during pregnancy are the ones who are rather sick with chemo.” Hm.

Second week: lowest point for the white blood cells. As these cells are needed to fight infections, this is rather a risk. The slightest temperature or feeling unwell, and I must be rushed into A&E for emergency antibiotics. Does the husband travel a lot? Not at the moment? Just as well, because otherwise you’d have to think about who is going to do the rushing when she wakes up sweating at three o’clock in the morning.

The third week is a reasonably good one. If you want to plan any trips or treats, this is the week to do it in. (“But be prepared to cancel it at the last minute, because you just can’t predict. Better not go abroad. My patients end up seeing quite a lot of England.”)

The list of likely side effects is long, and I won’t bother you with it.

You will hear about it when they happen, no doubt. (If I am up to blogging, that is.) But I’m sure you can imagine some of the joys that lie around my corner. Hair loss, for one. That happens after about two or three weeks, I’m told.

The chemotherapy drugs change halfway through. After describing the trials that await me during the first three cycles, the oncologist tells me that the 4th, 5th and 6th cycles are worse.

They give you steroids in order to cope with the side effects of the last three cycles. They stand by at all times, ready to change the drugs to something slightly less demanding if your body protests too much. I’m trying very hard not to think about that yet.

Then, after all that is over, I may or may not have radiotherapy.

That choice will be discussed with me a few months down the line. The issue, apparently, is that I am a bit borderline. Several tests and treatments, including radiotherapy on top of the chemo, are standard for women who have four or more cancerous lymph nodes. I had three. It sounds like such a small difference, just one tiny extra lymph node which would tip me into need-extra-treatment territory, that I’m inclined to think I’d be better off having it too, just to be on the safe side.

This was the only long debate today: should I have a full scan of my liver, lungs and bones to see if it shows up any cancer cells that have emigrated across the borders? Again, this is standard for the 4+ lymph node scenario, but not for me. The oncologist says she is happy to request the scan, and in the end I decide to take it, putting up with the risk of the scans showing up all manner of questionable blobs and blurs that later turn out to be innocent.

And after all that is over (and we're looking at the start of 2015 here), I will be put on hormone treatment for ten years.

So by the time I can stop collecting cancer drugs from the pharmacy, I can go and collect my Freedom Pass (a free London transport pass for the over 60s).

Goodness me, it will be freedom indeed.