5 pieces of advice on how (not) to talk about cancer

How we talk about illness can profoundly influence our experience of it.

Last week we picked up in a hospital waiting room a pamphlet called “Lost for words.”

It’s a practical and clearly written guide on “how to talk to someone with cancer.”

We wish we’d come across it earlier.

As parents of a child who has cancer, Selam and I often talk for him (Mercifully, Asa doesn’t yet understand his condition) and others talk to us as his supporters and carers.

Some misunderstandings that recur in our conversations are well addressed in the pamphlet.

http://be.macmillan.org.uk/be/p-251-lost-for-words-how-to-talk-to-someone-with-cancer.aspx

In lieu of sending it to everyone we know, we’ve taken from the pamphlet five lessons that seem important -- expressed here in our own words.

(Following the format of the guide, we write about how to talk to “a friend with cancer”; but the advice applies equally for those caring for someone with cancer.)

1. Don’t worry too much about exactly what to say.

When a friend has cancer, trust that voicing your concern / sympathy / desire to help -- and being there for them -- will be appreciated.

Too often, people obsess over getting the message just right.

This can lead to a self-imposed gag, and end up making the cancer patient feel all the more isolated.

There are, however, some things one can do to minimize the risk of clangers:

2. Before you put your own or someone else’s cancer story on the table, reflect on the similarities and differences. 

Some stories can be very valuable -- providing insights into new treatments to pursue, or ways to make sense of experience.

Other stories can raise false hopes, or create unnecessary fears.

3. Avoid over-confident or over-optimistic declarations.

Don’t say, “As long as you stay positive, it will all work out fine”!

Cancer doesn’t work that way.

It’s true that people who survive often attribute their survival to psychological or spiritual fortitude -- In the words of a charming young woman who had retinoblastoma as a child: “With a bit of Aunty Faith and Uncle Percy (perseverance), there’s nothing you can’t do.”  

But if a sufferer adopts this belief and then doesn’t get better, it can feel like a personal failure.

In such cases, the physical illness is compounded by feelings of guilt.

Sympathy and hopes or prayers for the best will almost always be better received than optimistic declarations.

4. When using humour, follow the lead of the person who’s suffering.
   

In the right moment, laughing about one’s predicament (or any facet of it) can be a most uplifting thing.

But don’t reel off your top 10 cancer jokes impromptu!

            Instead, take cues from the person who’s living with the condition.

           

5. Meditate on what it means to live with uncertainty.

In Birmingham last week we met a woman whose son, at nearly 4 years old, was having his 39^th examination under anaesthetic.

In the course of these many exams, they had seen progress and reversals.

“People never understand,” she said, “that if things look good at one exam, it doesn’t mean you’re out of the woods -- that you’re in remission.”

“There’s no telling what you’ll find next time.” 

Good news one day can be undone the next.

What cancer teaches us is how to live with uncertainty.

Every month, every week, every day of life lived free of suffering is something to celebrate.

Update

Asa’s exam last week produced very positive results: For the first time in 18 months, there was no new tumour growth to report.

We are profoundly grateful for this, and remain hopeful that the treatment will continue to produce good results.

We go back to Birmingham for another exam in 3 weeks time.

Another lesson

Since the last blog post, I've been to Ethiopia, we walked across London to raise awareness of eye cancer, and we moved house.

Things have been kind of busy.

But really the biggest news is that the treatment Asa's been receiving -- a combination of chemotherapy (using a single drug, Carboplatin) and aggressive cryotherapy -- seems to be working.

He has had two exams under anaesthetic in Birmingham since the treatment began, and the results have been more positive than we felt beforehand we could hope for.

At the Carrots Night Walk, with Cathy and Edith

The tumour load in the right eye has decreased to less than 10% of what it was before the start of this treatment.

In the doctor's words: “We're not there yet, but we're definitely headed in the right direction.”

In addition, Asa had a cataract operation at the end of September.

That went smoothly, and with the cataract out of the way it’s possible to show that there was very little new growth of the tumours in his left eye during the time that they’d been hidden from view -- more than 3 months.

No more chemo

The qualification to this catalogue of good news is that Asa had a severe allergic reaction to his last dose of chemo, two weeks ago, at Great Ormond Street Hospital.

We had just finished our lunch and were settling down for an afternoon in the out-patients' ward (the full dose takes 3 hours to infuse) when Asa suddenly became grouchy and sleepy-looking, and we lay him down on the hospital bed.

Within five minutes he was running a high fever, had vomited, and his blood pressure was plummeting -- heading into anaphylactic shock.

Thankfully the response from the medical team was almost immediate.

Within half an hour he was stable, and though he and Selam stayed in hospital for observation overnight, he was all right from there on.

The upshot, in any case, is that he'll receive no more chemo: No more Carboplatin because of his allergic reaction to that drug; and no more of the other drugs because he's already had as much of them as the doctors think he can tolerate.

Talking and reading

After this traumatic experience, Asa regressed for a few days, and stopped using his potty. (Did we mention he toilet-trained himself a few months ago?)

But that was a passing thing, and within a short while he was back to his normal routines, and chatting away happily to anyone who'd listen.

A typical conversational gambit for him is:  

“[The] 345 [bus] to South Kensington [goes by] King's College Hospital.”

Delivering a speech

Admittedly it’s not the best conversation-starter. But the enthusiasm with which he conveys this kind of information!

One of the things that strikes me about his language development is how many words he takes on board without having any notion of their real meaning.

What South means, for example, or King, or College.

Without knowing these things, phrases like this one nonetheless bind together memories -- in this case of an outing on the bus, and visiting King’s College Hospital for a flu jab.

A passion for symbols

This aspect of Asa’s language learning -- the ready use of words whose accepted meaning is obscure -- is surely common to all children.

More unusual, it seems to us, is his passion for numbers and letters.

He sees them everywhere:

• Two manhole covers next to each other in the park are an 8
  
• A piece of toast he ate at lunch yesterday became, at various points in the meal, an E, an F, an r and a 1.

Homework

The joy he takes in seeing things makes our latest piece of homework difficult.

We've been advised to patch his eyes on alternate days -- the right one, one day and the left one, the next -- to give his brain a chance to readjust to input from the left eye. (For 3 months before the recent cataract surgery the left eye provided little input at all.)

We started this on Saturday, patching the left eye -- which was no problem at all -- and yesterday we patched the right eye, leaving him with only the very impoverished vision from his left eye.

Chilling with one eye patched

Wearing glasses with a +12 lens for the left eye to compensate for liquid removed from his lens along with the cataract (and with the right eye patched), he is still very far-sighted: able to see things from across the room, but almost blind to things that are right in front of him.

We were unsure how he'd take to this -- Would he pull off the patch, and insist on using his ‘good eye’?

Remarkably, he didn’t. 

Instead, he tolerated the impaired vision all day, groping his way from room to room in the new house; occasionally bumping into a wall or a door, whereupon he’d reorient and take another tack; and generally taking it all in his stride.

Selam reported, after a short time that she spent wearing an eye patch to keep him company on Friday, that even with her 20:20 vision in the seeing-eye, she felt handicapped.

It’s yet another lesson in adaptability from our little tutor.

***

Thanks to everyone who has contributed to our fund-raising for eye cancer research.

 
http://www.justgiving.com/walkwithasa2

Blind for a day

My mum likes to say that we learn about our bodies the way we learn about cars -- each time something goes wrong, you get acquainted with a new branch of mechanics.

As various treatments have been tried out on Asa, we've learned more and more about cancer and the eye.

The graph below summarises the treatments Asa's received these past 18 months.

Notes: IAM = intra-arterial melphalan. Primary chemo = vincristine, etoposide, carboplatin.
Secondary chemo = topotecan, vincristine, doxorubicin. On diagnosis, both eyes were stage D
in the International Classification System.

Situations where retinoblastoma fails to respond to both primary and secondary chemo are rare, and even at one of the world's specialist treatment centres, a doctor might see such a case only once every few years.

 Support research on eye cancer here.

Right now we're in a place, therefore, where epidemiology and large trials have ceased to help much, and clinical judgment becomes very important.

As Dr Jenkinson -- the oncologist we met with in Birmingham -- said, "We're beyond the situation where there's a firm evidence base."

What's required then is very close attention to the details of the disease as it's manifested in Asa.


Tumour topography

"The retina is like the inside of an egg-cup," the ophthalmologist, Mr Parulekar, told us.

In Asa's case most of the tumours in the right eye are around the rim of the egg cup. Not all the way around, but covering approximately half of the circumference. In places, they extend down towards the bottom of the cup.

But the fact that the majority of the tumours are on the periphery of the retina -- and not way at the back or floating in the vitreous jelly of the eye -- means they may be treatable with cryotherapy.

Sometimes referred to as TTT or "triple freeze-thaw", this technique involves inserting a probe into the eye and freezing the tumours.

Support the development of improved treatments for eye cancer. 

Blind for a day

Asa had received cryo before, but never as much as he did on Friday.

When we picked him up from the recovery room, his eyes were shut tight and his right eye, which had been treated, was puffy.

On the way back to the train station, we passed a helicopter, which he would have been delighted to see.

Thankfully the air-ambulance was not there on our account.

But he kept his eyes closed for about 24 hours -- all through the journey home, and for most of the following day.

It was sad to see how isolated he was during this period of blindness.

But marvellous to see his excitement, the next day, after he opened his eyes.

In the playground, the day after cryo. Asa opened his right eye (the only one that's currently useful)
less than half an hour before Selam took this photo.

The new plan is to use more cryo, possibly accompanied by chemo, to try to shut down the tumours in the right eye.

So Friday's experience will likely be repeated in coming weeks.

 
Where will this lead?


Will the cryo will succeed in controlling the tumours? 

And, if chemo's required, which specific drugs might be used?

We don't know.

But at least it now seems firmly established that radiotherapy or enucleation are not the only options.

Asa has a fighting chance of maintaining his sight without recourse to a treatment which would significantly raise his risk of later cancers.

The treatments that are open to us are not, however, without their own risks.

• Aggressive cryo carries a risk of retinal detachment, which can impair vision.
   
  
• More chemo would mean increased risk of longterm side effects from the drugs (including hearing loss for carboplatin, and cardiac damage for doxorubicin).
  
  
• Operating on the cataract in Asa's left eye (about which more soon) would involve a small -- but real -- risk of the cancer disseminating beyond the eye.
   

More generally, after a year and a half of living from month to month, never knowing what might be uncovered at the next exam, we're entering a period of even greater uncertainty -- when the prognosis may change from week to week. 

Or, as it did this past week, from day to day.

 Please support our fundraising for eye cancer research. 

http://www.justgiving.com/walkwithasa2

New hope

In the past week, Selam and I sought advice from every channel open to us on what might be done to save Asa's sight and minimise collateral damage from treatment.

We made phone-calls and wrote emails; we read scientific papers about the long-term impacts of radiotherapy; and on Sunday we went to our local Quaker meeting and asked for guidance on how to proceed.

To recap, Asa's predicament is as follows: He has had a relapse in his right eye, and a cataract has deprived him of sight in his left eye.

The choice we'd been offered was between radiation therapy, with the corollary of increased risk of other cancers in adulthood, or removing both eyes.

But the emailing and phone-calling paid off.

The experts we'd consulted -- in the USA, Canada, and Switzerland -- didn't feel that radiation was necessary, and on that basis the London team recommended a full review in Birmingham.

Asa was examined at Birmingham Children's Hospital -- the UK's other dedicated Rb centre -- on Friday.

And yesterday morning we were able to go to the Quaker meeting again, and share our joy: That a new set of possibilities had opened up in terms of treatment.

While much uncertainty remains, the choice before us is no longer so stark.

In short, there's new reason for hope.

Thank you to everyone who offered us advice, encouragement, or prayers.

On September 20th, Selam, Jed, and Asa will walk across London at night in support of eye cancer research. Please sponsor them here.

Respite

We had an important meeting with Asa's clinical team today in London.

The conclusion:

Both radiotherapy and enucleation are off the agenda -- at least for the short term.

We're to travel to Birmingham for a second opinion within the next 2 weeks, but it looks like more chemo and laser/cryo are on the cards.

We'll soon provide a fuller update. 

In the meantime, Hallelujah.

A hard decision

This week's EUA didn't turn out the way we'd hoped. 

"The right eye has relapsed," the doctors told us after they examined Asa.

"Areas we've treated many times with cryo and with chemo, … last time they looked stable and avascular. 

Today they're growing.

More cryo is not the answer. We've done a lot of it, and it's not controlling things.

Second-line chemo held things at bay, but also in the longer term is not working.

I'm afraid we are recommending radiotherapy.

We don't have another option."

Radiotherapy

In the past months we've thought about radiotherapy -- it was clear that it would be on the cards if another relapse occurred -- and we tried to prepare ourselves psychologically.

Last week I spoke with a friend who received radiotherapy for Rb as a child, and asked her how she felt about the treatment -- its effectiveness in attacking her tumours, versus the side effects.

When she'd been treated, radiotherapy was the only treatment for Rb -- that or enucleation.

"Increased risk of second cancers is the main concern," she'd said immediately.

Radiotherapy is very effective at killing active tumours but it also damages other tissues, raising the risk that other cancers will develop, later in life.

The key questions are, By how much is this risk raised?

And how much sight is the treatment likely to preserve?

There's no point in giving radiotherapy -- and incurring that extra risk of later cancer -- to eyes that won't provide useful vision.

 

Asa's vision

As anyone who's spent much time with Asa can attest, he has very useful vision.

Just the other weekend, when we visited the London Aquarium, he was running around confidently in its dimly lit rooms and tunnels.

At the London Aquarium, July 6, 2013

But we realise now more clearly than ever before that he's in danger of losing his sight completely.

On Wednesday, the doctors for the first time raised enucleation as a possibility for the left eye, because they can't tell what's going on behind the cataract.

Ultrasound provides some information on what's going on there, but only on a gross scale -- "we can't see subtle changes," they said.

Let's consider in more detail, then, what radiotherapy involves.

 

What we know about radiotherapy

What we know about the treatment that's been recommended is this:

• It's external beam radiotherapy (a beam of radiation directed at the eyes from outside).
  
  Since the tumours in Asa's eyes are diffuse, they can't use the gentler forms of radiotherapy; instead they would have to treat the whole of both eyes.
  
  
• It's given under general anaesthetic, with a mask to immobilise the face.
  
  This stops the patient moving around, which would decrease precision.
   

  

  A mesh template for a mask used in radiotherapy.
  Image from the Macmillan website

   

   

   

   

  
  




• The course of treatment is usually one month.
  
  Treatments would be given from Monday to Friday, with a break on weekends -- i.e. 20 sessions in total.
  
  
• And, unlike with chemo, it's very rare to carry out further courses of radiotherapy after the  initial course.
  
  It either works or it doesn't.

What we don't know

There is of course a lot we don't know about radiotherapy.

We’ve heard that whole-eye radiotherapy sometimes affects the lacrimal gland (the tear duct), producing a debilitating "dry eye" syndrome that may be permanent.

How likely is it that Asa would suffer that?

And how high is the risk of second cancers?

The answer to this question depends in part on 

• how much long-term follow-up has been done
  
• and how much of that long-term follow-up involves children who've received equivalent doses of radiation, with equivalent precision, to what Asa would be getting. 

The doctors at the Royal London deflected some of our questions on Wednesday, encouraging us to ask the radiotherapists at Barts who carry out the treatments.

If anyone has relevant information on any of these questions, we'd be grateful if you would contact us.

 

A hard decision

What the choice seems to boil down to is this:

Certain blindness (double enucleation), with a lower risk of later-life suffering, or possible sight (radiotherapy), with a higher risk of later-life suffering.

At the moment it’s very difficult to evaluate those risks.

As the doctors are wont to say, "We don't have a crystal ball" to see the future.

 

Walk with Asa

In September we will again walk across London at night, to raise money for retinoblastoma research.

We do this in hope:

• that research may identify better treatment options than what’s available right now;
  
• that other families may be spared the hard decisions we have to make;
  
• and that other children with retinoblastoma may be spared Asa's suffering.

We invite you to support us here:

http://www.justgiving.com/walkwithasa2 

Reassurance

Yesterday I wrote to our doctor to ask what the neuro specialists had said at the Multi-Disciplinary Meeting, on viewing Asa's MRI scans.

Did the meeting throw up any new information on what might be behind the head pain? 

And what was the implication of the gliosis that had showed up in the MRI?

The doctor's reply:

No - the scan was not thought to show any cause for his head pain – the area of gliosis is very small and non-specific and is probably related to minor trauma ?during delivery and is definitely not the cause of his pain.

One of the nurse practitioners wondered if the pain could be a manifestation of migraine which is sometime seen in 2-3 year olds.  However, we will check the IO [intra-ocular] pressure in the left eye at his EUA to rule out glaucoma first.

We're greatly reassured by this.

The question of what's causing Asa's head pain remains, but we're steadily eliminating some of the scarier possibilities. 

The next EUA is on Wednesday, 17 July.

For now, we're making the most of our freedom -- and a recent spell of good weather.

On the Millennium Bridge, July 10, 2013

Relief

We don't like to add unnecessarily to the sum of anxiety in the world.

So it's with both humility and gratitude that we confess our fears about brain tumours were unfounded.

I quote here from the email we received from our doctor on Friday night, summarising the scan results:

From the report and my untutored eye there is nothing on the scan to account for Isaac’s symptoms [i.e. head pain] – the report mentions a small area of scarring (gliosis) on the right side  but I am sure that this is not causing any pain - I will discuss the scans at the neuro-oncology MDT [multi-disciplinary team meeting] on Tuesday and get back to you if anyone has any further thoughts on the problem.

It's worth noting that although the doctor describes herself as "untutored" in interpreting MRI's, she does in fact have 30 years of experience in treating retinoblastoma. (She is a self-effacing but extremely competent consultant.)

Although not a specialist in neurooncology, she would surely recognise the kind of brain tumours that are most commonly associated with Rb if she saw them.

Further questions

Obviously there are questions that remain.

• What might have caused the scarring -- the gliosis -- that was mentioned in the MRI report? 

• If the scarring doesn't account for the head pain Asa's had, could it have other implications?

• And if there's nothing in the MRI to account for the head pain, what is then behind it?

These things we need more information on.

Focusing on the positive

The main thing to focus on for now is that the scan provides no evidence of brain tumours.

That, our greatest fear, is ruled out.

For now everything is cool

Asa's third summer

We ended with a cliffhanger last time, describing 3 possible outcomes of Asa's last EUA.

As it was, the results of the EUA were much better than we'd feared, but not quite as good as we'd hoped.

The tumours in Asa's eyes appear to be stable.

They didn't shrink much as a result of the second-line chemo, but nor did they grow.

That puts the results somewhere between options 1 and 2 in terms of the scenarios we'd anticipated -- No dramatic response to chemo, but no new treatment required, at least for the moment.

Looking for signs

One encouraging point is that the ophthalmologist who examined Asa under anaesthetic didn't see any blood vessels inside the tumours -- blood supply being one of the things that would keep them growing.

So it's possible that despite the lack of shrinkage, they may have had the life taken out of them.

The cataract

The cataract in Asa's left eye, however, has definitely gotten worse.

This may be a result of retinal detachment, which could be due to the tumours (the retina was already detached at diagnosis, 18 months ago) or to the treatments he's received.

Because the cataract obscures much of Asa's left eye from the doctors' view even when he's under anaesthetic, we had to visit Moorfields -- London's specialist eye hospital -- for a high-resolution ultrasound, a way of "seeing through" the cataract.

The ultrasound seemed to be consistent with the initial EUA results: The tumours looked no bigger or smaller than they were before chemo, and there's some evidence that they're calcified.

Summer holidays

In the 2 weeks since the exams, we've enjoyed ourselves.

We spent a weekend with the grandparents in Essex, and last week we took a trip to Liverpool, where I was attending a conference (which I blogged about here).

Fulfilling a wish of Selam and grandma Kuri, Asa visited Anfield Stadium, home of Liverpool FC.

Our warrior in Liverpool

An audio recording of 30,000 people singing "You'll Never Walk Alone," played over the stadium tannoy -- a sound rather like a rising and falling wind -- made an impression on Asa, and he's since been imitating it, singing to himself.

Another exam

Tomorrow Asa has an MR (magnetic resonance) scan at Great Ormond Street, to check out some recurring head pain.

For several weeks now he'll be playing happily, or just hanging out with us, and all of a sudden he'll grab his head and cry.

This began during the latter part of chemo, and at first we assumed it was a side-effect of the drugs, which can cause discomfort and pain.

But it's persisted long since the chemo drugs left his system.

The scan might shed some light on this.

Our worst fear is that a brain tumour could be to blame. We've hardly spoken of this, because it's such a hard thing to contemplate.

The results, which should be available by Thursday, will, we pray, put those fears to rest.

Speaking and seeing

This week I got back to London after two months in Congo.

During the first weeks away I was able to talk with Selam by phone; after that we communicated mostly by text message. 

Asa didn't do all that well on the phone (when we'd talk, he'd often just laugh), but on my return I've discovered that he's made amazing progress in speaking.

His vocabulary reflects common preoccupations of children with animals (dog, cat, bunny, bear, and ait [Amharic for rat]) and vehicles (car, truck, plane, tractor, bus, and train). These things recur in his picture books and in toys; some of them he can also see through our front-room window, or on walks around the neighbourhood.

A lion driving a car... Asa digs this book.

Other words reflect experiences that are less common in childhood.

"Chemo", for instance, Asa uses to refer to a drip set. (He used the word when he last had a blood transfusion.)

And “ambulance” means something different to him than to many kids, because he’s used to riding to hospital in them.

A conversation

Yesterday, Selam and Asa were still in bed when I was about to head out the door, and I crawled over to them to say goodbye.

Asa opened his eyes and looked at my clothes.

"Yellow. Jacket."

"Yes, Daddy's wearing a yellow jacket," I said. "I'm going to ride my bike."

"Bike," he said. "Motorbike."

"Not a motorbike, just a bike," Selam corrected.

"Out?" Asa said.

"Yes, I'm going to work."

"Not yet."

This caught me by surprise.

I couldn't bear to say I was going right away.

"Not right away. Soon," I said.

"Back?" Asa asked.

"Yes, I’ll come back later."

That was by far the most complete conversation we've had so far.

The cataract

While Asa's language abilities have improved, his vision has deteriorated during the time I've been away.

As we learned in April, there's a cataract developing in his left eye. It's now visible in the form of a milky whiteness in the pupil.

The left eye was formerly his stronger eye. Now, apparently on account of the cataract, he's switched his preference to the right eye. When he's looking at books, or at images on his mum's smartphone (a favourite new toy), he'll cock his head and orient towards the right eye.

This right eye, however, has a centrally located tumour. And so the window he's peering through must be very small indeed.

Unexpected by the doctors, it’s unclear whether the cataract is a side-effect of the cancer, or the chemo, or independent of them.

Getting through chemo

Another wild card that came up in the past two months was a bacterial infection in the Hickman line, during the second cycle of chemo. This had us scared. Asa was in hospital for 8 days.

The Hickman line was eventually removed, and then reinserted a week later.

Thankfully the third and fourth cycles of chemo have gone relatively smoothly, without infections or long spells in hospital.

This is likely due at least in part to the presence of grandmother Kuri, who’s been living with us since April, and who provides such help around the house that Selam is able to concentrate better on keeping Asa happy.

Asa and grandmother Kuri, in the garden

Prospects

The prospects after the next EUA on June 19 are difficult to gauge.

There are at least three possibilities.

1. The most optimistic scenario -- the chemo has caused the tumours to recede dramatically, and no more treatment is needed.
   
   
2. Less optimistically, four cycles of chemo might have produced modest effects on the tumours, and two more cycles could be given before reevaluating progress.
   
   
3. The least optimistic scenario is that the chemo hasn’t had any substantial effect, and we need to consider other treatments.

It impossible to know which of these scenarios we’ll face – or whether, instead, we’ll receive another surprise.