The kindness of strangers

Day 56   

General status update: 

Hair: I am not going to count how many hairs are left on the comb every time I run it through my hair, because that would be the act of a crazy woman. Also, since I don’t know the sum total of all the hairs that were on my head to begin with, then I can’t subtract the daily number and then calculate the daily percentage hair loss or make projections as to total accumulated hair loss over the next 60 days or so. With graphs and things, on Excel. I have better things to do with my time, so it’s a very good thing I am not going to attempt any of these calculations. Obviously. 

Nausea demon: I thought he might have become completely dormant, and stopped taking the meds today, whereupon he woke up, yawned, stretched and kicked me in the stomach. 

Chemo Muse: She doesn’t like Excel, and numbers. She wants me WRITING. She says that as far as she knows, there is no Chemo Excel Muse. She doubts Bill Gates would allow it, frankly. 

Chemo Brian: He doesn’t like my Gregorian chant, so he’s been countering with The Doors. He actually witnessed the infamous incident where Jim Morrison whipped his willy out at a concert, or so he claims. Am beginning to think that Chemo Brian’s brain, what remains of it, is so scrambled that he is now just mentally Photoshopping himself into any famous event in rock history that pops up into his head. He’s very convincing, though, so it’s hard to be sure. 

Sleep, lack of: you know, we may have to delete this category soon, because it only now seems to apply to the first steroid-fuelled couple of days of the cycle. 

Fatigue/weakness: Annoying me a lot, this cycle.  I want to be strong again. I want to swim 100 lengths of the pool without stopping. Or, as a perhaps more realistic goal for this coming week, I want my legs to stop being quite so wobbly. 

Anxiety level (1-10): 10 whole days until the next chemo cycle starts, so this is as good as it gets. 

State of mind: stateless, it is forced to sleep upon seats in cerebral airports which it can never leave – the mental equivalent of Hotel California.

 

It’s the first Monday morning in September, 2012, four days after I was diagnosed with breast cancer; R has gone to work, and I am alone in the flat, deciding what to do next. I don’t currently have a job to go to; since I returned to the UK a year earlier to make a life with R, after taking several years out in Ayvalik to restore my house and camel barn and create the library, finding employment has proved challenging.  

Earlier in the year I worked for 3 months on a short term research contract for a demographic think-tank in Westminster, but my field is a narrow one, with jobs in short supply, and my age is against me. Over the summer I have been spending a great deal of time – 26 miles worth of time - swimming, and have been wondering about doing some kind of retraining. That will have to be put on hold for the time being, while I try to deal with the cancer. 

I’m sitting at my computer, and on the desk is the card that the Breast Care Nurse gave me last week, from ‘The Haven’, a charity providing support centres for people with breast cancer. I find The Haven's website, and start to read:  

The Haven was founded in 1997 by a woman called Sara Davenport, after her children’s nanny was diagnosed with breast cancer, and she realised how very little support there was available to help women with the devastating emotional and physical side effects of the disease and its gruelling treatments. Since then, funded entirely by charitable donations, it has gone on to establish three centres which provide, literally, a haven for those affected by breast cancer, and outreach services for those who are unable to visit The Haven in person :

‘We provide, completely free of charge, a wide range of therapies which help people to deal with the physical and emotional side effects of breast cancer. Our specialist nurses and experts in nutrition, exercise and emotional support provide tailor-made programmes for every person who comes through our doors. Our outreach programme, 'Haven at Home DVD', has been specially developed for people who can't get to our Havens so they can benefit from our unique care in the comfort of their own home.

Our team is committed to improving the lives of people affected by breast cancer. Our staff of clinical experts, experienced fundraisers, communications experts and highly trained therapists work across our Havens in London, Hereford and Leeds and are supported by our administration and reception teams. 

There are two easy ways access our free Haven programme either by booking an individual appointment with one of our specialist nurses or senior therapists or by coming to one of our Haven Introduction Days. Either way, there is no need for a referral of any kind - you can just ring us to make an appointment. We look forward to hearing from you. 

At this stage, the physical side effects of the disease and its treatment are some weeks in the future, but I am already aware that my emotional state is bordering on the deranged: some kind of auto-pilot in my brain enabled me to write the cheery, positive-sounding email to my family and friends a few days previously, reassuring them that this cancer is a fairly minor inconvenience, and that it will all be over by Christmas (the unlikelihood of which should have been apparent to me, even then, by historical analogy alone), and the research I have started into cancer is keeping me busy, but even so it is all wrong inside my head, which feels as if it might explode at any time, and I am sitting here alone and terrified, and I know that I need to get help of some kind, soon. 

The London Haven is just down the road in Fulham, and it says here on the website that you don’t need a referral, you can just phone them. It says that they are looking forward to hearing from me, so I should phone them, shouldn’t I?  

 I pick up the telephone and, with shaking hands, dial the number.

When a woman answers, brightly, cheerfully, asking how she can help, I am unable to speak. Tears start rolling down my face and I start making incoherent sobbing, choking sounds.  

‘Hello, hello? Are you alright?’ 

Eventually, I manage to get out a few words.  ‘I’m sorry, I’m sorry…’ 

The woman at the other end couldn’t be kinder: ‘Don’t worry, that’s what we’re here for. Now, how can we help you?’ 

‘I… I’ve just been diagnosed with breast cancer. I want to come and see you. Please.’

‘You sound quite distressed – we’re pretty booked up today, but I can try and find someone to see you this afternoon, if you’d like to come in today. Or tomorrow morning – whatever suits you best.’ 

Just making this phone call, just acknowledging that I need to make this phone call, has already been a huge mental effort, so I decide to leave it until the following day to take the next step. An appointment is made for the following morning, and I feel immense gratitude to the woman on the other end of the phone for her kindness; at this moment I have no way of foreseeing just how much and in how many different ways, during the painful months ahead, I will come to depend on the kindness of strangers.

Breaking the news

Day 48 

General status update: 

Hair: dormant, confined in Smurf hat/snood. Out for the count. Wish I was, too. 

Nausea demon: rather testy, and making a bit of a fight back today. 

Chemo Muse: urging me on to write some more of the back story, even though I’m feeling really sick. She’s so mean. They’re so mean. 

Chemo Brian: It’s so hard to resist when he holds his arms out from the sofa, and says ‘come over here and curl up next to me’. Not today, though. I need to work before the fatigue really sets in. 

Chemo Rat Brian: has settled in nicely on the sofa 

Fatigue/weakness: Still had a bit of steroid energy left this morning, but now it’s starting to drain away.

 

Sleep, lack of: asleep before 2am. Slight improvement. 

Anxiety level (1-10): lessened this cycle by having adequate supply of ALL anti-emetic drugs, which are just about holding me together. No nausea crisis seems imminent, which makes a nice change from FEC1 and FEC2 

State of mind: How did I get here? HOW?

 

Previously on Chemo Nights: it is the morning of Thursday 30^th August, 2012, and I have just received a diagnosis of breast cancer at the Charing Cross Hospital.

Now read on…

We emerge from the hospital, shell-shocked and silent, into a cold, damp August morning, and walk hand in hand up the Fulham Palace Road towards Hammersmith Broadway. There isn’t much conversation; we are both too stunned by what we have just heard, and I am trying not to cry. It’s getting on towards lunch time, so we stop at Pret to get some sandwiches on the way home.

Back at the flat, neither of us has much appetite as we sit at the table with our lunch, and discuss what to do next. The immediate problem is disseminating the bad news to those who need to know: close family and friends.

A few people know that I have been for a biopsy, and am going to receive the results today: my sisters, my close female friends and, unfortunately, my mother. I very much did not want my 81 year old mother to know even that I was going for the biopsy, not wishing to cause her unnecessary stress and anxiety should it turn out to be a false alarm; one of my sisters, unable to resist the temptation, has told her anyway, and I am quite angry about this.  My mother will be waiting to hear, very worried, and we need to let her know straight away.

As we talk about this I am crying, and know that I will not be able to hold a conversation with anyone else today, so I ask R to call BigSisFo, tell her, and ask her to call our mother, and other family members. While he does this, I retreat to the bedroom, close the door, and curl up on the bed; I do not want to listen. When R comes in a while later, he tells me that BigSisFo, greatly distressed by the news, has agreed to tell other family members, but couldn’t bear the thought of telling my mother so soon after hearing the news herself. So R decides to do this himself. Heroically, considering that at this point in our relationship he has only met my mother once, R calls her home in the Tramuntana mountains in Mallorca; after a brief conversation with my stepfather he is handed over to my mother, who is agitated and demanding the phone, and tells her that her middle daughter has breast cancer.

 

MamaFo apparently takes the news stoically, saying that as the mother of three daughters, this is a phone call she has dreaded receiving all her life. She understands that I cannot speak to anyone now, and tells R that she will call me tomorrow.

There still remains the problem of telling others, and I decide to do this immediately by email, as I want to get it over with in one go. The thought of having to have multiple conversations on the subject appals me. At this point I realise I need to be alone for a while, and that R could probably also do with some mental space in which to process the news, and I send him off to the office, although we both know he won’t be getting much done.  

I make some coffee, sit down at the computer and, pretty much on auto-pilot, start to write, deciding to focus on the positive aspects of the situation, so as not to alarm anyone. At 11 minutes past four, I send out this email to family members and friends, copying it to R.

 

Subject: Some bad news...

Caroline Foster <carolinefo@gmail.com>						30/08/2012

... but it could have been worse. 

In brief, and as a round robin, because I'm too done in to think/talk about this much more for today: 

This morning at the Charing Cross Hospital they told me I have invasive ductal breast cancer, Grade 2. The lump is not huge, about 1 1/2 centimetres.

This is the most common form of breast cancer, and the 'best' sort to have; they have got the treatment off to a fine art. And at the stage it's at, it's not likely to kill me.

They will do a lumpectomy (in 3/4 weeks' time), whip out the lump, and a margin around it to check if it has started spreading. Afterwards the scarring should be fairly minimal, and the appearance of the breast normal. It helps that my breast is largish.

The operation can be done as a day op, so although it's a general anaesthetic, I won't even have to stay in overnight. R will take me home to have pizza.

They will also take out a lymph node, to check if it has spread there, but at the moment they don't think it has. 

Then I will have 3-6 weeks of radiotherapy, which is 15 mins every day, Mon-Friday. It doesn't hurt or make your hair fall out, but it does make you quite tired, apparently. At this stage I am not going to bother researching what other side effects there may be - we'll deal with that when we come to it. 

Unless it turns out to be worse than they think (and they can't be 100% sure until they do the op), I won't have to have chemotherapy, which is a huge plus. Although I had already decided on going for the full hijab rather than a wig, if necessary. So much more stylish. 

If all goes well, the treatment will be over by the New Year, and I can get on with my life. So, really, it's very annoying, and tiresome, and won't be a bundle of laughs, but it could have been an awful lot worse. I have my own cancer care nurse, Vanessa, who is lovely, very knowledgeable and helpful, and there are all sorts of support services. Breast cancer is very well catered for. 

Anyway, it's much better knowing than not knowing, because once you know you can work out how to manage it - and this sounds eminently manageable. As the op won't be for several weeks, I will be back at the swimming pool tomorrow to resume training for next year's planned swim across the Hellespont, which will take place, coincidentally, exactly one year from today - inshallah! 

C xxx

p.s. Not unnaturally, over the last couple of weeks I have given some thought to provisional funeral plans, and have settled upon being cremated and then having my ashes fired into the sky in a huge rocket, which is not quite as a good as a Viking funeral, but not half bad (and possible to arrange, which a Viking funeral sadly no longer is). Given the high survival rate of my particular form of cancer, these plans will have to be put on hold for the foreseeable future, but I'm warning you all now that my funeral, when it eventually happens, hopefully many decades from now, is unlikely to be an understated affair.

 

R emails me back immediately: 

Good. Well done tatlim. Xxxxxx

 

When he comes home that evening we drink a lot of red wine to anaesthetise ourselves as we cuddle up on the sofa together, watching the Paralympics on the television. For this day, that is quite enough.

 

We will have plenty of time to talk and think about cancer later on.

Everybody hurts...

Day 38  

General status update 

Hair: There. Still.  

Nausea demon: He didn’t get much of a look in today. There was a new arrival from the infernal regions, all revved up and raring to go. 

Chemo Muse: whipping me on in the face of extreme inertia, not to mention existential despair. I have no idea how I managed to write any kind of  blog post at all today. If it‘s total rubbish, you can blame the 

Despair Demon: Woke up this morning, like someone in a blues song, feeling that at some point during the night the demon of Despair had drifted in through the bedroom window, and settled herself around me in a clinging, crippling fog.  Yeah, I’ve got through 37 days of chemo – but there’s still another 70 or so to go and – I’m so damn TIRED of it already. Tired of feeling sick all the time, tired of feeling toxic inside, tired of feeling weak and tired… all for something that only has a 7-8% chance of stopping the cancer from coming back. I wish she’d stop whispering all this stuff in my ear – it’s really not helping.

Chemo Brian: He came down to the hospital with me this afternoon, and I fell asleep on his shoulder during the 1 hour and 15 minutes I waited after the appointed time to have my PICC line flushed. It was an excellent nap. 

Fatigue/weakness: My constant companions.  

Sleep, lack of: totally n/a. - fell asleep in the haematology clinic waiting room at the hospital today, surrounded by strangers.

Anxiety level (1-10): Whatever

 

State of mind: Not waving, but drowning.

The thing I remember most clearly from the moments immediately after being told I had breast cancer is trying desperately hard not to cry. Looking back, I’m not quite sure why, but it seemed tremendously important at the time; perhaps it was because of my extreme aversion, rooted in our disastrous initial encounter the previous week, to the person breaking the news to me.

To be fair, the abominable Mr G, Consultant Breast Surgeon, does the deed gently, in a manner which cannot be faulted - but you know what they say, it’s very hard to recover from making a fatally bad first impression. Having told me that I have invasive ductal breast cancer in my right breast, and that they think the tumour is about 1.4cm in size , Mr G begins to explain the finer detail, as I gaze at him blankly though a mist of tears.

This is the most common form of breast cancer: my tumour has been found relatively early, and is only stage 2; although it is an invasive cancer, they don’t think it has yet spread to my lymph nodes, or anywhere else. The recommended course of treatment is surgery to remove the tumour – a ’wide local excision’ or lumpectomy, just taking out the tumour and a margin of tissue around it, which means that I won’t lose my breast – followed by a course of radiotherapy, and then several years of hormonal drugs, depending on the exact hormonal status of the tumour, which has yet to be established. At this stage, chemotherapy does not seem to be indicated. This is a very treatable cancer, and my prognosis is good.

As he is explaining all this I suddenly recall that you’re meant to take notes in these situations, as afterwards you may not remember much of what the doctor tells you. I start fumbling around in my bag for my notebook and pen, muttering ‘I must take notes’.

Vanessa the Breast Care Nurse intervenes then, speaking for the first time. ‘Don’t worry about that now, Caroline’ she says, very gently. ‘I’ll go over it all with you again afterwards.’

There isn’t a great deal more to be said, anyway. I am to be put on the waiting list for surgery, and the operation will probably take place within 3 to 4 weeks. In the intervening period, Vanessa will be my point of contact with the hospital, and deal with any queries I might have. And right now, we are to adjourn to another room with Vanessa, so that we can go through everything again rather more slowly, and she can give us some information leaflets.

I thank Mr G politely – since his initial rudeness to me I have taken to treating him with exaggerated courtesy – and Vanessa leads us to another room, with comfortable chairs around a table on which stands a large box of tissues.

I start to cry properly now, less inhibited with Mr G no longer present, and bury my face in a handful of tissues. R has his arm around my shoulder, stroking my arm, and Vanessa brings me a glass of water.

I smile my thanks at her through my tears ‘You have a very difficult job, having to cope with people’s reactions at times like this.’

‘It’s not easy’ she replies ‘But the best thing about it is seeing women get through all this, and come out the other side. As you will, although it may not seem like that now.’

And with that remark, instantly bringing a positive note into a very dark moment, when R and I are transfixed with shock and horror at the news we have just received, Vanessa sets the tone for our relationship; she is not only a kind, compassionate person, whom I instantly like and trust, she is also extraordinarily good at her job.

Slowly, we recap the information about my illness, and Vanessa marks the relevant pages in a Macmillan booklet about breast cancer, ticking everything that applies to my particular cancer, type of tumour, and proposed course of treatment, so that I can go back and read it later, and know exactly which bits apply to me. It’s still all quite confusing –

What’s the difference between stages and grades of cancer? Why do some people have radiotherapy and some have chemotherapy, and some both? What is all this business about the hormonal status of tumours?

- but I know the information is all there for me to read and digest later on.

There is one outstanding issue, though, which I feel impelled to raise. I tell Vanessa the story of what happened with Mr G. the previous week at my biopsy appointment, how he hadn’t bothered to introduce himself to me, how angry this had made me, and how this discourtesy had made me extremely reluctant to have anything more to do with him.

‘I hate to be difficult’ I say ‘but I am very, very unhappy at the thought of that man coming anywhere near me with a scalpel. Is there any chance that I might be able to have a different surgeon for the operation?’

‘Oh, don’t worry’ says Vanessa ‘He doesn’t operate here. You’ll definitely be getting a different surgeon’.

The sense of relief is enormous.

She goes on to explain how I will have to come back to the hospital for various appointments before the operation: to meet the surgeon, and discuss how he will perform the operation; to be assessed for my fitness to undergo a general anaesthetic; and finally, the day before the operation, to have radioactive dye injected into my breast, so that they can identify the ‘sentinel’ lymph node. During the operation they will remove the first lymph node under my arm into which the dye has drained from the breast, as this will be the first port of call for cancer cells, if the cancer has begun to spread. If the sentinel lymph node is clear of cancer, as they think, no further action will need be taken; conversely, should there be any cancer cells in the sentinel node, further action, as yet unspecified, might be called for. But that’s not a bridge we need to cross until and unless we come to it.

As we gather up the various leaflets and information sheets prior to leaving, Vanessa hands me one further item, a card from somewhere called ‘The Haven’, in Fulham. ‘It’s a support centre for people with breast cancer’ she says ‘they offer complementary therapies, counselling, nutritional advice – a wide range of services. It’s all free. Many of our patients find it a great help.’

I look down at the card, beautifully printed, engraved with the pink ribbon logo, and think:

 But this place is for people with cancer…

 Oh.

Yes.

Right.

 

That would be me.

 

There is an Angel of Death, and her name is Vanessa

Day 33:  

General status update 

Hair: its continued adherence to my head, after 2 doses of chemo and 30 odd days, is a matter of wonder and amazement all round. Amusingly, on Twitter I have just been followed by the company that makes the cold cap, and another organisation which promotes its use. I may yet get to star in their promotional literature.

Nausea demon: he didn’t come home last night, but waltzed in trying to look nonchalant this morning, as the Chemo Muse and I were eating our breakfast. No-one said anything about anything, and the Chemo Muse and I decided to have another round of toast. 

Chemo Muse: keeping me busy; in a previous existence she may well have been an overseer of galley slaves, using a sharp flick of her whip to encourage the poor groaning wretches chained to their oars. Not that I resent her, or anything.

Chemo Brian: keeps beckoning me towards the sofa – it is so, so tempting, yet I must resist. 

Fatigue/weakness: back with a vengeance. I went out for some fresh air, and was barely able to put one foot in front of the other. Felt so weak and vulnerable, especially when a big burly bloke came up and asked me for money. Scurried – sorry, tottered – back to the womb-like safety of Gurkha Towers fairly shortly afterwards. 

Eyes: The 70s disco light effects have now abated, but there’s someone else on my chemo thread having strange eye occurrences, so it may have been chemo-related. 

Sleep, lack of: n/a 

Anxiety level (1-10): I simply don’t have the energy to be anxious at the moment 

State of mind: Trying very hard not to think about the fact that there are going to be another 70 days and nights of this.

 

 

In the days before the abolition of capital punishment in the UK, when a prisoner in the dock saw the judge donning the black cap, he or she knew that the game was up: they were about to given the death sentence. Condemned prisoners thus knew their fate immediately, before the sentence was pronounced by the judge; the modern equivalent of the black cap and its symbolism is the presence of a Breast Care Nurse at a meeting to discuss the results of your biopsy.

A week after my bruising encounter with the biopsy needle and the abominably discourteous Mr G, R & I sit in the waiting room at the Charing Cross Hospital Breast Care Clinic at just after 9am; we have an appointment at 9.10 am to hear the biopsy results that will determine my future. It has been a difficult week, with far too much time spent googling breast cancer, and finding far too much information about its confusingly many different varieties.

My tip to anyone in the same situation would be NOT to do this, although I doubt it would have deterred me, had I been given such advice. Iin retrospect, however, it was just a very scary waste of time: the only particular sub-variety of breast cancer you need to know about is the one you are actually diagnosed with, if it comes to it. I would have been much better off spending the time watching my as yet unviewed boxed set of series 2 of The Killing.

There are only a few of us in the waiting room, as it is so early, and our faces are all painted various shades of pale and stressed. I look round at the other women, two of whom are wearing the tell–tale chemo headscarves, and think ‘No-one is here for a good reason’. After a few minutes Mr G enters the clinic and, as he walks past, smiles at me.

Much like a Roman augur scanning the entrails of a bird for portents of divine intent, I am desperate for any sign that the future might be going to pan out the way I want it to; I thus interpret this smile as a favourable omen.

 ‘He wouldn’t have done that if I’d got cancer, would he?’ I say to myself, by way of reassurance.  ‘He wouldn’t have smiled at someone if he was about to tell them they had cancer’.

We don’t have to wait long. Mr G comes to the office door and calls us in, and as we sit down he says ‘We’ll start in just a moment – as soon as the Breast Care Nurse comes to join us.’

And this is the moment I know for certain that I have breast cancer, because it doesn’t seem feasible, even to one as open to denial as I then was, that a Breast Care Nurse is going to be joining our meeting in order to advise me on how to look after my breasts better, so that they don’t grow any more of these silly lumps in future.

There is an Angel of Death and, as it turns out, her name is Vanessa.

When Vanessa the Breast Care Nurse has joined us, and been introduced, Mr G has to don his metaphorical black cap and pronounce the sentence.

He leans forward very slightly and looks at me.

‘As you know,’ he begins ‘we were very worried about you last week…’

I’m sorry, WHAT? I don’t know any such thing. You didn’t SAY you were very worried about me, you said I had a lump with a pronounced ridge. No one at any point mentioned being very worried about me. Since when does ‘lump with a pronounced ridge’ mean WE ARE VERY WORRIED ABOUT YOU?’ Am I expected to make inferences from your oblique pronouncements? Would there have been anything wrong with saying ‘We are very worried about you BECAUSE you have a lump with a pronounced ridge, and that is a Very Bad Sign which  means you almost certainly have breast cancer’?

Wouldn’t it have been more sporting to have given me a bit more of a f***ing CLUE? How was I expected to know that ‘lump with a pronounced ridge’ = ‘breast cancer’? I’m not the lump expert, Mr G – you are. 

‘..and I’m afraid to say that the biopsy results have confirmed that you have Invasive Ductal Breast Cancer.’

Then R is holding my hand tightly as the world goes all blurred; my old life has vanished in an instant, and a new and very frightening one has come to replace it.

 

 

 

Addendum, 12th January 2012: it has been pointed out to me  - by my old tutor at Oxford, who takes his job so seriously that he is still critiquing my work some years after his professional responsibilities towards me  ceased – thank you, Philip! - that it is rather alarmist to compare a diagnosis of cancer to a death sentence and, of course, it is true that a diagnosis of cancer is not necessarily a death sentence.

 

I have already written on the blog elsewhere about my own prognosis:  given the nature of my tumour, and the various treatments I have had, am now having and will have later - surgery, chemotherapy, radiotherapy, and the hormonal drug Tamoxifen - I have a roughly 91% of disease-free survival for the next five years. I have NOT received a death sentence. Probably.

But in the blog post I made the analogy between the donning of the black cap and the appearance of the Breast Care Nurse to recreate my state of mind at the time; that was what went through my mind at that moment. When I heard that the Breast Care Nurse  was coming, I knew immediately that at the very least I was about to be told that I had a life-threatening illness,  and at worst - if it turned out to be a very aggressive cancer, or one that had already spread to my bones, brain or liver - it might mean, effectively, a death sentence.

Vanessa has been a huge support to me, and is incredibly good at what must be one of the

world’s most emotionally harrowing jobs, something I will be writing about later – but at the moment she first came into my life, her very appearance in the room symbolised the fact that I was about to hear some very bad news indeed.