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.