Wednesday, January 16, 2013

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.

 

8 comments:

  1. here's wishing you can make the trip up to Yorkshire.. first hand knowledge of the rat squatters.. and of course we want more chuckles from the Fo girls! xx

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    1. It's looking good at the moment - fingers crossed! I think the trip to Yorkshire will do both R and I a power of good right now. The last few months have been a bit full-on, so getting away, even just for a couple of days, will be wonderful.

      Even if there are rats in the roof - possibly, by now dEAD rats in the roof. It's tough up north.

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  2. Yep, everybody hurts, everybody cries, sometimes; take comfort on your friends...This song still makes my eyes well up.
    Over a month into this hell and I am impressed with how well you are still holding up, with demons and muses and brains that you hadn't known before...

    It's not fair, it's pretty awful. All I can do is to offer you hugs of warmth and strength my friend, and give a few to R from me too, xxx

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    1. Thanks, T xxx Feeling a bit more cheerful this morning. It's a long haul, and there are bound to be dips sometimes, I guess.

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  3. This is far from 'total rubbish'; it's one of the best and clearest expositions of that process, and what it feels like, that I've seen.
    Not that it's any help at all, with the Despair Demon, to have someone outside saying brightly Gosh that's awfully good.
    I suppose, given what chemo does to your taste buds, gin is still off the cards?
    JLS

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    1. Thank you - actually , it does help xx
      And I hope writing this is going to help people who might be at the beginning of the same process and are as overwhelmed and terrified as I was. It's very hard at the beginning, and demystification helps, I think. Even about stuff like the cold cap. There's just so much to take in.

      Re alcohol, mysteriously, this cycle I have been able to have the odd glass of red wine - during the first cycle I couldn't go anywhere near it. FEC veterans tell me that every cycle is quite different, so you just never know what is going to hit you each time - apart from the nausea, obvs, which is a constant. FEC is famous for nausea..

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  4. CarFo, I've been down with influenza for the past 5-6 days and didn't want to give you any of my cyber germs. I'm getting caught up now! I hope the visit to Yorkshire goes as planned... you know, nice visit, no rats. I am curious about 1 point (which I may have missed, or you may be saving for an upcoming post) -- when did it move from surgery and no chemo to 100 days of chemo? Did I miss something??

    Best-est wishes to you and R (and Hank, BigSisFo and the MC, etc.)


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    1. Get well soon! I gather there's a bit of an influenza epidemic going on in north America at the moment - hope you'll be fully recoevered soon.

      Re the chemo - no, you haven't missed anything,the prospect of chemo didn't raise its ugly head until some time later, and I'm going to write about that in due course.

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