There is…

1 February, the sky today.

Today the sky is David Hockney blue. An unexpected bonus. A piece of delight, of joy. Normal.

There is normal in moments, the visit to the snowdrop garden on Sunday with my friend, the joy of the snowdrops, the mooching in the kitchen utensils section together in the garden centre, the decision of buying a colander for the allotment; shall I get the dinky turquoise one, or this lime green silicone one that folds flat? It is a good feeling when you know at the time you are having a good day. There is the yellow sign flashing on the motorway as I drive home. SALT SPREADING. Are we expecting a frost? Sherbet lemons that fizz in my mouth.

Several evenings this last week at sunset the sky is clear and there is Venus appearing first, followed by Jupiter, they hang in a line with a crescent moon between them. They are where they should be, where we know they will be. I can pick a random date three weeks from now (not actually random at all, 21 February, my fifth year ‘anniversary’ from diagnosis) and I can know where they will be in the night sky. I find that reassuring. Normal.

Bruised

My least favourite version of a hospital gown. Printed with the words 'hospital use only' - that's funny because I thought it would look good as a party dress.

Having been so open about my recent surgery for nipple reconstruction I feel it’s only fair to update you on how it’s all turned out. OK so the administration of my hospital experience was ‘not ideal’ and I’ve written plenty about that (please note just over 7,000 words, and all of them, together with Ronnie’s accompanying blog, sent hard-copy to the hospital – more about their response will follow in another blog post). But surgically this was very straightforward and has gone well. I also have the most wonderful kind and gentle and skilled plastic surgeon – Ken Graham – who I trust completely. And I know he will always do his best for me.

So for ten days after surgery I have a blue foam block covering my new nipple and dressings on the other breast where I’ve had some revision for symmetry. And a four-inch suture line on the inside of my upper thigh which is frankly, very uncomfortable. That was the donor site for the skin which was used to create an areola (which will mean I don’t need any tattoo-ing if the colour works out well). And I don’t mind telling you that having three surgical sites in particularly senstive areas do in fact hurt, I feel delicate and bruised. The effort of bending over to paint my toe nails, the tenderness, the way I am frightened that I will knock myself and hurt. Impossible to sleep on my side, too uncomfortable because of the stitches on both sides. All those things that are familiar post-surgery.

And all this healing time is frankly boring. I don’t get out much, I can’t do anything very active. I sleep long and nap often. I have some visitors who bring me chocolate and cake and we chat. I’ve been to the cinema and also went out for delicious pizza with my friend Karen, but post-surgery is a time for rest and healing.

So as I anxiously look at myself I get to see bits of stitches, dried blood and bruising. That’s what surgery looks like while it’s healing.

‘Not ideal.’

I don’t usually write 7,000 word long blog posts. Some things, though, require a lot to be said. This is about the NHS. And me.

Thursday 3 November 2011. My day starts at 6.30am. My days rarely start that early, me not being a morning person. But really my day starts at midnight, the last time I’m allowed to eat or drink before surgery, so we ate late that evening and then I had a chocolate mousse and ended with a drink of water at midnight.

I don’t sleep particularly well. I’ve only had notice of this surgery two days ago. A cancellation, can I make it? Admissions ask me… to them it’s a simple admin procedure, to fill up a booked and staffed operating theatre on Thursday.

To me, it’s not quite that simple.

I generally try to write about patient experience – mine – using my point of view and my understanding of ‘the other side’. Today I’m just going to write about mine.

To me, having surgery in two days’ time is like cancelling my life from that point for several weeks – an unspecified time based on a recovery period estimated to be between two and four weeks.

To me it means that the longing for ‘normal’ and ‘ordinary’ that a cancer patient desires, will be interrupted. This is my fifth year post-diagnosis of breast cancer. Medically that’s good. I’m still alive, well, NED. (No Evidence of Disease, not cured). But it’s only this last summer that I have been able to describe my life as normal. Three years of intense treatment and six lots of surgery, culminating in DIEP breast reconstruction (ten hours in theatre, three months recovery, plus the added complication of an abdominal seroma), and revision six months later, both in 2009. And the following year, 2010, mostly in deep troughs of depression. Normal, apparently, say my medical team. A post trauma response.

This year, 2011, has been better, brighter. Finally I’m back to myself. I’m boxing, running, swimming, playing squash, learning the piano, enjoying new friendships (the better ones, the ones that lasted through cancer or the new post-cancer ones), I’ve spoken at a conference about patient information in the NHS,  I’ve been to New Jersey to visit my new blogging friend Rach, heck I’ve even been to Buckingham Palace in recognition of my advocacy work, speaking out as a patient, and my book was highly commended by the British Medical Association; so I’ve even been into the heart of the medical establishment where they describe my book – Being Sarah – as ‘intelligent and well-written’. Not a bad year all round. But mostly it’s normal and it’s an active life. I’m enjoying it.

But surgery wrenches me and Ronnie out of all that and into hospital, recovery, dressings clinic appointments

Good enough. For now.

The view while waiting; in the consultation room. 

It’s the time of year when the sun has started to noticeably slip lower in the sky. It shines through the leaves of the trees making alternate golden light and shadows in the car as I drive home from the allotment. The year is turning.

Today I have had my ‘routine’ check with my breast surgeon, Alison Waghorn. A mild anxiety has been with me for most of last week. The usual feeling, even though I have nothing to worry about. But we always have something to worry about; fear of recurrence, even if there are no symptoms. And I go to the hospital with Ronnie, it feels like I have been in this lift a million times. The same waiting room, the file that is mine that is heavy and full. We sit there, and then we sit in the consultation room and wait, reading the notice about the Barium Enema referral procedure for the thousandth time. This room where I have spent so much of my life, or so much of my life where I am in a heightened sense of awareness.

And when Alison Waghorn comes she says she is sorry to have kept me, and she flops down onto a chair and smiles at me. She is the same age as me. We’ve become friendly during the last four and half years. We talk about my book – she liked it, says she likes the honesty in it, that it’s helped her to see things ‘from the other side’. She’s bought copies for her mum to help her understand what she does, and also for her aunt who works in a hospital too. And we chat about my recent trip to Buckingham Palace (she was impressed), and look at the photos, and chat about our latest camping holiday in the Lake District. And then we get down to the medical bit. I will spare you the details of a full breast exam, of the discussions of my reconstruction, the exclamations about my rub-on nipple transfer, how realistic it looks. All is well. For now.

Who wants to talk about cancer and death?

April 2007

In the weeks after my diagnosis in 2007 a friend of mine arranged a lunch for me with a couple of other women who had all ‘been through’ breast cancer, a term I hear but don’t use myself. I reflect now how sad it is that it was so easy to find other women to have lunch with a 43 year old newly diagnosed woman who’d recently had a mastectomy, that there are so many other women. But it was a kind gesture, supportive to me, and I appreciated it. The two women were older than me, and our opening conversations were all about breast reconstruction, like that was the most important thing about breast cancer for a woman my age. Something I was not even considering at this point.


What I was considering at this point, the sort of thing that was keeping me awake at night, was actually death. My death. Soon. Possibly. Or sooner than I’d planned anyway. Because of the nature of the disease. It insidiously creeps beyond the breast and sneaks into other parts of your body, even when you think it’s been treated. Secondary breast cancer. The dread of that. That’s what I was worried about, not looking like I still had two breasts. Actually.


I asked them both, ‘Do you ever think about secondaries?’ Innocently asked. In unison, as one chorus, they replied, ‘Oh, no of course not.’


But, I see now, that cannot have been true. Every woman I’ve talked to since then about breast cancer worries about secondaries, at some point. Were those women trying to protect me somehow, or was it some denial of the darker aspects of breast cancer? So is this a version of breast cancer where you don’t tell your sisters that you’ll wake at 4am and everything will become suspicious…. no, no, no, too horrible?


Instead, let’s talk about tissue transfer, or lumps of silicone that will present us as ‘normal’ shall we? But I do not want, and have never wanted, to be normal.


And life beyond breast cancer diagnosis has not returned to normal. Not the same as before, and I don’t think it ever will. I am finding, more often than I would like, when I have conversations with new friends I inevitably get to the point where breast cancer gets mentioned. And I either decide to disclose the fact that I’ve had a breast cancer diagnosis, or I can’t find a suitable answer to a simple question, like ‘Why do you work part-time?’ Then there is that awkward moment where you see that look in their eyes which says they don’t know whether to pity you and offer sympathy, or to run for the door because they didn’t want to have people saying ‘cancer’ turn up in their conversations. And then they usually never mention it again.


So that’s why I hang out in the blogosphere, where other women speak the same things. It’s the easy way we can get almost immediately to the ‘important’ stuff – if we want to – like dying, like love, like life, nothing superficial.


Tell it like it is, but also laugh, be angry, and reflect and understand. Be emotional, true and honest. That’s my normal.




I am grateful to Anna Rachnel, my friend, a great Can-Do Woman and fellow blogger on The Cancer Culture Chronicles, for our conversation which helped me develop my thoughts for this post. Thank you Anna.

50 things

Barbara Brenner, of Breast Cancer Action, said, ‘There is no single word to express how breast cancer had changed my life, or to convey my experience of breast cancer.’

No, me neither.

So, I can feel a list coming on:

50 things I want to express about how breast cancer has changed my life.

1 The flat days.

2 The fear.

3 The scars.

4 The aching in my right shoulder, a reminder of all the surgery.

5 The aching in my right armpit, the edge of the flap (the reconstructed breast), telling me it’s there, that I have overdone things, that I am physically tired – I ignore it.

6 The menopausal sweating.

7 I mean like ‘someone’s thrown a bucket of water over my head’ type sweating.

8 The menopausal temperature fluctuations.

9 The disturbed nights, losing sleep, due to menopause.

10 The disturbed nights, losing more sleep, due to worry. Worry about death, recurrence.

11 Generally worrying about things more.

12 Worrying about things less, because it profoundly doesn’t matter.

13 The gnawing anxiety as doctors appointments loom.

14 The sense of ‘what’s that!?’ at the slightest symptom. Is it secondaries?

15 The ‘snuffle’ and sneezing symptom, sometimes in the morning, often after eating food, a mystery to the  doctors but explained by the menopause.

16 The occasional blotchy rash on my face, neck and shoulders. Menopause related.

17 Everything menopause.

18 Opening the diary and seeing two doctors’ and hospital appointments in the same week.

19 The fear of new social situations. (I cannot emphasise how difficult this is for me, I was an extremely  confident person before breast cancer. I had no idea it would be so damaging to my confidence).

20 Loss of confidence.

21 The effort I have to make to do things, sometimes.

22 The joy I can experience, joy in life, joy in nature. Can be exquisite.

23 Fascination in nature. (Did that happen after breast cancer? Or do I just notice more.)

24 I notice more.

25 Being a breast cancer patient.

26 Sitting in cancer clinics.

27 The tightness and tenderness I feel some days in my abdomen, the stretching from the DIEP surgery, 18 months ago, but I still feel it.

28 My silicone nipple starting to peel off around the edge, and being too impatient to clean it and get the nipple glue out of the fridge and then wait for it to dry.

29 The fluff around the silicone nipple. Reminds me it’s not really a nipple.

30 The gobbits of surgical glue after cleaning the nipple, like sticky lumps of snot that turn up in the bathroom.  Thanks for that.

31 That I can’t wear a bra for any length of time, too much surgery, too much scar tissue.

32 The only bras I can find that are comfortable enough are soft cup, or nursing bras.

33 I find wearing a nursing bra post breast cancer a bit depressing sometimes.

34 I miss thin bra straps. Nursing bras don’t have thin straps. They are wide and boring.

35 I find myself still drooling in the window of lingerie shops, sort of hoped I would be back there… but I’m not yet.

36 I have discovered that knitting, a flask of peppermint tea and an iPod can entertain you for many, many hours in hospital waiting rooms.

37 More on the iPod – Tetris is compelling.

38 The joy of blogging. Why didn’t I discover this before?

39 Emerging from treatment and saying ‘What’s Facebook?’ Then discovering that Facebook is a brilliant  communication tool.

40 The kindness of strangers has always touched me.

41 The kindness of strangers surprises me.

42 All seasons are now precious. Because the possibility of not seeing the next spring, or summer, or autumn, or winter, is real.

43 Still being alive.

44 Against statistical possibilities.

45 Not wanting to sound like a moaning misery guts.

46 Wanting to say it’s unfair. And horrible.

47 It is horrible. And that’s why I’m angry.

48 That I think I am bleating about my pain, my experience, and I want a normal life again.

49 I do not want to, and have never wanted to, be normal.

50 I often find. That life after breast cancer is a list of contradictions.