The C-Files

Another perfect pressie from my sis

Have you ever seen your medical files? As of last year, my hospital file was pretty thin: a laparoscopy to treat endometriosis when we were having trouble conceiving after two years of summoning the stork, then maternity notes from having our two kiddies, and a potential issue with a mole (the skin type, not the small furry mammal or a spy). C’est tout.

Then come October 2010, it started padding out. Today, it’s around five inches thick and pretty hefty. Much like this blog, it started out as an everyday tale of an ordinary woman (mother, worker, wife, daughter, sister, friend), then took a dramatic turn into tragedy, before rallying, at the end of Part Two, with an uplifting sequence.

Today I not only got the opportunity to carry this tome, but also to read it. I had my appointment with my surgeon, the Very Magick Miss Tracey Irvine, to go over the Full Story of my surgery results, followed by an oncology appointment to regroup post-chemo and pre-radiotherapy. I said I may as well carry my own notes from one meeting to the next. And there was the usual 80 minute wait in the oncology clinic, so, er, me and DH had a look. I have to say, it felt really sneaky, and illicit, like we were doing something terribly naughty, and every time a nurse went by I closed it and acted all innocent. Which is weird, because it’s my file, all about me, and there’s nothing in there I didn’t know already, bar some tables of medical data I don’t understand anyway. But still, it’s an unusual situation, having access to your notes.

[Quick break for some olives and a shlurp of sauv, back in a sec.]

It was a fascinating read. Not quite Man Booker prize-winning (although who knows what creative writing project might be the result of this rather interesting interlude in my life). Now I know everything’s looking good, I could read things like ‘malignant’ and ‘stage three, grade three’ quite dispassionately and think, gosh, no wonder everyone looked so serious when I was diagnosed. This is the sort of cancer that used to be a death sentence, basically. I asked specifically not to be told these things in the beginning, as I didn’t want to scare myself, and was concentrating on being in a calm bubble and successful treatment. All the correspondence between my hospital teams and my GP is there, including a couple of letters from my oncologist, Dr Houston, describing me as a ‘very pleasant lady’. Hilarious, esp as I have probably been one of his least passive patients.

There were also some things which I found emotional to read. The labour, birth and post-natal records for DD and DS were really moving. The exact moment I ‘delivered a healthy male/female baby’!!! Although there was a BRILLIANT contrast between my birth plan, which stated primly ‘I would like to use the birthing pool,’ and a note from the midwife I was yelling at during DS’s birth: ‘She asked for Entonox (gas and air). She does not want to use the birthing pool’.

And then a surprising, small note from the doctor who did my original mammogram (and broke the news, as gently as she could, that I had cancer and would need surgery and chemotherapy) to my surgeon, saying very kindly that we had found the news very difficult to hear, especially DH, and we would need lots of emotional support on our ‘cancer journey’. That blew me away. I’d sort of assumed all the scientists we’ve dealt with had been focused on the facts of treating a tumour, but thinking about it we’ve had a huge amount of recognition of our feelings, too, and have been handled extraordinarily sensitively. I know this isn’t the experience of everyone I’ve heard of who has been treated for cancer in other parts of the UK, and it made me feel, yet again, extremely lucky.

Anyway, back to my meeting with my surgeon today. I hugged and thanked her. She examined me, changed my dressing, and looked rather pleased with her work. Everyone who has changed my dressing over the past week has marvelled at her tiny stitching – the scars really are incredibly fine already, like in the Elves and the Shoemaker or something. Then (reclothed) we got down to business. In the beginning, I had two tumours side by side, measuring over 4cm. These had visually and palpably disappeared midway through the chemo. All that remained was 4mm of low grade cancer. Which she removed. There had also been 9cm of high grade DCIS (pre-cancer). This entire area was removed. When this was analysed, there was only 3cm left, so the margins were more than generous. Remember, this isn’t meant to happen. These are good drugs, people, and I say this as someone who will normally err on the side of complementary or alternative therapy. As I had definitely had cancer in one lymph node, all 30 nodes in my right armpit were removed. In the lab, not one of these showed any sign of cancer. As Tracey said, it’s a shame I had to have such extensive surgery just to be on the safe side, but with these sorts of remarkable results, my prognosis is excellent.

Mr and Mrs Pinchy expressed profuse thanks. And exited stage left. And held each other very tight and cried in the corridor. Relief at the confirmation that we have scaled a big old peak and now we just have a long but fairly unchallenging stumble down the other side.

And then, grinning, to see my consultant, Dr Houston. Actually, we saw one of his new registrars, which I was a bit disappointed about. Partly because I like him, and his enthusiasm (and he thinks I am pleasant!) and partly because I couldn’t tell him DS’s first joke, aged two and a half: ‘Knock knock. Who’s there? Dr. Dr Who? Dr HOUSTON!’ Little ears…

The hot news from oncology is that Dr Houston is thrilled. And all the results of my chemo, surgery and various blood tests indicate that it would be a really good idea to get started on the Tamoxifen this week, and there is no medical reason not to. This is the little daily pill that I take for five years to basically prevent this sort of cancer happening again. And next week I have another radioactive heart scan (MUGA) and next Thursday I restart the Herceptin drip (every three weeks until Novemberish). And I’m being referred internally to radiology for my radiotherapy, which will be arranged and planned out in a few weeks, and then started straight after our summer holiday at the end of June.

So, plenty more treatment to come, but everyone at the hospital is smiling now, instead of having a Serious Face or doing that head-held-on-one-side sympathy thing. And I want to say a special thank you to my sis and my friend L who each had one of our children for the afternoon so DH and I could go along to both appointments together and hear the story first hand. I feel a happy ending is on its way…

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Bloody amazing news!

OK, are you sitting down? Appropriate drink close to hand? Good. Then I Have News. While I was playing with the kiddies in my Pops’ stunning garden in the sunshine this afternoon (we’re having an Easter holiday slash recuperation at my parents’ house) I missed a call on my mobile from an unknown number. 121 kept calling me, as it does, insistent that I pick up the message. When I finally got round to it, it was a voice I didn’t recognise, but it quickly became apparent who it was, and what momentous news she had to impart.

In summary: ‘Hi Maja, it’s Tracey. I’m sorry you’re not there, because I have some good news. I thought you’d like to know before Easter that I’ve got all the results back from the surgery and it’s all looking super. No further surgery is required.’

Yup, that’s right. The hard bits really and truly are over. There is no cancer, or pre-cancer, in my body. The margins are clear, and I have escaped a mastectomy. The gamble of going for the reduction (known as a wide local excision) has paid off. AMAZE.

The lovely and terribly clever Miss Irvine also said on the message that she’ll go through all the results in clinic next Wednesday. I wonder if the DCIS had in fact disappeared as a result of the chemo? (Remember that officially this cannot happen, but a couple of other women with the same situation as me have found the invisible, threatening pre-cancer melted at the same time as the active tumour.)

Oh, the relief. I can’t tell you. I wasn’t spending a lot of time consciously thinking about the possibility that the surgery hadn’t been a total success, but it must have been preying on my mind because I immediately felt about a foot taller and one hell of a lot more cheerful. I told my Pops and had a very big cuddle, before calling DH (more tears) and significant others. I decided to wait until my mummy walked in the door after work to tell her face to face (yet more happy tears). The Pol Roger’s on ice, waiting until DH joins us in Salisbury tomorrow night.

Somehow, the interminable physio (which I have been avoiding, because the thrice daily exercises to get my arm moving again after the lymph clearance to avoid lymphoedema are tedious and It Hurts) seemed a lot easier this evening.

I was already encouraged today, not only by the gorgeous weather, but by the doc at the walk-in clinic where I went to get my manky dressing changed again this lunchtime saying it was the best breast surgery she’d ever seen, with incredibly thin scars that were healing beautifully. Apart from the bit at the t-junction of the anchor-shaped scar, which I was warned would heal slowly. I’ve had this final dressing changed already once this week and will probably need another couple of changes as there’s some alarmingly bright yellow leakage which is apparently ‘quite normal’.

Otherwise, the steristrips are off, and my nipple is happy enough in its new home to actually have some sensation, unlike the right side of my minibreast, which is still numb. Hilariously, I can see a couple of tiny dissolvable stitches around my nipple, like a little Frankenboob. This makes me feel very aware that I have been sewn back together. I try not to think about this too much.

Anyway, who cares. I may have five weeks of radiotherapy, five years of tamoxifen and three-weekly cycles of herceptin until November to still contend with. But that’s gonna be a walk in the park compared to chemo and surgery. The bottom line is that the invasive stuff is over, and has been successful, and all the rest is mopping up and making sure this doesn’t happen again.

So please grab that San Miguel/Earl Grey/Sauv Blanc/Merlot/Tropicana next to you and raise it in the general direction of Wiltshire, with the Polish toast: na zdowie. To your health. WHOOPITY WHOOP!

What breast surgery is really like

Morphine is a wonderful thing. For the first day or so after my partial mastectomy and lymph node clearance last Thursday (a week ago?? Where did that go?), I was pain-free and pretty happy, apparently sending exclamation mark-filled texts from my hospital bed, although I have no recollection of this.

The worst bit of the day, after DH dropped me off at 7am and we had a tearful cuddle, was definitely being squashed in the mammogram machine and having long flexible wires stuck through my boob under local anaesthetic to map out the area of pre-cancer that needed the chop. That took an hour or so, and was uncomfortable and pretty weird. Edward Scissorbreasts.

Then at 10am I was in a hospital gown with flight socks on and a name label round my specs like a complete mentaller, lying on a bed beng wheeled through the surgical area of the Royal Surrey and confirming for the sixth or seventh time that I had no piercings and was allergic to several things but nothing medical. Then into a small room filled with reassuring anaesthetists, who struggled to get the canula into my hand as I was suddenly shaking so much. I’d been practising counting backwards but in the end my last words were ‘I’m sorry, I’m a bit nervous’. Then oblivion.

I came round in the recovery room with an oxygen mask on. Then I went back to sleep, on and off. The morphine was kept topped up. My naturally low blood pressure wasn’t doing me any favours so the oxygen stayed on for a bit. I remember the clock opposite saying 3.30pm. Then 5.30pm. Then there was a bed available and I was wheeled up to the ward. Not near a window, Tracey the surgeon doesn’t like her ladies near draughts.

Then I saw DH, bizarrely wearing a joke golf visor with fake hair coming out of the top, covering his baldy bonce, which was a bit of a headf%ck inthe circs. He’d been waiting for me for two hours. Dunno what we both said, I was out of it. I was starving, having not eaten anything for more than 24 hours, so DH went off to get me a kebab – lovely lean meat, packed with raw veg, and much healthier than what was on offer in the hospital. Throughout my stay, it was like the hospital kitchen staff were playing a game of serving up the exact opposite of what would a) be appealing and b) packed with nutrition to help you get better. As my brother in law noted, hospitals at mealtimes smell like cheap cottage pie.

There was a bedpan involved as I wasn’t allowed up. I got ‘shy willy’ – as an adult, in bed, lying on your back and sober, every synapse is screaming ‘THIS IS NOT AN APPROPRIATE PLACE TO RELEASE YOUR BLADDER’. There was no dignity left at that point.

For three days, I had lovely visitors who smuggled in nice food. My babies came in twice to brighten my day and I wished I could give them less rubbish cuddles. They are learning to hug my ‘strong’ side and be gentle with my right side. I watched the heatwave through the window. My blood pressure was taken regularly and lots of different nurses said ‘ooh, it’s on the low side’. I swallowed all the Good Drugs dished out in tiny paper pots. I progressed to a commode, sat in a chair to be washed and then the room slid sideways, my vision went monochrome and sound disappeared. I remember saying, thickly, I’m having a bit of a funny turn. Back to bed.

Then the weirdness of night time in a hospital, when my co-patients, all of whom seemed perfectly normal in daylight, turned into wailing zombies: ‘ooh, ah, oh dear, nurse, NURSE, commode, please nurse, ooh, argh, oh no’ and so on. After night one, I wore earplugs. That is my toppest tip. The nurses (all wonderful) were obsessed by bowel movements. I had a secret stash of organic apricots, so was fine, but a couple of women were literally being held hostage until they had ‘passed’.

I had, have, to sleep on my back. Movement of my arm was, and still is, very limited. It’s extremely uncomfortable. The pain is just about kept under control by three drugs, but every so often I overreach slightly and then the pain is eye watering. There is very little sensation under the top of my arm, in my armpit, and the top of the breast, so it’s like having a local anaesthetic. Disconcerting. Some of this might come back. Some, particularly under the arm, definitely won’t as the skin nerves had to be cut to remove all my lymph nodes. I will have to get used to this. I can’t drive for a couple of weeks.

On Sunday the first drain, from my breast, was removed, with a bit of an ouch and a deep breath, as it had stopped draining excess fluid into the bottles I had to carry around in a pretty embroidered bag. The fluid has some blood in it, so the tubes running from under my bandages looked very red, which was a bit alarming. The second drain, from my underarm, was removed on Monday just before I was allowed to come home. This had drained a lot more. The sensation of the long thin tube slithering through flesh was unexpectedly revolting.

From the first tentative glances down at my new miniboob under its bandages, it looked like Tracey had done a pretty good job. As she said when she checked on me that first evening, ‘You have the breast of a 19 year old’. Well yes, I probably do. But just the one. And also, it’s a nice small pert boob but with an anchor shaped scar: all the way around the nipple, which had to be removed and re-placed, down, and all around the bottom. At the moment there’s still a big dressing over my poor squashed nipple, which makes it look even odder. My signature mole is still there but it appears to be further down now.

I was sent home with a special bra: no underwires, high cut and wide straps, so it’s just as flattering and wearable (not) as a nursing bra, except with pockets in the sides for prostheses.  I have a triangle-shaped ‘softie’ to pad out the bra on the emptier side. When the wounds heal up, in a few weeks, I’ll be measured for a silicone one which gives a better shape. I’m meant to wear the bra day and night. After the first night at home, I decided to just wear it during the day as I figure the healing power of sleep is just as important as breast support, and I couldn’t sleep wearing it.

Coming home on Monday afternoon was lovely, but strange. Pleased as I was to be away from the hospital and the enforced intimacy with strangers dealing with their own serious health problems, I felt extremely vulnerable. My cheerfulness and optimism dissolved. By Wednesday morning, it was clear that I wasn’t coping with the kiddies, so DH bought in the big guns – his mum and my mum on successive days to entertain, clean, tidy, prepare meals, iron, make me cups of tea and let me cry on their shoulder. Everyone who texted me in hospital got a perky reply. Everyone who texted me yesterday got full and frank disclosure of my fragile emotional state and my physical challenges. I cried so many large blobby tears I was surprised I didn’t flood the place, like Alice in Wonderland.

I wasn’t prepared to feel like this. I underestimated the effects of being under general anaesthetic for three hours. I had no idea how restricted and uncomfortable I would be, and the knock-on effect of this on my ability to sleep and move normally. I had an inkling of how difficult I would find adapting to my new, albeit temporary body shape, though: I always knew the psychological impact of losing half a boob would be far trickier for me than the chemo.

I’m not spending a lot of time looking at myself naked. I expected it to look like I had one large breast and one small one. What it actually looks like is that I’ve got one high up breast and one low down one. If you hoik the left one up, they don’t look that different, although I reckon the right one has around half the mass. I will be very pleased indeed to have the simple cosmetic reduction on the left in a few months. Human beings are meant to be symmetrical, so it really messes with your head seeing something that isn’t. I’ve had two shallow baths at home now – I’m not allowed to soak or get the wound wet for six weeks – and both times I’ve had a mild asthma attack, I think triggered by the shock of seeing my body looking so unfamiliar.

Today, I feel calmer. I’ve done very little. DS has been at nursery, DH is at work, so me and DD have just been hanging out quietly at home, being looked after by my mummy, who has cleaned the house from top to bottom as my new cleaner picked this week, when I physically can’t do much, to throw a sickie. I know there will be up days and down days in the weeks to come. I am going to try and take it easy, in terms of what I do each day and being gentle with myself. This is a huge challenge for someone who hates being slow or still. Another lesson to learn from cancer.

I need laughter, I think. The children help: yesterday I laughed like a drain when I found them playing an entirely unprompted game of hospitals and DD announced she was ‘Celia’ (my research nurse), DS had to be ‘Dr Houston’ (my oncologist) and cousin A was ‘Tracey’. At one point, Dr Houston was sitting on Celia’s face while she kicked Tracey…

The boob job cometh!

Well, here we are. It’s 3.30am and I’m wide awake. Today’s the day.

I got the call yesterday afternoon to tell me to be at the Elective Surgery Unit (a tad oxymoronic!) at 7.15am, and to not eat after midnight or drink after 6am. I’ll have another mammogram to show up the area of pre-cancerous cells, and these will be mapped out with wires stuck in my breast under local anaesthetic. Then at around 10am I’ll be going for a little sleep and when I wake up I’ll have a pert new boob. And there will be no cancer in my body. Now that’s a nice thought.

The day before yesterday, I was in a total pickle. I was finishing off my last bit of client work but finding it difficult to concentrate. I felt very distressed and basically cried all day. So I Took Action, and made sure that yesterday was a pretty much textbook Day Before Surgery.

First stop after the school and nursery run was Erwen, my acupuncture lady, who facilitated my impression of a pin cushion and then unexpectedly did some cupping on the back of my neck and shoulders to relieve tension. This is the thing Gwyneth Paltrow had that year when she showed up on some red carpet with red circles all over her back: glass ‘cups’ are placed on you, the air is sucked out to create a vaccuum, and there’s this weird pulling sensation and then your muscles aren’t quite so tender. And it looks like I have lovebites all over my neck, like some blindly amorous 16 year old has taken a fancy to a worried-looking woman at the sharp end of her 30s.

Next up, hypnotherapy with the wonderful Lindsey Wright, who I did that hugely valuable pre-chemo session with. She’s very good at this stuff. I heard everything she said but was so deeply relaxed I couldn’t really feel my body, and when she ‘woke’ me I couldn’t really remember much, although I know it was chock full of lovely messages about trusting my body’s ability to heal, and the surgery being the start of a new phase in my life.

And thence to Starbucks to meet a fab woman who had the same op with the same surgeon a few weeks ago and is full of praise for Tracey’s handiwork and loves her new boob. She looked completely normal under her t-shirt but wasn’t wearing a prosthesis and you seriously couldn’t tell one was an E cup and the new one was a C cup. Impressive. We sat in the sun and talked and laughed for an hour. I was already feeling really calm and this was the final piece of the jigsaw to prepare me for what’s coming up later in the show.

While I was swanning around getting my head in the right place, my wonderful mummy and Pops took over at home: picking up the children, ironing, doing laundry, feeding the nippers on baked beans and icecream, and sorting out the sleeping arrangements so there’s somewhere for DH’s mum to sleep for the next couple of nights and for them for a couple of nights after that. Just brilliant. They left and my rather fantastic mother-in-law arrived to help DH with the smalls until Saturday.

DD came home with a Silver Award certificate given in assembly for the progress she’s making in reading and writing, ‘especially remembering to leave finger spaces’, which made us terribly proud. She and DS seem ok about the op – they know I’m going to be in hospital for a few nights after a little operation to take out the rest of the bad stuff, and I’ll be a bit sore and won’t be able to drive or lift for a while. And they know they can come and see me, which seems to be the clincher for DD, ‘because then we won’t miss you and you won’t miss us’. Oh, but I will, my darling.

I should be home around Sunday, but it might not be till Tuesday, depending on how quickly the two drains I’ll have in my breast and armpit stop draining fluid. Sounds yuk. And uncomfortable. I have ear plugs – I haven’t been on a ward since DD was born, for one night, and I was definitely not asleep.

The postman delivered some exceptionally nice stuff yesterday, too. Loads of lovely cards, and our old uni friends sent ‘wow’ flowers, which combined with my mother’s day bunches are now filling every vase in the house. My lovely friend B sent a Rigby and Peller voucher to spend on a posh bra when my boobs are the same size and I can start enjoying an unlimited choice of pretty lingerie, which is certainly not the case with mahoosive knockers. How thoughtful is that?! And my school mum friend R sent a card with Blake’s Tiger Tiger poem printed on it, purely because she knew I’d find the ‘fearful symmetry’ line funny, in the circs. She also made me a gorgeous pouch, embroidered with a tiger, to keep my prosthesis in. Again, amazingly kind and thoughtful.

The texts and phone calls full of good luck messages didn’t stop all evening. DH cooked, and I packed my bags. After the last bath I’m allowed for six weeks so the scars don’t get too wet, and then disentangling DS and DD, who had fallen asleep together in DD’s bed with a torch shining in their faces, deliciously, I went to bed feeling very loved, and very zen. My pesky subconscious isn’t quite fooled, though, hence the lack of any meaningful sleep whatsoever. I find the idea of general anaesthetic scary, and this is a pretty big step into the unknown.

Anyway, I’ll see you on the other side, having f%cked caaancer good and proper. Raaarrrrr!

You know who your friends are

Bloody hell, that went quick. I’ve only just recovered from the physical bashing of  the chemo and suddenly I’m having my boob job on Thursday this week.

Everyone, including my acupuncture lady, keeps telling me to conserve my energy as it comes back to help me get through the surgery and recovery. Being me, I am playing fast and loose with my renewed zest, and fear I have almost spent all my credit on a very sociable week.

Normally, I’m awake past midnight about once a month, max. In the past seven days, I’ve been up late three times already, with another sensational night of wine and rare steak planned tonight to celebrate DH’s 38th birthday yesterday (it clashed with Mother’s Day – not entirely fair for either of us! DS and DD delivered scented daffs and made several cards, including one in which DD had written in her fledgling hand, ‘Happy Movvas Day’).

Mothering Sunday mantelpiece

Last Monday, we saw Elbow at the O2. It was an amazing gig (or ‘pop concert’ if you’re my age) and so good to be out having fun with DH, just by ourselves, enjoying a plastic pint and waving our arms in the air while bellowing ‘one day like this a year will see me right’ for the inevitable encore, with 20,000 other slightly jaded people in their mid-30s. Then on Wednesday I was out for cocktails, Thai and gossip with one of my favourite and best people, and on Thursday me and DH headed up town (after an eventful and extended journey thanks to some poor desperate soul being scraped off the tracks at Wimbledon) for an evening out with the gorgeously fun Chez Gathornes, our gang of uni muckers, named after our third year student house at Bristol Poly (which was the fractionally more impressive University of the West of England by the time I left in 1994).

All of which has given me pause to consider how a Big Event (in this case cancer, but this could equally apply to any other health crisis as well as other life-changing moments) really does highlight who your friends are. Most of my nearest and dearest have been rocklike, steadfast in their support, in constant touch, doing everything I need them to do, making me laugh, showering me with cards, flowers and thoughtful gestures, and generally Being There, for which I am incredibly grateful, and very, very humbled. A number of people who I hadn’t seen much of or heard from for a while, and some very new friends, have surprised and touched me by seriously stepping up. And a few people who I assumed would obviously be there for me sort of…haven’t.

I know cancer’s not everyone’s cup of tea. It’s a scary word, and some people simply can’t deal with me having it. Others have too much crap going on in their own lives to deal with mine. In some cases, I’m completely OK with this, and I get it. In other cases, I remain confused and hurt by notable absences from Team Pinchy’s line up of superstar cheerleaders. I read in a book by someone who went through breast cancer that some of her friends also simply checked out of the friendship at diagnosis for various reasons and she had to accept this and just let them back in when she was well again. At the moment, my feeling is that these friendships may well be irrepairably damaged. I may be ‘away with the cancer fairies’, as DH puts it, but I am so sad about this that I don’t know if I will be able to truly forgive and forget, not for a long time anyway.

At the same time, I’m aware that I haven’t always been a great friend. I really struggled when we took two years to conceive DD and dear friends were getting pregnant and having babies all around us. I’ve also had to distance myself from one situation because after doing my best to help, I am now finding it too distressing to watch people I love apparently push the self-destruct button. But I hope that if any of my friends or family ever have to go through what we’re dealing with – and I touch wood and pray this doesn’t happen – I would be as supportive, loving, generous and generally fabulous as the vast majority of them have been to me. I feel extraordinarily blessed, and very appreciative.

And, it has to be said, scared out of my wits about Big Thursday and the aftermath. The anxiety dreams have started already…