Don’t mention Terry Nutkins

OK, I’m going to tempt fate MASSIVELY here, but I think there’s a good chance I could avoid having to wear a syrup. I am tentatively overjoyed, if such a tautological thing is possible.

Bit of a contrast to a couple of weeks back, before the second chemo, when I woke up on Saturday morning and pretty much a handful of hair came out from my head. At first, it was from underneath at the back, where the cold cap probably didn’t reach, but there was quite a lot of it. Then it started coming out from the top, in multiple strands. And that bit of my head had definitely been sub-zero. Uh oh, I thought, this doesn’t look good.

It doesn’t matter how much everyone knows and expects that chemotherapy usually equals hair loss, when it starts falling out, it’s extraordinarily distressing, and a real shock. Especially as I’d gone through the discomfort of the cold cap and had been doing everything right – my mummy bought me silk pillow cases as recommended for less friction, and I’d barely brushed or washed it. I was quite discombobulated all day, and really tearful. (Apart from when I texted my friend S and she sent back a picture of her four year old daughter with an Elvis wig on.) 

Over the next few days, there was more hair loss. It’s worse after the weekly hair wash I’m allowed, when I have to manage the disposal of the equivalent of a hamster. I went on the brilliant Breast Cancer Care forums and has a look at some posts on hair loss and the cold cap. The consensus seemed to be that the cap can work really well, but thinning is to be expected, particularly on the crown. Fabulous, I thought, at best I’m going to look like a monk. Or the Bowyers man. Or Terry Nutkins.

Me, yesterday

DH, sweetly, bought me a cashmere-mix beany. I left a message with the Wig Lady, who I had been avoiding for weeks. (I am clearly in denial: usually people sort the wig out pre-chemo. Some apparently even get hooked on buying loads of different ones cheap from China on eBay. I admire this, but cannot yet empathise with that particular shopping addiction).

And I started coming to terms with yet another layer of ego being stripped away. I’ve always been known for, and proud of, my long red hair. Now it’s short red hair (although oddly, the stuff underneath where the cold cap didn’t reach first time is coming away black – it’s been fried by them chemicals!). Soon it could be former hair. So my sense of identity is getting a bit of a bashing.

The hardest thing of all was knowing that if I did lose my hair, that would be the end of pretending that days between treatments were normal, to myself, DH, the kiddies, or anyone else. I would feel like, and look like, a cancer patient. And that, as you know perfectly well by now, is not The Pinchy Way.

I went ahead with the cold cap during Chemo Deux anyway, using a slightly larger cap despite my pinhead, so it reached further over the back. I was feeling pretty low on the day, after waking at 3am and not being able to get back to sleep, and the reality of the treatment not being a one-off kicking in. So having a -5.5 degree head when my hair had already starting falling out was whatever the opposite of the icing of the cake is. (I can only think of ‘nail in the coffin’, but that’s maybe humour of a slightly too dark shade).

But I think, I hope, that things appear to have plateau’d. Not stopped entirely, but sort of stabilised. I am moulting, like an old dog. I find hairs everywhere, including in most of my cooking, on my shoulders, the kids, and on the side of the bath (urgh!). DH has asked me to make special mention of the plughole. And hair wash day is still like a satanic rodent drowning ritual in the bathroom.

It’s just about hanging on in there, in other words. And yes, it’s a bit thin right on top, so I can only hang round with people less than 5′ 8″ tall now, obviously. But it’s not coming out in clumps, and I am still this side of looking like Britney when she went mental. And I still haven’t spoken to the wig lady…


Thirty three point three

Well, we’re officially a third of the way into the chemo now [she said firmly, with dogged resolve].  I didn’t count the second actual treatment day, last Friday, because although it’s not the funnest day ever, it’s perfectly doable. No, today I am a third of the way through, because today is Day 7 of the second cycle of six, and I am feeling almost back to Normal. And you know by now how much I wag my tail adoringly at Normal.

Today I have been to Sainsbury’s, done some client work, sorted some stuff out, made some calls. Y’know, normal stuff. I’ve dropped the kids off at nursery and school dressed in clothing that is identifiable as female and clean, with lenses in and makeup on, rather than grubby leggings and greasy specs. Heels, even! (Inappropriate given the weather, but hey.)

I’ve also had the last of the five days of Magic Injections by a team of rather lovely district nurses to keep my white cell count up so I don’t have another minibreak courtesy of the NHS this time. This means I’ve probably got a better immune system than all of you sniffy, snotty lot, although my Day 8 blood test tomorrow will have the evidence.

My mouth isn’t quite as sore as last time, which makes the whole thing more bearable. I think sucking ice chips during the chemo helped. Or maybe it was visualising a gentle but firm shield of white soldiers preventing ‘friendly fire’ from the chemo. Or something. Everything else has been worse this time. The nausea (including actual sickness) was horrid and I’ve now tried four different anti-emetics. The one that works best doesn’t completely stop me feeling sick, and gives me quite alarming palpitations. I spent two days feeling utterly ghastly, weak as a kitten, like flu without the head cold bit. Luckily the Super Grandparents kicked into action, one set whipping the kiddies off for fun and larks in Salisbury for the weekend and the other set bringing them safely home on Monday afternoon.

I took DD out of school on Monday because I just couldn’t cope with the babies being around – however much DH and the grandparents do, and however perfectly they do it, if DD and DS know I am around, they just want me. Her teachers are being brilliantly supportive and it was no problem.

So she came back on Tuesday and went straight into the first of three performances of her first ever school Christmas play, in which she was one of the pair of famous Nativity Piglets in the Jewish town of Bethlehem. When the Reception, Year 1 and Year 2 kiddies filed up on stage yesterday morning for the last performance (me and DH in the front row, natch) and started singing Silent Night, I welled up and seriously thought I might just blub loudly throughout. I’m getting more sentimental these days. She was a brilliant piglet, of course, and I was so proud.

The Nativity Piglets

So the school play marked the start, really, of what I sincerely hope will be a calm, healthy, joyful Christmas. I’ve done almost all of the pressie shopping online, just a few more bits to get. Most of the cards are posted. We’ve got loads of social stuff coming up over the next week with family and friends, and I am looking forward to every second of it.

As of today, I am embracing the run up to Christmas with all my heart and soul, clinging onto every whiff of paperwhite daffodil, Crabtree and Evelyn  ‘Noel’ candle, and clementine (not difficult – I also have Dog Nose after chemo). Because we are A Third Of The Way, and after my next session on New Year’s Eve (yeah, I know!), we will be Half Way through the Hundred Acre Wood. And that, said Pooh, is quite a long way towards the jar of Honey on the other side.

I’ve been shortlisted!

I can’t quite believe this, but some kind soul has nominated me for an award. I’m a (pretty quiet) member of a brilliant and influential band of blogging women, British Mummy Bloggers, and I’ve been shortlisted in the Inspirational category of their Brilliance in Blogging awards.

I’m quite stunned by this, and extremely honoured, because I’m up there with some seriously talented writers who are charting the frequently muddy waters of parenting with humour and pathos.

If you’d like to give my little journal the thumbs up, you can do so online by going to the shortlist page and voting for Pinchypants. You’ll also need to vote in the other categories, but rest assured you’re in for a great read, and everyone else on there really deserved to win.

I started this blog just over a year ago, with the intention of writing about various aspects of being a working mummy. When I was diagnosed with breast cancer in October this year, however, it morphed overnight into a cathartic outlet for recording my Really Big Adventure. Writing it has rescued me from a few dark moments and enabled me to see the silver linings, the black humour, the lessons and even the blessings in my situation, armed with Team Pinchy’s mantra, F&CK CAAANCER!

So thanks for reading, and please vote! (I’m sorry for touting, but I hope you’ll agree it’s not quite on the scale of Russia buying the World Cup, frinstance).

Amazing news!

I am SO excited I can barely contain myself. I’ve got a glass of shiraz next to me to keep me steady (though it’s a tiny bit cold). Here goes.

I saw the lovely Dr Stephen Houston, my consultant, this afternoon. He asked me how I’d got on since the first chemo on 18 November. Then he examined me (I am getting used to men and women I barely know having a good feel of the ol’ knockers now).  And…the lump in my lymph node in my armpit has DISAPPEARED! And the big one in my breast is ALMOST GONE!!!! After ONE chemotherapy session! Oh. My. God. How amazing is that? That’s some powerful shit. No wonder I felt a bit rubbish!

I’ll just pause for a second so you can take that in. The combination of drugs I am on to treat my breast cancer is so effective that after one of six planned sessions, my tumours are, as Houston-We-Don’t-Have-A-Problem put it, ‘melting away’.

This is what I am doing RIGHT NOW!

He’s usually cool as a cucumber, but he actually said. ‘Wow. That’s amazing. I’ve never seen anyone respond so much so quickly.’ Yay for me, A* patient or what? I half jokingly said, that’s all the visualisation I’ve been doing, and he said ‘no it isn’t, there’s been studies done on the effects of visualisation on your immune system and it makes no difference’. So I said: ‘No, it’s not that: I’ve been visualising the chemo and the other drugs being strong, powerful, beneficial things that my body will allow to work, rather than seeing them as scary and toxic’. And even the arch-scientist agreed that that is important.

He also said that he was really pleased when he saw I’d randomly drawn the particular combo of drugs I’m on for the trial, because the guy who invented Herceptin prefers to pair it with carboplatin chemo as they seem to work more synergistically together than other chemo drugs. This was good to hear, and a bit weird, because for some reason I was overjoyed when my Wonder Nurse Celia told me which arm of the trial I would be having. I had just felt drawn to it, no idea why, but it seems things really are happening perfectly for me.

I asked what the implications were for the plan for my surgery to include removing my lymph nodes under my arm, and he said they’d have to monitor it as we go along, but it’s possible not as much will have to be removed as originally assumed. Hurray! This is potentially great news too, as it might mean a quicker recovery period. (I’d started to fret this week about the surgery as my gorgeous friend N’s mummy has just had her underarm lymphs out and can’t drive for six weeks, and I just cannot see how things will work with the kids at school and nursery and Andy at work in another town. But still. Let’s take each thing as it comes).

Tigger then bounced out, very happy with the results, and all of a sudden I felt really emotional and had to have a Special Celia Hug in the consulting room. Once I stopped welling up, I felt elated, and haven’t stopped smiling since. I came home to tell DH the news and he was in tears. It’s the first bit of really positive news we’ve had for a few weeks now, and it has given me new energy and impetus for the next round of treatment this Friday. It’s working! I will be free of cancer!

There’s still the tricky matter of the pre-cancerous stuff, which doesn’t take any notice of chemo and will still need to be kicked into touch with a scalpel, but hey. The Big C, as so many of my fantastic friends and family have said from the start, has messed with the wrong chick this time. (I’ve never referred to myself as a chick before, that’s odd). And the awesomeness of this development won’t stop the nasty side effects (which are starting to include the dreaded hair loss, of which more next time, gentle reader).

But let’s say it again: the cancer is melting away, just as I have been seeing it so clearly in my mind. The drugs DO work! I am toasting my consultant, my nurse, the rest of my medical team, the whole St Luke’s cancer centre in Guildford, and everyone else on Team Pinchy. Cancer, my friends, is being well and truly f%cked. Shiraz me up.

Telling your children you have cancer

It’s one of the conversations you never want to have with your children. Imparting the news that a parent isn’t 100% well is hard. (Even harder than the chat I had yesterday with one of DD’s friends who asked me, while I was changing DS’s nappy, ‘why do boys have willies and what are they made of?’)

Every year in the UK, around a third of those diagnosed with breast cancer have school age children living at home. When I was diagnosed on October 13 (who on earth books a mammogram for the 13th of the month? It was never going to be good news!) one of the first things the lovely breast care nurses talked to us about was breaking the news to the children. The two key things they emphasised was that however we did it, we had to be honest, while talking at their level.

Children know stuff is going on even when they don’t understand exactly what it is, and the worst thing is pretending everything is OK if it isn’t, because their little imaginations kick in and conjur up all sorts of horrors that are probably worse than the truth. Since they are very firmly at the centre of the universe as far as they are concerned, it’s also important that they know they haven’t done anything wrong. No darling, mummy hasn’t got a lump because you won’t get yourself dressed in the morning/refuse to eat peas/broke that glass.

The wonderful people at Breast Cancer Care have recognised how important it is to be open with your children about the condition. There is an excellent section on their website about talking to children, plus a pdf. They have also produced a story book to read to under-sixes to explain what’s going on. It’s called Mummy’s Lump, and when DH and I were given a hard copy, we both cried. It just seemed like the hardest thing to handle. And I really didn’t want to use the c-word, or to say chemotherapy, or radiotherapy, as I just felt they were irrelevant labels. I also didn’t want to go into the whole wig thing in case I did manage to hold onto my hair, or talk about operations, especially since I’m having my op at the end of the treatment rather than before, as in the book. Perhaps we’ll read it together at some point as we go through the process, if it seems more pertinent, but at the moment it’s in my big pink Cancer File.

DS is only two and doesn’t really mind where I am or understand what’s going on, as long as I show up for a cuddle eventually and he’s got his sister nearby. DD, however, is a bright, sensitive four year old who very definitely did get that something was wrong, and we were both anxious about telling her in the right way at the right time. After I was diagnosed, there were a lot more grandparents, rellies and friends around than usual, and not just at the weekends. And there were tearful faces, long grown-up conversations and lots of phonecalls, and mummy kept disappearing (for the endless scans). Her behaviour did start to change – she was ‘playing up’, more stubborn and tearful than usual, and more clingy. So one breakfast time a couple of weeks after I was diagnosed, when she was getting upset that I wouldn’t be picking her up from school, I sat her on my lap and told her.

I was very matter-of-fact. I said something like: ‘Mummy’s got a lump in her booby. It doesn’t hurt, but it shouldn’t be there, and the doctors need to make it go away. I’ve been having lots of checks at the hospital, and every few weeks I’m going to have a whole day at the hospital to have some special strong medicine. It might make me feel very tired. I’m absolutely fine, and if I’m not here to drop you off or pick you up, daddy will be, and if he’s with me, then one or your grandmas will be looking after you, and we will always tell you who will be dropping you off and picking you up. I’m fine, and I love you, and you haven’t done anything wrong.’ She perked up considerably, straight away, and has been fine since, mostly.

I keep being very straightforward about the logistics where they affect her, so she knows what’s going on. We’re not saying anything about me being ‘not very well’ (until last week when I was unexpectedly in hospital because I was actually ill). She seems to be taking it in her stride, and hasn’t asked any questions. She does seem more clingy than usual, and needing to know where I am a lot, and has got even closer to her daddy, especially after he was the primary childcarer all last week. DS, who lives very much in the moment, didn’t seem to notice I was gone for three days, which is good but also…a bit disconcerting!

I’m just glad they are both so young and I can get away with minimum information and maximum reassurance. If they were even a couple of years older, let alone in their teens, I can imagine it would be a lot harder. As things stand, it appears that we’re all happy with the explanation and are Just Buggering On as ever.

An unscheduled minibreak

Last weekend I was so looking forward to being back on my feet and having a normal week, and then I went and caught a cold. In the normal scheme of things, this mostly doesn’t happen – I just don’t really get coughs and colds and stuff – and if it does, I take massive doses of Vitamin C and zinc for a couple of days and I’m fine again. Unfortunately, pretending things are ‘normal’ between chemo treatments comes a cropper when one’s immune system is non-existent, and the ‘cold’ was actually an infection somewhere, and my temperature shot up on Monday night.

I have this little card in my wallet that says if I have just one temperature reading of 38 degrees (which to be honest I wouldn’t normally even register, much less fret about) I have to go straight to A&E and show them the card with all the details of my treatment regime and be kept away from ill people and have various tests and antibiotics. So reluctantly, grumbling, I took myself up to the hospital on Monday after putting the kiddies to bed. And didn’t see them again until Thursday afternoon.

My white blood cell count was apparently lower when I went into hospital than it had been on Day 8 after the chemo, when it’s meant to be at its lowest. This meant I was neutropenic – I basically had no immune system, already had an infection brewing somewhere, and had no means of fighting it off. So rather than sending me home with a pack of penicillin, I was admitted and put on an antibiotic drip. I was very, very grateful to my lovely friend E for coming up to the hospital after DH called her, and staying with me till 1am, when they finally decided to get the intravenous stuff going. I got to a ward at 4am, and was put in a side room to keep me in isolation as I was at risk from every tiny bug.

On Tuesday I was pumped full of more drugs, and everyone in oncology trooped down to have a look and a poke. I rested. My sis brought Heat magazine. I was also given another injection of a drug (lenograstim) to get my bone marrow to produce more white blood cells as a matter of urgency. Ditto Wednesday. My mummy came over. I rested. It snowed. Then on Wednesday afternoon my gorgeous research nurse Celia popped over to tell me the very good news that my army of white cells had made a heroic recovery and I could go onto oral anti-b’s and home on Thursday. Hurrah!

Unfortunately, there was something of a communications breakdown between the ward and oncology on Wednesday night which meant the ward team insisted on carrying on with an unnecessary penicillin drip at 2am (FFS!). I had to get a bit stroppy to ensure I could go home on Thursday. I was missing the kiddies terribly and was bored shitless. (My dear friend S , who is rather fond of her sofa, has promised to show me ‘the way of doing nothing’ as I am crap at it and she is a guru). I eventually had to threaten to discharge myself at 1pm after being ignored for most of the morning, upon which a discharge letter and medication magically appeared.

DH did a brilliant job of looking after the kiddies and holding the fort at home with a bit of help from the wonderful grandparents. Since school was closed for three days, he’d also managed to buy a sledge and salopettes for the kids and take them sledging, which quite frankly I wouldn’t have bothered doing. He was knackered, though, and practically the moment I stepped in the door he went off for a lengthy nap. Still, at least now he knows he can do it – get the kids up, dressed, breakfasted, entertained, ferried around, fed and watered, bathed, bedded, all day, without me interfering. Which is as good for me, the control freak, to know as him, to be honest.

So, not a normal week after all. But lessons learned about being blase about the fragility of my immune system, and drugs adjusted for next time so that won’t happen again. There’s a Chinese curse, isn’t there, ‘may you live in interesting times,’ which seemed apt this week. I have never been so grateful for the many small miracles in a normal day, from normal health and normal routine to normal client work, normal weather, and even normal tastebuds (they are back! Wine tastes good again! Although randomly everything has an aftertaste of lemon juice.) And THIS week, starting tomorrow, will be normal.