I want to continue this blog. This will be about Alys and her bravery, fears and our love for her but geared towards Teddy’s development and how we all deal with grief. I think contributions would be a very nice idea for starters.
So I finally understand what chemo feels like, and realise how “lucky” I’ve been until now. This is my fourth day in bed with one night in A&E under my belt. I’m hoping I’m turning a corner now, as for the first time this week I understood why some people decide to give up treatment as a trade for quality of life. I’m not about to do that even if the best mum I can be to Ted is just to watch him. I won’t give that up until I have to. Carboplatin is the new drug regime, delivered 3 weekly and it has a selfish disregard for normal daytime activities like being awake, eating, sitting, talking. The disease is in my liver, lungs and chest now so it’s also hard to work out whether my poorliness is due to the side effects of chemo or the illness, and tossed in is a big dose of panic which interferes with rational thought. A note on A&E – avoid it at all costs. The staff work so hard but it’s under resourced, filthy and disorganised. As a patient receiving chemo I am not supposed to spend any time in the general waiting room as immunosuppression exposes me to illness from others, the protocol is to hook me up to IV antibiotics within an hour. I opted for the dirty floor of the lobby between the waiting room and outside for the four hour wait. Feelings of anger and my need to self advocate quickly dissipated when I saw some of the other patients in Majors who were really poorly indeed. I still thank god for our NHS every day.
We’re getting married. Thanks to everyone helping. Turns out there is rather a lot to do but things are slotting into place with six weeks to go. Five weeks to go, oops. I’ve taken a scatter gun approach to the organisation and order millions of things online on the basis that I’ll send back whatever is unsuitable. I now have seven veils. I also found a shoe bag containing a pair of too small wedding shoes and several soiled nappies. How does this shit happen to me?
Michael completely knocked my socks off by running the London Marathon having followed the least conventional training plan ever (I.e no training). It was a fantastic day which made me very proud, and he raised over £5k for the Marsden. I feel dogged at the moment by wondering if things are “lasts”…. will I ever go on an underground train again? Will I ever again be charged £8 for a bottle of Peroni and £12 for a glass of house red in an overpriced London hotel? Hope not.
Ted becomes more fascinating, independent and hilarious daily. He’s becoming a busy little boy and his schedule is frequently too full for naps.
“Fancy a nap about mid morning Ted?”
“Doubt it mum, I’ve got a half ten with the poison cupboard. Then a game of sweeping which will take me til lunch”
“Oh good you’ll be using your newly purchased safe little persons broom which we bought you to stop your obsession with the rust-flaking grown up version?”
“No mum. Then I’ve got a working lunch with Hetty the Hoover, I’ve got to spend at least 30 mins crying while she isn’t turned on and then 40 crying when she is. Then dredging the dogs water bowl 4 times this arvo. So no nap time”
In my naivety I used to think this meant that he’d sleep like an angel all night through but this bears no relation to reality. Also my baby doesn’t sleep like an angel. Once he finally loses the battle with sleep a cacophony of grunts, yelps and snorts starts. He may look celestial but he sounds like he’s doing an impression of Peter Rabbit with a plastic bag over his head.
We will keep on keeping on. Things are just as tough for those that love me as they are for me. The plan is to start enjoying something nice every single day as soon as I feel better. Thanks everyone who keeps hanging in there with me.
End of treatment party cancelled. In fact, end of treatment cancelled.
2006 European Cup Final. The stage was set in Paris for the biggest game of our lives. Watching football has been a family social event all of my life and as we crammed into the tiny living room of one of our temporary homes before my parents moved north, nerves ran high. Arsenal’s first shot at the big boys trophy (London’s first shot at it for gawds sake!) I was not nervous . Somehow I knew even before Lehmann was sent off after 18 minutes. It was never going to happen. I knew even when Sol Campbell put us in front that this wasn’t our night. (Note: Sol Campbell there was no chance you could ever have been Mayor of London you dick. Half of north London wouldn’t have voted for you EVEN IF THEY SHARED YOUR STUPID POLITICS. Doh). So it was no surprise when Barca scored twice in the last 14 minutes, game over, hopes and dreams shattered for another year etcetera. Outraged, furious, morose Courtneys. Except me, who had known all along there had never been any hope to begin with.
Now this isn’t an exact analogy for my cancer because since diagnosis I have felt moments of strength, optimism and hope. But equally the news that it has spread and is now incurable was no shock because I had felt in my bones (or in my liver, more accurately) that this was always going to happen. This cancer was always one step ahead, it was always Barcelona. To be honest I expected to get to the end of active treatment first, but ringing the bell was not meant to be for me.
Life really is a bitch sometimes. Last night I dreamt my hair looked normal, my scars had faded and I was in recovery. In these particularly dark recent days sleep is the only respite from the overwhelming sadness and sheer relentless, exhausting terror that every day brings. It’s tough when sleep tells you lies so that waking up is even more traumatic than usual. I have to hope my current low mood is temporary and when the shock of secondary diagnosis has eased I will feel stronger. I think of women that following diagnosis write books, record memories, buy birthday gifts for every year of their baby’s childhood. I cannot even get out of bed. I’m told Super Ted will drag me out of this despair, but it’s far more complicated. I cannot connect with him… what’s the point? I don’t want him to miss me when I’m gone so it’s best to step back, yet agonising watching other people form closer bonds with my child than mine. I have functioned for years with anxiety and depression but now I am truly broken. I am useless. These feelings seem to be authenticated by the speed that the medical wheels are turning… the pace and urgency of treatment following my primary diagnosis has gone. I will finally see the oncologist to discuss a treatment plan 4 weeks after the news of metastasis.
And yet. There are moments where my heart is light. Messages of love and goodwill have poured in. Knowing my family is being thought of helps me. Receiving well wishes from people I studied and worked with over 20 years ago cheers me. The parent of a childhood friend writing to me moves me so much. Cancer shines a stark spotlight on friendships- some which have lain dormant as life got in the way have been reignited with commitment and generosity. New friends offer their time and support far beyond my expectations. Other friendships haven’t lived up to the scrutiny- some people quite literally have better things to do. “Know your tribe” is a phrase used often amongst people with life changing illness and it’s true that it’s vital to know who you can rely on. My tribe know who they are and Christ knows I am luckier than most. I’ve been thinking a lot about the women in my life and the strength they bring to me. My mum: without her we’d have gone under long ago. Her selflessness and sacrifice deserve so much more than my gratitude. I’ll find a way of fulfilling her dream of a pistachio Cinquecento if it kills me. Ah.
And I’ve been lucky enough always to have a best friend (and many others in between)- in particular two women that stood beside me during stages of my formative years and who still do now, and the infamous Spudley, who has stumbled along by my side for the last ten years, often tripping up and spraining something. We will never stop laughing together even when things can’t get much darker. During radiotherapy I started off thinking of Teddy as I lay on the slab being zapped. After my diagnosis this became too painful so I thought of our adventures over the years. A recent social media faux pas on my part which caused her a minor incontinent episode. The time the train doors closed behind her before I had a chance to get on and we watched as she moved helplessly off. Her laughing so hard when I stepped in human excrement at a festival only to realise I WAS WEARING HER SHOES. Getting confused on the underground after one or two chardonnays and going backwards and forwards between stops. Her having to dress up in a Finding Nemo towel on a visit to a Greek Orthodox Church. Our top three rows: calling me an f***ing a*****le on a late night out and promptly dropping her phone down a drain. Demanding back the suitcase she’d lent me at Inverness airport while it was still full of my clothes. Berating me for getting us lost in Athens due to my poor map reading skills regardless that the words were in not just another language but another bloody alphabet. Sometimes we tell each other home truths which are difficult to hear but this is necessary because non-judgmental truth without strings is hard to find in this world. Her support has been constant. She has made me believe she would do anything for me. I love her.
Finally, I am trying to find some positives in the new new normal (ffs). Things I don’t have to worry about:
•salespeople – woe betide them
Bother, that’s it so far.
In other news my haircut is now Hilda Ogden circa 1984.
Next time people I hope to be feeling a bit chirpier.
The home straight
I’ve started this blog post so many times… it was originally called Merry Christmas, then Happy New Year and could now be called Jesus Christ How Is It February Already I Forgot To Plant My Bloody Daffodil Bulbs Again That’s Another Year Wasted. This is the first time I’ve been motivated to put virtual pen to virtual paper, and I needed to get something off my chest first (joke). It’s been an uneventful start to the year (joke again) after a spectacularly hectic festive period. It was great to have family here from far and wide to celebrate Christmas. My family Christmasses usually involve some mild PG rated violence at the very least but we were all well behaved this year and I think everyone genuinely enjoyed being together.
Afterwards our little tiny family escaped to a log cabin for a few days to soak in a hot tub and walk in the woods and ignore the prospect of my impending surgery. The Willow Foundation are a charity that arrange treats for “young” people with cancer and I am so grateful to them for giving us a little oasis of calm before the next stage of treatment.
January 10th was the day of my surgery. Obviously the car didn’t start, we had to nick my mum’s and arrived an hour late which definitely didn’t make me mutter darkly about bad omens and fill me with even more dread. But it wasn’t too bad in the end. It was the first uninterrupted five hours sleep I’d had in a while (when I’m King of the World new mums will be allowed a go on a general anaesthetic once every three months). When I woke up I had a prawn cocktail for my dinner. I’ve stayed in worse hotels. My besty arranged for our favourite song to be played on hospital radio and I had a moment, miming to it and crying, knowing once again my world had changed forever.
My mum and aunty nurse stayed with us to look after me and Super Ted during my recuperation. I’m ever so lucky and think of people who have to do this without the support of family. My recovery has been good, the worst bit was having to cart two surgical drains around (actually the worst part was having a couple of Proseccos and forgetting I had to cart the drains around. Ouch). One year olds do not respect major surgery. In fact I think Ted saw me as a sitting duck/ adventure playground who couldn’t escape. It’s hard not to pick Ted up because at this stage he is so desperate to walk and just wants to explore everywhere… he makes very funny little hand gestures begging to be picked up which I hate ignoring.
I knew it was time for life to return to ‘normal’ and for mum to leave when standards began to slip… one day the milk in my bran flakes was not perfectly cold, the home made sponge was a little dry. By now Teddy regarded me with complete contempt, not only would he physically shove me out of the way to get to Nanny, but his diet consisted solely of biscuits and cakes. Nanny allows him to do whatever he likes such that his favourite toy is the microwave (a matter of time before he jams something metal in there) and his favourite game is standing on the top step of the stairs as precariously as possible, laughing. It will take years to undo these behaviours. (By the way do not feel sorry for Nanny- she is frequently mean to me. I recently found a note of the list of complaints which she made about me when I took her on holiday to the South of France a few years ago. I shall digress to share them. The accommodation: dingy, unfit for a dog, too hot, too cold, too far. My car: seats uncomfortable, not enough doors, too cramped, too cold, too hard to get out of, windscreen wipers too noisy, (roof on) too dingy, (roof off) too windy. Me: my hair is untidy, my clothes are unironed, my hat is ridiculous, I am a know it all, bi-polar, too much like my father, I eat too fast, I drink too fast, I eat too noisily, I drink too noisily, I eat too much, I drink too much, I lick my knife, I always talk about food, I have an addictive personality, I am an idiot, I haven’t got a clue, I am unreliable, “ma fille est un fool”. Needless to say we had a marvellous time.)
Next up- pathology results. It’s not easy for me to say this- they were shit. My lymph nodes were affected and the chemotherapy had not worked. A large “footprint” of disease remained. The cancer had not behaved in the way we had expected. It was a double hard bastard. Cancer doctors don’t sugar the pill- they can’t. I am in a very high risk for recurrence and if this happens the cancer will not be curable. Psychologically this is difficult to come to terms with. I needed immediate CT and bone scans to see if it had already spread. Between the scan and results we stayed overnight near to the hosptial. It was a very unpleasant time alleviated only by the FREE TEMPURA PRAWNS AND PETITS FOURS available as part of the Croydon Hilton check in experience(I know right?!) The scans were clear, for now. I need to learn how to cope with the relentless anxiety I’m afraid will never go away.
So next it’s the final leg of “the journey”. Three weeks of being zapped. Many people say it’s a walk in the park compared to what’s gone before. The worst bit will be the journey to and from hospital but my nearest and dearest have made a rota for driving so Ted doesn’t have to go to nursery everyday which would be crappy for him and cost a fortune. I’ve promised the designated drivers free lunch at the Marsden which is an excellent incentive. FYI drivers: this offer extends to MAIN DISH only- vegetables/rice/pasta etc are payable yourself at a cost of 80p per item. Puddings are in the region of £1 and are always well executed school dinner fayre – think sponge custard, rice pudding etc. I wouldn’t be surprised if more people volunteer to drive having seen this offer.
Other news: my hair is ridiculous. I finally gave up the fringe and lopped it all off in January. My stepson’s beautiful girlfriend said I looked like an actress. “This sounds hopeful” thought me “she’s thinking gamine, elvish…. Kiera Knightly maybe?” “Sigourney Weaver in Alien” suggested Besty. It wasn’t even a joke.
On the subject of the youngest “stepson” (unofficial), both he and my eldest nephew turned 18 in January making me feel jolly old. Since my diagnosis and throughout my illness Victor has behaved with maturity, compassion and given me much needed moments of humour. Cancer is heavy shit for a 17/18 year old to deal with and he never complains about the disruption it causes. He’s a good boy. He went to Amsterdam with his friends for his 18th and spent an absurd amount of money. When I asked how he told me the Anne Frank Museum was very expensive and he’d been three times. He makes me laugh.
I’m planning to drown myself in a bucket of Prosecco on 15th March to celebrate the end of active treatment. Join me and I’ll share.
Thank you as always to everyone that helps me keep going. I’m thinking with so much love of family and friends who are coping with their own struggles xxx
End of part one…
Teddy’s first birthday snuck up on us last week. I’d always thought celebrating very small birthdays is a bit pointless but this bloody illness makes all occasions poignant. So I duly bought a birthday card and spent ages trying to think of something profound to write in it.
Super Ted. I waited a long time for him to come along but when I became pregnant I freaked out. At 38 I’d just about reconciled to not having children. I have plenty of friends without kids who have happy and fulfilled lives and I assumed this would be me too. I reasoned that although I always thought I wanted to be a mum actually in reality I would find it very hard to give up my freedom. I worked and played with equal zeal and could happily continue, enjoying luxuries parents mostly give up; spontaneous sessions in the pub, “me time”, a meagre disposable income. Then I was pregnant. Physically, it was a breeze. No sickness or any other common complaints. Tiredness, but now I was treating my body better than I ever had before, eating healthily, not smoking or drinking, going to bed at sensible o clock, joining a yoga class. My body was in great nick (for a geriatric primigravida !) but it hadn’t told my brain and psychologically I found pregnancy challenging. I felt isolated (most of my previous social connections involved alcohol) and scared. I was terrified of giving birth and after that minor inconvenience how the hell would I know what to do with a baby? I like children (some of them) particularly my nephews, but thought it would probably be pretty boring on a daily basis. Then all of the unknowns … what if something was wrong with him and I couldn’t love him or look after him?
When he finally arrived I found it pretty hard. It was relentless, exhausting and at first not particularly rewarding. To be honest I had been hoping for a life changing epiphany at birth where I was filled with overwhelming love for the new little human , but it didn’t work exactly like that.
Don’t get me wrong, he was lovely (especially when he was asleep) but until 12 weeks old all he did when he was awake was feed or cry. It wasn’t until just before my diagnosis that things started getting interesting, and then of course my world went wonky. All I could think about was myself. I did worry about Michael and Ted being left alone but my overriding and consuming thought for weeks was OMFG I’M GOING TO DIE. I hadn’t even had a chance to get to know this little chap yet.
Six months on and things have changed somewhat. He is an actual person, a funny little person! He claps and laughs at my dancing ( I strongly believe WITH me not AT me). Sometimes he hits Michael in the face with a plastic hammer to wake him up! His developing personality is not always a source of pride tbh- like when he looks at my painstaking culinary efforts with contempt before cackling hysterically as he feeds it to the dog. His cool disregard for the word “no”. You can almost see him thinking “it’s OK, nanny will be here soon and then I’ll do whatever the hell I like. Losers”.
In the night though, he will reach out his (usually sticky) little paw to find my hand. I really think he does like me, despite the poor show I’ve made of motherhood over the last six months. And me… I really like him. This shit is just getting good! And I really, really want to be around to see more of it.
Big day today. Last chemo session. The new drugs have been tough in their own way but not as bad as I expected. My hair has started growing back with abandon, but the sides and fringe are now so thin it will have to go. I’d be perfect to front a ska band at the moment, and I’m a great dancer, ask Ted.
Me. Not really (not nearly ridiculous enough).
I should be over the worst in time for Christmas. Normally I get told off for my humbugness but this year I have gone into mental overdrive. Yes, I have calculated that each of my 20 (TWENTY) guests will have 48.6 cm of table space. Yes, there will be special Christmas house rules with associated financial penalties. Yes, I have been experimenting with different supermarket side dishes vs home made to find the best value/ease/taste combo. Yes, I am a little bit compulsive but it’s that or cancer and Christmas is marginally more fun. I’m dressing up as Father Christmas for hospital today, I’ve got some little gifts for the staff. God help us if the Oncologist has to deliver any crap news, it will be the height of awkwardness with me in a Santa dress and beard.
This time of year is tricky for lots of people, enjoy it if you can and if you can’t just hold on, it’s only a day. Love to all x
The big 4-0 and see you later Traitor
“Thank god you’re feeling better” Michael muttered, in response to my threat to jump up and down on his reading glasses, all nine pairs of which were missing. These new chemo drugs are a different animal entirely and I realise now how lucky I have been so far. The new medicine is sneaky. It lulls you into a false sense of security for five days before smacking you in the face with a shovel. It’s no coincidence that the onset of side effects kick in when the steroid tablets run out, so for the first few days I’m bouncing off the walls; a manic, slightly hysterical ball of nervous energy, before being struck down with the mother of all come downs accompanied by a headache which prevents me from lifting my head off the pillow. It’s (not) affectionately known as the tax train because it feels like you’ve been run over by one. And then three days later it’s like someone has flipped a switch and it’s back to normal. I’ve escaped so far with only one trip to A&E with suspected infection which can kill you down dead if you’re not hooked up to IV antibiotics pretty fast. Weird, scary shit.
Still, two to go and anybody can manage that, even scaredy-cat me.
Met with my consultant last week (major girl crush) and I have surgery booked for 10th Jan. Until now I have compartmentalised each stage of my treatment but it’s time to open the box marked “Losing the boob I thought was my friend but turns out is a traitorous bastard”. It’s a big deal. The Marsden approach is less risk averse than most trusts so my surgeon will be attempting an immediate reconstruction despite phase 3 of treatment being 20 radiotherapy sessions, which can cause the implant to fail. I saw pictures of patients who have undergone the same procedure and results are impressive- I mean I’m not going to be on page 3 anytime soon but still (can you believe page 3 even actually existed! This century!! Jesus our children will think that is MENTAL) I have faith in my team, otherwise this process would be absolutely terrifying.
So I’ve got 8 weeks to come to terms with losing a part of me- an integral part of my femininity and sexuality. We’ve got into trouble a fair few times, various wardrobe malfunctions etc… and I guess I should have realised what the difference is between a conference call and a webinar, I wasn’t expecting cameras. I’m sure there are a few of the other 20 virtual attendees that are still traumatised. There have been some jolly fun times too but no one needs to know about those not least my parents. I did once regard my boobs as my greatest physical asset, and working next door to a fire station for ten years I would secretly be thrilled when occasionally a fireman (person?) would flash the lights and sound the siren as I strutted past (sorry ardent feminists). I did notice these times got fewer and further between as the years rolled by. The final occasion I coyly fluttered my eyelashes only to realise the fire brigade were responding to an emergency and telling me to GET THE FUCK out of the way. Little bit mortifying.
I’m writing this as I sit on my four poster bed in a beautiful pub in Wingham, having left Super Ted at home with my amazing bestie. Tomorrow I am 40, a day I dreaded before. Ironically I now can’t wait for the day I am 45, when chances of survival dramatically increase.
Next week I’ll be remembering our darkly comic, infuriatingly stubborn, beautiful boy Mavs who should be celebrating his 38th birthday, but was stolen by cancer almost nine years ago. He lived with incurable disease for almost five years. I wish I knew then what I know now. I wish I could have supported him better than I did. We were so young. We all still miss him terribly.
Thank you to everybody that continues to support me, I can never explain adequately what it means to me. Thank you to all of those who have so kindly contributed to my birthday fundraiser, including many people I have never even met. Times are tough for lots of people, it means so much. Here’s the link just in case! https://www.justgiving.com/fundraising/alys-courtney1?fbclid=IwAR3ymM8VPdping9MU1qY-VC5oo1HsGU0G1TDWnmxZppdMRyTm5XO9Qtohac&utm_campaign=pfp-share&utm_content=Alys-Courtney1&utm_medium=fundraisingpage&utm_source=Facebook
Super Ted update- he can say “mummy” !Nanny says he is talking to the remote control.
October is breast cancer awareness month. A lot of ladies object to the way it’s promoted; breast cancer is not pink and it’s not fluffy, it’s just plain shit. I don’t really care, the important thing is to get the message out there, especially to younger women who don’t think it’s a risk until they’re over 50. During a recent post-chemo steroid high I volunteered to “get involved” on behalf of the charities that support me, so don’t be surprised if you see my silly old scarecrow mug in local media. I have always hoped for fame or at least notoriety but never dreamed of hitting the dizzy heights of a feature in KM Extra. Here’s hoping.
Cancer diagnosis often leads to reflection and introspection- and it’s hard not to ponder the totally unhelpful “why me?”. In truth it’s more relevant to ask “why not me?”. The facts are that breast cancer is the biggest killer of women in my age group (YEP THAT’S RIGHT- WOMEN AGED BETWEEN 35-49) and if you were born after 1960 the lifetime risk for men and women of getting some kind of cancer is 1 in 2. Obviously your lifestyle choices are an important factor in determining the actual risk of developing this illness. We’re all dealt our cards, if you like, but how you play them is pretty bloody crucial. Using that analogy you could say I’d challenged Victoria Cohen Mitchell to a hand of poker whilst blindfolded, and very, very drunk. The truth is I’ve played my cards with a voracious appetite for certain pastimes which have a pretty crappy track record when it comes to life expectancy. Despite my mum’s efforts (which involved beating, social humiliation, denial of basic human rights YES IT DID MUM) I have been a smoker for over 20 years. Funny thing is with hindsight I don’t even think I was even addicted to nicotine before my diagnosis and now by Christ do I need a fag. I’m a regular consumer of alcohol (to say I drank more than the recommended limit would be a slight understatement), and like smoking I only managed to abstain during my pregnancy. Let’s leave it there- there may be time yet for me to become a politician. It’s a tricky thing to consider whether I’d change the way I have lived my life. Obviously if I’d been asked to choose when I was 19 between living an abstinent and long life which guaranteed watching my son grow up I’d choose that over spending the next 20 years pissing around and generally achieving not very much, yet I have experienced more, fun, love and laughter in those years than many people would if they lived twice over.
I had a “cancer off” in the chemist this week with a man who pushed in. I know I’m supposed to be living in the moment and enjoying the sun on my face etc but this bloke really pissed me off. I’m not proud of playing the cancer card but he got me going and he shouted in my face that he had cancer too. I shook my fist and yelled “it’s not a bloody competition!”. Not my finest hour but made me feel better. And when I left the shop lo and behold he’d parked on a DOUBLE YELLOW. I mention this because I’m aware that I should be trying to be mindful. I was thinking of those motivational phrases that you buy printed on a background of sunsets etc and I’m not generally a fan. I remember a summer Sunday (mostly liquid) lunch, during a heavy downpour where I quite literally put into practice not “waiting for the storm to pass” but “learning to dance in the rain” . What a hoot singing and dancing in monsoon weather in the street! Although a word of advice for those who might also fancy giving this a whirl. First check there are no pedestrians coming and if there are make sure they are not accompanied by toddlers who may be easily frightened and then definitely DO NOT accidentally squirt shampoo in the small persons eye as this could make the parent very cross and spoil the whole thing for everyone.
We’ve got some big family occasions coming up which kicked off with my mum’s birthday this week. I baked a cake and I don’t think she was amused that we actually used a blow torch to light the candles. Accommodating the family, I issued a daily itinerary and copy of house rules. Let’s just say the dynamic in my family is complex and I thought it would be helpful for expectations to be in black and white. This was a dry run for Christmas when I will be adding a yellow card/sin bin penalty system. I’m sure readers will agree these are sensible guidelines rather than the diktat of a slightly mental anal retentive.
Happily mum’s birthday passed without incident. I was most disappointed that she didn’t seem to like the most thoughtful gift which was a recreation of a photo of me and my siblings taken nearly forty years ago.
In other news, Super Ted crawls, god help us. His mastery of the remote control has developed at the same speed as his sense of humour, I swear he deliberately turns the telly over to “Cocaine Coast” as soon as my mother arrives. Highlight of the week: the clever people off of The Chase were the contestants on Tipping Point!
Next week I start the second half of chemo, 5 consecutive visits to hospital and what sounds like a more brutal regime with high risks of infection. I’m frightened.
Oh and the dog is poorly 😬
The new normal
The death of Rachael Bland was very sobering for the cancer community, particularly for younger women with breast cancer. There’s no doubt that Rachael’s straight talking and humour has made great strides in tackling the stigma that is still attached to this crappy disease. And stigma there is… I saw a news article recently about how Asian women are over represented in deaths from breast cancer because they are afraid to speak about it and seek medical help. It’s with gratitude and respect that many women will remember Rachael. Rachael’s death has shaken me. Bar an extremely successful career (she should have chosen the NHS over the BBC 😜) there are so many parallels and synchronicities between us. We were born in the same year, both have young boys (Rachael’s Freddie calls his grandfather Grumpy as Teddy will my dad), reading her blog I thought several times I could have written it myself (albeit less eloquently), some of the early entries felt like she was inside my head, even down to her wondering if she’d outlive the dog (she didn’t. Now I’m not a dog person and inherited Norbert when I met my partner… he’s the dog I hate least but I still hope he dies first). She was upbeat and positive, and down to earth and funny, explaining things in a way which removed some of the fear from a world we all hope we never have to learn about. Chemo was effective for her like mine is proving to be (tumours have shrunk significantly already), and she completed active treatment with relatively mild side effects, like me so far. But the cancer came back and when it does that you have very little chance of beating it. A side note- there has been discussion in the press about the language that should be used to discuss people’s experience of cancer, that using phrases like “winning (or losing) the battle” implies that people have some control over it- personally I couldn’t give a toss about terminology and to me it IS a fight. Rachael was unlucky. Her death brings home to me that life will never be the same. If I am lucky enough to have a good pathological response to chemotherapy, and for surgery and radiotherapy to do it’s job such that the magical acronym NED (no evidence of disease) is decreed at the end of my treatment it will be bloody fantastic. But I’ll never be free from the anxiety that it will come back, and the fact is that cancer will most likely kill me sooner or later. Learning to live with this is going to be hard. Lots of people in my shoes talk about coming to terms with the new normal. I’m getting there but there’s a long way to go.
I realise now that it’s not just cancer trying to beat me. Cancer has a whole host of horrible little henchman that it’s brought to the party- not just physical ones (and physical ones are starting to kick in, although I’m relatively unscathed by the worst side effects it looks like the veins in my right arm have given up and I’m not even half way through the life saving poisonous treatments being pumped into me every three weeks). Its other side kicks are of the psychological variety. It’s sunk its horrible little hooks in my mind… telling me it’s weaving its rotten web in my brain, clutching its claws into my throat, its slimy scales into my skin. Cancer has a mean little friend called Agoraphobia too, whispering to me that it’s not safe out there, and another evil ally, Social Anxiety, telling me I can’t look people in the eye. Deep breaths. This is the new normal.
My counsellor tells me I have to turn these negative thoughts into positive ones. So rather than beat myself up about being a bad parent because Super Ted’s favourite toy is the remote control, I’m going to accept that the next few months are a write off and enjoy autumn and winter with my little boy being cosy and watching shite TV. I’m going to get a new armchair and a posh blanket, rearrange my furniture and get snuggly in front of the wood burner (let’s see how that works out once Ted is mobile). I’m not going to worry that I know the ITV schedule from 6.30 am to 6.30 pm off by heart, and even the sponsors of every bloody programme. I shan’t let it bother me that Teddy probably thinks the Loose Women and Bradley Walsh are members of his family and I’ll try not to get irrationally angry about Ben Shepherd smugly correcting the contestants on Tipping Point. (It’s easy when you’ve got the answers on the ruddy card Ben! Jeremy Paxman you are not. ) Thank god for my family and my hardcore friends that can deal with the fact that my world has shrunk such that the big bastard C is my only topic of conversation. The new normal. Sigh.
Not many lolz this week guys. But the wig lady at least didn’t let me down when I went to pick it up (put the sandwich board AWAY!) I still haven’t had the front to go out wigged up- I feel like all I need is a pair of size eleven stilettos to complete the drag act look. And on the subject of hair, if there is a god, she’s got a twisted sense of humour- while I’m desperately hanging on to about half a dozen strands of hair on my head I notice the coarse black chin hair that sprouts periodically continues to laugh in the face of the chemo drugs.
The dust settles
I thought it would be literally impossible to ever think about anything else but it turns out it’s actually impossible to think about my diagnosis 24/7. The almost palpable anxiety that pervades this house has lifted, or shifted slightly at least. However cliched, life has to go on, and on it goes. I have resumed my role of new mum (or an impersonation of one anyway), despite being so dire in the early weeks following diagnosis, Super Ted still knows and wants his mummy. There’s a lot of myth-busting going on along the way. Being a mum and having something to “fight for” hasn’t helped in the way I and others assumed it would. At times it is almost physically painful being around Ted, the what-ifs and uncertainties smack me in the face as I watch him developing. “He won’t remember this” to my ear sounds like “he won’t remember you”. Now though I am more able to drag myself from under the surface of self-pity and get on with some semblance of normality.
My long-suffering and amazing mum has gone home, 200 miles away. We couldn’t have coped without her acting as live in house keeper, personal chef, child carer, wig advisor, emotional support. Driven by boredom I have taken to terrorising her by text. Me: Mum, we need you please come back. Mum: what’s wrong? I’m getting in the car. Me: There are THREE items in the laundry basket…. Me: mum I’m sorry we’re just not managing… Michael didn’t cut the crusts off my sandwich … etc
All the cancer
The most recent news is that I have two cancers. My original scan picked up abnormalities in my thyroid, suspicions were confirmed by biopsy. Cue jokes about not doing things by halves etc etc… turns out I also have completely coincidental, unrelated thyroid cancer. The good news is that it is very early stage and small, and the excellent news is that it is not metastatic breast cancer which may have “changed the outcome” ( scary doctor speak). Symptoms might not have developed for years. Hopefully we’ll one day be saying breast cancer saved my life. Unfortunately chemo is ineffectual on this veritable gnat bite of cancers. Treatment plan is unchanged but at some point they’ll be whipping out my thyroid and there will be more nasty hormone therapy I expect. The fact that we responded to this diagnosis positively shows how far we have come in the last few weeks.
The hair is shedding thick and fast. The biggest issue is a practical one, it gets everywhere annoyingly, horribly. I don’t think I’m particularly vain and my hair care routine previously involved whatever shampoo happens to be in the bathroom and a comb. However hair loss is an emotional issue, it’s a badge, naturally drawing unwanted attention whenever you leave the house. It’s hard to know whether to ditch the cold cap (hair saving device which prolongs the length of chemotherapy by 2 hours) or persevere. Hair is now very thin on top, and the Friar Tuck look is no good for a woman within touching distance of 40. After a bad experience with the wig ladies at the hospital (despite your prediction ladies that you will be seeing me again, you won’t. You can shove your nasty wigs up your arse) a lovely local lady was recommended and a syrup is on order. (Note to lovely lady if reading this: after our email discussion about my nervousness and your reassurances of compassion and discretion, I was not expecting a fucking sandwich board outside your house to “Welcome Alys!!!” WTAF?!?!?!) Sorry mum I couldn’t cut you out of the photo
There are surprisingly many. The overwhelming kindness of people who have contacted me with their thoughts and more, gifts literally from around the world, meals, time. I am innately shy (which can be misunderstood as aloofness maybe) but I am embracing these connections with gusto. There have been reaffirmations of friendships old and new. People genuinely want to help and are relentless in their offers. What a bloody marvellous world, how lucky I am to know so many generous and selfless people. And other stuff; watching my other half and Super Ted develop a relationship which would have been so different. I’m sure he didn’t expect fatherhood to be quite so hands on at 48 and third time around but what a beautiful thing it is! A closeness and sensitivity among my ever supportive family, for all our foibles we stick together in a crisis (my heart breaks for my extended family who somehow manage to think of me during their own tragedies). New friendships formed via online communities with whom I can share feelings and thoughts which can’t be expressed elsewhere (Cancer friends! Like New Mum friends but they moan less) Thank god for the internet. And the jokes. I am now privy to a whole new world of bad taste jokes and gallows humour, accessible only by meeting a rather crappy set of criteria. I can still make my best friend laugh, she can still make me laugh, even about cancer. Long may that continue.
The first six weeks
Howdy to anyone out there interested in following my journey. Weird word “journey” . I used to hate it being used in any other than the literal sense -i.e a physical process of getting from A to B. Particularly irritating way to describe pregnancy/new motherhood (nah- that’s just a thing and then a job to do, I wish I’d realised at the time!) both of which I have recent experience of. However I’m learning that it’s an apt metaphor for this cancer stuff. I suspect I’ll also describe it as a nightmare at various points but “journey” seems right for now. I’m at the beginning, there will be various stages and landmarks before I get to the end, whatever the outcome may be.
I wish I’d kept a diary from the first day of diagnosis but have only just discovered the strength/motivation. For this first post I’m just going to rattle through these first few weeks, there’s a lot in my brain so hopefully I’ll be able to keep going with this and go on to talk about other stuff in more detail at later dates. Top topics currently include 1. Nice, kind people 2. Bloody annoying people 3. Annoying dogs 4. Annoying teenagers . 5. Feeling like you are completely mental. 6. Developing weird OCD and superstitions i.e “if England don’t beat Croatia I’m dead (oops) . All thoroughly useful themes for people in all walks of life I hope.
So in summary, when my little boy was six months old I found a lump in my right breast. Having a history of breast cysts in the family and breastfeeding at the time I didn’t freak. Made a doctors appointment, got a bit fobbed off, made a fuss and got referred to a consultant. Breezily attended examination. Didn’t flinch when referred to another hospital in the trust on the same day for ultrasound, and if needed mammogram and biopsy. Didn’t twig when during the ultrasound the doc reassured me that the consultant wasn’t just a nice man but an excellent surgeon (ahem, yes I am an idiot).A week later I was sat in an office on a Monday morning being told I had invasive ductal carcinoma, (a fuck off huge tumour) with other pre cancerous cells and would require immediate chemo, mastectomy followed by radiotherapy. I went into immediate shock which has taken weeks to subside.
I haven’t yet dealt with the trauma of having to immediately stop breast feeding my baby who was six months at time of diagnosis. That’s for later. I was underwent Positron emission topography scan to check if the nasties had spread. This involved being injected with a radioactive die which meant I couldn’t even see SuperTed for 8 hours , breast feeding was over. The fussy frommit who a day earlier screamed in the face of a bottle spent the night with daddy and by morning he was a convert, he’s now a bottle guzzling machine, we have to go to huge lengths to stop him spotting the bottle before it’s ready to shove in (various analogies for his behaviour similar to unfortunates with more hardcore addictions) . So a weight off my heavy, wide awake, completely melted down mind.
Fast forward.. I’ve transferred my care to the Royal Marsden. My cancer has been described as “eminently treatable” (not quite as reassuring as you’d think- I’ve managed to abstain from googling the technical definition of eminently). Awaiting results of thyroid biopsy which looks dodgy. Lymph node involvement which hopefully will be zapped by the whole treatment plan. I’m 2 chemo cycles in and faring ok so far. Hair coming out. Full of medication, particularly stuff to deal with anxiety and depression and lack of sleep. I’m working on that.
Enough for the first post. I’ve got plenty going on in my brain and writing it down will hopefully be good therapy for me and may chime with others going through similar stuff. It might make my friends and family understand why I have turned into a complete nut job and will encourage them to stick with me through this pesky little journey.
thanks for reading, or pretending to 😜