Friday, 7 October 2016

Ah,Ah,Ah, Ah Staying Alive!!

Credit: Pixabay
I've been meaning to write this post for a while now because it helps to explain how it feels to head toward what's saccharinely referred to as a 'cancerversary'- the year (or years if more than one) since diagnosis.

For me, next month will mark my first. For the uninitiated it sounds like a triumph- one year better. For those of us who have crossed the line, it's terrifying and confusing. Triple Negative Breast Cancer is rare and aggressive. It can't be treated with hormone therapies like any of the other subtypes. In essence, once we have completed our initial treatment, TNBC survivors can feel like sitting ducks as we also have the highest rate of recurrence in the first three to six years post diagnosis. It doesn't come back in all cases and is very much dependent on the stage and grade but while I am glad to be marking one year of survival, forgive me for feeling apprehensive too.

Those of you who have read this blog before will know I always like to do something for other sufferers, so with that in mind, I've put together a list of things survivors might want you to know but don't tell you.

1. It can take ages to find our way again, be patient
Many survivors feel pressure to be a plate spinner once treatment ends- we don't have cancer in our bodies so we should start losing the weight treatment gave us, we should exercise, we should eat an ultra healthy diet, we should get back to work, we should. should, should and preferably all at the same time. Accept us while we experiment with this new life we've been given. I know I surprised a few people when,  in the space of months, I went from setting up a monetised blog to completely turning my back on professional writing but it wasn't a job that others valued me for and I made peace with the fact I wasn''t as good as I'll ever want to be. There are plenty of other things to try.

2. We have lots of ups and downs
Yes, cancer has left out system but the memories remain. More than this, fears of it returning combined with the reality and gravity of treatment make for some really down days. Add into the mix our self-confidence being non-existant as hair takes ages to grow (it takes roughly a year after chemo to have a complete coverage), weight gain, skin changes, thinned eyebrows and lashes- getting out of the house in spite of it all can be a real achievement. Encourage us to remember what we've been through and be gentle with us. Please do not remind us that we're lucky to be alive or should be grateful - you are not providing us with insight, just helping us to exercise our self-control from telling you to button it.

3. Don't leave
One of the toughest things I've had to cope with since finishing treatment, and I know I'm not alone, is everybody getting back to routine (and assuming I have too). We've just had months of pilgrimages, phone calls and messages, yet once survivors are told we're better, it's often the case that the contact drops off. In fact the occasional check-in is really handy to see if we're ok. Particularly bad times can come from a cancer story in the paper, which leads me on to my next point....

4. We're not Cancer specialists
Something funny happens when you survive cancer. People want to tell you A LOT about other people with cancer, or people who have died from cancer. My least favourites are the people who tell me about someone they know who thought they had the all clear and then the cancer came back. Thanks for adding on a new dimension to the 3am panic attacks!

5. We think about dying more than you know
You know when you're playing a game where you pretend not to look and then you look quickly to catch the other person out? That's what being post cancer is like.
Some of us can understandablY think any sign of infection, disease, twinge, ache etc is a sign of cancer. In my case, I get the odd mortality reminder at crappy times like when one of my children does something particularly funny or clever or bright or tells me how they love me more than anything in the world (and I am inwardly terrified that I, who would do anything and everything for those precious humans, will be the one to destroy them).

6 We think life should take on a more profound meaning and we see it as meaningless all at once
Some days I think about retraining to be a doctor (which is what I've wanted to do since I watched Jimmy's when I was a little girl) and other days I have to do something boring like washing up and I'm tempted to throw away all the dishes because what a waste of life it is. It can be really hard seeing the rest of you going about the trivialities of life in a fog of blissful ignorance.

7.We've seen more of life than most people we know yet can accept we know less than we thought
You people have meetings, clubs, societies, hobbies and are happy to plan things in the distant future. We've had a biological grenade and fended off the reaper. Life doesn't look the ssame from where we are standing and we no longer see the future like you do- an inevitability. For us, the future is 'as long as nothing else comes up and gets in the way.'

I visited my breast care nurse today for a good cry debrief and I learned I'll have to forget my Joe Wicks' obsession for the time being as I should be nurturing my battle worn body rather than trying to squat, lunge and weightlift it into submission. No heavy exercise and no cutting things out of my diet - I followed this straight up with a big hot chocolate with whipped cream
I learned the Spring will bring new life and most likely the rest of my hair and that the fertility side of things normally stays shut down for about two years afterwards. Persoanlly I thought this fact could have been illustrated better by the nurse breaking in to song,,,"noooooooooooo, bodyfor-m, no bodyform for youuuuuu," but she didn't agree.
As for tiredness, it's perfectly normal to feel tired for months after treatment. This particularly was music to my ears as I've been fighting exhaustion lately and pushing myself to make each day count. Turns out it's not as lazy as I thought to want to rest.






Monday, 20 June 2016

Follow The White Rabbit




Is it just my newsfeed or everyone’s that is jammed with ‘honest’ accounts of parenting? Apparently we all need to share the dark, warts and all side of raising our children, ironically on a format we upload only our edited, picture book moments. I’ve not heard so much from the single parents on this though…. I wonder where they all are…. Oh, that’s right, we’re the ones who aren’t really allowed to complain.

Do not for one minute get me wrong. I love my children to the point of being a tad clingy. It mildly, no actually it quite largely, miffed me when they decided they are big enough to entertain each other and don’t need me to play their games. Yep, I would even consider myself lucky that I get to do things my way and if the girls want to make a camp in the front room I don’t have to tidy it all up at the end of the day like I did in a past life. There’s not so much passive aggression these days as there was when there was another grown up to please but talking of please, please don’t say we have it easy.

There’s something very real we lone parents have to deal with and for once I’m not talking about the financials or the dating. Something else. Something frustrating and yet freeing once you accept it. It’s the concept that i/we will always, always seem to be doing a bit shitter at adulting than the co-habiters.

Being a round the clock MAD (Mum and Dad) means being the fun parent and the stickler for rules, sometimes at the same time, which gives your children a head start on how to recognise a personality disorder. It means sometimes dinner is a tad chargrilled while you help to finish off a craft or that you have an extra ‘picnic tea’ that week because you can’t take the kids out on their bikes AND cook.

We’ve all heard the stories of single mums who have amazing weekend benders but I’ve seen The Waltons and I’m guessing that’s not a true account of a two parent set up? Rather than find myself cavorting in a Weathersppons with pitchers of cocktails this weekend I instead decided to decorate. It meant I had a couple of cardboard boxes lying spare which I offered to the girls so they could make a fort after school. This In turn led to the following series of events while walking home:



Child 1: Can we build a castle?

Child 2: Yeah can we build a castle?

Me: We’re not even in the house yet.

Child 1: Can I open the door?

(I fumble for keys in my pockets while laden down with lunchboxes, bags, coats, wellies and all the other ‘just in case’ clothing you need to take for British Summer Time)

Child 1 attempts to open the door several times while the expletive huffings under my breath grow louder until I take charge and open the door

Me: SHOES OFF! Yes, you can have sticky tape, yes you can have scissors, no, don’t hold… DON’T hold scissors like that…. Right, give me the scissors…..

Girls scamper off leaving me to sort away the armfuls of stuff, while simultaneously attempting to open and read the post, clear the breakfast bowls from the table, flick  the kettle on as I head into the garden to feed the rabbits.

Child 2: MUMMY! She’s not letting me cut! And I’m hungry….

Me heading back inside and finding them both a snack

Child 1: Mummy, can you help us?

I start explaining to the girls how to make the sturdiest design with the cardboard they have…

DOORBELL RINGS

Stranger: “Do you have a white rabbit?”

Me: Yes

Stranger: Oh, It’s out in the road running between the cars.

Cue me, a large bald woman, running out the front of the house shouting, “Dove!” at what is obviously a rabbit and leaping into the bushes attempting to catch her. Yes, that’s right, looked perfectly normal.

With rabbit back in her hutch I retreated to the kitchen, finished making my cup of tea and gave in to getting fish and chips on a Monday night when my phone rang about a full-time, proper, seriously grown up job back where we used to live. This led to lots of squinty eyed type thinking about salary versus childcare costs and arrangements for holidays all while responding to “mummy, where’s my balloon?” “I’m still hungry!”, “can we stay up?” interspersed with inaudible arguing and singing. I also got a phone call about a college course I’m thinking of taking- you see, we single parents are often caught between not knowing whether to work and be bled for childcare and either deal with the juggling act of school holidays or have the conversation about reliability and commitment which invariably comes when you have to take time off in the holidays, or whether to go back to college or university and learn a new skill while our children are growing. Cue more squinty eye thinking and a decision to let the chips fail and for fate to take charge. All this squinting is giving me a headache.

So, now I find myself in the kitchen, pretending all the cleaning and tidying isn’t there. Today I’m neither fun mummy nor strict mummy. I’m shattered mummy who’s actually for once quite pleased to be the only grown up but only because there’s no one to question me when I binge on snacks and trash tv. It’s less ‘Netflix and chill’ round here and more ‘Netflix-eat-a-multipack-of-Wotsits-and-pretend-we-have-mice-when-the-kids-ask’.Although if you find us on Facebook, we’re the smiley, craft making, giggly bakers we pretend to be, ok?

Friday, 27 May 2016

Ballsybaldy: What next?

Ballsybaldy: What next?: I’ve sat at the kitchen table off and on for the past five hours, busying myself on the laptop and only getting up for an occasional lig...

What next?


I’ve sat at the kitchen table off and on for the past five hours, busying myself on the laptop and only getting up for an occasional light fit of tidying or marking things on the calendar. I’ve even managed to get dressed today and put some make-up on but the truth is I don’t know what to do with all the time stretching before me.

It’s too soon after the event to say I have depression, and the short space of time between where I am today and being told treatment was done affords me the dignity of ‘processing’ rather than being given a mental health label.

How would you envisage life after treatment? Do you think of smiles and the overriding feeling of success and hope? I did. I’ve even felt like that at times throughout the journey and began making plans. The trouble is, I wasn’t ready. I was pootling along in my new norm, going to appointments and resting in-between. They say it takes three weeks to form a habit so by now it’s become a way of life to be ill, looked after, checked in on.

Those pipe dream plans I was making have lost their lustre now I can do them, and anything else I might choose, and even though I was ratty and cantankerous, I miss my family coming in and If I’m honest, I miss that feeling of being the baby of the family again.

Now it’s time to be a grown-up, to once again organise a home and take responsibility, to find a job and more than anything else, find my place in the world. The past two days I have spent willing the phone to ring, the hours to tick by until some social interaction and I realise now how much my life before The Cancer was about my children.  I don’t mean this in regards to how I love them but how they were literally my whole life and I went into a suspended animation when they went to their other home.

I have no idea how to begin this fresh start of mine. Please don’t see this as ingratitude, I am not wishing the outcome were any different, It’s more a case of letting you in on the shock of It after spending so long thinking I wouldn’t be here, it’s the pressure of knowing I really need to make life count now when I really want to comfort eat and lie under a blanket until such a time as I feel ready.

I suppose it’s also that the treatment is done, the cancer is gone but the effects are still here. I’m still bald, I still have no eyelashes, I still, as our newsagent reminded me today ‘have put the weight on’, I will continue to be in a chemically induced menopause for the next 18 months with no guarantees that part of life will return to normal after the injections stop.

My confidence which was shaky at the best of times before cancer took hold has all but gone. There’s nothing to stop me now for applying for a job. Nothing that is except my thoughts and feelings.

As for dating? I’m doubtful I’ll be top of anyone’s pile after this. On a superficial level, treatment has aged me. On a deeper level, cancer has changed me.

Even as I type all of this it doesn’t escape me how it could anger some people who may think I’m being self-indulgent after such good news.  I don’t have anything in response for you except to say I am sorry. I wish I felt lighter and was blazing a trail. I think, if I’m honest, I half expected to find myself on a path after this where I could think ‘ah, I see,’ as though the cancer had all been part of a much bigger plan.

Yet here I am, looking around the house, checking in on Facebook, refusing to turn on the telly during the day, not knowing what to do next and fearful I’ll waste my fresh start.


Wednesday, 25 May 2016

And Then This Happened

Surgical stockings, drains, dressings, injections.

Nausea, ulcers, swelling, tiredness, bone pain.

Nose bleeds, constipation, hair loss, nail loss, infections.

What do all of the lists above have in common? It's not a SATS question, I wont ask you to find the determiner or adverbial phrase or some other grammar thing Child 1 can identify on her own while I have to fire up The Google.

Don't guess. I'll tell you. They're lists of things I wont miss now The Cancer is gone.

I whisper that to you. All day long I have clutched that knowledge in my mind in much the same way as Charlie Bucket grasps his golden ticket on his run home. (I LOVE that film!)

I'd forgotten there would be 'news' at the surgery follow-up. I was so preoccupied with showing the consultant his handiwork and asking how long it would be before I could use my arms properly, have a bath, take off the surgical stockings, start exercising (not post-operatively but for the first time in my life!) I was taken off guard. This was the same consultant, who almost seven months before, had broken the news of my breast cancer. Today, he turned to the Macmillan nurse who has accompanied me from that diagnosis through every major step and said, as I sat before them showing off my scars, "shall we talk about results now?"

The results are these. They removed a 1.8mm tumour with clear margins and the lymph node that was biopsied showed no sign of cancer. In short, the tumour is gone and there was no spread. I have a check up with the oncologist to discuss radiotherapy but the unofficial word is that with results this good I wont  need further treatment.

It may seem strange that I'm choosing to share such news with such an expressionless tone but there are sound reasons for doing so.

Firstly, now the endless spin of appointments, discussions, treatments and side effects are over, I'm beginning to process all the emotional stuff. My brain is catching up. But more than this, so very much more than this, I can't forget everyone I've met who isn't getting out of it as easily, or at all and it wouldn't feel right to insensitively shout about 'the news'. So I whisper and blow kisses to everyone of you who has helped me and my girls through the last seven months by showing us kindness and giving us hope. You have given us much more than cancer ever took.

Time to go now and make some plans for the future. Whatever that may hold.

With lots of love always,

Ballsybaldy, Child 1 and Child 2








Saturday, 21 May 2016

Ballsybaldy: All Change Here

Ballsybaldy: All Change Here: I have so much to tell you. As you may remember, I was feeling really excited in the lead up to my operation which is unusual for me as, h...

All Change Here

I have so much to tell you.

As you may remember, I was feeling really excited in the lead up to my operation which is unusual for me as, having suffered with anxiety most of my life, my default setting is imminent doom.
The day before the 'double off-double on,' my sister and I went off to the hospital for a scan of my sentinel lymph node (which involved being injected with a small dose of radiation and having a plank of machinery pass really close to my body to build up a picture) and my pre-op assessment. With bloods, weight and height checked, MRSA swabs taken and a bottle of Hibiscrub to give myself two surgical washes before the morning I was off home. Later on that afternoon I found out I was going to be admitted for 7am and so for the rest of the evening I added random objects from home to my already bulging suitcase (think appropriate size for a two-week family holiday).
The next morning, having dropped the girls off to my BFFs at an ungodly hour, we headed to the Admissions Suite at Maidstone Hospital- if it's already building an image of an airport you wouldn't be far wrong- myself and the other ladies being admitted that morning hung around outside the suite until the doors opened in much the same way as you do when waiting for your gate to be listed for a flight. One thing my sister and I noticed from the off was how everyone else had a rucksack or at most a bag for life while here I was, dragging ginormous luggage, so cumbersome it got stuck if both double doors weren't open.
After check in, we were sent round to a waiting room and very soon after to a consultation room where my vitals were once again monitored and I met pretty much everyone who would be in theatre that morning- this included having to repeat my name, date of birth and what I was having done to everyone who entered the room (many) and having lines and arrows and dots drawn across my chest and abdomen, a surgical map, if you will. Despite having no partner for a long time and being in a chemically induced menopause for the past six months, it's still procedure to take a pregnancy test before theatre- that felt odd- and an hour or so later I was walking myself into the theatre/the place where they give you the good stuff that makes you fall asleep....

Five hours later, I woke up in recovery and apart from feeling like I'd been used to lick every stamp and envelope the hospital was sending out for the next year, I didn't feel any pain or discomfort, save for the pressure I felt around my chest which turned out to be from them putting my surgical bra on inside out (turns out men have got taking bras off down but putting them back on? Sheesh).

Sometime later  I was wheeled off to the ward I would be staying in for the next two days and I was very fortunate to be given a side room with a tv and an ensuite so I can please myself throughout the day and night. In typical Ballsy fashion, I surprised my mum and sisters with a call as they were expecting the hospital to let them know once I was our of theatre. A doctor came and checked 'what was going on' under my gown/ how I was bearing up and it was then that I was in for a shock.
"Do you want to look?" They asked.
"Yep, best to know what I'm dealing with," I said. Typical journalist, needing to know first.
I was expecting to be bound with bandages and for there to be red, angry incisions with eyelash-type stitches clawing out of my tender skin.
My gown came off to reveal clear plasters- I could actually see my bobalobs- which appeared bruised but LOOKED THE SAME AS BEFORE. Complete with nipnaps and everything. Effectively my chest had been on a formula 1 experience- complete with like for like pitstop.
"They look the same, I look normal!" I said to the doctor and nurse who smiled at me as if to say 'surprise!' (and also looked flaming happy with themselves!)
I wont give a blow by blow account of the rest of my stay in hospital as frankly it mainly involved my sister and I doing hundreds of puzzles and riddles to pass the time, an endless supply of tea, food and the best care I have ever had. I can only imagine it felt akin to the same treatment you get on a First Class flight- but it was courtesy of our NHS. I was genuinely sad to leave.
In terms of pain I can't say I've had any. Sore and pressure, yes, but pain not really.
I was discharged with four drains which were an absolute treat for Child 2, who once spying they had blood in wanted to squeeze them out like I was a mummy/water activity table hybrid.
Child 1, my sensitive little-big girl, was quick to let me know how proud she was of me and we have exchanged many a cuddle and a squeeze since I've been home.
The girls have gone to their dad's now for a week as I am unable to lift anything or do anything strenuous with my arms for the first two weeks and then by adding bits and by trial and error from there on in. It seemed sensible to not be a martyr about it and send the girls off for a great time with their other family while I recover/ drink tea and watch yet more Netflix. Thank you, House of Cards.

I went back to the hospital yesterday to have two of my drains taken out with a hope the remaining two will be removed early next week, and I have a follow-up surgical appointment on Wednesday where I hope to find out the results of the node biopsy and if radiotherapy will be necessary.

I'm going to head off now as my arm hurts from typing, I wish I could show you the surgeon's miraculous handiwork but you'll have to take it from me that there's no complaints from me on the result. It's do-able, ladies and gents and like pretty much everything else, the thought was worse than the deed.

Lots of love to you all xxxx


Tuesday, 10 May 2016

Making the.. uh hum...'breast' of it

"This isn't you,"said a forlorn looking Child 2 at bedtime last night. Her brows were furrowed and the tinge of disappointment in her voice seemed vastly more grown up than the little figure whose legs were dangling off the toilet, not tall enough yet to reach the floor below.
Her pigtail plaits wilted at the side of her head after a day's worth of play, while her big eyes for once,  met mine; a rare thing for a girl who is always so busy in her own imagination.
Never one to miss a beat, she was absolutely right. The patient mummy whose children often ask why she is so silly was for once replaced with a hoarse banshee, half nagging, half braying at my daughters to tidy up, to follow orders, to listen.
Child 1 was in the bath, quietly accepting that mummy was in one of her grumps which soon passes. As I washed her hair, I began thinking of how for the past six months I have tried to capture and value the essence of every moment I have with my girls, understanding so well how these bubbles of time are beautiful and fragile all at once. There's nothing more clarifying than facing your own mortality to understand how valuable life is. And it's not even the big events like birthdays and weddings, although of course they're special too. It's the moments when your 4-year-old stop to pick you a flower, or your 7-year-old is asked to draw a saint in school and illustrates St. Mummy- these are, I guarantee you, the moments to value above all else.
Yet here I was last night, behaving like 'normal', or at least how normal once was, rushing through our nightly routine, stressing about having to read a bedtime story while a stack of work and cleaning were competing for my time.
I raced through the story, no time for the usual songs and silliness that is much a part of our bedtime ritual as going to sleep itself and hastily retreated to the silence of the kitchen. As soon as I made it there I was consumed with guilt for taking my girls for granted and ran back up the stairs with a plan to give them both a big kiss and say sorry for being bad tempered. It had been seconds since I had said goodnight the  first time- such is the beauty of living in a small house- and they were both still awake in their bunks.
I got onto Child 2's bed where she was sucking her thumb and sleepily twiddling the nightcap on her favourite dolly. "What are you doing?" she asked.
"I came to see you. I'm sorry I was cross earlier and I love you very much," I said.
"That's ok but can you go now because I am trying to sleep," she said matter of factly and closely followed up with a gentle push to the face to reinforce her point. Not quite the tender moment I was going for so I moved to Child 1.
"Hello, chops," I said. "I also wanted to say sorry to you for being grumpy and that I love you very much."
"That's alright," she said in a tone suggesting she's completely unphased by it all. "We know you have a lot to do sometimes. You've been really poorly but you've still managed to look after us," she added before turning over to sleep.
I made my way back downstairs more slowly this time, realising as I went how much has changed in the past six months- more than anything my priorities on having things versus having time.

Apparently the girls had nits this week

Anyway, this week I was on This Morning and I'm telling you this not for any real reason other than to say my disembodied voice was on a phone-in and I actually got to speak to Holly and Phil, Ok. so it wasn't quite on the sofa with them but it's close enough. That's one for the bucket list ticked! I was calling in to say I thought childless women were no more entitled to 'me-ternity' leave than asking for time off if a colleague broke a leg and that maternity leave isn't some jolly holiday.
Talking of jolly holidays, its only a few days now until what I have termed the 'double off' and today I took myself off into town for some bits. Essentially I raided Select for cheap baggy t-shirts and leggings and the travel toiletries in Superdrug (exotic as I am). With a couple of trash mags and a bag of Jelly Babies to complete my spree, I don't mind telling you I'm ridiculously excited for Friday. Some would say 'gleeful' even and they'd be right. It feels like a milestone albeit alternative.
Things I am blaming cancer for today: something in my eye (damn you eyelashes!), my head hurting after I banged it while cleaning out the rabbits (I didn't realise my ridiculously thick hair had acted as a force field for all these years), my left thumb nail entirely falling off, and shutting a cupboard on my own arm (technically half down to my own clumsiness but cancer still gets the blame because I was reeling from my other injuries when it happened).





Thursday, 28 April 2016

Nailing It

I'm never going to be a Pinterest mum as you can see by the charming array of delicacies pictured here. What you are seeing is my last minute efforts to rustle up a doll's tea party for the girls. Yes, I did cut out the sandwiches with a cookie cutter with best intentions to make a sandwich caterpillar but Child 2's continuing obsession with corned beef means they don't stack so well. Yes, you are also seeing in my desperation to make the plate look interesting I threw logic to the wind and speared party rings on cut down Pepperami. Savage.
On the cancer front I had my last surgical appointment before the big operation. It was a day for ordering implants and talking over the fors and againsts for keeping nipples.  It turns out if they can't be saved you can get stick on prosthetic ones for close fitting clothes in summer.  This gave me visions of a barbecue gone wrong.  "Oh, that's a funny looking ice cube in my drink..."
"No, sorry about that, it's just one of my nips has fallen into your glass. Go on, give it here..."
Anyway, mine got a stay of execution. That's one less thing to have to stick on these days I guess.
Talking of things being stuck on and equally falling off, after smugly declaring I had escaped losing any nails during chemo,  my left thumbnail has taken it upon itself to have a wobble and is wafting about like an over ripe milk tooth. Except I doubt I get any coins under my pillow, just a disgruntled note from the tooth fairy- much like when the binmen decide you've left out the wrong kind of rubbish and they decide to take a stand.
All in all, not a bad day for the girls and me- the tea party rolled nicely into a board games marathon session- despite super dad's efforts to cast a cloud. One thing i've steered clear of until now is touching on how draining co-parenting AND cancer is.  Especially if you are co-parenting with someone whose response to your diagnosis is 'I don't care' and when asked if they can contribute to a hobby for Child 1 told me I was using cancer as an excuse.  The mind boggles. Now, Boggle,  there's a good game..

Wednesday, 27 April 2016

That's My Potato!

I've been called many, many things in my reasonably short time on this earth but normal has never been one of them. I suppose it's a good job, all things considered because the wait between recovering from chemo and having surgery is like being teased with your old life- the tiredness and breathlessness have faded, once again I can do everything I used to- I feel 'normal' but out of the blue reminders/limits will pop up like mole hills. Take for example this weekend just gone when I set off for a couple of days away in Whitstable in one of the lovely Fisherman's Huts. It's a fantastic, thriving seaside town and i'm so glad I was feeling well enough to make the most of it.  So much in fact my friend and I decided to go out in the evening  to a pub. Historically i've always been a big fan of a night out. I love dressing up but when you're carrying extra weight from steroids  (and eating too much because your appetite has come back after all this time), and you have to stick on eyelashes,  studiously adjust a wig and draw on most of your face, I felt less girly and more Mr Potato Head and spent half the night concerned that one big gust off the North Sea would unmask me. Ho hum.
Still, I have a couple of things up my sleeve to stop me from sitting around and festering. Firstly,  I have found that while I'm undergoing treatment i'm allowed to work up to 15 hours a week which is just the right level of commitment for me at the moment- so time to get the freelancing show on the road, and then there are the comedy geniuses I share my home with. Like every great comedy duo,  my children have impeccable timing and each contribute differently.  Child 1 is quieter and sensitive but very good at being mischievous under the radar, while Child 2 is just an out and out clown who is blatant in her shenanigans and makes no attempts to cover her tracks.
Aside from telling me recently 'Come on, get your act together, ' when I was too poorly to take her to nursery,  my other favourite gem from Child 2 was her quizzically carrying her picnic tea at arms length back to me in the kitchen and in the same tone you would speak to a hotel receptionist about something amiss, she said: " Er Mummy, these are the wrong sandwiches. You need to do them again with corned beef. I'll be waiting through there, ok?' All the while squinting and animatedly pointing at the front room in case i'm confused by life in general and not just sandwich fillings.
Child 1 on the other hand will guffaw with laughter at her little sister's antics and has nicknamed me 'chick fluff' due to the soft, babylike hair i'm sprouting on my head.
She thinks its hilarious i've begun washing these first signs of life with something called FAST shampoo and quipped it sounds like something Roald Dahl would have written about.
Yet it was Child 2 who surprised me the most this week - who privately uses my bald head as a drum, will intersperse calling me beautiful and calling me a potato, when she corrected another child for laughing at me in all my baldness.
"You don't have any hair, you look silly," the child said loudly.
In a flash, Child 2 was there. "My mummy's poorly and her hair is growing back," she replied while giving a Paddington stare.
Seems like if I don't 'get my act together' she's going to do it for me!

Thursday, 14 April 2016

Cancer: The Gift That Keeps on Giving

I would say it's a full on one person pity party over here but that would be making light of something I need to get off my chest on behalf of me and all other people with cancer.  Well this point and a bloody inconvenient tumour...
I'm finished from chemo but still, two weeks on, i'm breathless and achey and melancholy.  Yes, I know that's hopefully the worst of it over and yes, I also know the sun is out.  
Here's the thing.  I've just spent five months in a constant spin of line flushes, blood tests, chemo, feeling ill, growing stronger,  scans, consults and repeat.  For five months my life became only about cancer, the nurses in the Oncology day unit became some of my closest confidants and then suddenly it was gone. No appointments to go to, no distractions. The real world has hurtled on five months ahead of me. My friends and family are at work, Child 1 and 2 are at school and nursery and I still don't have the energy to do much more than survive.  i'm not able to give myself a sense of achievement by decorating, ot gardening or exercising.  My biggest achievement these days comes from washing up and hanging out laundry all on the same day. 
That said I have decimated Netflix. At first I was picky and would only watch top rated films and series. By yesterday I knew I was in trouble when I realised I'm now scraping the barrel with any old thing and was even starting to say things like 'wow, look at that!' despite there being no one else watching with me.
I don't want to go outside too much because my self-esteem has taken a right old beating. I don't want to dress myself up because I can't hide being pale and bald (even I have had to give up my beloved beany in the heat) and dressing down has never helped anyone. Plus I have absolutely ZERO to say for myself other than giving a running commentary of the day's ailments. 
On top of all this are thoughts of how I need to change my life once i'm better. Part of me wants to be a proper grown up again and do a proper grown up job but there's also a whisper that won't be silenced which says 'you can't do that,  you've had too long out of it, give up, give in.'
A lot of people are aware of how cancer impacts on your physical identity but it's the changes it makes to your emotional identity which can at times be harder to deal with.  Who is this defeatist i've become?  When did I stop hoping and dreaming in favour of moping and feeling sorry for myself and frantic to change all at the same time? 
When I was first diagnosed I felt like I was living a nightmare. Now its turned into a combination of the dream where you're naked in front of a crowd crossed with trying to run but not going anywhere. 

Tuesday, 12 April 2016

Me Again....

It's really not been long enough for me to come back blogging after I signed off but today was one for big decisions about surgery and it didn't seem right not to include it in the journey.
I took a taxi out to the hospital in East Grinstead this morning and it felt like a luxury. The sun was shining and the route took me  through woodland and countryside. Anyone else ever go out for a drive with their parents growing up? You weren't going anywhere but the whole family piled in the car and drove aimlessly about narrow lanes; the serenity of the outdoors often contrasting with the commotion inside. Today the driver and I respected each others silence and I daydreamed all the way there.
Arriving early, I decided to grab a can of Coke from the cafe and sit out in the sun but thought better of opening it when I was besieged by flies and wasps and instead sat looking like I was in a bad disguise not fit for the sunshine,  complete with winter  coat,  beany hat and sunglasses.
Soon enough I was in my appointment to find out if  using donor tissue and fat from my own body was an option to reconstruct my new chest. This involves looking at either your abdomen, bum or inner thighs and while i'm now used to exposing my top half to all and sundry, I hadn't really thought I might have to stand in my knickers in front of a nurse and a Consultant- today would be the day I kitted myself in my bright,  rainbow Happy Pants, wouldn't it?! And I announced to the room I was wearing my happy pants- god , I hope they know it's a brand and they didn't think I meant lucky pants because that just makes it all kinds of awkward.
Anyway,  the upshot is by going this morning my three options for surgery have been narrowed down to one.  It turns out, despite looking like my skin is melting off me,  there's not enough there to do the trick, ruling out the option of a donor site.
The second option,  using muscles from my back and channeling them through under my arms to make a cleavage would make life as a single mum quite tough as it would have an impact on lifting and a longer recovery time than the preferred option for me which is......drum roll please....implants.
The surgery for implants is the shortest and boasts the quickest recovery time - which is an absolute must when you're single-handedly rausing two young children.
So there you have it. Surgery is set to take place on the highly auspicious Friday 13th, with a six to eight week recovery period, all being well.

Sunday, 3 April 2016

Time To Say Goodbye

Now seems like as good a time as any to hang up my blogging boots and get back into the swing of normal life.
I did think about blogging a bit longer but i'm not sure how entertaining the usual humdrum would be and it seems a bit self indulgent to carry on when all that's left now is to gain strength for surgery and recover post-op.
There's a life to be lived out there,  plans to be made, dreams to be realised. Thank you doesn't seem to cover it for all of you who gave time from your day to read, to respond to listen or to help in the past months but I thank you all the same.   You made me feel important when I felt so very small.
Something as simple as seeing people were reading the blog gave me a sense of purpose when my days felt they had none and it gave me an opportunity to throw out all the scary bits I couldn't deal with on my own.
It's thanks to all of you my lovely girls and I have a town we call home,  fantastic friends and hope for a healthy future.  While my cancer journey isn't entirely finished it seems right to wind things down- save for a few photo updates here and there.

Here's to the future xx



Wednesday, 30 March 2016

Altogether Now Say Goodbye to T!

What a ridiculously,  positively exciting day!
I had my last blood test for my last chemo and a surgical consult.
Tomorrow will be my last dose of chemo and straight after, the PICC line which took up residence in my arm three months ago will be removed.

This necessary, invading channel which stops just shy of my heart has had to be kept dry and free from inefection at all times- meaning a cling filmed arm extended out of the bath, learning to roll over in bed carefully and no rock climbing or going ape shit on the monkey bars. I joke, but it will be nice to get my arm back. 
On the surgery front, here's what I know:

My double mastectomy and reconstruction will take place in the one operation and I've been given three choices of reconstruction to mull over. I've also got a surgery date pencilled in and it's looking likely I may not need radiotherapy due to the fact my lymphs were normal-although this will be confirmed after the nearest lymph node is removed and biopsied.

So Spring is bringing new life. Even though i'm about to go into hibernation for the last time- how many times can I mention it's the last- I am so hopeful for the future and making plans.
Look out world,  i'm coming to get you soon enough.

Friday, 25 March 2016

How To Deal With The Hidden Costs of Cancer

I'm writing this while relaxing in the sun. It doesn't escape me at all that this week marks five months since I was diagnosed with Triple Negative Breast Cancer  and how dark those early days were.
 As a single mum to two children,  my thoughts rarely, if ever, turned to how I felt but instead focused on survival for them.  I had only just found a part-time job that offered the hours that suited our family of three when I found my lump,  and my diagnosis meant my employer replaced me because with treatment I wouldnt be able to carry out my job. Simply put, I got cancer and lost my job in the same week.
While trying to take on board how a gruelling treatment plan would impact on all our lives,  I also had to face up to being in financial crisis because I didn't have enough money coming in to cover day-to-day living,  let alone the extra costs that come with sickness. 
In those early days my emotions could range across the spectrum  of high spirits to deep lows within an afternoon and it was in a particularly low point I took to this blog and poured out my despair. I've always prided myself on being independent and never asking for help but that particular entry reads like the cries of a wounded animal. 
It's thanks to that blog entry I have learnt so much about the help that's out there for people like me and now I want to share it with you. I still remember not knowing where to begin to get help and how terrifying that felt. This isn't a definitive list of the only support available,  it's purely a list of the services I have found useful and I plan to add to it as time goes on. It might just offer someone else a good starting point should they find themselves in darker days.

Macmillan- A national charity which doesn't only provide nurses but a wealth of free booklets with topics ranging from how to cope with hair loss, chemotherapy,  information on different cancers and also a free cook book.  The helpline can also provide general advice on treatment and more in depth advice on financial issues, how to get help with utility costs and also about applied for a grant  to help with living costs. 

Employment and Support Allowance - Formerly referred to as Disability Benefit and available to those unabe to work due to a serious health condition. After three months, claimants can receive an enhanced payment if they meet certain criteria, such as going through chemo. More information available from Department of Work and Pensions. 

PIP Allowance- A benefit available for those whose illness /disability impacts on their daily lives to such an extent they require assistance, which  may mean from a carer or in terms of needing a blue badge.  You will need a health professional to fill in the paperwork with you. Further information available from Department of Work and Pensions. 

Willow- A national charity that provides special days out for people with serious health conditions. A healthcare professional will need to support your application and the charity is only able to offer a  number of days out per year.

Look Good, Feel Better- Helping teens and women with the physical effects of cancer, the beauty industry has come together to provide free workshops which show you how to combat chemo redness,  draw on realistic brows and disguise lost lashes.  Attendees also receive a makeup bag stocked with branded makeup matching their skin tone.  

For those local to Tunbridge Wells, The Pickering Cancer Drop-In Centre is an absolute must.  The centre provides a friendly ear, a support network, free complimentary therapies and counselling for cancer people and their families. 

If you are in debt and are going to struggle with making repayments while receiving treatment,  make your creditors aware of your diagnosis. The Money Advice Service can provide a wealth of information and Stepchange,  the national debt charity, can help you with budgeting, finding the best solution to help you getting out of debt and most importantly managing that solution for you without adding on fees like debt consolidation agencies.
I used West Kent Debt Advice, a charity local to me which was able to offer the same services as Step change but with the added benefit of offering face to face contact.

As I mentioned earlier,  I plan to add to this list as I go and apologies if I have left anyone off at the moment- it's nothing personal but cloudy chemo brain making me forgetful. 

Wednesday, 23 March 2016

Adrian!

If you read yesterday's post and thought I felt like this picture, you would be right:

And as I trudged into the hospital today, I felt every bit a husk. On top of that I felt fed up with myself, not just because i've reverted back to the sad beanie look and given up on any attempt to make myself look nice but also for letting the side down.  When I started this blog it was all upbeat and being positive to spite the cancer,  now I just moan. 
My favourite chemo nurse was waiting for me and it was him I first told I wasn't doing any more chemo.  "You have to finish it because if anything happens later on down the line and you didn't do it, who will you blame? Come to your last one and you will know you have fihushed it" he said. He had me on that one but as I then made my way along to see the oncologist,  the same thought was back. I cannot do any more.  Enough. 
It was a simple "How are you feeling?" that sparked a good old snot cry. 
I was straight in there with asking if I could sit out the final round.  It turns out there's a lot of science to back up why there are six rounds, so no passes. But the good news,  and at this stage it's enough to get me to go through with it,  is that having been on the highest dose of the hardest combo, the chemo has done it's job for the surgery. This last round will just be a mop up operation for any last rogues hanging about and because of that - they can half the dose.  So i'm summing up the last of my strength to get up off the floor and give it a knockdown punch. As well as feeling like one of the unfortunate souls from The Little Mermaid,  I guess I also feel a little like this today too:

Tuesday, 22 March 2016

Out for the count

The referee is counting, he's reaching high numbers and this time I'm down. I'm done.
I came through the first four rounds of chemo with only glancing blows and my spirit in tact. I was doing it, I still got to live a life largely uneffected by treatment nd in good weeks I was able to be mummy to my girls.
But this fifth round has got me battle weary and for the first time since being told it was cancer I feel very ill. The walk to my daughters school- less than five minutes on foot- physically hurt yesterday and once the girls are out the door in the morning, it's back to bed and to sleep for me until they are home.
I think what  helped get me through the previous rounds is a spell of time inbetween each where I've felt normal. This time though I've not been as lucky and as well as feeling rough I'm miserable and hiding from the world.
I can't hear 'you've only got one to go' or 'you must feel so relieved' or similar (phrases I admittedly would also say to someone else) because the positivity feels so abrasively at odds with how I am right now.
It's not you, it's me and I need to sit out in my quiet corner until I can do the world again.
I have an appointment with my Oncologist tomorrow and I'm hoping above all else I can persuade her to let me off the final round. I don't have another one in me. I'm out.




Saturday, 19 March 2016

I'm Dansking, who's asking?

I spent this morning in Copenhagen.

 It came about after I found a decent, free language app about a week ago and, inspired by my love of all things Scandinavian, I have been learning Danish everyday since. I'm a long way off fluency, the app itself tells me I am only 2% mastered but I've always found languages exciting and intriguing.
Foreign languages are more than just a code which needs deciphering, they offer a wealth of untapped potential. The otherworldly sounds, letters and punctuation entice the mind to think of all the places they are spoken, the sights and sounds of memories yet unlived, smells of cooking and sun dusty streets. Each new word a story.

While my middle school friends swooned over Take That (the first time round), I was captivated by Ace of Base. They came from somewhere so much more mysterious than the usual offerings on Top of The Pops and the only clues I had to go on in the age before the internet was a Collins Atlas to see where Scandinavia was and an Abba cassette tape my brother gave me when I told him about my newfound fascination.For hours, I would sit in the darkness of my parents dining room with either Ace of Base or Abba playing in my Walkman, imagining what it would be like when I went there as a proper grown up at 18. (I thought I would have my own house and car and probably be married by then because 18 was really old and sensible).

As the years went by, I kept a love for languages but my love of mischief won and I stopped doing anything at school. Like showing up. Somehow I managed to pass all my GCSEs without any revision or handing in any coursework. None at all. My lowest grade was a D in Drama which I secured by not turning up for one of the two exams. Despite my results, the Grammar School I went to seized its opportunity to cut loose and didn't allow me back for Sixth Form.  I had no idea what I was going to do but my parents were certain I wasn't going to sit around at home and insisted I went out to work.

So I became Dental Nurse and very soon realised I knew nothing about how the real world worked and that I hated people's mouths. Thankfully our town had two grammar schools girls could go to and so I mounted a letter and phone call campaign for a whole year until the other took me in to do A levels. It was there I once again became fascinated with language, reading and learning in general. It's thanks to that school I went abroad for the first time and saw the land of the Myths firsthand.

Anyway, I've digressed. Since my days of flipping through the Collins Atlas and imagining all the places I would see as a very grown up grown up with a proper grown up job and a house and a car, I've been fortunate enough to have travelled a little bit. But never longhaul and never to Scandinavia.

So this morning as I laid in bed feeling awful for yet another day with this silly chest infection, I took myself to Copenhagen, courtesy of the internet. I have been on virtual tours, watched sightseeing videos on YouTube, everything and anything I could to get my fix. Then this afternoon I explored one of my favourite pondering sites, BBCiWonder because nothing distracts my mind better than big ideas. I followed it up with a free online course in scriptwriting and I can tell you that despite feeling ill I feel really happy.

I've decided I'm going to travel anywhere in the world I want to while I'm resting up and who knows,  I might just make it there in real life one day, complete with dog-eared phrase book in hand.

Wednesday, 16 March 2016

You Had One Job!

Oh FFS Cancer,  you had one job and you're screwing it up. This isn't 'an open letter to my cancer' because a) that  concept has been done to death, b) there's something incredibly twatty about writing letters to inanimate objects or total strangers who aren't going to read them a la 'letter to the man who looked at me funny on the train', and c) I flatly refuse to make something that didn't do its job properly so important. The only mutants worth honouring in my book are Leonardo,  Michealangelo, Donatello or Raphael. If you're not the ninja turtle type of mutant you get no recognition with me.
But up until now, me and the chest bogey had a deal whereby it was caught red handed, stopped in its tracks and I felt a bit grotty but was coming up with new disguises which I like to refer to as Cancer Chic.  There was the cheating phase,  where I hadn't started treatment yet but told people I had cancer just to get the 'but you look so well's'- gotta take your compliments wherever you can get 'em,  then there was the Starlet Scarf phase where I covered my baldness in a scarf and full on 'she's got cancer' uniform, Sad Beanie phase where I hid without makeup under a beanie ALL THE TIME even in bed and nearly in the bath, glam makeup and wig phase,  and the latest look (pictured) which is a mix of the last two- undercover glam, which arose out of necessity because having no lashes is quite frankly mental on your eyes and I only need step put of the house for them to stream uncontrollably. It streaks the makeup and i'm scared it will matt the wig.  Neither is a good look.

So anyway, there I was being successfully vacuous  and treating cancer like a detox and makeover scheme when it decided to throw me under the bus. Again
First there was the news my pulse was high - a normal at rest pulse is about 70bpm. At chemo last week mine was 110 and when it was measured in an ECG this week it's at 121bpm. I am now part of an exclusive group who can feel their pulse in their eyeballs.   I just wish I was musical because I'm sure it would serve some sort of use to me then but at the moment it's quite annoying. I'm waiting to hear from my oncologist what it means for my treatment as it may change things.
Secondly, it turns out when chemo nurses run through the signs of an infection  they're not just doing a mandatory safety notice and alerting you to your nearest loo and what to do if a fire alarm goes off. It turns out infections can happen. They do happen and one has happened to me. So, so close to getting through chemo without one too godammit.
So here I am feeling like i've got the flu on top of feeling like i've got the flu and making arrangements for the girls over the next couple of days with the upshot being an extra weekend at their dad's so I can rest up.
I think i'm a bit put out with having to feel really quite poorly- it's a huge inconvenience and a bit of a low blow that as well as looking like a crash test dummy I have been made to feel like one too. And that nasty cancer pulled my hair out and made me cry. Let me tell you friends that crying is not the same several cycles of chemo in.  Crying without lashes is instant blindness with tears having nowhere to go and don't get me started on what happens if you're a snotty cryer- basically no nasal hair means no flow control- cry and splat, cry and splat....
But don't read any of that and think i'm sat here feeling sad. I'm not. I'm just a bit peaky and feeling incredibly lucky for all the wonderful people in my life. There's still a lot to be grateful for.
How's this for starters 'an open letter to my cancer (cringe cringe cringe),
Dear Cancer,  you're not worth it.

Friday, 11 March 2016

High Five, Everybody

And that,  ladies and gentlemen is how five cycles of chemo are done. It turns out the hospital gave me the wrong appointment and were waiting for me first thing,  whereas I had it written down for the afternoon. A little bit of reshuffling later and I was in, having my second cycle of Docetaxel and thankfully again without the allergic reaction I have feared all along.  I do however have to go back next week for an ECG as my my pulse rate has crept up since having chemo but let's not forget the end is in sight. I think So Solid Crew is even going to make a lesser known comeback record - there's only 21 days to go- only 21 days til my final chemo and in less time than that i'll have some surgery information and an idea on whether I will be having radiotherapy.  Again,  the end is in sight.  In other news i'm hugely excited to say i've been involved with a story with BBC Radio Kent and my miracle centre,  Pickering Cancer Drop-In Centre.  I can't go in to details but the story is set to feature at some point next week- i'll let you know more when I do!


Tuesday, 8 March 2016

A Lump....And A Half

Back to the start. This morning I found myself sat in the same seat, in the same waiting room I was in four months  ago when I felt a bit embarrassed for making a fuss over a bit of a lumpy boob. That morning I was more worried about annoying my boss by taking the time off work for the appointment than i waa about the possibility of cancer. Cancer happened in another place, in another life and I was thinking about getting back to mine once all the tests to be better safe than sorry were done.
Four cycles of chemotherapy later,  I waited to find out what the lump has been upto by way of an ultrasound.  It felt like some macabre parents evening where I was about to see how my tumour was progressing.  It never occurred to me that the main reason for the scan today was to see if it was responding to chemotherapy. I just assumed that was a given  so it stopped me in my tracks when the doctor said that was why I was there.
Here's what I know.  The original size of the lump /tumour/growth  was 22mm. Today it measures 1.3 mm.  It has responded to chemotherapy and even with my limited maths skills I understand it's almost halved.
Yes, I know. Great news.
Except I feel disappointed because I was hoping it had disappeared and I would be let off having any more chemo.  And I feel guilty because at least I have responded to chemotherapy as there's not so many treatment options for triple negative breast cancer.
Yet here I am feeling deflated and ungrateful while people tell me I must be pleased or I must feel relieved or it must make me ready to face the final two cycles. I don't feel determined.  I feel frustrated   because it's out of my hands.  The whole world talks about people fighting a cancer battle but in truth i'm not fighting. I'm accepting and living.
I wish I could fight it. I wish for the first time in my life I could have a real fight,  to offer my lump outside and have a proper playground scrap.  Nearly halved? That wouldn't cut it. I'm not a fighter but on this one,  if I could actually fight my lump I would go primal and beat it to a pulpy death. Instead, there's no trading blows.  Just living in shorter timeframes than I did pre-cancer.  Today, this week, this cycle,  surgery have replaced next month,  next year, one day,  when i'm older as points of reference.
I no longer feel like my time is guaranteed but before I sound completely depressing,  i'm banking on being here a while yet. This week i've started to work on my garden and I very much intend to be here to see it bloom this summer.


Friday, 4 March 2016

Look Good, Feel Better

Mirror, Mirror on the wall, what the hell IS that?

It seems my reflection and I have had a big falling out. Gone for the most part are my brows and lashes, my skin has become the new and exclusive tone of chemo grey and i've been gaining weight which is 'good' for treatment but bad for my self -esteem. In short,  I look like i've got cancer which is quite frankly the final straw in this whole charade. You see, i'm at peace with HAVING cancer  (as long as it's a temporary arrangement), and DOING cancer with all the treatment but LOOKING like I have cancer?  No thanks. I didn't sign up for that.

At the start of this week I was virtually in hiding and I thank the winter weather for gracing me with the opportunity to pull my hat down and scarf up. I think I had got it down to not much more of an inch of me being on display.  If I had found full on stealth combat gear in my wardrobe I would have opted for that and I had begun shuffling with my head down- in part due to achey feet from the docetaxel  but also due to a full on non-verbal apology for my appearance.   I was looking like this when I waliked in to the Look Good, Feel Better course I had booked myself into months ago when I thought I might need a pick me up around this stage.  Nice one, me.

Look Good, Feel Better is a charity run by the beauty industry and women undergoing treatment for cancer can attend a session with beauty advisors and be shown how to apply makeup when they're  suffering the effects of chemo.  Attendees also receive a makeup bag full of products worth about £250  and if like me you love make-up, it's a massive treat, even more so that it's entirely free.

There were only four of us on the course that day but I noticed an interesting thing. Each of us arrived with heads bowed, chatty but subdued.  As the two hours unfolded and we grabbed back a bit of our selves we all had changed.  There was a spark back in our eyes, more smiles and we walked out of the room  bolder than when we arrived.  I'm not saying one slick of lipstick can solve your problems but in my case it makes me feel better prepared to face them.

So here's the new me....looking alrightish and feeling better for it.

Monday, 29 February 2016

Little Helpers, Big Help

"How are the girls coping with it all?"
It's the question  I am probably asked more than anything else and the one which brings the biggest smile to my face.  You see, my girls are positively thriving with all the extra time they're getting with their grandma, aunties, uncles, cousins and friends they wouldn't have had if I wasn't sick.
They may be small but their compassion for others is astounding.  Just this morning I was woken by both girls planting kisses on my cheeks, followed by Child 2 peeling back the duvet and attempting to put my slippers on my feet. Child 1 brought my dressing gown and Child 2 was back -trying to force my beanie hat over my head. By the time I had made it down the stairs, Child 1  had opened the curtains.
"We want to help you get better,  Mummy" they said.
I'm losing my eye furniture now  (brows and lashes) but in four months my adaptable children have gone from wanting me to wear a Taylor Swift wig so no one laughs at me to not caring one bit about the way I look as long as I keep being mummy. I couldn't be prouder.
You might remember I mentioned before about not wanting to write them a journal for the future because it would never be able to cover everything? Well, last week I had a light bulb moment and it's just so very right for us.  I've begun collecting my favourite books at different ages as a mummy library. It's a way of  being able to share so many more thoughts,  feelings and experiences with the girls as they grow.  Whether or not I will be able to enjoy my library with the girls is out of my hands but this way I will be with them in so many different lives, times and places our adventure together will never end.  It's just I might skip ahead a chapter. But for today we're writing our story together and my two brilliant girls are the punctuation,  transforming an ordinary tale into something magical.

Thursday, 25 February 2016

Wishful Thinking

There have been times of late where i've briefly stopped crossing my fingers and silently repeating 'please God let me get better' in favour of more vain pursuits.  I'll momentarily forget what i'm going through and instead think 'please God let me not look see through today' or 'please God, don't take my eyebrows' or the most recurring one 'please God, when this is all over can you arrange it so I look very much like Gigi Hadid?' Not going to lie, i'm desperately hoping the surgeon is kind when doing my reconstruction and less nips and tucks and more chomps and hospital corners me to a body I am too lazy and greedy to achieve alone.
When I first noticed these thoughts creeping in I felt a bit bad. Surely I was wasting wishes on vanity that could be better served on willing myself better.  Wasn't I spending brain power that could be put to navigating financial crisis rather than something so superficial?  But i've been doing both and we need the balance of the weighty and the light stuff to make a good life. 
On the financial side of things i'm waiting on news from my ESA application  (formerly disability allowance) and I have applied for a one off grant from Macmillan to help with living costs.  I'm using the money that's been raised so far to cover Child 2's childcare for the rest of the school year. The debt is still there and isn't going to go away but i'm hoping to fight off bankruptcy by explaining my situation and making minimal payments to each creditor.  I am also looking in to reduced utility bills as apparently there is some help available for people with serious illnesses.  It's not a completely mapped out plan but it's a first stepping stone rather than being confronted with a looming brick wall.
Now for the beauty bits.  I've learned of late a bald head and a pale face are surprisingly useful tools in securing samples from beauty counters. I don't feel too bad for using these unexpected 'assets' because it's stuff that was always intended to be given away for free and it's helped me build a box of pick me ups I can go to on an off day. Something as small as a new hand cream can help really make a big difference when every bit of you feels like it's passed its use by date. 
And there are lots of days of feeling off lately. Having pretty much sailed through the first three rounds of chemo, the fourth has been a rougher tide. Before cancer, T was the sound of lovely things- my favourite drink, the thought of afternoon tea at a swanky hotel, teeing off for golf but almost a week after my first round of T I am laid low, living from painkiller to painkiller,  slurping pineapple juice for my swollen throat, being all kinds of grumpy and sleeping.  Sometimes I sleep just to get away from my own grumpy thoughts. I don't think it helps much that one of my side effects has been really sore ears and i'm sensitive to the smallest noise. Talking on the phone is uncomfortable and two noises happening around me at the same time is unbearable .  
I'm holding our now until my ultrasound scan on Tuesday 8 March which is going to reveal what the lump has been up to.

Saturday, 20 February 2016

T minus 3

Thursday was the start of Docetaxol chemo and it surprised me how much the switch was playing on my mind before the event.  I think somewhere I had got used to my FEC groove of sickness, sleep, ulcers and aches and had a reached a point where I didn't want to change. Not least of all to a drug routinely described as having a 'bad press' because of the possibility of an allergic reaction when having it and the flu like symptoms it brings.
I won't lie. I cried as it was administered  because I was so nervous about having a reaction and I don't think I took my eye off the drip until the last drop dripped.  Back in the safe zone. Four down,  only two to go.
This time there's no sicknesses,  the tiredness is stronger than it was on FEC, the ulcers are setting in but there's no signs of the aches as yet. Apparently they will come.   For now it's time to rest.

Thursday, 18 February 2016

Come On Barbie, Let's Go Party

Do you remember the first time you ever felt joy? For me it came about when one of my sisters had the very same Barbie pictured here when we were growing up. Sometimes she would leave it unattended long enough for me to play with, to imagine the magical event Barbie was going to, to think how special it must feel to be a glamorous lady at a ball. And the very best part about Barbie's dress?  The stars on the skirt glowed in the dark if you held it up to a light bulb long enough. Oh,  how Barbie must have been the envy of all her friends in that lavish velvet and nylon ensemble. Those rare glimpses into pretend elegance were heightened by the risk factor of an older sister discovering me playing with one of her toys and a sibling punishment being served.
I know it's a bit weird that i'm in my thirties and I love Barbie still. I think it's in part because as a child of the eighties,  I grew up enchanted by films of cheerleaders,  milkshakes,  crimped hair, and thinking i'd made it in life if I got chosen to tour the kitchen/freezer at a McDonald's kids party.
 Barbie lived that dream and I thought of her today as I walked back from coffee with a friend in town. The sun was shining, and the air was crisp but under my bobble hat I was sweltering with another hot flush.  I'd been telling my friend how more challenging than my spontaneous attempts to melt was the mood swings of out of the blue, irrational PMT like rages where I can be annoyed by nothing much but still want to bite the perceived perpetrator. Yes, I mean actually bite. Yes, I am well aware I am lucky for the time I live in and most certainly would have been institutionalised for being hysterical had I been born a hundred years or more ago. What a time to be alive.
While i'll always be less conventional than my first idol,  I love her all the same and quite often will still be playing with the girls collection long after they have abandoned the game. So with that in mind i've decided to celebrate our birthdays-we're all in the same week-with a Barbie and Ken fancy dress party. Who's in? And as it's not til August  I promise I will be less bitey more Barbie by then.

Tuesday, 16 February 2016

Time for T

It's nearly time to head home and face reality, namely round four of chemo. This time it's a game changer- a new drug, Docetaxol or T to those in the circuit, a new set of side effects....the unknown. At this point in treatment, I know I am not alone in saying its a big deal to shift onto something new. It's akin to taking a bath in the midst of a bout of Flu. You know it will make you feel better but the last thing you want to do is strip off and feel the cold air ache your bones. Now don't go getting any ideas about chemo being given to you in the nude. I was simply giving you an example of vulnerability you can relate to.

Having not been home on Sunday I  expect to find a floundering postman outside the door, crippled by the weight of his cargo. I will help him up, offer him tea, and we will work together to push the front door against the tide of admiring cards inside.....
But back in the real world the time away from routine has been largely useful in offering a mental pause, time to reflect and plan rather than solely reacting to life. I've made some big decisions and the time is coming to turn thoughts into deeds. Some are private, yes, friends, I am finally getting to grips with this whole over sharing thing, but some are simple life changes such as committing to clean eating, yoga at least twice a week, working in a realistic capacity and turning the tide on bankruptcy.

 But if you thought for a moment the fates were allowing me some time to bolster myself with a 'go girl' or similar cheesy and cringe mental state, fear not. Ladies and gentlemen I bring forth the hilarious bluntness of my niece and nephew. On the first day of my visit, I met them while wearing my wig as i wasn't sure what they had been told, if anything.
"I know why you're wearing that wig," says my niece, fixing me in a death stare. "It's because you've got C-A-N-C-E-R." She elongates the word to ensure it has maximum dramatic impact, asks me why I have C-A-N-C-E-R like i've been careless, and if I'm going to get better. On the second day of meeting up with them, and by now quite certain they were underwhelmed by my previous wigishness, I settled on a silk scarf look (all the while lying to myself I am as chic as Kylie Minogue). I needn't have bothered. I thought I got away with it. We wandered around the shops for a good hour and no one talked of anything other than the usual pleasantries. It turns out they were waiting for a more captive audience. On sitting down for lunch in a busy pub, my niece says very loudly, "why have you got that scarf on your head? You look like a pirate. You look silly and everyone in here will be looking at you and know you've got C-A-N-C-E-R."
My nephew, who  up until this point has remained mute on the subject, joins in. "Yeah, you do. People with cancer always wear scarves like that."
"But I have got Cancer," I say. "Why does it matter if people know that?"
They're not done with me yet. "What do you do for a job, Aunty Marianne?"
"Well,I don't work at the moment because.... (my niece jumps in with "because you've got C-A-N-C-E-R")....because I'm sick"
"But what did you do before?" Asks my nephew, who likes an answer.
"I write stuff," I say, thinking this was vaguely true once but seems like a long time ago now but thank god they're kids and don't know....
"That's not a real job," they say almost in unison and with vague confusion and disgust.
"no," I say quietly, "you're probably right."
I'm the youngest of four sisters but the cheeky two wouldn't let me go yesterday without informing me they think I don't look like the youngest. 
So it's time to grow up. To make plans for when I am better including getting a proper job. This in turn brings with it a new set of challenges. Such as learning not to say "for Christi's sake, couldn't this have been an email?", learning how to speak one's mind professionally rather than answering "what do you make of this?" With "it's a f@cking waste of time," and absolutely not wrapping up the bosses desk and its contents with Xmas paper when he insists on keeping you at work over the holiday period despite all the people you trade with being closed.
I took an online career matching test and it came up with marine commando. I can't even swim and that's not the only reason I am not suited to that role. 
So it's really time to grow up and i haven't got a clue how to start.




Sunday, 14 February 2016

Ballsy Comes Back Swinging.....

..Just so we're all clear,  that doesn't relate to a lifestyle choice so keep the keys from the fruit bowl would you?
After the other day's blug,  like a blog but more blubby, i'm back.
I think  i'm just starting to get my head around the fact it's not just The Cancer, it's the menopause  (albeit temporarily) and the joys of hot flushes and PMT on speed.
At times it can feel overwhelming, particularly with the extra expense being sick brings,  and pretty much as though I must have done something really, really, really bad for all this, all at the same time.
I think at times i've been a bit guilty,  especially of late, of accepting it all as something I deserve and i have accepted it all. Unquestioningly. Until today. 
Dear Cancer,
 you're not taking me and you can tell your friend bankruptcy to do one too. As soon as I am back home,  i'm going to beat both of you into submission.  Yes, I can't work right now. Not for someone else.. .but i'm pretty certain I can fit some freelancing in and I intend to. I refuse to accept either of you for the girls and me.  No more looking at the past and feeling sad, no more looking at the present and feeling frustrated.  It's time to start living as though tomorrow and the days beyond it are still a certainty and putting in measures for a happy life because you can never move on properly without first letting everything go.  *Except your inhibitions and your knicker elastic in polite company.  Both of these absolutely must be retained at all times. 
It's time to move forward, to make some big decisions and proactively create the future.
For a moment there,  I mistakenly thought I was like Sampson and all my power was in my hair.  Thankfully not. 



Thursday, 11 February 2016

Well, you did ask

It's one of those days today. Despite the rare appearance of sunshine i'm living under a cloud. It's been a day of dark thoughts,  of feeling poorly and talking about finances, which I try not to do even on a good day.
I don't recognise the sick looking woman in the mirror and I don't recognise the weary and bitter voice inside my brain.  I now understand why it's always referred to as a cancer 'battle'.
I 'm grouchy.  I don't want to do this any more without a more concrete motivation than 'hoping' and 'aiming' to cure.
I'd like to stop regretting all the time I have wasted, all the bad decisions i've ever made and be afforded once more the naivety of life when cancer was uncharted territory and when I felt 32 and not elderly.
I would very much like to stop thinking about if this is a punishment and  not be haunted of visions of my girls growing up without me,  of knowing the hurt they could feel and that I won't be there to soothe them.
It's thoughts of writing them a diary of me 'just in case' but knowing it will always be imperfect.  That who knows what I will think when I am forty, or fifty and more and how life will have changed me and them.  I will never be able to cover every eventuality. There could be a time when the lines on the page are outnumbered by the years my girls have without me. How on earth do you ever come to terms with that?
It's on days like this, days where I kiss my girls too many times,  grip their hands tighter,  stare longer into their eyes that I have a stinking attitude towards all of it. Of all the non days during treatment  that are wasted from side effects in the hope of better days ahead.
It's sitting in the company of family and friends and feeling like you are about to lose control with the terror of it all but at the same time knowing you absolutely can't go down that road because it doesn't end in resolution.
On top of all that it's the talk of finances and how cancer is expensive and I don't want it. None of us do.  It's signing off on a debt relief order  - a mini bankruptcy  and thinking how meaningless all the money in the world is right now.
I'm ill today and I've had to send the girls off for half-term a day early because I haven't got the strength in me to be mummy at the moment and it breaks my heart.
And here I am pouring it all out to you.  For the world to see. Perhaps to judge or think these are thoughts that should be handled privately. But a cancer battle isn't all laughing the face of adversity. Quite often it's spontaneous plunges of terror and living with a nightmare looming  in your peripheral vision.  I'm sorry for over sharing. But trust me on this.  Since cancer,  I don't believe in social conventions one bit.

Tuesday, 9 February 2016

Crabby Old Cancer

If a picture truly can tell 1000 words,  the following image sums up my life in this moment perfectly:

I don't know how to not be tired right now. I can't remember regular words or how to spell and more and more regularly i'm mispronouncing simple things and I drew a mental blank this morning when I had to fill in a form for Child 1. What DID I call that baby?!

The back ache has been replaced with a sore mouth and teeth so it's back to owning a baby tooth brush for me as regular grown up brushes are too abrasive.

So rather than be a crabby old moaner and blog about how crabby and moany I am, i've decidea to step away* from the keyboard momentarily. * clearly sidling sideways in authentic crab style.

Fear not, while I am away from the keyboard I will be practising this as a daily ritual :


I think we could all take something from it sometimes. Fear not, if you are planning on getting in touch, I am in good spirits.  I like to keep the bad mood for myself. I'm shellfish like that.


Sunday, 7 February 2016

Not Enough Hours In The Day

By the time I set foot downstairs this morning,  Child 1 had already been up and had set to feeding, watering and giving fresh bedding to her rabbit babies. They were hopping about an assault course she had laid out by the time I made breakfast. She's one organised little girl.
Child 2 padded down shortly after and immediately set about being a bunny.  Albeit a more clumsy,  mischievous version and more bitey.
As you can no doubt imagine,  being laid low yesterday meant a lot of tidying today and seeing as the girls have proved once again to be a popular holiday destination for touring nit colonies,  I had to treat both their manes before getting the house in order. Cue disappointment from both critter hosts who were looking forward to going to church but missed  out because I couldn't do all three things at once.
We were then off to a surprise party for one of Child 1's classmates and had a fantastic time. Child 1 won a prize, a chcool ate egg, for dancing and immediately shared her spoils with her younger sister.  Child 2 also won a prize, pushed her older sister away and ran to scoff it in solitude.
This evening passed by in a blur and before I knew it it was time for bed and due to a mounting list of jobs to be done before morning,  I put the girls to bed without a story. It's a rare occurrence in our house for this to happen but I always feel heartbroken when it does, expecially as I was tired and crabby so it was a double whammy of no story and me moaning about the stateof their bedroom.
I've since spent the rest of the evening plotting how I will make it up to them tomorrow as i'm already missing them in advance of half-term week, when they'll be off to their other family and I will be pulled under the fourth wave of chemo.  Thsee next three cycles will be with a drug called Taxotere and with it comes a new set of side effects.  Apparenrly sickness is not such a problem but in place of it comes bone and joint pain.
With that in mind,  and now the bad back has subsided,  I plan to fit in as much fun as I possibly can over the next 10 days. We're having our own pancake factory on Tuesday and as the girls and I have said we will be each others valentines this year,  we're having a candlelit dinner together on Thursday as it's their last night with me until the end of half-term.
I'm even planning a trip to see the family in Dorset next weekend  providing I can swap some hospital appointments  around and find cover for Tog and Dove, who the girls have swiftly nicknamed 'Dog' and 'the nice one '. What they mean by this is that Tog, whose markings look like she's in a glam rock band, has already mastered the art of escaping from her cage, enjoys ransacking the bin with the same fervour as a ravenous fox and will charge at 'the nice one ' looking for a fight.


Saturday, 6 February 2016

What is 'it', exactly?

Last night I started suffering from a pain in my back which is nothing new at this stage in my chemo cycle - check me out, sounding all experienced and things. Except by this morning the pain had intensified to a point where any kind of movement sent a rippling pain up my back and in to my chest.  Ladies,  if you have ever experienced back to back labour,  it was like one or those bad boy contractions. Thankfully the out of hours GP came to visit me at home and prescribed some stronger painkillers and voltarol gel which has clawed back the weekend for the girls and me.  I was extremely fortunate that some wonderful friends came to my rescue and took the girls out for a couple of hours so I could rest up. Anyway,  the visiting GP thinks the pain has been caused by overdoing it rather than anything sinister, which leads me to wonder what 'it' is ? I thought I had been taking it easy and by the look of my house at the moment it seems to agree. That said, the girls have clubbed together their piggy banks and bought a karaoke machine which I absolutely can't wait to get stuck into when they are asleep!  The three of us have been discussing using it to make our own pop video. Watch this space,  I may share the finished result!
Lastly,  I have to admit to you all something a bit naughty I did tonight.
The girls and I were talking over dinner when Child 1 spied dessert and said: "Mummy, I don't think I like meringue."
"What?!," I said incredulously. "Who doesn't like meringue?!"
"I don't think Iike the texture," she continued,  even though I have seen her wolf her way through spoonfuls of it when the mood takes her.
And this is when my evil genius came in to its own.
"You know it's actually the nest of a magic bird from the South Pole, don't you?" I said as child 2,  who at 4 years old is as cunning as the Artful Dodger, and I shared a conspiratorial wink.
"Really?!Are you ACTUALLY being serious?" Child 1 asked me, by this point her eyes wide with amazement.
"Oh yes," I went on, "these are hugely rare. Want to try one?"
Nodding vigorously she began gobbling with renewed vigour.  Between mouthfuls she managed to get out, "this is amazing. I can't believe these are from a magic bird.  I just thought they were made from icing or something but this is so amazing I might cry."
I would have stopped it there.  I already felt a bit guilty for convincing her a mythical creature made her pudding.  But not so, Child 2. She had other ideas.
Sniggering to herself she said, "yep, and do you know mummy met a fairy once?"
Unbelievable.  I don't know who was more shocked but for different reasons.
"Oh.my.goodness, mummy, is this true?"
In for a penny,  in for a pound I say and with Child 2 filling in the gaps, Child 1 went to bed  with a head full of magical dreams.
Me however?  I'm going to bed with one eye permanently open as it seems I have underestimated my youngest child.