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.

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?

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.

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

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