Thread by @RenateKriegler

WHY I NEVER POSED THUMBS-UP DURING MY CANCER TREATMENT
and wish the media would stop propagating this.
#TwitterThread #BreastCancerAwarenessMonth #SurvivingBreastCancer

My recent non-curative operation – a boob job, in the place of my mastectomy – and the pain I experienced afterwards, made me think, remember – appreciate – what a journey this has been.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

I realise I have not been honest about how tough it has been. How absolutely terrifying and humiliating the cancer journey gets. I have been guilty of making light of my reality, fooling myself, lying to you.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

NO TWO CANCER JOURNEYS ARE THE SAME.
Here’s mine in a nutshell:
Two years ago, September 2017, I was diagnosed with a huge, advanced and aggressive breast tumour that had already spread into nearby lymph nodes.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

I started on correspondingly aggressive chemotherapy, which did shrink the tumour somewhat and thankfully stopped the spreading.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

As the tumour shrank with each round of chemo, I started to think I'd no longer need a mastectomy, forgetting that I had lots of precancerous changes all over my breast and everything had to go to be sure.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

I refused and cancelled my operation. Then I begged to keep just the skin of my breast, which my surgeon – against his advice and with great effort – kindly did for me, keeping the space with an implant.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

Summer of 2018 was the last stretch of curative treatment: a course of radiotherapy.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

The effects of cancer treatment leave lasting scars – both physically and emotionally – and the maintenance/preventive treatment continues to disrupt one’s life years beyond.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

SO, HERE'S MY TRUTH
– and I apologise in advance, it ain’t pretty:
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

I lost my first friend to cancer when we were just 11. Her mum gave me her ruler which had written on it, “I love Renate. Love is special and sweet.” I still have this ruler.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

I still feel guilty for not being a better friend, doing more, visiting more often.
Even though I did.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

And I was terrified of cancer. But seriously! I would poopoo cancer charity events as over-hyped, and not even set foot in cancer charity shops, even though I love charity shops. There, now you know.
#TwitterThread👇#SurvivingBreastCancer #DarkSecret #BreastCancerAwarenessMonth

HUGE thanks of course to @MacmillanScot and @MaggiesCentres who offered me invaluable mental, emotional and practical support over the past two years!
#TwitterThread👇#SurvivingBreastCancer #LessonLearnt #BreastCancerAwarenessMonth

@MacmillanScot @MaggiesCentres During the summer of 2017 it became apparent to me that something is wrong with my left breast. I kept hoping it might go away and gave myself over to my work on the EIF debut of The Divide.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

@MacmillanScot @MaggiesCentres On my first visit to the breast clinic I didn’t want to know the truth. I literally forgot some of the scary bits the consultants told me – like that I will need a mastectomy.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

My treatment plan was laid out in such a way that it all seemed pretty doable. But of course that’s just on paper.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

Upon my diagnosis I considered all options in detail:
Doing what the experts say, tweaking what the experts say, doing something alternative,
doing nothing.
Dying.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

I seriously considered dying. I felt that as an insignificant citizen, such expensive NHS treatment would be wasted on me.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

A few kind souls urged me to think otherwise. But subconsciously I still expected of myself to step up then and fulfil some sort of divine purpose – a bit of a burden under the circumstances.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

From the day of my diagnosis I became my own PA, having to arrange, remember and turn up to a string of appointments. Add to that a daily regime of prescribed + herbal medicines. And doing my own research…
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

Throw in chemo brain, which really is a thing.
I still sometimes can’t recall simple words mid-sentence. It is embarrassing and frustrating.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

The morning of my first chemo I literally (yes, literally) shat myself just before leaving home. I was that scared.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth
#Chemo

I trimmed and straightened my hair before starting chemo and used the cold cap – a huge privilege to have freely available – in an attempt to save my long hair.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth
#Chemo #Coldcap #Brainfreeze

You guessed it: Within a week, some hair started to fall and formed a huge knot in my long curls. I had to let my hair go. John cut off the knot and finished off with clippers, while I sobbed.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

I had really long thick hair at the time, having grown it from quite short over 7 years. (As a kid, I had nightmares that someone comes in the night and cuts my hair off.)
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

In the end I really enjoyed my bald head. It was very convenient and I thought it looked pretty cool too! I rocked that look for my 40th birthday. (I don’t like those chemo caps one bit. Sorry!)
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

My cancer was a teeny bit sore, but the treatment was much much worse. Hair loss is almost nothing compared with everything else.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

Chemo floored me.
Where I was used to walking everywhere and sometimes all day, I couldn’t even walk to the post office just a few yards from home.
Going up the stairs was a mission.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth #Chemo

Going on my hunches to look in kitchen cupboards was out of the question. I wouldn’t be able to get up again.
I once called John on the mobile to come help me out of the bath as I simply couldn’t lift my bum.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

I was nauseous, I lost my sense of taste, I lost the feeling in my fingers and toes, I saw spots, I looked like shit. Everything was shit.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth #Chemo

During chemo, I had to inject myself (yes myself) regularly with Filgrastim to encourage my bone marrow to produce new white blood cells.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

This process (bone marrow activation, not the injection) is insanely sore – confirmed by more than one fellow patient to be worse than childbirth. (I wouldn’t know - not ever now that I had breast cancer.)
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

So soon I was in hospital and on morphine. Which causes such bad constipation that I avoided it as much as possible!
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

Yes, constipation has been a way of life ever since. Few things satisfy me as much as a good shit without any intervention nowadays. (I did warn you.)
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

While on chemo, if one’s temperature goes up, you get to go to hospital for IV antibiotics. I ended up staying in hospital lots. About a month in total.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

Don’t get me wrong, everybody’s lovely, but staying in hospital is mostly hell. You get no sleep! There’s always something clanging, clattering, banging, beeping. Right through the night. I am not exaggerating.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

IV treatment is a pain in the arse. Cannulation can be sore enough, but once you get hooked up, you can’t take off or put on a top, and you have to take the whole damn thing with you when you go to the toilet…
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

You got to take great care not to trip over your line or rip it out of your arm! And fat chance you will fall asleep with the line hanging out of you and the gurgles and beeps from the pump.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

Hospital food baffles me. It’s not untasty. But my God it’s not what I would call healthy. The usual plates don’t even attempt to be nutritionally balanced! This is what we feed sick people?!
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

I mean, what if a bad diet actually causes cancer? There’s no talk ever about what causes cancer. There’s some polite advice not to smoke and to drink responsibly – but I’m not a culprit…
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

I am a sugar junky though! What if sugar caused my cancer? Or maybe it is all the hormones in our milk and dairy? Or was it the few days I worked at a nuclear accelerator?
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

One thing they did determine from my very first biopsy is that my cancer thrives on estrogen. Yep, my cancer was eating estrogen – a hormone produced naturally by my healthy womanly body. What the fuck?!
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

So ever since, I am getting monthly implants to keep my ovaries asleep so as not to produce more estrogen. Which means I have been in menopause since age 39 – with all the shit that brings about:
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

hot flushes, anxiety, joint pain, sadness, sagging skin, and – most devastatingly – an uncontrollably expanding waistline. (I used to love my waspy waist.)
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

And vaginal dryness. And difficulty having sex. (Which is different from not wanting sex.) Not helped by having had a mastectomy…
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

I can’t decide whether I want the fake boob left alone or treated like a real boob. Not that it can feel anything, of course. In any event, I usually end up wanting to cry.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

I convinced myself a mastectomy is so easy: Just a simple removal of something on the outside – as opposed to the complex surgery some cancer patients undergo. But I mourn the loss of my breast.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

Then radiotherapy. A super-clinical process. They set up meticulously like some inanimate lab experiment, then everyone leaves the room and it’s just you with this big scary machine.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

It was my left breast, so the rads hit my heart and top of my left lung. (They did do a lot to minimise this!) So I am having to be careful with my heart for the rest of my life.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

To me it wasn't a fight or a battle. More just going through the motions. One day at a time. After deciding to live and accept treatment, it took humility and resignation rather than strength and determination.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

But hard it was. Physically, emotionally, mentally.
And there doesn’t seem to be an end. The disruption of treatments and the fear are your partners for life.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

The people treating and caring for cancer patients in the NHS are incredibly special. They go above and beyond, and they radiate an angelic lovingkindness, often under obviously stressful work conditions.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

The thing is, everyone is so kind at the hospital, that you almost feel guilty to complain about your
journey or something specific, or recall a bad moment later to friends.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

So one soon forgets what hell it has been. Bounce back. Keep really busy and the mind occupied. I
did, until recently after a year’s break, I went back for some surgery.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

And realised I must suffer from PTSD. There are a few triggers: the smell of the shower gel I kept in
my hospital bag, the road into the hospital grounds, sitting in the waiting room at the breast clinic…
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

…a sound produced by our boiler which sounds exactly like the infusion pump drips used in the
hospital, certain items of clothing, certain foods… They make me want to cry and run at the same
time.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth
#PTSD

Another thing that causes me heaps of anguish is feeling guilty about not keeping in touch with
friends and family. I have had so many messages, cards, bunches of flowers and gifts.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

At the beginning I realised I’m not keeping up with thanking people, so I started a list of people to
thank when I am through it all, but very soon I also couldn’t keep up with the list!
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

I am devastated, because I really do appreciate every token of support. I recall specific words, flowers or gifts often and treasure them. It really pulled me through! I guess all I can do is shout out THANK YOU!
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

Then there is updating my nearest and dearest. That’s been tricky. I like to share good news, so I
would hang on and wait for the situation to change –
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

…for my mood to improve, to be discharged from hospital, for the pain to pass…
And so I often just didn’t get back to people. I am sorry!
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

In the universe of cancer, I have made a few new friends.
And lost friends. My dear friend and teacher, Eileen passed away on New Year’s Eve. I still am devastated.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

Eileen walked this path with me with so much gentleness. Especially in the beginning, she held me
and let me cry my eyes out and then helped me “get my house in order”.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

This sort of thing is a great trigger for sorting one’s shit out. Shame I had to wait for cancer to get me
off my arse.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

And for that reason – even though I am writing this to make it clear that it has been hell – I am
grateful for the many positive changes cancer triggered in my life. It has been a great gift in awful disguise.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

I have never been happier and more fulfilled. I mean, who enjoys going to work most days? I do!
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

Sure, I sometimes experience anxiety, but I also got a whole lot braver. There isn’t much left to be
scared of. Not death.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

But I think most cancer survivors will agree the fear of the cancer coming back eats away at us.
Having to face the mill of treatment again is as frightening as ever.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

It shouldn’t take such a dramatic and hugely expensive experience to realise the value of the NHS. But I can now confirm it is priceless and made up of very special people.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth
@NHSMillion #NHSmillion

I had to do a year of monthly jabs which I found out later cost £2000 a pop! Yes, two thousand!
That’s more than I was earning in a month. And not the only treatment I was getting.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth
@NHSMillion #NHSmillion

There is absolutely no way I would have survived cancer without the NHS. Let’s do what we can to
keep it going!
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth
@NHSMillion #NHSmillion

Thank you for your interest in my journey and your loving support.
I am not sharing this to attract further sympathy; it’s just for the sake of the truth.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

I am sorry I have been (still am😳) a rubbish friend, family member and wife. A total bitch at times even. I am SO grateful for everyone hanging in and hanging on. THANK YOU!
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

PS: You know your body better than anyone else. If ANYTHING changes, get it checked! (I couldn’t
feel a lump; it just seemed different, and I felt strange.)
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth

PPS: Do get in touch if you want to talk about your own or a loved one’s cancer diagnosis, or if you
wonder how you could support/cheer up someone with cancer.
#TwitterThread👇#SurvivingBreastCancer #BreastCancerAwarenessMonth