Tuesday 31 March 2015

The waiting game

Author: Christina B

So it's time to hear "the news".

I'm waiting with my mum in the hospital waiting room, ready to be summoned in to hear the pathology results from the mastectomy surgery I had last month, although I'm dressed like I'm about to go to an audition for X factor. For some unknown reason I thought power dressing in a tight floral midi dress, knee high black heeled boots and a leather/ fur fitted jacket would give me some courage and chutzpah. It hasn't at all and neither has my new Kim Kardashian style hair and face full of war paint. So much for using clothes and make up to get confidence and courage. It really has not worked in my favour today. The Look Good Feel Better cancer session where the beauty therapists told us make up is courage in a bottle was a lie. That day they must have given me faulty fear only make up bottles. For want of a better phrase I'm shitting it.

In the waiting area people are being called through and I'm waiting to hear my name, it's 10 minutes already passed the time I am supposed to be seen and the added waiting time is doing nothing for my nerves.

Fast forward another hour and I'm getting increasingly bored and frustrated. I decide that if I paint my nails (yes I had polish in my handbag) I will get called immediately. I'm thinking it will work a bit like Sod's law. A fresh set of ruby red nails later and nothing, no call or mention.

Another half hour passes and by now my nails are very dry and I still haven't been called in. I'm bored, on the verge of hunger and starting to tire of taking selfies of me and mother dearest.

Finally my name is called and a nurse apologises insincerely for our long wait. We are ushered through and I'm sitting opposite the doctor in no time. "Well Miss B we are pleased to tell you it's good news"he relays. "All of the cancer was removed at the operation, however the grade of cancer was grade 3 rather than grade 2 as we first suspected so we will recommend a course of 6 sessions of chemotherapy."

Boo... Spoilt chick pipes up inside of me. Chemo..... that's shit, I hear her moaning. No hair, no eyebrows, holy shit no lashes, frigging great. Vanity chick pipes in too and between them a whole list of reasons to hate chemo are compiled in a nano second....The scientist chick in me struggles for airtime, if only I can rationalise this. Chemotherapy is used to prevent any stray cells that have the audacity to remain in my body. Belts and braces approach. By having chemo I give my body the best chance of getting fully rid of this beast. Obviously the side effects are undesirable but then again I've been through childbirth and eventually stopped moaning about the horrific birth and awful morning sickness because I gained the precious gift of my son. So if I do the horrid chemo my gift hopefully will be my health. No brainer really.

The doctor must be wondering why I'm not hugging him and rejoicing at the fact that I'm cancer free.

I turn back on the point he made earlier about my grade of cancer. He explains to me that Grade 3 means that the cells are more aggressive and are prone to growing quite fast. I already knew this from my trusty cancer Facebook support group so it was more confirmation. Knowledge really is power. If I didn't find out all these facts I could have walked out of there thinking yeah cancer is gone and I don't want chemo because who wants no hair eyelashes and eyebrows. Instead with the information I know I can make a fully informed choice which means putting up with crappy chemo side effects.

So to summarise my feelings I'm pleased the cancer has left the building but hearing this news feels like finding out you've won the lottery but still need to work six more months in a job you hate and live in a squat before you can get the cheque. "Delayed gratification " that's what my dad would say. If I endure this I can reach my goal.

I guess I just need time to process the information. I thank the doctor and the BCN (breast cancer nurse) and we leave the consultation room.

My mum offers to take me for a slap up meal to celebrate but quite frankly I'm craving the safety and security of my own sofa. So home bound we go and when we get home she gives me the biggest warmest heartfelt mum hug ever. I hold her for ages and get some sparkle from that one hug. Xxxxx

Saturday 28 March 2015

Reflection

Author: Kim F

So I'm sat here on my own, in the dark, reflecting on the last six months. It's been tough. That's one thing that is certain.  

On the 8th October 2014 my life changed forever. My life flashed before my eyes and I instantly thought about my two gorgeous boys having to grow up without me. Very dramatic of me! 
 
I've done the chemotherapy and it was kind to me. Thanks to the wonderful invention of the Cold Cap I was able to keep my hair. This is very important as I was able to look 'normal' to everyone else. And every time I looked in the mirror I saw 'ME'. 
 
I've had to have two surgeries as the first one was unsuccessful.  I am still coming to terms with the loss of my right boob but as soon as it was gone I felt pure relief that Cancer was also gone. 
 
Over the months I have had incredible support from family and friends. There have unfortunately been friends and the occasional family member (they have since rectified this!) that I've hardly heard from which is truly disappointing. But there is a small group of friends that have stuck by me and without them I would have found it extremely hard to keep positive! But I think I've done pretty well to stay so positive. There have been down days but only a few. My wonderful husband has been a rock and for that I thank him. He's been there to hold me when I've had bad thoughts, a bad day or when we've had bad news on my support network. 
 
I still have radiotherapy to go but after that, treatment is done. No drugs to take for 5-10 years. Does that mean I can go back to the life I left behind 6 months ago?? I doubt it. 
I will have one Breast for a minimum of a year so every time I look down I will have a reminder. I will also have the constant paranoia that the Cancer is back....and has spread! This will never go away, it may fade but won't disappear. So I will be living a 'new normal' apparently so other Cancer survivors tell me. 
 
I'm obviously scared of the Cancer coming back but I'm going to try and not let the fear take over my life. I plan to enjoy life with my three favourite boys. Doing things maybe I wouldn't normally do and definitely doing lots of fun things!! 
 
So here's to life and whatever happens, I know I've had a good one! 

Monday 23 March 2015

Storm in a teacup - part 1

Author: Danielle 

It's true that saying "you never know how strong you are, until being strong is your only choice", apparently Bob Marley said it? I've never looked into the ponderings of the man b4 but I may start I think he had quite a few things summed up pretty well and I love a good quote.

In the days leading up to the shit landing on our door, in the actual day or two b4 the sucker punch was blown I'd somehow managed to convince myself wholeheartedly that I was going to be fine. I mean who gets a breast cancer diagnosis at 31 only the poor luvs you see in take a break mags. You read their stories you feel sorry for them you empathise a little as to how devastated you'd be if it was you then you turn the page and some old ladies cat came back home after they thought it was gone forever & the world is good again. But I'd mentally strapped myself in for my Wednesday morning appointment, which is surprising when you consider when I had the biopsy the radiographer said my follow up appointment was too far away & that the results would be back in a week and I'd be contacted with an appointment. 5 days passed & I heard nothing so I rang them, cue nice receptionist lady who would check it out for me. When you are waiting for test results time slows to this weird pace that makes no sense. The days are 48 hours long and the nights 72 hours long. So when she rang me mere seconds later I shit myself! and her words did little to dampen the fear "your test results will go under the review of the multi disciplinary team on Wednesday morning, a member of the team would like to meet with you after. Can you come to the oncology unit for 10am Wednesday" FUCK!!! Oncology means cancer.....right?!?! My biopsy was Monday. I called them Friday. I had to wait till Wednesday.....Wednesday......Wednesday 10am oncology. It became etched in my brain!! I should have been going to pieces, shouldn't I???

One thing I've learned above & beyond anything else is (and I'm going to need boldy caps for this) DON'T GOOGLE. Dr Google is a cruel master. I kid you not Dr Google broken finger nail and you'll find yourself facing certain death after being scared witless by images of half decayed hands. Imagine the fodder you can find when you Dr Google "lump in left breast" and given the extra hours in the day you've suddenly acquired it's a recipe for disaster. Don't do it! I did.....and it got me the grand total of nowhere. When I found the lump it took me a few days to get to Dr Google but I googled hours away. First I got mum to feel it, yup defiantly there. Never had been before, not the last time I checked anyway. I know that for definite! Why, because I would consider myself a good checker b4 all this. In the shower when you're soapy it takes seconds. It's life saving! Another thing I've learned along the way is Breast cancer isn't the easy cancer it's portrayed in the media to be. No cancer is the easy cancer. Once cancer is in your body it seeks & destroys. Having become a member of YBCN I've witnessed first hand just how quick this wretched disease can take someone. And not just post menopausal grans (they actually tend to do much better than us younger ladies on the whole). C was a beautiful vibrant not quite 30 year old, she was fit, she would take part in runs and even in the month before her death with failing eyesight because the shit had made its way into the fluid surrounding her brain she'd purchased a treadmill so that she could still train for an upcoming run to raise money for Macmillan. She's gone just like that within a year. Nice cancer eh! So bloody check your boobs & moobs people!!! Just bloody do it. Anyway I digress. Where was I....oh yeah the lump. Contrary to popular literature on breast cancer I don't advocate the "leave it a month to see if it's hormonal changes" they reckon my cancer was there for about 3 months......3 months & it was already trying to infiltrate my lymphatic system. Just go straight to your doctor. My next step was my gp. Luckily for me I managed to acquire one of the rare as rocking horse shit emergency appointments and it was with my actual gp!! I love her, she's one of the many people I have to thank along the way. If she had decided that it was nothing as I'm only 31 and not long had a baby who knows where we'd be! She could feel it too - "irregular, almost pear shaped and fixed, we'll get a referral to the Breast clinic for you. It's probably nothing but without a scan we won't know for definite" as I got up to dress she spotted something else. An indentation, more like the line left from an ill fitting bra but it didn't match the lines of my bra and come to think of it I've noticed it before in the mornings when I've been getting dressed. A crease, a line, a puckering whatever you want to call it. Certain positions made it worse but it was always there. Ok she said we'll send you off on a two week referral you'll probably receive the appointment within the week. I was handed a red card, an actual red card, call them if you haven't heard by Monday. I did Monday 13th October Breast screening. H's hen do occupied my weekend in between and it was a very welcome distraction. I drank, ate & laughed. We fed the baby cows, we got shit on & we managed to squeeze about 10 of us into a 4 man hot tub essentially emptying the bloody thing & having to call out the hot tub man. I was carefree!! Almost. But to be honest that's the last time I felt normal & I'll treasure the memories & the friends I made from it.

The breast screening unit at the hospital looks like quite a modern unit. There's a big round reception in the middle with chairs on either side. There's literature all over the walls as you'd imagine & the decor is light and airy. But there's a certain sense of forboding and the average age in the waiting room is I'd say over 65. It could do with a radio it's sooo quiet it's deafening. I hate those kind of waiting rooms. They give off an air of calm but you feel anything but. I was called through by a lovely lady in her 50's - she wasn't dressed like a nurse & we chatted along the way, I can't remember what about, down the corridor. M and I (that's the hubby for those that aren't in the know) were taken through to this massive room at one end an examining bench/bed thing & an ultrasound scanner, at the other a desk with about 4 big screens. It probably wasn't massive but the space between M and I at that time (him down by the computer screens & me on the table) felt vast!! Pop your clothes off from the waist up and jump up on the bed. Last time I was next to an ultrasound scanner it was our 20 week scan we'd taken C along to meet her new sibling for the first time and I was surrounded by my little circle of love in a teeny tiny room and it was wonderful. Partly as well because I'd spotted F's meat & two veg on the screen (we were keeping it a surprise) but I knew!! I'd seen it!! And I'd be a mummy to one of each. How amazing is that!! Anyway so I striped off & did as I was told. Turn on to my right raise my left arm up above my head. The doctor scanning me was the lady that had walked me through & there was a nurse in the room as well. She started the scan (& luckily had warmed the jelly) she felt for the lump first then started to scan. It took quite a bit of prodding but there it popped up on the screen all dark and gnarly looking. From Dr Google I knew that we'd be looking at either a cyst, a fatty necrosis, a fibroadenoma or a cancer. I've had quite a few ultrasounds in my time being that I have poly cystic ovarian syndrome - my ovaries used to be scanned to check how cystic they were, I've been fortunate enough to still carry 2 wonderful children even with pcos so I've had my scans with them. This one was by far the worst (and to scan an ovary takes a probe!!! I'll let you digest that a while....) in the time between finding the lump & my referral I'd developed a hardened vein from the lump across the top of my boob almost. The radiographer touched on "mondors disease" (that'll need Dr Google for definite) but said it was rare. She scanned every last inch taking measurements recording blood flow and the like umming & ahhing. We're going to need to take a biopsy. Whoa!! Wait what???? Ok ok ok ok!!! I didn't even have to move they did it there and then. Suddenly I'd gone from having an ultrasound scan to having a local anaesthetic to having a small incision to.......punch!!! The core needle biopsy or punch biopsy is done using a gun like machine that resembles one of those ear piercing machines. Your boob is numb but my god that thing hits you! It doesn't hurt as such it's like getting jabbed in the tit with a biro really hard. She took 3 samples of my boob or should I say lump flesh and labelled them up in a jar. Popped a little stitch in and the whole thing was done before I'd really realised what was happening. Poor M sat at the other end of the room with a look of pure terror on his face, I know how you feel babe!!! They were wonderful I have to say the whole process was done quickly and efficiently no beating around the bush. I was sent on my way with the reassurances of being contacted within a week for the results & to take it easy for a few days & not get the dressings wet for 5 days.

So I suppose this is where the strength & courage comes in. It's said amongst the YBCN sisterhood that waiting for results is the hardest thing to endure.......and it's true because well it's true. The other one is scanxiety when you are waiting on the results of scans and as any cancer patient will tell you it's the scans that tell the stories and they can be pretty plentiful at times. My wait began. I had no answers I was hoping for an "oh it's nothing go home you're fine you drama queen" but as anyone will tell you doctors don't like to reassure you it's nothing if they are pretty sure it's not nothing. They like to be what's become apparent to me as "realistic". That week I have to say I was pretty pathetic. I chatted to my lady G and said if I've got cancer and I'm going to loose my hair I'm going to donate it. To be fair to her she was the only person willing to talk to me about if it turned out to be cancer rather than just telling me to be positive, it's probably nothing and silencing the ramblings going on in my head. I could have done with more of a chance to air my deepest darkest thoughts but she took the lot. Bless her wonderful heart. And it was actually in one said rambling to her that I decided I didn't have cancer I had mondors disease. And in all honesty I think that's the only reason I got through those days, so thanks gorgeous! You saved my brain a lot of mental anguish!!! I'm not strong, I'm not brave or courageous I'm a bloody stupid googling idiot but my idiocy got me through those days so there's a lot to be said for stupidity at times x x


Friday 20 March 2015

The friends that disappear

Author: Anonymous

When everyone knows you have cancer it can be hard to keep up with all the messages, phone calls and emails. Lots of people want to know how you are and what's happening with your treatment. Lots of people tell you to let them know if there's anything they can do to help, but most of the time you probably don't get back to them to ask for anything. It can be really difficult to keep up with everyone. The people you respond to the quickest often just happen to be the people who got in touch at the right moment, when you are not busy and when you are not tired or ill. Other people don't get a reply from you, either for ages, or at all, and you can feel really guilty about that, but you hope people understand that your head is all over the place, you really are tired, you really are ill, but that you really are grateful to have heard from them anyway. Sometimes you don't reply to someone for a long time because you want to do it properly, write a proper email, or give them a call, or arrange to meet up, but it gets delayed and delayed because you never have the energy. What you should have done was just send a short message in the first place at least saying thank you, and explaining you're just tired and ill. It's just difficult when you have cancer and everyone knows about it to keep in touch with people as well as they're keeping in touch with you, but you hope that your excuse of having cancer is a good enough one and that people understand.

But what about the people who you thought were important friends, who don't get in touch with you. Ever. The ones who since you have been diagnosed with cancer have disappeared from your life. Complete radio silence. You know they're there, you know they know you have cancer, that you could die, that you are going through treatment that is making you very ill, but they don't get in touch. And they don't have the excuse of having cancer and being exhausted and ill and unable to keep up. They just appear to have made a decision that now you have cancer they don't want to be your friend any more.

What a let down it is, realising that people you thought cared about you actually don't, and they can just carry on with their lives and pretend you don't exist any more. As your Facebook friend, they have either "unfollowed" you so that they don't get your updates, or they get your updates and completely ignore them. This is fair enough for the people who are on the fringes of your life - those that you maybe went to school with but haven't seen in years, or people you once worked with for a few months years ago, and neither of you have removed the other as a friend on Facebook because you don't want to be rude. Ie the people who probably "unfollowed" you years ago when you "unfollowed" them and probably have no idea what's going on. Those people don't matter. But when the people who you thought were your real friends, who you spent time with, told everything to, talked for hours to, were there for important life events, etc, when those friends just disappear as soon as you have cancer it's a nasty blow and the hardest part is you don't know why, you just know you've lost a friend and it wasn't your decision.

Sunday 15 March 2015

Forgetting about cancer

Author: Anonymous

I think about cancer all the time, will this ever go away? If my treatment has worked successfully, like my breast care nurse says it has, then there isn't any cancer in my body anymore. It's gone away. In which case my body is starting to forget all about it. It does look that way. My hair is growing back, my eyelashes are growing back, my eyebrows are growing back. My mouth isn't sore any more, my nose doesn't run, my eyes don't stream. My body is moving on. But my mind hasn't forgotten. Cancer is still in my mind all the time. I might as well be riddled with it.

Do you ever manage to forget about cancer once you've had it? Can you ever go a whole day without thinking about it? Carefree, or distracted enough by normal day to day jobs and worries and tasks that you don't even have time to think about cancer. Or do thoughts of cancer always trump everything else?

If you make yourself not think about cancer are you burying your feelings? Blocking things out that will niggle in your subconscious anyway and cause you bother down the line. Or worse, if you make yourself not think about cancer are you tempting fate? What about the reminders of cancer around your house, like headscarves, anti-sickness tablets, all those leaflets you get from the hospital. Do you put them away in a cupboard out of sight? Or get rid of them all together - which just seems like an invitation for the cancer to come straight back and teach you a lesson for being so complacent.

How do you find the right balance between acknowledging that cancer has been a part of your life, and using that to make the most of your life because you don't know what might happen in the future, and forgetting about it enough that it doesn't spoil time you have that as far as anyone can tell is "cancer free"?

No-one gives you the answers to these questions. When you have chemo there's a 24 hour chemo line. You have to phone it if the slightest thing happens. Sore throat - call the chemo line for advice and instruction. Sore fingers - call the chemo line for advice and instruction. Sickness - call the chemo line for advice and instruction.

When you have surgery you are under the care of doctors and nurses. They check your wounds, change your dressings, check your body for bed sores, give you painkillers. When you're sent home from hospital it's with a bag of medications, lots of instructions, and a series of appointments to come back for checks - plus a phone number to call in between times with questions or concerns. They tell you exactly what to do and when.

When you have radiotherapy you are checked by hospital staff every single day. Sore skin - you tell them, and they advise. Again, you're given clear instructions about what to do. How warm to have the water in the shower, what kind of clothes to wear, what you can put on your skin. Follow the instructions and you'll be ok.

But when it comes to your mind, and the way thoughts of cancer infiltrate your mind - there is no 24 hour phone line, no ongoing check up appointments, no clear instructions about what you should do and when in order to get better.

So I'm not even sure whether the question is how do you forget about cancer, or, should you forget about cancer?


Thursday 12 March 2015

The wonderful world of wigs

Author: Christina B

To most women who have breast cancer the thought of wearing a wig fills them with dread and fear of the unknown. The words "free wig" to me however was like music to my ears. Two little words that despite having cancer makes narcissistic chick sit right up and take note. A small bonus in this horrid journey. I'd also heard lots of rumours that the NHS provide around £150 towards wig costs and that you could have your wig professionally styled from Toni And Guy. Way to go NHS!!!

As a black woman prone to regular hair changing and high fashion hair styles I have always dabbled in the false hair/ wig department. I know my younger sister will pull me up on my usage of the word dabble here but hey ho. A new wig free wig sounded like a fabulous idea to me. Without dumbing down the side effects of chemotherapy, hair loss is a distressing part of breast cancer and some women need counselling and really struggle at the prospect of losing their hair. Hair to many woman equates with femininity, beauty and their identity which I understand and fully respect. Many also resent wearing wigs and scarves and head wraps as alternatives. For me however free wigs was certainly a USP of having the disease and I couldn't wait to start on that front. After finding out that chemo was part of my care plan the next day I phoned up my BCN to find out the where/ when and what regarding the wig. I picked up the phone and dialled the number excitedly.

Receptionist- Hello Sheldon unit.
Me- Hello... I'd like to make an appointment to have my free wig please.
Receptionist - Yes can I take your details
Me- Yes it's Christina Bray cue, phone number address etc etc Er can I ask a few questions please?
Receptionist- Yes fire away
Me- Er you know the wig is it made with human hair please?
Receptionist- Yes it is.
Me- Oh lovely yes that's fabulous. Erm I also just wanted to know what colour is the scalp on the wig please as I'm black and I didn't want a pink scalp if that ok so do you offer scalps in different colours please?
(Gosh I couldn't have asked that question more awkwardly if I'd tried. Should have planned that one in my head.)
Receptionist- Yes of course we do. We have a wide range.
Me- Oh lovely yes thank you. Erm is it Remy hair?
Receptionist- I haven't a clue love, I think you know more about it than me why don't you just come to your appointment and ask the specialist?
Me- Erm ok, thank you. goodbye.

I can hardly contain my excitement! Real hair, colour matched scalp! What are voters moaning at? The nhs gives human hair to cancer sufferers! Who knew?! Appointment is booked for Monday and I'm looking forward to it! It feels like I've outsmarted the Big C today because rather than crying and worrying about my hair falling out I'm uber excited about getting a new wig! Cancer 0- Me- 1. Every cloud has a silver lining and this one is silver and sparkly.

(And here it is!.....)

Tuesday 10 March 2015

Waiting for hair

Author: Andrea P

So this week marks 13 weeks since last chemo. Chemo actually lasted 15 weeks. I cut my hair into a short pixie crop before chemo started and shaved it all off just before second chemo, so I have had no hair for approximately 25 weeks! 25 weeks!  By now I thought I would have had an Annie Lennox style full covering of hair, I really did, I actually thought I would have that by Valentines day, but that day came and went, I thought I would have it by the time my cousins came for a visit on the 28th feb, but that wasn’t to be, I thought I would have it by the time of my best friends birthday on the 17th March, we are actually going out to celebrate on the 13th and no that is not to be either.  

Oh don’t get me wrong I am not totally bald I do have quite a bit of growth and its quite even all over except for the front section which kind of makes me look like a balding old man, and according to most people my hair growth is really good, normal etc.....but that doesn’t stop me from feeling peed off, fed up and down right jealous of everyone else whose hair seems to be growing or has grown a lot faster than mine! How can this be? I am hairy, yes I will admit I am a very hairy woman – I am one of those people that hair grows really fast, people are always so jealous that I can cut my hair and it can grow long again so quickly, so what’s happened? I don’t get it? Maybe I got caught up in the excitement of all those ladies posting pics on my support group network YBCN whose hair had grown so quick after chemo, full coverings after five, seven, eight weeks! But me, what about me???

I was never even shiny bald, I always had a degree of stubbly bits, I never had that shiny egg head look so how comes ladies with the smooth heads are passing me by with their hair growth? Okay so I have shaved it down 3 times, in December, January and February but it needed to be done, the fluff needed to be gone and it needed to be evened out which it has so I don’t mourn the fluff that is gone by any means but still........why does the front take so long to come in? Why? I wonder this when I am sitting on my sofa of an evening watching my evening tele programmes massaging my head with essential oils which claim to promote healthy hair growth and I am concentrating on that front area – I kid you not I will sit there massaging for hours willing that front bit to come in and catch up with the rest. Every morning I run my fingers along the front section wondering if when I get up and look in the mirror there will be a change, wondering if what everyone says is true ‘it just seems to come in overnight’ well I am still waiting for my overnight miracle.

My bathroom is filled with products for hair growth, Lush new bar, Fast Shampoo and Conditioner, Alpecin Double strength shampoo, Nioxin shampoo and conditioner, Lush roots, Nioxin serum and scalp tonic and Lee Stafford hair growth spray. I mean how many products can one baldy use on ones head? For a while I even resorted to rubbing the holy water my dad bought back from the Monastery in Cyprus (which was meant for me to rub on my bad boob, I think) on my head! Can you imagine being so desperate you are rubbing holy water on your head? I realise I must seem quite mad, and very desperate, but I am sick and tired of waiting. I’ve had cancer for god sake, I’ve been through chemo, surgery and about to embark on a three and a half week course of radiotherapy and have already started Tamoxifen. I just want to be normal now, I am fed up now, sick of wigs and hats, sick of looking sick!

And while I am having a moan why are my eyelashes taking so long to come back too? I’ve had bottom lashes for a few weeks now, the top? Hmmm well they are almost all filled in but sooo short. Again, I am somebody who is usually envied for their long eyelashes, I just want them back and some hair! I’m not fantasising about long flowing locks, I don’t care how short or how long it is, I just want something, just to look normal again.

Maybe it’s because I am so desperate to put this episode behind me and get on with my life, or maybe it’s because I am a vain cow. I know I should be happy that the cancer is gone....for now...who knows what may happen in the future...and that there are many people with more problems to worry about that a bit of hair and I should shut my mouth and be grateful and also be grateful that my hair is growing back very dark – my normal colour and not grey.

All I will say is when you read the chemo handbook and it tells you to expect an even head growth between 3-6 months you should believe it and not got get caught up with some of the miracle stories and pictures you may see because quite frankly it will save you the upset and disappointment when you are not one of the lucky ones and if you are it will be a wonderful surprise you weren’t expecting. I wish I listened more to the girls that told me they didn’t have hair until around month 4 or 5 because I wouldn’t have been so disappointed now! I was convinced I would be one of the lucky ones! People keep telling me to be patient! Patient! I have run out of patience, I really really have! But what else is there? What else is left except for me to try and think about something else to fill my time and energy on and try and be a little bit more: In the words of Gary Barlow.... patient.......

Saturday 7 March 2015

The day before results day

Author: Christina B

Flat, horizontal, numb. Sad chick has silently crept into the building filling my every pore with despair and apathy. Despite sad chick taking over I still have the failsafe default mom setting which causes me to drag myself out of bed, wake up sleeping son and make a pack lunch for him, whilst checking he has covered all bases of washing, brushing teeth, combing hair and creaming face in preparation for school. I kiss him goodbye and wish him luck for his athletic tournament later that day as he leaves the house bound for the bus stop.

Being sad takes up so much energy. It's draining. Why is is that today I'm not feeling more upbeat? I've had a lovely weekend and Sunday was textbook perfect, chauffeur driven to eat a delicious sunday lunch with my ex in laws so why am I feeling so rubbish?

I'm searching hard for feisty chick, the one that tells me I've kicked cancers butt and wears red lipstick and thigh high boots and attitude but where is she today? Ok so she's completely vacant..... Theoretical chick perhaps?

Let's break it down and look at why I'm feeling sad. Doh?! You have cancer you stupid cow no brainer. That's why you're sad.

"Get over it. "says a mean no bullshit chick voice in my head. She needs to bog off with her attitude, besides I don't actually have cancer now technically as it has been removed and is sitting in the pathology lab waiting for someone to look at the cell mutations after checking their emails, Facebook and having a morning coffee.

So I look into myself again searching for a logical reason for sad chick moping about all in me. Tomorrow is the day when I see my surgeon and he will give me the results from what they have removed. Depending on what they found in the lab (my histology report) will basically determine what treatment I will have going forward. Sad equals anxiety over future treatment. I'm nervous about finding out what further treatment I will need. " it's all part of the journey" and other meaningless cliches begin to take up space in my head.

The reality of the situation however is that chemotherapy may be needed which has a whole host of side effects from hair loss to mouth ulcers, flu like symptoms and generally feeling a bit rubbish. So I'm not looking forward to hearing that I need that, but if I reach out to my scientist chick she can reassure me that chemotherapy is a good thing as it rids the body of any potential stray cancer cells so in effect I should be grateful to have chemotherapy as it would also give some degree of peace of mind. I google chemotherapy but quickly tire of reading about the side effects after 2 paragraphs. Everything just seems such an effort today, like a upward hill journey when you are totally unprepared.

What tickles me is that people keep telling me how well I am doing. How positive and brave I am. I guess I don't really have a choice, shopping still needs to be done, cleaning and K's homework, school trips organised and washing and ironing done. Many days I want to shut myself in my bedroom and not come out. Nothing to admire about not getting washed and dressed until 3pm and watching Jeremy Kyle and ordering my son a takeaway for dinner. Nothing to admire about pretending to the outside world that you are busy sorting out "stuff" and you've "got this" so that you can lie on the sofa all day and hug yourself wearing a cosy fluffy dressing gown and miserable face.

I read somewhere that the reality of cancer is different from the image we try to portray. Yep they got that bit so right. Don't get me wrong some days I wake up and I'm pumped full of pink breast cancer positivity! One day I was so charged I tried to email Angelina Jolie to congratulate her on her difficult decision to have a double mastectomy on hearing that she had the BRCA gene. Today is no such day..... Today I'm searching for that sparkle, I think that sparkle is on the sofa with a duvet over me. It is a Monday after all.

The first time I looked at my mastectomy scar

Author: Christina B
 
So I’m back in my own surroundings and out of hospital, and it feels blissful. I only have to do one thing today — well, aside from the essentials like taking care of the wound and keeping up on my medication.
 
Today is the day I must look at my scar.
 
If I don’t, it’s defeat because it’s my body, and I need to know what lies below the dressings. I need to know what lies beneath.
 
In the hospital I had a brief flirtation with this when I looked at my reflection in the the bath tap, but I glanced away rapidly, not ready for what I would see.
 
Today though I’m ready, and I admit, my narcissistic tendencies are going to help me on this one. I undress first and get in the shower enjoying the scent of Soap & Glory shower cream. Clean, sumptuous and fresh. I spend time washing my skin, washing away the institutionalized smell of the hospital. It feels so good to be in my own bathroom, in my own bath.
 
Freshly bathed and dry, I turn slowly to the mirror and dart my eyes feverishly, knowing what I need to do. I look…
 
Once I look, I can’t stop. My eyes take it all in, and I stop in my tracks. I look at “it,” and many thoughts flash through my mind. It occurs to me that I actually went through with the mastectomy operation, and it was a success. That thought doesn’t stay long enough in my head, though, as vanity chick breaks out, and I’m looking at it from an aesthetic point of view, thinking how deformed and monstrous it looks. The reconstruction is high and wonky, and the stitches remind me of a sewing lesson when I was in primary school where we learned to do blanket stitching but you pulled too tight and your creation puckered. The whole reconstruction looks like it’s about to burst; it looks stretched, angry and raw. I notice, for the first time, stretch marks on my breast. Oh yes, and my nipple is in the pathology lab.
 
The vanity chick in me is getting way too much airtime. She needs to get off her perch and move out of my head. OK, time to get a new chick in my head to take a look. I’m searching for her. Scientist chick? I’m a medical miracle. I’m trying to convince myself to own feelings I don’t even have yet. Yes that’s it, I’m a medical miracle — what they’ve done is amazing really. I’ve had cancer cells removed from my body, chemically treated pig’s membrane attached to an expanding implant and then my original skin sewn back on. 2015 and this is where we’re at. Pretty impressive. The pig’s membrane holding the implant in place intrigues me; I remember when the surgeon told me the plan and the subsequent Google search I’d done that night. Let’s hope my body likes pork. (Given how much I love pork belly and barbecue ribs, it would be an abomination if my body rejected this breast. This chick loves pork.)
 
Anyway, I’m staring at the new breast. I’m doing some psychological “own it” piece one of the girls from my support group told me to do. “Feel it!” She said “Own it!” So I’m simply staring at the breast, coming to terms with it. I feel like I’m staring at someone else’s body. It feels so surreal; 72 hours ago I had a pair of breasts, and now I have one breast and a wound. It’s a wound at the moment, but I know in time it will be a breast. It’s a bit like when I was 12 and waiting for breasts to arrive. I had mounds then, but I knew I would have breasts eventually, and yes, they came and served me and a few admirers pretty well.
 
So yes, now I can tick looking at breasts off the tick list. It’s been 10 minutes, and I need to put on some clothes. I feel OK. Mission completed. I’ve looked, and I didn’t cry or vomit. Time to put on my Marks & Spencer sports bra and favourite leopard skin knickers.
 

Brain won't stop

I am kicking off the Young Women's Breast Cancer Blog UK with a selection of posts from existing blogs of young women with breast cancer, to provide examples of the range of things you can write about.
This post is from the fantastic blog Gemma2015.
https://gemma2015.wordpress.com/2014/04/17/brain-wont-stop/

Will keep this short, since going for my fill this morning, I have had this one question going round and round in my head all afternoon/night……. WHAT HAS BEEN THE WORSE PART IN ALL OF THIS? Asked by Mr M, I kind of looked at him and went blank sure he heard my cogs going round and round in my head, first I came out with when you told me I had cancer then it was no the chemo then it was the worry about the op , then in the next breath it was no it was all of it, I was talking to Richard on the way from from feeding the cattle on the farm about it, and have come to a conclusion, my world fell apart when I got told the news that I had breast cancer, chemo was the un known and was hell, then to find out I was a brca1 carrier I will have to live with the fact I may of past this on to my girlies, and the big op (double mastectomy) I was s*** scared think we all fear the worse, don’t get me wrong it has been painful and scary to look at but I now think I look the same with my clothes on no one would know, and from all the kind comments I have had of my pic on Facebook it’s really made me buzz again thank you to all of you.

At the end of the day I am still here to tell the tale so nothing can be that bad can it? <3 x

T vs the Big C - Look Good Feel Better


I am kicking off the Young Women's Breast Cancer Blog UK with a selection of posts from existing blogs of young women with breast cancer, to provide examples of the range of things you can write about.

This post is from the fantastic blog T vs the Big C - My Breast Cancer Journey.
https://www.facebook.com/TvsTheBigC.MyBreastCancerJourney

A couple of months ago I started an album called the Yin and Yang of Cancer. This was to kind of show that whilst it's absolutely rubbish being diagnosed with it (yin), lovely things can happen too (yang) - (you can find it here >> http://on.fb.me/1As75gm).

Anyway, one of those lovely things happened today when I attended a Look Good Feel Better session at the Maggie's Wallace centre on the hospital site.

LGFB is an international charity that was set up to provide free services to those diagnosed with any type of cancer to help improve well-being and self-confidence.

Basically it was a full on make up lesson which for someone who's got to the tender age of 39 and just about worked out how to put on eyeliner was slightly daunting, but brilliant too.

*And* you get to keep all the things you put on your face too! So I came away with a bag full of goodies from Lancome, Clinique, Estee Lauder, L'Oreal, and No7 - yippee!

I have to say I still may not be applying full on war paint every day (blimey there are a lot of things to dab and smudge), but at least I know how when I need to scrub up a bit.


Day 197 - 10th February

I am kicking off the Young Women's Breast Cancer Blog UK with a selection of posts from existing blogs of young women with breast cancer, to provide examples of the range of things you can write about.

This post is from the fantastic blog Nelly's Notes.

http://dsa1980.tumblr.com/post/110740898481/day-197-10th-february

In preparation for writing this, I have just re-read my posts from the day directly before my chemo.  Its fascinating to see the journey I have been on and how the fear of the unknown in almost every case has been far worse than the known.

The thing I had not remembered but just made me giggle though is that my ‘last supper’ was at Luck Lust Liquor and Burn, as was my celebratory lunch.  Seems I really like the place!
I’ve not been as ill as I anticipated i might be, but I have been surprised at just how tired I have got recently.  I start radiotherapy in three weeks which might make me worse, but now I can see this through the eyes of someone on the other side, so i know i have to go through it (although I can’t pretend I won’t get frustrated by it).

I know that at least one person has been waiting to see this picture, the crossing off of chemo number 8.


For me, the more exciting photo is this one


ripping up the countdown was very cathartic.  Not seeing it every time I enter the kitchen is definitely a bonus!

Accepting help, rejecting scepticism

I am kicking off the Young Women's Breast Cancer Blog UK with a selection of posts from existing blogs of young women with breast cancer, to provide examples of the range of things you can write about.

This post is from the fantastic blog Fighting Genghis.

https://fightinggenghis.wordpress.com/2015/01/20/accepting-help-rejecting-scepticism/


I’ve never been all that good at accepting help. My dad delights in frequently retelling anyone he can (hi Dad – I know you’ll be reading this!) that, aged 2, I got out of my buggy, went round behind it and insisted “Roro push”. Even at that tender age, I wanted to be doing the do, not being helped.

One of the things that my current situation is teaching me is to unlearn that behavioural trait. It ain’t easy. It feels like it’s hard wired. I don’t ask for or accept help. I give help. Until the day that Genghis arrived. Now I have to unlearn and relearn. So many people are now involved in helping me. Number 1 is my darling and wonderful husband. For the first 10 years of our marriage (almost) it felt like we helped each other and accepted each other’s help more or less evenly. There were times when that balance swung one way or the other, but overall we were on an even keel. A partnership. Now I feel that this has been rewritten. Like in our ketubah (our Jewish marriage contract), Elliot does all the doing and I silently accept. It is taking me time to come to terms with this, for all sorts of reasons. I am not the person my husband married and that makes me sad for him. I am not the strong woman he shared so many experiences with. I am leaning heavily on him, and that is no small burden. And when he reads this he will tell me that it isn’t a burden and that he loves me, but I know that things are different now. Not worse, not better, but different.

Help is flooding in from other quarters too and, again, I am learning to accept it. My darling sister in law became our temporary nanny for a fortnight – I accepted her offer without a quibble. My team at work are picking up my slack and again I accept without demurring. The lovely lady who has found spare time to give me reflexology. The prayers from all over the world. Family and friends are pulling together to offer assistance in all sorts of ways. It is a true outpouring of love and one that I am not able to resist.

And with this seismic shift in my attitude to self-sufficiency has come another change. Always the sceptic, I am now giving myself permission to explore those things that my rational brain has hitherto rejected. Religion. Acupuncture. Healing. Counselling. And so on. Not everything helps. Some things remain difficult for me to accept. Other things start to seem less unbelievable. Don’t get me wrong. There is still a loud voice in my brain shouting “Bah humbug”. But that voice is finding competition for the first time in the quieter, calmer but equally resolute voice which says “Maybe”. Maybe this will help. Maybe this is working. Maybe there is something to this. Maybe it is not all within our control. Maybe there is something stronger, more mysterious, more powerful that can help. Of course, I need the doctors and the drugs. But maybe – just maybe – there are some other pieces to this puzzle.

And then I start to see how the two factors are working together. By allowing myself to accept help and by realising that I am not a fortress, I am also realising that help comes in all shapes and sizes. It is not just the obvious things. It may not always be tangible. But my mind is now open to accepting help in any form. I will give anything a go. For all my self confidence and feeling that I know best, I now know that I don’t. So I am giving myself over to the doctors and the nurses and the pharmacists and the family members and the friends and the rabbi and the prayers and the healers and the complementary practitioners and I am asking them all to help me, please.

Dating with disease, swipe left or right?

I am kicking off the Young Women's Breast Cancer Blog UK with a selection of posts from existing blogs of young women with breast cancer, to provide examples of the range of things you can write about.

This post is from the fantastic blog The Malignant Ginger.
http://www.themalignantginger.co.uk/dating-with-disease-swipe-left-or-right/

At the beginning of this year when I thought I was cancer free, I decided it was time to time to bag myself a man, or at least have some fun and go on a few dates. I haven’t had a serious relationship for well over a year and no amount of mingling at pubs, gigs etc was proving fruitful on the man front so I decided to join the rather dubious world of online dating. I hear all the kids are doing it nowadays.
 
It also has been a hot topic as of late within the online communities for young people living with cancer that I belong to. Is it okay to actively seek a relationship even though you know that you’re seriously ill and may not be around for long?
 
I have dished out the same advice on a few occasions. In my opinion, I see my secondary breast cancer diagnosis the same as living with a health condition. People with diabetes, heart disease, cystic fibrosis, MS, ME, and all manner of other health conditions manage to date and find partners, so why shouldn’t I? I don’t consider having cancer as part of my personalty or a personal attribute so why should I mention it on my online dating profile? I do have photos of myself with a shaved head and wearing various wigs and have found it nothing but a positive thing, plus it provides a topic for conversation!
 
If I can get past the cramp in my thumb from swiping left (i.e. NO), I have made a personal rule that if I arrange to meet up with any potential suitors, I will tell them about my diagnosis. This has happened a few times already and it didn’t put any of them off. In fact, they had some lovely complimentary and sensitive things to say about my honesty. It kind of restored my faith in huMANity.
 
I don’t expect to find the love of my life through online dating, all I want is a little fun and some maybe some flirting and candlelit footsy. Despite having a buzz cut and a few scars I still think I’m a pretty hot catch. So in the words of that well known song by Sheryl Crow “all I wanna do is have a little fun before I die” and I will NOT let cancer take that away from me.
 
So if anyone reading this has any single brothers, friends, workmates, fathers and grandfathers please pass them my contact details. Oh, and they have to be tall or they risk looking like a hobbit next to me.
 
Men, please form an orderly queue.

I am not my cancer!

I am kicking off the Young Women's Breast Cancer Blog UK with a selection of posts from existing blogs of young women with breast cancer, to provide examples of the range of things you can write about.

This post is from my own blog, Fights Like A Girl!
http://hbocuninformed.blogspot.co.uk/2014/11/i-am-not-my-cancer.html 

I can't remember who, but a couple of weeks ago someone tweeted a link to this article:

I am not my nipples (Please, please read it! I mean, read it now, before you continue reading this.)

The author of the article is Kayla Redig (@iamnotmycancer), who was diagnosed with breast cancer at 24. I've been reading other articles Kayla has written, as well as her blog, Love Conquers All. There's a lot that Kayla has written that  I felt could have come straight from me. To say the I am not my nipples article really struck a chord with me would be an understatement. The part of the article that had me practically jumping off the sofa screaming "Yes!" was this bit:

"After my bilateral mastectomy....  every reaction I heard when people found out that I didn't have nipples was how weird it was. Don't I feel like less of a woman? Isn't it embarrassing to be topless around others? And even though it doesn't bother me, shouldn't I "fix that" for my future spouse? Who knew that nipples were such a huge part of being human -- I wasn't aware that my femininity relied on two little pink bumps.....  I might not have nipples but I do have a huge smile and a funky 'fro. I might not have nipples but I hold a record for the Blazin' Wings BWW challenge. I might not have nipples but I will try anything once. Plus, I act before thinking a lot of the time and love people in big ways. What about defining me by some of those things? Shouldn't we celebrate and embrace those qualities? If you're going to label me, at least let me provide you with some labels to choose from."

I knew  right away I wanted to write my own I Am Not My Cancer blog post. This is particularly important to me now, while I am having chemo. The truth is that chemo has taken over. It has taken over my body. It's taken over what I can and can't do with my days and when. It's taken over conversations. It's taken over all of the drawers in the bathroom cupboard. Even my beloved Week 3 is really all about the chemo - all about fitting as much fun stuff in as possible before my next blast. So I've been feeling very much like I am my chemo.

I've become very focused on the numbers. I'm 12 weeks in. 4 chemos done, 2 to go. 24 days until the last blast, assuming there are no delays as a result of low blood levels. 10 more injections. 6 more days on the 'roids. 2 more blood tests. 2 more cannulas. 4 more possible faints. I'm constantly counting down, because I cannot wait for the end. Time spent over the last couple of weeks with women who've recently finished their own treatment for breast cancer has given me a real boost. Everyone is in agreement. Chemo is by far the hardest part. By far. So not only am I counting down because I'm desperate for it to be over, I'm counting down because I'm excited for it to be over. To get back to being me.

So here it is....

I am not my chemo. I am not my hair. I am not my eyebrows. I am not my eyelashes. I am not my nipples. I am not my ovaries. I am not my cancer.


I am Sarah. I wear my heart on my sleeve and I love my friends more than anything. I often talk too much, but I will speak up for things I believe in and stand up for others. I spend a lot of time poking fun (including at myself). I love people who can make me laugh. I'm impatient, but I get things done. I'm gullible, but I'm trusting, and can be trusted. I love to read even though I rarely finish a book. I worry about what people think about me and my feelings get hurt too easily. At those times I tend to find putting Beyonce on loud helps. I'm forgetful, but I like to learn, especially from and about other people. I'm a feminist. I love dogs. I love Christmas and as far as I'm concerned, National Lampoons Christmas Vacation is the best film of all time. I like looking up at the stars and thinking about how small I am and how big the universe is. I sing loudly when I cook. I don't like to miss out on any of the fun. I want to make other people happy. I'm an optimist, and I'll do whatever it takes.