Well, it's been a year....

Well, I've made it. It's been exactly one year since I sat in front of the consultant and she pointed to the mammogram on her screen and said 'this bit here - this is what they think is cancer.' I can remember my response quite clearly:

'Fuck'.

When I went to the hospital that morning I honestly did not believe that I would receive a cancer diagnosis. That's something that happens to other people, right? I trotted in to the breast clinic relatively carefree. Well, with the words of two GPs who I had seen previously echoing in my head - 'your age and lack of family history mean it's nothing to worry about'. I learnt the hard way that sadly this really is not the case.

The 22nd of July 2014 was when I was given my 'unofficial' cancer diagnosis. That is - it was very plain to see (at the least to the radiographers and consultant) that my boob was trying to kill me, but a biopsy was taken just to make sure. I left the clinic and the hospital that day with my life irreversibly altered forever. I left behind a piece of myself that day, which I have had to rebuild over the past year. My mother bundled me out of the hospital, back to my flat and then to her house. I regressed back to childhood over the next couple of days - all I wanted to do was cling to my mum and beg her to make it all go away.

I told very few people about my diagnosis before the official biopsy results were given two days later on the 24th of July. I think a very small part of me still held on to the hope that they were wrong, that the mass on the scan was just something simple and benign. Telling other people would have made it too real, too final. All my hope was dashed on my return to hospital on the 24th, when I was told that yes I did indeed have an invasive tumour in my right breast. This year on the 24th of July I intend to be on a train to Brighton to spend the weekend with some of my closest friends courtesy of the Willow Foundation - preferably half pissed.

The 24th of July 2014 saw the beginning of the complete whirlwind that is a cancer diagnosis and treatment. Since that day there has been:

3 biopsies 
4 mammograms
4 ultrasounds 
16 blood tests
2 radioactive injections
2 general anesthetics
2 lots of surgery
5 nights in hospital
2 head shaves
Multiple wig fittings
1 bone scan
6 toxic infusions 
12 oncologist appointments 
7 surgeon appointments
1 genetic testing appointment
3 late night visits to A and E
11 cannulas 
8 lots of test / scan results
1 chest x-ray
3 MRSA swabs
1 arm ultrasound
6 lots of steroids and anti sickness treatments
21 lots of self-injections
A truck load of other meds
1 flu jab
Several sore and collapsed veins
3 physio appointments
4 Zoladex injections
15 radiotherapy sessions

(Not an exhaustive list!)

There has been sleepless nights, bad dreams and tears. I've cried, I've sobbed, I've been utterly terrified. I've felt angry, frustrated and incredibly lonely. I've mourned the end of my life as I knew it. I've lost my hair, my eyebrows, my eyelashes and my identity. I've gained over a stone in weight. I've said goodbye to two close friends whose support and love helped me through the last year and who I still miss terribly. 

But I've also laughed more than I thought possible. There has been times when I have surprisingly felt happier than I have for years. I have felt loved and cared for. I have met some amazing people and made some of my closest friends. I have reevaluated my life and learnt more about my own strength and character and what I am actually capable of than I ever have before.

So I've done it. I've reached the one year mark. I've joined that statistic of the 96% of women who survive one year after their diagnosis. 

So how do I feel?  

Physically and mentally, I get tired very easily. I have learnt that my ability to nap is unparallelled. The medication I take to try and prevent the cancer returning brings with it tough menopausal side effects including hot flushes, weight gain and insomnia. I still suffer with total mind fuzz, otherwise known as chemo brain, which again isn't helped by my medication. I get frustrated because I find it difficult to find the right words to describe something or I lose my train of thought half way through a sentence. I quite often feel like I am thinking through custard. I have to write everything down otherwise I will forget important details and dates. I keep three diaries - not because I have the social life of the Duchess of Cambridge, but because without noting down every meeting and arrangement as soon as I make it I will inevitably forget it. I also find it very difficult to concentrate and have a terrible habit of zoning out during meetings or conversations. I have the concentration span of a flea on speed.....

Of course, my body doesn't look like it once did. It is fatter and softer with the addition of several scars and one fake body part. My risk reducing mastectomy has been agreed, which means at least two additional surgeries, the first probably being at the beginning of next year.

Emotionally, it's very difficult to describe the maelstrom of feelings I am experiencing right now. I feel cheated and angry that this happened to me, but lucky I have made it this far. I feel guilty that I am here and that other beautiful, vibrant young women have been taken from their families and friends far too early. I feel blessed to have met some incredible people over the last year, and devastated to have lost some of them too. I feel grateful to have been given another chance, but confused as to how to use it to make a difference. 

I look back at the events of the last year and it seems difficult to believe that it actually happened to me. But I also I feel completely overwhelmed with the reality of the situation. If let myself dwell on it for too long, it almost feels just too hard to face. For all the scares and scans that turn out fine, there is the chance that one day, it might not. There is the very real possibility that I could fall in to the statistic of those women who don't make it to their 5th or their 10th year. And there is no way of knowing whether this is going to be the case. It's the complete uncertainty that I find incredibly hard to deal with. Walking around feeling like you have a ticking time bomb inside of you that may implode any minute does not for a peaceful mind make. It is, quite frankly, utterly terrifying. Yes, none of us know how long we've got. But when you have started your own mortality directly in the face this takes on a whole new meaning.

But I can't let the fear control me. I have to take control of it. I have to grab it by the neck and shove it back to the back of my mind where it belongs. I need to honour those women who have been taken by this disease by seizing my second chance and making the most of it whilst I am able to. By enjoying life and squeezing out every last drop. A day spent worrying about your future, is a day you have lost from your present. As my wonderful friend, the late, great JoJo Gingerhead said:

Concentrate on the present

Don’t dwell on the past

Don’t worry about the future

Live for the now

Live for the now 

One wish

A couple of days ago I came across a video on Facebook. A social experiment in which two strangers sit on either side of a wall and are asked 'if you had one wish what would it be?'.

On one side are those that are healthy, on the other, people with cancer or their family members. The answers that they each give to this question are incredibly different. For this post to make sense to you it is necessary to watch the video rather than have me describe it. You can do this here.

This video struck an emotional cord with me. If you would have asked me this question before cancer, I would have most likely have replied in the same vein as the 'healthy' people in this video. A better job, more money, a bigger flat. Indeed, before cancer I spent a lot of time wishing that my life was different, thinking that having more of something would make me happier. Constantly searching for the one thing that I thought would bring me happiness and fulfillment.

However, the moment you are diagnosed with cancer, everything changes. Nothing else matters. Priorities and focus shifts and the world becomes a very different place. The only thing that is important is staying alive. Whether this is done with a better job, an expensive car or more possessions no longer matters. I no longer care whether I will own my house or will get a better job with a bigger salary. Yes, there are things that I would like to do but ultimately all I want is to be alive this time next year and in years to come. To continue to find joy in the smallest of things. To spend more time with my family and friends. To keep on existing and being. 

I can remember saying to a friend a month or so after I was diagnosed that the one thing I wished for most in the world at that moment was to wake up the next morning and find out I didn't have cancer anymore.

There are lots of things I would wish for right now. To not have the angry cloud of cancer and illness hovering over me. For a guarantee that the cancer is gone for good and will never come back. That this disease did not exist and my friends would not have to suffer from treatment side effects and the anxiety that comes with their secondary diagnoses. That we could be carefree and happy again. That there was a cure.

But if you asked me right now what my one wish would be, I would answer this -

For my friend to get better. 

For my beautiful, bonkers, sweet, clever, kind friend to get better.

Love you JoJo xx

Younger women with breast cancer - Andrea's story

Today's featured story about diagnosis, treatment and being breast aware is from Andrea, aged 39. Andrea is a make up artist undergoing chemotherapy for breast cancer and has created a you Tube channel called Baldy Beautiful, full of make tutorials to help us chemo baldy birds feel better about ourselves! Oh, and they are also good for non baldy ones too ;-) You can find Angela's channel here .


Andrea also has a Facebook page which you can find here . You can also follow her on Twitter  - @Baldlybeautiful.


'Straight after Christmas 2013 I decided that after being a lazy bitch for a year and letting myself go a bit - after a car accident which kinda left me a bit scared to exercise in case I hurt my back more - enough was enough and that in one years time (Jan 2015) I would be 40 and there was only one way I intended to be for my fabulous party - fit and frickin fabulous. I got straight back into an exercise and healthy eating routine and the weight dropped off and I was back to my slinky self by May/June, as well wanting to super slinky I decided i wanted hair as long as possible for my party and had successfully got it to half way down my back. I was very pleased with myself!

One morning after one of my 'Hannah Waterman DVD' workouts - which are quite tough I might add, lots of jumping jacks/burpees/pushups and planks, I jumped in the shower and was planning on taking my daughter up to oxford street to forever 21 as she was desperate to see what it was all about (all the teen bloggers she follows on youtube shop in forever 21 don't' you know!) So I'm in the shower just soaping up to wash under my arms and boobs and I felt a bone sticking out, literally it was so big it felt like a bone, I was confused, had I injured myself whilst doing all those burpees? had I broken something, I felt it again, no it wasn't a bone, what was it? a lump? but it cant be, I would have felt it before, it certainly wasn't there yesterday or the day before. Panic started to rise and I felt the tears streaming down my face under the water of the hot shower. It just couldn't be, I would check again once I was out of the shower and dry. So I dried myself off and felt again, there it was, still there. I phoned the doctors surgery straight away and burst out crying on the phone to the receptionist! She told me to calm down and that it was probably fine but I got booked in for the next morning with a female doctor. Unfortunately I couldn't go in straight away because the only female doctors in that day were locums and they didn't want me to see a locum, fair enough but the stress of having to wait a day was awful. I debated on whether to tell my husband or not and for a while I really thought I would just go on my own so as not to worry him but in the end I burst out crying and told him I had found a lump. He thought I had probably just pulled something whilst exercising considering I hadn't felt it before and I started to think he was probably right.

Next day the GP examined me and said she could feel the lump and that it was 'fully mobile' which is a good sign but said she would hate to miss anything (funny enough two nurses and a receptionist at the surgery have all recently had breast cancer) so booked me an appointment for the breast clinic at the hospital the following week. Another agonising week of waiting until the appointment.

At the hospital  I was examined by one of the breast doctors, an old American guy who looked like 'face' from the A-team! He sent me down to have an ultrasound. The ultrasound ladies told me that it was a fatty lump of tissue but to be on the safe side wanted to do a biopsy, they called a doctor in to do it who from her actions was quite reluctant and even question the ultrasound lady, this doctor assured me it was a fatty lump, told me the name of it and told me to Google it and what it meant! Meanwhile the ultrasound lady was insistent they do the biopsy just to rule anything out and so they did and off i went in pain from the biopsy but extremely hopeful that it was just a fatty lump, after all the doctor was quite sure that it was so it must be mustn't it?

Finally the 2 week 4 day wait for the results of the biopsy was over and sitting in the waiting room waiting for my turn I felt very sick. Ladies going in coming out smiling, ladies going in coming out looking shell shocked. Ladies who obviously had cancer, with wigs and scarfs on....I wanted to be anywhere but there. I turned to my husband after an hour of waiting (they were running late....all that bad news I expect) and told him I felt sick. Why? he says, whilst playing on his phone, totally oblivious to what was going on around him and that fact that the results could ever be anything other than negative.

So i get called in, sit down, doctor shuffles about with her papers......'so' she says....'your here for the results of the biopsy you had two and a bit weeks ago, and the results of the biopsy show that the lump is cancerous........and she just carried on talking and talking.............I felt my mouth open, you know in cartoons when the dogs jaw opens and hits the ground and its tongue falls out? well that's how I felt, like my tongue was hanging out of my mouth and my head was saying 'say what?' For a few seconds I couldn't look at my hubby and then I looked at him and he was looking at me with the same expression on his face and I knew this was real. All I could hear was Robodoc (that's what we later named her) going on about how great it was that I was her2 positive - what the hell? positive what? because I was going to get herceptin!!! She told me this like i had won the lottery...the next bit II heard was chemo....hair going to fall out....but you will get a wig...... my head was spinning, what the hell was this doctor telling me? I have breast cancer, I am her2 positive, I am having chemo, a drug called herceptin and the hair I have grown all year for my party is going to fall out??!!!! WTF?!!!!!

Next thing I know I am off to get mammograms done to recheck the lumpy breast and check the 'good' breast, 9 mammograms on the bad breast and 2 on the good breast later I am out of there and back in Robodocs office with Anna the breast care nurse. I then get told I am going for MRIs as something else has shown up in the 'bad' breast, this turned out to be 4mm DCIS and booking my appointment with the oncologist. I left there with my head spinning and piece of paper with my diagnosis which I didn't fully understand at the time and just knowing that in a week and a half I would be seeing my oncologist - I didn't even know what that was but I was guessing it was the doctor in charge of looking after me.

So off we went home, crying our eyes out at the news in disbelief that I a 39 year old mother of two aged 9 and 13 (now 14) who was super fit and healthy and just about to book a summer holiday without a care in the world looking forward to being super sexy at her 40th birthday party in January had cancer.

My poor hubby had to make the calls to my mum and dad, brother and auntie to let them know as I hadn't told them - didn't see the point -  I was told it was a fatty lump! what's the point in worrying everyone???? I had to call my two best friends as they knew something was wrong when I took time off work (boob really hurt after biopsy) as I never have time off and I didn't look ill to them so they managed to get it out of me. I had about ten missed calls and messages from each of them so had to make those calls and well, they ended up hysterical and crying and I had to tell them to calm down!

The week that followed was a blur, the family and my two besties Anna and Emma round almost every day, a lot of crying and a lot of laughing once we'd got our heads round it - still it didn't seem real and to be honest it still doesn't. I still don't believe that I have cancer, and when I catch my reflection in the mirror and see that bald head sometimes i forget and get a shock...

The few weeks that followed until chemo started were full of hospitals and tests, mri's, ct scans, oncologist appointments - who I might add is amazing and one of the leading breast cancer specialists in the country so I am very lucky to be under his care. more ultrasounds, biopsies, blood tests, picc line fitted, tour of the chemo unit.....and it just goes on...for someone that has never been in hospital other than tonsils out and giving birth twice all this hospitals and being sick malarkey was all new to me and i hated it and still do.

I am now half way through chemo and not doing too bad, I have high energy days and very low energy days, days of feeling happy and okay and days of feeling like the most miserable bitch in the whole world and days when I look at myself and think who is this alien, this bland looking person, this head, this thing that has taken over Andrea. And other days I slap my warpaint on and become Baldly Beautiful the image I have created to keep me going. When I was first diagnosed my husband said I should put my makeup skills (I am a fully qualified makeup artist) to good use and help other ladies like me going through chemo feel better about themselves, I poo pooed the idea but once treatment started I realised that he was right, I could help so many ladies and if I could help just one or two people feel good it would be worth it, so I decided to set up my own youtube channel and  do makeup tutorials for ladies going through chemo or finished chemo that were having to deal with the same beauty problems I would be and they could follow me on my journey. So far the response has been more than I could hope for especially from all the girls on the YBCN! I have received so many messages from people and not just from the UK from across the world saying how my tutorials have really helped and inspired them, which makes it so worth while, so at least while I am off work and going through the worst time of my life I know I am helping others feel good about themselves which makes me feel a tiny bit better.

At the end of the day this shit can happen to anyone, nobody is immune, nobody is too young or too old and it can happen when you least expect it. The moral of story is check your boobs, know what feels right and what doesn't, My lump seemed to appear out of nowhere, I did ask the doctors how did this happen? it wasn't there the day before or the day before that, did I strain something whilst exercising is that what made it pop out? is it because I lost weight and my boobs got smaller? They said the lump had been there a while as it was grade 2 but still caught quite early and was probably pushed to the surface when I came on and my boobs became lumpier and more tender than normal (I did come on a week after finding the lump) who knows how or why I just know that I was lucky that it did pop out from where it was hiding and I felt it and it was obviously there, had it not I probably would never have found it as I was guilty of not checking my boobs regularly at all and when I did it was just a quick what I would call 'rummage around'. At the end of the day no matter how young or old you are, check those boobies and check them regularly, it could save your life!

Oh and in case you are wondering, the 40th birthday party has been postponed to the summer when I will have a joint one with my hubby, I wont have hair half way down my back but at least I will have a bit of hair by then hopefully, be cancer free and looking and feeling fabulous. Not looking how I expected or would have wanted to look with short hair and maybe minus a boob but at least I will be here and be alive and that's all I can hope for and at this moment in time its something I can look forward to, reaching a goal in my life that I just assumed would happen, now its something I am fighting to achieve, for me, my kids, my husband and my family.'

Younger Women with breast cancer - Laura's story

Today's featured story is from Laura, aged 32:


'It was smack bang between Christmas and New Year 2013 when I started getting a dull ache in my right boob; it wasn't constant or overly painful, just annoying! But everyone gets aches and pains every now and then don't they?! I had a quick feel and couldn't feel anything sinister so just got on with things.

But the ache gradually got more frequent and intense and just two weeks later, where I had initially felt nothing, a small pea had appeared. These things come and go though I thought, must be my time of the month. Two weeks later I noticed that a lot of prominent veins had appeared on my breast in the same area; I had a feel again and what was a pea had now grown to the size of a grape.....

Now if you google breast lumps, I would say that maybe 90% of websites state that cancerous lumps are NOT painful, and that if your lump is painful, it is likely to be a cyst or a fibroadenoma (a benign lump) - nothing to worry about then maybe I thought? I'm 31 so it's not likely to be cancer now is it! I booked an appointment with my Doctor though just in case.

On the day of my appointment, the Doctor confirmed that she too could feel a lump; but she also believed that as it was painful and as I was so young, it was not likely to be anything sinister. Either way she referred me straight to my local Breast Care Clinic so I could be checked out thoroughly. My referral letter came through and I had an appointment at the clinic exactly two weeks later. In those two weeks, what had felt like a grape, now felt like a grape with a pea next to it......

I'm lucky enough to have a 'One Stop Shop' Breast Care Clinic in my area, which basically means that they do all the tests in one place, on one day. I first saw a consultant who confirmed the presence of two lumps and referred me for an ultrasound. The radiologist again confirmed the presence of two lumps and noted a swollen lymph node in my armpit. Two core biopsies and one fine needle aspiration later, I was free to go and asked to return a week later.

I won't deny, the wait was pretty torturous! But I also somehow knew what the answer was going to be and was therefore able to prepare myself. When the day finally arrived and the diagnosis was confirmed, I was basically ready to 'take it on the chin' and just get on with it! You see, despite all this, I am an eternal optimist and pretty stubborn! This was not going to stop me!

My Diagnosis? A grade 3 (fast growing) Invasive Ductal Carcinoma (the grape) next to a benign fibroadenoma (the new pea) but luckily no lymph node involvement.

Through all my subsequent treatments (which has included a lumpectomy, removal of two lymph nodes, 6 cycles of chemotherapy, and finally a double mastectomy with reconstruction as a result of a BRCA1 gene fault diagnosis) I have continued to work, dated, been to gigs, had great times with friends and met some pretty inspiring people along the way. Cancer does not have to be a death sentence, nor does it mean you have to put your life on hold! What is important is to ensure you get to know your body, be breast aware and never assume! Although I caught mine early, I could have caught it even earlier if I hadn't have been so dismissive of my body telling me things!'

Younger women with breast cancer - Sarah P's story

The first personal story I am featuring on my blog as part of breast cancer awareness month is from my good friend, fellow feminist and tumour twin Sarah Perry, aged 33:


More of Sarah's wonderful scribblings can be found on her blog.


'There were two things that brought me to the Breast Care Clinic at Glenfield Hospital for an ultrasound scan on 18^th July 2014. A wonky nipple, and stubbornness.

 

I’d spent the last 18 months obsessing over cancer – and with good reason. On my mother’s side of my family, just looking at the women across 4 generations, this is what my family tree looked like:

·         My great grandmother – died of ovarian cancer in her 50s. Had one daughter...

·         My grandmother – diagnosed with breast cancer at 59, died at 66. Had one daughter...

·         My mother – diagnosed with inflammatory breast cancer at 47, died at 53. Had one daughter...

·         Me.

It actually wasn’t until my mom died at the end of 2012 that I started to panic about this pattern of cancer. I only have a small family, so the numbers aren’t huge – three cases of breast/ovarian cancer across three generations. When you start reading information online about hereditary breast and ovarian cancer you’re told everywhere you look that most breast and ovarian cancers aren’t hereditary, breast cancer is so common in the UK (1 in 8 women) that many families will have multiple cases of breast cancer within a family and that doesn’t mean anything, and you need at least two close relatives to have been diagnosed with breast cancer (mother, daughter, sister) to be considered for genetic testing.

But when I sat and thought about it, I wasn’t reassured. It might only be three women in my family across three generations, but they were the only three women in those generations! And my mom was young at diagnosis. Plus the combination of breast and ovarian cancer was a red flag. So at the start of 2013 I went to my GP and made my case to be referred to the Family History Service.

 

To try and cut a long story short this is what happened: The Family History Service referred me to the Genetics Clinic who thought the pattern of cancer in my family was suggestive of a fault in either the BRCA1 or BRCA2 genes. I had a genetic test and got my result in April 2014. It was an “uninformative” negative. This means that no fault was found, but as no living relatives with cancer were available for testing, they didn’t know if this was because there was a BRCA fault in my family which I was lucky and did not inherit, or if the cancers in my family were caused by an as yet unknown genetic problem which I could have inherited.

 

However, I was told that while I would still be considered high risk, having no faults in my BRCA1 or BRCA2 genes was very, very good news – they were the most likely offenders in my family and the most dangerous genes when it came to risk of breast and ovarian cancer. I was told I should be happy! I should relax now!

Yeah well, I wasn’t happy and I didn’t relax. I’d done my research, and while both breast and ovarian cancer in a family suggests a possible problem with the BRCA1 or BRCA2 genes, the specifics of the cancers in my family (detail I won’t go in to here) didn’t fit the profile. I was convinced that the cancers in my family were hereditary, but caused by another genetic problem.

 

At this point I think the people around me started considering my cancer worry as a mental health problem rather than a physical health problem. Oh if I had a pound for every time someone (who didn’t really know what they were talking about) told me not to worry, that the test result was good news, and that I should just put it out of my mind I’d be a millionaire! (Ok maybe a slight exaggeration but I’d certainly have enough for a bloody good night out.)

 

But remember, I’m stubborn. I have a mind of my own, and when it’s set on something, I’m not easily swayed or fobbed off. And in this situation, this might just have saved my life.

In July 2014, just three months after my good news genetic test result, I noticed my left nipple looked kind of wonky. It was really subtle. I wasn’t even sure myself if it had just always been that way or not. But being the cancer-obsessed-panicker that I had become, two days later I was showing it to my GP. She wasn’t worried, if there was a change it was probably hormonal and she said she’d look again in a few weeks. I went away. I wasn’t happy. I am stubborn. I called back and insisted on an urgent referral for an ultrasound scan to check it.

 

And that’s how I ended up at the Breast Care Clinic on 18^th July for an ultrasound scan. A wonky nipple, and my own stubbornness. I had so many supposed reassurances – I definitely didn’t have a BRCA fault, I was only 33, the nipple change was subtle and no one could even feel a lump – but none of this mattered to me. I knew I was next on cancer’s hit list and I wasn’t going to ignore even the tiniest thing. The ultrasound scan which I was having for my own “peace of mind” (to shut me up) clearly showed a gnarly cancerous tumour. There was no mistaking it.

 

This was the one time in my life where I would have liked to have been wrong. I’d have liked nothing more than to have looked like a silly idiot that day, to have been over the top, to have to apologise for wasting people’s time. But (as always!) I was right. It’s a good job I was stubborn, it’s a good job I insisted on getting it checked right away. Time is everything when it comes to cancer. The earlier you catch it, the better.

 

If there were three things that I would want anyone who has read this far to take away from my experience they would be:

·         When it comes to your health, don’t ever, ever be fobbed off by anyone, including the doctors and experts. If there is something you are not happy with, or not sure about, get it checked. And if necessary, get it checked again, and again, and again, until you are satisfied. If you have a gut feeling about something, even if it doesn’t make sense or you can’t quite put your finger on it, you should listen to it and trust it.

·         Not all breast cancers are identified by a lump. Be aware of all the signs. Mine was a wonky nipple. My mom’s cancer was inflammatory breast cancer – signalled by changes to the skin. Know your own body well, know the signs well, be vigilant. Then if there are any changes caused by breast cancer, you’ll spot them early and probably save your own life.

·         Be aware of your family history of cancer. Don’t panic about it – most breast cancers really aren’t hereditary. I’m in an unlucky minority. But it’s sensible to be aware of any cancers in your family, so that if a pattern does emerge, you can let your GP know and take it from there.

Anyway, if you’re interested in any more of my own story, I’m blogging over at hbocuninformed.blogspot.com. I’m writing about hereditary breast and ovarian cancer, and my own experiences since a cancer diagnosis. If you have any questions about hereditary breast and ovarian cancer please contact me via my blog, I’ll be happy to try and help if I can.'

Breast cancer awareness month malarkey.....

As many of you may know, October is breast cancer awareness month. Cue the saturation of the world with all things pink for four weeks.  But for what purpose? I mean, everyone knows about breast cancer right? It’s the most common cancer in the UK. Around 55,000 people are diagnosed with breast cancer each year. One in eight women will be diagnosed with breast cancer in their life time. The openness and honestly of celebrities like Kylie Minogue have ensured that breast cancer has appeared on the public’s antennae and stayed there.

I know that breast cancer awareness month provides excellent opportunities for charities to raise awareness about their services, to increase donations, gather support for campaigning work and to reach out to those who may be in need and I fully support that. I can’t help feel however, that sometimes the real, important messages about breast cancer get lost in the plethora of pink and tits. The amount of times I've heard 'well, its not that big a deal now a days is it?' scares me. And breast cancer is often sexualised like no other cancer – I refer to The Sun's Check 'Em Tuesday and the Playboy Club London's #bunniesinpink as examples.  I don’t even want to think about the photo of the ‘save second base’ t-shirt I recently saw on Twitter…

So, in the midst of all things pink, I want to provide you with some information and facts about breast cancer, some taken from brilliant websites like Breast Cancer Care and Cancer Research UK but also personal, from the heart stories. I want you to hear from young women who have been personally affected by breast cancer – about the signs they spotted, how they were diagnosed and their treatment.  I want to raise awareness that no one is too young to get breast cancer and that every young woman should be vigilant regarding any changes to her body.  I want you to hear from the heart what it means to be diagnosed with this disease and the effect that it has on your life. How all of a sudden you are plunged in to a whirlwind of tests, scans, results, hospital appointments and gruelling treatment that leaves you feeling like you no longer recognise yourself anymore and that the person you once were has been lost forever.  That breast cancer is not all ribbons, fluffy teddies and pink tea towels. 

But I also want you to share in the pride and awe that I feel regarding my wonderful friends from the Younger Breast Cancer Network. Many of these women I have never met in person but yet every day I know they are just a keyboard away, willing to take the time to respond to any fears, concerns or rants despite battling through diagnosis, treatment and the aftermath of breast cancer themselves.

So, during the month of October, as my contribution to breast cancer awareness month, I will be featuring a number of personal stories written by some of these wonderful women on my blog. I hope you find them as bloody fantastic as I do.

FEC off!

I'm back! I apologise for the radio silence but I've had a bit of a pants few weeks what with being sent for more tests and having to wait for the results. So much so I've been almost unable to think about much else let alone write. But thankfully the results came back ok - I have to say I have never felt relief like it. Funny the things you get happy about after a cancer diagnosis! However, as always in the back of mind I know that this will not be the last time I ever have to deal with something like this again (far from it) so I need to find ways of managing the Canxiety. Maybe it'll get easier as time goes on who knows? Ugh.


Anyway, I just wanted to let you know I'm halfway through my chemo sessions all being well. Yey! No more FEC!

This photo was taken at the beginning of my last chemo on Tuesday. I think in all honesty I've had  a pretty easy ride with FEC which makes me nervous about the next lot - the Docetaxel (or Taxotere). With FEC, my side effects have been mainly a bit of a floaty head at times, feeling tired and having a bit of a sore mouth on occasion which has easily been sorted with Difflam. I've still managed to run - one week I did 16 miles - and I went in to the office last week a couple of times. No sickness and only a very short period of nausea after the first one. Oh yeah - and my hair has fallen out but nothing they can give you for that unfortunately! I have some pretty awesome wigs though :-). I've more or less been functioning pretty normally although the tiredness seems to have hit quite badly this time. I look and feel bloody knackered. Oh and my veins are screaming. The photo above was taken when the epirubicin was being administrated. You can see it snaking its way down the tube in to my arm. It's nasty shit that stuff. I guess it needs to be though. I call it the red devil. Its done this to my veins:

Meh. Lets hope it's annihilating my tumour as much as it is my poor sore veins!

Anyway - on to the Tax (as it's affectionately called) next time. I've heard it can be considerably more taxing than FEC ('scuse the pun). I'm worried my easy ride with FEC could be the calm before the storm. Side effects of Tax can include more tiredness, tingling in hands and feet, fluid retention, muscle and bone pain and yet more hair loss. I still have my eyebrows and eyelashes so far which I would really like to hang on to!

But you know what - chemo is shit there is no denying that and there are times when I get incredibly frustrated and upset that my body sometimes doesn't do what I want to anymore. But ultimately I am so glad that I am being equipped with this arsenal in my fight against this crappy cancer. So come on NHS, in the words of Britney - hit me baby one more time (or three more times at least ;-). 



Support and Superwomen

So I’d like to give this next post a slightly different flavour and focus on some of the positives (yes, you read that right) since my diagnosis of breast cancer.

One of the first things I did after my diagnosis was tell as many people as I possible. I know that not everyone deals with it like that, but I just wanted it out of the way. I felt there no way I could just pretend that everything was ok and hide it from everyone around me. In my head I now had a massive neon pink sign (yes pink – it’s the colour of breast cancer don’t you know?) above my head pointed at me saying ‘person with cancer right here’.

I had some lovely, supportive responses and have continued to receive lovely kind messages since then from a number of those people. I’ve had offers of help and displays of kindness from some unexpected sources.

Two days after my diagnosis, I decided last minute to run the Race for Life, which was an incredibly hard thing to do. It was only 5k which is a very easy distance for me physically but the emotional toll was far worse. I will admit a few tears were shed before the race began. I received some incredibly generous donations from people for my efforts, all of which go to Cancer Research UK, an organisation that works continuously to find new and pioneering treatments for cancers like mine.

I’ve had some frank conversations with friends about how much support I’m likely to need over the next few months. I very rarely ask for anything from people, both emotionally and practically, so this is going to be very hard for me. But luckily, I have some amazing friends who I trust to be there for me at the hardest time of my life.

One of the first things I did when I was diagnosed, was call Breast Cancer Care who run a service called Someone Like Me. They can put you in touch with a volunteer who is a few years down the line since their diagnosis, but in a similar position to you. Within a couple of hours I had a call from a volunteer who was diagnosed when she was 30 (she is 34 now) and had an incredible frank and open conversation with her which made me feel so much better (well as much as I could do at that time). She now rings me regularly and it is so helpful to discuss what I’m going through with someone who has been there and has come out the other side.

She also mentioned a network on Facebook for younger women with breast cancerFacebook network for younger women with breast cancer. Yes! Facebook is actually good for more than just repeated updates about what you’ve had for dinner, your child’s toilet habits and photos of drunken nights out! The network has over a 1000 members now and is quite possibly the best thing I have ever found on the internet. Until now, I have never appreciated how wonderful women are and the strength and support that they can provide. These women are all at different stages of their journey – at diagnosis, active treatment and beyond and are going through some awful times but still have the time and energy to speak to others about their fears and concerns.

I recently met up with a member of the network I had been talking to for a while, an incredibly brave lady (she won’t like me saying that!) who was diagnosed on the same day as me. It was wonderful to meet her, albeit only for an hour before she went wig shopping. However, I had a massive anxiety attack and ended up throwing up all my tea and cake outside the café. But if anyone is going to understand it’s her right? This is the beauty of that network. There is no judgement, no concern or question is too silly or too small and there is always someone there to talk to day or night. They truly are Superwomen and I am so, so grateful that I have found them.

Feeling the Fear (and other things)

NB: I wrote this post 2 or 3 weeks ago closer to my diagnosis so it may sound very bitter in places! Just putting that out there....

There are a whole lot of feelings and emotions after a cancer diagnosis. For want of a better description (yes, I’m falling back on clichés again) it’s a rollercoaster. Just not as fun. Although, considering my absolute fear of heights and strong aversion to rollercoasters, perhaps it’s slightly comparable. It’s also exhausting. Like a rollercoaster you have to peddle yourself. Despite having one of the most serious illnesses around, I don’t feel ill (although this will be very different once treatment starts!). I just feel exhausted. Mainly due to the insomnia and this sodding pedalo rollercoaster.

I’ve tried my best to expand on this rollercoaster below:

Fear

This is probably the overriding emotion right now – The Fear. It ranges from moments of total abject terror to an ever present level of anxiety. Let’s call this Canxiety (see what I did there??). I’ve always been an anxious person, only now I really have something to be anxious about! This Canxiety is ever present at varying levels and quite regularly stops me sleeping even though I’m bloody knackered what with pedalling this bloody rollercoaster.

The moments of total terror hit when they just feel like it really. The most recent one was in the middle of a restaurant when I burst in to tears and just kept thinking ‘I’m going to die aren’t I? This thing is going to kill me’.

They quite often also hit in the middle of the night, leaving me wide awake at three in the morning with my own mortality staring me in the face like some effing terrifying poltergeist.

The Fear is there constantly, all the time. It never ever goes away. I wake up in the morning and the first thing that enters my head is ‘I’ve got cancer. Sh*t. I‘ve got cancer’. It’s the last thing in my head before I got to sleep (although sleep is not that forthcoming right now!). It’s there all the time, ever present, with depressing and anxiety inducing thoughts running through my head like some demonic sodding hamster on its wheel (my brother used to have one of these – its eyes glowed red and made the most awful noise like an animal possessed.)

Every so often I’m also stopped short by the thought that this thing is still in my body. This unwelcome lumpy guest, this invader. My initial reaction was to fall at the consultant’s feet and beg for them to cut it out there and then. I wanted to take a knife and hack off my own boob. I still feel like that sometimes (cue the hiding of the kitchen knives).

I’ve started having panic attacks too. They hit when I least expect them. I won’t even really be thinking about it too much. Then my head starts swimming, I start panicking and I can’t breathe. I also get the shakes and look remarkably like Peter Barlow currently does on Coronation Street. They go off. Eventually. 

Everyone is going to die right? But it’s not something you dwell on every day, all the time, hanging over your shoulder like a rather possessive and clingy boyfriend (unless you’re a Goth, I guess). Unless you’ve been given a cancer diagnosis. Then its massive slap in the face, a huge screaming wake up call, it invades your thoughts all the sodding time. And as I said, it’s bloody exhausting.

 Guilt

I feel guilty. A lot. This diagnosis doesn’t just affect me, it affects everyone around me. I feel guilty that at least for a few months I’m probably going to be taking a lot more from my friends and people who care about me than I can possibly give back. I feel guilty that I am going to have to take people up on those offers of ‘if there is anything I can do please just let me know’. For someone who rarely reaches out to anyone for anything, this is going to be incredibly difficult. I feel guilty that I’m not going to be the same person I was before all this shit and worried that people around me are going to get fed up and walk away.

I feel guilty about what this is doing to my parents. How I can see my mum’s heart breaking and can’t do anything to make it better. At no point did I ever envisage this happening. My parents are old age pensioners, my dad's almost 70 years old for Christ’s sake. I should be the one looking after them at this stage in their lives. Yet here we are, with my mum driving up and down the M1 on a regular basis to ferry me to and from my plethora of hospital appointments. It’s not dignified having to have your mum shower you and wash your hair at 32 years old because you can’t move your arm as someone’s had a good old dig in there and pulled out some of your lymph nodes (more about this later). And that’s only the tip of the iceberg. There is a lot, lot more of this type of thing to come and letting go of the guilt is going to be very, very difficult.

 Anger

I used to be quite an angry person, although I‘ve mellowed a bit as I’ve got older. But cancer turns you in a massive green incredible hulk. I’m angry right now. You probably wouldn’t like me when I’m angry. But tough titty!

I’m angry about the injustice of it all. At the risk of sounding like Harry Enfield’s Kevin, it is SO UNFAIR!!

I’m 32 years old. I should be thinking about how I can climb that next rung on the career ladder, worrying about how I’m never, ever going to be able scrape the deposit together to buy a property by myself, ranting about the fact that so and so in the office never washes their own cups up, getting excited over the next date with someone a bit special, pondering over whether the outfit I’ve chosen for Friday is a little too over the top for our chosen venue or spying on my ex-boyfriends profiles on Facebook and wondering if that girl he’s just added is his new ‘love interest’ (this is all hypothetical, by the way). I should be having those moments of pondering the nature of existence in a first world problems kind of way – e.g. is this all there is to it? Should I pack it all in and do a belated backpack around the world thing? Or volunteer in some deprived country to help people worse off than myself? Blah, blah, blah. Instead, I’m facing months of gruelling treatment, illness, uncertainty, fear and essentially a fight for my life.  At 32 years old. And it’s so, so unfair.

I’m angry at people around me saying and doing the wrong things. I know this is harsh and irrational and cancer is not an everyday occurrence so no one knows really what to say or do when faced with it. I know I wouldn’t have if it was someone else close to me in the same position. But really, I don’t feel like I have the energy to deal with other people’s inadequacies right now. And people who know better than me. That’s really annoying. ‘Well, how do you know you’re going to lose your hair? So and so had chemotherapy and they didn’t lose their hair’. Trust me, I know. I’ve sat up hours and hours reading and talking to other people in the same position. I didn’t just get handed this diagnosis and skip off in to the sunset with the intention of staying in a state of blissful ignorance. Although, I am going to stick a caveat on this and say that I also have a lot of lovely people around me who have been just fabulous and supportive.

I’m angry at life just going on around me when I’m stuck coping with this shit. I’m angry at people who still have normal, cancer free lives. Angry at people posting on Facebook about what holiday they’ve just booked, or what a fabulous time they are having with their BFF at so-and-so’s wedding, or how many weights they’ve just managed to lift or how fucking tired they are. Yes, I know is more irrational, unfair anger but you know what? Life isn’t fair. If there was ever a time when I should be allowed to have stupid, nonsensical, being mad at things I shouldn’t be moments, then this is it.

I’m angry at the doctors who sent me away last year. I’m angry at myself for trusting them and not pushing to be sent for further tests. My consultant says she doesn’t think the lump has been there for a year as she would expect it to be bigger, but that really we won’t ever know. This bad boy doesn’t always do what you expect it to. According to my oncologist, tumours can be growing for up to 8 years before you actually feel them. Shiiiiiiiiiitttt!!

I’m angry at stupid bloody ‘breast cancer awareness’ games on sodding Facebook. Really? How is posting cryptic statuses about using your boobs getting you out of speeding tickets supposed to raise awareness of breast cancer? Maybe I should respond with ‘well at least one of yours isn’t trying to kill you’. What a load of effing toss. Donate to Cancer Research or spend 10 minutes checking your boobs whilst you’re laid in bed this evening and text your friends to remind them to do the same if you really care about breast cancer awareness. Don’t sit there using it as it gimmick to play silly, vacuous games with your mates on Facebook.

I’m angry about what this bastard disease has already taken away from me and what it may take away from me. My health, my fitness, relationships, friendships, possibly my fertility, my social life, my hair …… my future as I saw it.

Cancer is a bitch. Its sneaks in and f*cks everything up. It steals all your plans and the way you saw things panning out. It creeps up behind you and rugby tackles you to the ground. And then give you a well-aimed kick in the head for good measure. I’ve had many ‘why me?’ moments. ‘What did it do to deserve this?’ etc. etc. I haven’t always looked after my health the best I could have (I was a university student, come on! I lived off pints of snakebite and black and Super Noodles), but ironically my diagnosis has come at a time when I am the fittest I‘ve ever been. I stopped smoking and started running two years ago. I ran a number of races last year, including two half marathons. I recently smashed by PB for the 10k distance. I run about 5-6 times a week. I can’t remember the last time I had a cold. I have so much more energy than I used to. Cancer isn’t picky. It’s completely indiscriminate. It doesn’t care who you are, where you’re from or what you did. Bit like the Backstreet Boys, only considerably more lethal.