Showing posts with label Scans and tests. Show all posts
Showing posts with label Scans and tests. Show all posts

Sunday, 25 October 2015

Breast cancer awareness month: I can and I will


Author: Tania
 
I CAN AND I WILL

My breast cancer journey so far


So this crazy journey of mine all started on 9th April 2015 when I felt a lump on my right breast when drying myself after a shower. I’m embarrassed to admit I’ve never checked myself. Guess I never believed something like this would happen to me.… I’m a good person (or certainly always try to be!), I’ve had lots to deal with in my life already, there’s no history of breast cancer in my family at all and I’m only 40 – surely I’m too young!? So, thought I’d give it a week or two as my breast size always changes during my monthly cycle … nice thought but it was still very much there. So off to the Doctors I go. A very helpful Nurse measured a lump approximately 1.5 cms and urgently referred me to the Breast Clinic at my local hospital.
I thought no more of it and carried on as normal – just giving work the heads up that I would need to attend a hospital appointment and carried on in my happy little bubble. 5th May 2015 soon arrived and I found myself in the waiting room for the Breast Clinic, surrounded by leaflets on cancer and Nurses rushing back and forth from consultation rooms. Not entirely sure what to expect and certain that the news would be good, I sat there on my own (my Mum offered to come with me but I told her I didn’t think it necessary) surrounded by varying aged women. My name is called and I’m taken into a consultation room and greeted by the Doctor and a Nurse comes in too. Crumbs – this feels serious! The kind-faced Doctor gave me an ultrasound. Straight away the look in his eye confirmed my worst fears and told me everything I needed to know without saying a single word….. This was real. I’ve got cancer! I can still see that look now, clear as day. I saw a look of sadness. I vaguely remember the lovely Nurse passing me tissues, the Doctor mentioning a suspicious lump and that I would need further tests to make everything certain – something about being only 95% certain and a possible mastectomy. The kind Doctor then tries to help me recover by engaging me with questions about my work and children, bless him.

BOOM! The bottom has just fallen out of my world.

At that point all I can think about are my babies (my beautiful little children then aged 6 & 8). My head’s spinning and my mouth dry. Got to hide my tears as I wait, back out in the same waiting room, for my radiology appointment. The lovely Nurse hugs me and rushes away to sort my appointment.

I hold my breath. Be brave Tania, people are watching.

Provisional appointment sorted (all dependent on monthly cycle) and I head home. Here comes the difficult bit. To tell my Mum – the one person I have never been able to hide any sadness from. As soon as I see her face the tears roll again – there’s no hiding this immense sadness and I’m filled with a guilt ... a wish that I didn’t have to put my Mum through this. My dear Mum who went through so much to successfully beat cancer of the mouth back in 2006. A truly amazing lady who will always be an inspiration. I ask that she remains brave (a big ask I know) and am so grateful that, to this day, Mum continues to attend every meeting, always by my side, such a massive help and is so very brave (in front of me anyway bless her).

Shortly after I arrange to meet with my children’s Father (now ex-husband). Talking about it and hearing myself say the words just make it so real. He remains positive.

So glad I am able to hide this sadness from the children.

Then the waiting starts. I am now over half way through this BC journey but can honestly say I have found the waiting the worst bit. Every night spent wondering how bad it is, what I’m going to be faced with, my body aching as I lie in bed wondering if it has spread and, morbidly, how long will I have with my beautiful children? Will I share the happy milestones and be by their side, holding their hands, through any sad ones? The unknown. All sorts of thoughts cross my mind and I fight the temptation to search `Google’ for answers (believe me, never a good move!). Waves of panic pass over me at random times and I do my best to keep a brave face. Work is a welcome distraction and I’m honest, right from the beginning, with my brilliant colleagues of what lies ahead. Talking to them allows me to put on a brave face. Must be brave.

The tests begin a week later …. Ultrasound, mammogram, biopsy. What an amazing team of highly trained professionals who absolutely know what they are talking about and are so very kind. The mammogram highlighted another suspicious `calcification’ on my other (left) breast. So along came the core needle biopsy (which wasn’t as bad as I thought it would be – apart from the noise). I made sure I didn’t watch at all and it helped having Mum holding my hand. The radiologist was 95% certain the other side was just a cyst. I asked them what would make them 100% certain (I wasn’t comfortable with the idea of just keeping an eye on it on a yearly basis) and the radiologist advised fine needle aspiration would confirm. So I asked her to stick a pin in it. I need certainty. Yay! It dispersed. It was just fluid. Tears of joy fill my eyes, Mum’s too, as we’re back to dealing with the just the one lump again. Happy days!

More waiting ….

And so on 20th May 2015 I was diagnosed.

‘Invasive ductal carcinoma right breast. T2 (28 mms). G3 N0 ER and PR weakly positive HER-2 neg. Treatment: Wide local excision (lumpectomy) Central node biopsy. Adjuvant FEC chemotherapy, to be followed by radiotherapy and Tamoxifen’

‘N’, the breast care nurse, was amazing. I can still see her kind face telling me “Out of all of this, just take away the message that this is curable”. I hold on to that thought every day. Thank you ‘N’, you truly are an awesome lady. And thanks for always finding the time to pick me up despite your incredibly busy day xx.

Finally I know what I’m dealing with and there’s a plan. Gotta’ have a plan. I’m given heaps of leaflets too and a little book for the children. Must admit I never used the little book. My children’s Dad and I agreed on how we’d tell the children, in a light-hearted conversation about Mummy’s lump in her boob and how I would need an operation. A step at a time. We agreed we wouldn’t use the cancer word at this point (just personal preference) and that when the time was right I would tell them – with their Dad providing support and consistency where required (Grandparents too). The school were also brilliant and we’ve continued to keep them updated throughout this journey. This has really helped.

And so the research starts… I set about reading up on everything – know everything I possibly can about this disease. I must get through this, pass the test and therefore start revising as much as I am able. This is an examination that I simply must pass. Crumbs – how much information is out there!

Two weeks later an MRI and dye injection. What an experience! Having visualised and prepared myself for lying back in the scanner (like I had for a previous MRI), the Nurse asked me to climb on all fours and place my boobs in the holes in the scanner. I couldn’t stop laughing… Was not expecting that … More laughter! Followed by a warm fluid pumped through my body whilst lying on my front in the chamber that made me feel like I’d wet myself (Really!?).

Surgery followed two weeks later. I was really nervous about the anaesthetic but was reassured and it was surprisingly a very calming experience. I didn’t have any pain either – which I was amazed at – and met some fab ladies on my ward, each on similar journeys. Friends that continue to help and I’m able to share the experiences with. We had such a giggle on the ward that night. I felt so relieved that the cancer had been taken out and couldn’t stop giggling (well at least until the ward staff told me off at midnight). Ooops!

On 25th June 2015 I was given the all clear “T2-M0-N0 Stage 2a 28 mm”. What amazing news. I am so truly grateful. I feel blessed. No sign of cancer in the margins nor in my nodes (only 2 were removed). I still couldn’t believe it – at least not until I received it in writing. My cup runneth over! I am now able to tell the children “Mummy has had cancer but it has now gone. It’s not catching and Mummy just needs some nasty medicine that will make her hair fall out to make her better”. To which my son replies “Okay, what’s for tea?”. I’m so proud of my children for their resilience and they continue to be my biggest strength throughout all of this.

So, back to work I go, feeling normal again. Various pre-assessment meetings follow, taking me to 14th July 2015 when I receive my 1st of 6 cycles of FEC chemotherapy. Sent away from work with some fantastic, really thoughtful gifts from my wonderful colleagues, the next stage begins. Off I go to the Macmillan ward. I felt anxious as I didn’t know what to expect but was greeted by some fantastic, very friendly staff that knew exactly what to say and do to make me feel at ease. I am 4 (of 6) treatments in now and the team are so very friendly. We have a real laugh. A lovely lady once told me it’s like getting a hug when you go for your chemo – and that has remained so very true. I am truly overwhelmed by the fantastic staff I have met. They make the journey that little bit easier. Even my trip to A&E 10 days after the first treatment I was looked after so well. I managed to pick up a chest infection – always a weakness of mine. An hour’s IV of antibiotics and I was soon back home. I realise each and everyone’s treatment is different and I also realise I’ve been getting away with things relatively lightly – escaping the sickness at least. I’m very grateful for that.

Whenever I feel low about the chemo or whenever I’m getting ready for the next round (annoyed by the fact that I’m feeling normal again and not wanting to go through `the dip’), I remember why I’m doing all this… the 7% it gives towards the 84% possibility that I’ll have survived this in 10 years’ time. 10 years or more with my babies – that is all I think about. That is what gets me through.

So, the next hurdle and the one that everyone seems to worry about – the dreaded hair loss. 18 days after my first treatment my hair started to fall out. I made the decision to have my hair cut short before I started any treatment just so I could get out of the habit of needing to put my hair up. It was an emotional day but I was glad that I could cry about it at that point rather than be faced with another issue to deal with alongside the chemotherapy. As soon as my head started to feel sore I went even shorter to a grade 1. At least when the hair started to fall out it wasn’t so much to deal with. I’ve actually found being bald invigorating. I had a panic attack the first time I left the house with a bald head but people don’t stare half as much as I expected they would and actually, most stares are joined with such sincere, genuine smiles. I always wear scarves when I am on school runs as the children are more comfortable that way and I totally respect that. But can’t wait to take the scarf off again whenever possible. My dear friend Simon and I had a real giggle trying on wigs, hats and scarves. We had such fun and it made me feel so much more prepared. I just can’t get used to the wig though. I just don’t feel or look like me when I wear it.

Losing the hair on my head was never really an issue. I worried about waking up one day and finding it all on my pillow but that never really happened – it fell out over a few weeks. My struggle has been the thinning eyebrows. I’ve got used to seeing my bald head in the mirror but really don’t like the really thin, almost invisible, eyebrows. It makes me look like a cancer patient … the irony!

A fantastic course was made available to me “Look Good, Feel Better”. And I highly recommend anyone going through this type of treatment gets themselves on the course if made available. Very helpful and a real confidence builder.

The PICC line isn’t so bad either … I was quite squeamish about it at first, the whole idea of where it goes and how it’s done didn’t inspire me but within a few weeks I found myself completely used to it and I forget it is even there. I’m even able to sleep on it at night and sleep in whatever position I’m most comfortable nowadays – perfect! Don’t get me wrong, I’m still counting down the days for when it comes out (I truly cannot wait!) but it’s not so bad (honest!).

So, where is the good in all of this? Well …..

* I got to spend the summer holidays with my children – a gift I have never been blessed with having worked full time since having them. I’ve become even closer to my family (didn’t even think that was possible).

* My perspective on life has changed and I never take things for granted. Things such as trees and sunshine are now much more of a pleasure; it’s opened my eyes (even though they constantly run – just another one of the side effects) to a more beautiful world. I love the feel of the wind on my face and I don’t rush around half as much as I used to. I feel truly blessed.

* I’ve found out who my friends are (and who aren’t). A constant support. A special mention to; Simon – my barber, wig test dummy and chilli provider (so wonderful when you can actually taste the food!); Clare and Julie for arranging the best halfway celebration in London. I even got to meet my favourite comedian (could not stop crying after that!) and for always being there, sending me notes and making memories to make me laugh. I have laughed so much with those lovely ladies that my stomach and jaw hurts – often!; my step-dad Pete for doing all the injections, mowing the lawn and listening to my rants on my cross days (yes, there have been some!); Dad for the confidence to ditch the wig; Lou for the wonderful, much needed trip to Stanage Edge (I did it – the air felt good! Another one ticked off the list); Auntie V for all the fab goodies; Reidy for the endless supply of mints and encouragement; my amazingly supportive boss – boy what a difference that makes not having the extra worry of work!; all my BC friends I’ve met along the way for their love, encouragement and absolute inspiration (Love to you all amazing ladies xxx) and to all my dear friends that meet up every 3 weeks for fun, laughter, support and hugs. Where would I be without my dear friends xxx

* I have laughed more than I ever thought possible and cried less than I ever expected.

* I feel proud.

* I am able to love more openly.

* I’ve not worried about the smaller (blue!) boob or the scars at all – it’s just a reminder of how strong I truly am and how I kicked the nasty stuff into touch. I’m still me.

Don’t get me wrong, there are some not-so-good bits too…. I realise I will never be the person I was pre-diagnosis and of course, there is always the possibility of recurrence (although I put this right to the back of my mind it is something I must accept). A very independent person, I hate having to rely on people (although I couldn’t get through any of this without them). I am beginning to accept that I may never meet that person, that special man in my life – cancer is enough for me to comprehend, leave alone someone else. I have also lost the ability to plan for the longer term. Hopefully all of this will pass in time. Worst of all, my children have had to deal with things that I wish they never had to. That still makes my stomach wrench whenever I think about it.

I realise its early days. The good far outweighs the bad though and right now I’m just focusing on Christmas when, all being well, all treatment will be finished (except Tamoxifen) and I can see the New Year in putting this chapter behind me. My family, friends and I are already planning some great ways to celebrate and we’re all looking forward to seeing how my hair will look when it grows back (we’ve had some real giggles about that I can tell you). I’ve even signed up for a 100ft abseil down the side of my local hospital to raise some funds – alongside my wonderful friends (eeek!). A way of giving something back and saying thanks.

They say everything happens for a reason and I truly believe that. I hope one of the reasons is I can show my children (and others) that you really can overcome challenges such as cancer (as my Mum has already shown) and that despite the difficulties life really can go on. I am blessed with some truly awesome people around me and have never felt so loved. Lucky me!

To anyone going through a journey like this I send you much love and light. Be brave and be positive. And to those who are supporting someone going through a journey like this (like my wonderful family and friends) you really are making a difference, truly you are. Massive hugs to you all too.

Keep smiling,

T xxx



* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
Write for the blog! This blog is one of a series being shared on the Young Women's Breast Cancer Blog UK during October, breast cancer awareness month, but the blog is here year round. If you are a young woman in the UK who has/had a breast cancer diagnosis and you would like to be a part of this blog, please have a read of the additional information here.

Check your breasts
Breast cancer can happen to any of us - regardless of age. Information about how to check your breasts can be found on the Coppafeel and Breast Cancer Now websites.


Further information and support:

Younger Breast Cancer Network UK - an online chat and support group for women under the age of 45 in the UK who have had a breast cancer diagnosis.

Baldly Beautiful - a YouTube channel with make up demonstrations, created by Mac makeup artist Andrea Pellegrini who went through chemo herself in 2014.

Take A Moment - This is a group for women (all ages) who have/had breast cancer who want to explore, reflect on and express their feelings and experiences through photography. This is a link to the public page - to join the group, send them a message.

The Osborne Trust - Providing children of parents with cancer the opportunity to access time out recreational activities whilst their parents undergo operations and treatments

Jen's Friends - Free heart-shaped pillows for women (and men) with Breast Cancer. Designed to provide comfort and protection after a Mastectomy operation.


* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Monday, 12 October 2015

Breast cancer awareness month: Cancerversary

Author: Harriet

This post is from Harriet's blog "Breathless Bird" at https://harryhatd.wordpress.com/.

So here I am. I have been meaning to do this blog malarkey for a while. In true Harriet fashion I have thrown myself headlong into writing this without reading the instructions, so if anyone but me ever gets to read this it’ll be a miracle.

Tomorrow it will be a year since I went for a routine chest X-ray after feeling a bit under the weather with a horrible, sick making pain in my left shoulder and a bit of a sharp pain in my chest. It’s fair to say things went t*ts up from the moment I had a message from the G.P that same day asking me to call him ASAP. Those of you reading who have experienced serious illness will know that this type of message is never going to lead to a happy ending. A friend of mine on my support group describes perfectly that when she gets bad news it is always accompanied with ‘a good dose of side head’. Well, you could virtually hear the damn side head in the message.

Basically, a rather large tumour on my left lung had taken its opportunity to say hi. We have no idea how long it had been there, but probably a long time. Contrary to popular belief, following treatment for primary breast cancer, you do not have follow up scans unless you present with symptoms. I was 13 years post treatment for primary breast cancer and until this point had been really well.

Scans revealed that my visitor had taken up residence in both the upper and lower lobes of my left lung. A very keen eyed Radiologist also spotted something (else) untoward on the first CT and after a lot of discussion, many needles being inserted into my neck, one massive needle going into my chest and into my lung (awake and unsedated – brave soldier points please) and pathologists doing their stuff, it was agreed that I had 2 separate cancers: oestrogen receptive metastatic breast cancer (my lady hormones are murderers) and papillary thyroid cancer.

When you live in the cancer world there is virtually a whole other language that you become aware of. Two words I have learned are ‘cancerversary’, when you acknowledge the anniversary of diagnosis, end of treatment or whatever you want to mark, and ‘scanxiety’ which occurs as you await scan results…something that could easily replace many forms of torture.

So, on my cancerversary I am trying to get my head round the last year. And I can’t. I don’t think I ever will. The harsh truth of my situation is that I have been diagnosed with an incurable disease that will shorten my life. I have been ridiculously lucky for someone with secondary cancer, in that I have been able to have surgical intervention to remove the cancer we know is there, but it is expected I will relapse. We desperately hope that will be a very long time away, but we also know that it might not be. Our lives are lived from scan to scan, experiencing…..you guessed it…scanxiety!

It is utterly impossible to fully articulate the past year. I have thus far tried to do it to a certain extent in a number of Facebook posts to which I have always had wonderful supportive responses. I find that it helps hugely to talk about my cancer, and frequently make massively inappropriate jokes about it (I’m allowed see). I could write a huge amount each day about how I feel, and believe me somedays it would be VERY interesting reading. But in summary, the last year has seen the following that is quantifiable:

6 chest X-rays
5 CT scans
1 PET scan (a specialist scan on which active cancer ‘lights up’)
1 MRI scan, during which I couldn’t stop thinking about Madonna falling offstage at the Brits, which isn’t good when you can’t smile or laugh
1 PICC line in my arm for 4 months
6 courses of chemotherapy
1 full head of hair disappearing
40 odd headscarves (became an obsession)
144 pre and post chemo steroids
1 beachball face and steroid related bloating
18 days throughout chemo of acting like a Yorkshire terrier on speed due to the steroids
2 weeks after each chemo wanting to rip my own skin off
12 bottles of tonic water as normal water was revolting during chemo
7 nights in 3 different hospitals
2 general anaesthetics
1 lung removed (well, they left me a teeny bit)
1 thyroid removed
28 lymph nodes removed from the left side of my neck
14 nodes with thyroid cancer in them
1 node with breast cancer in it (damn you sneaky bugger)
2 post surgery drains
2 catheters (sorry)
1 morphine pump
1 gangsta neck scar
2 suspected blood clots
2 A and E visits
1 personal care plan produced with GP including a ‘do you wish to be resuscitated’ conversation
1 chest infection
5 hormone implant injections and 5 months of hormone tablets, both of which I will be on forever or until they stop working for me as a form of treatment
2 painful feet, ankles and legs due to hormone treatment, resulting in reduced mobility
1 paralysed vocal chord (now finally on the mend)
12 reflexology treatments at my cancer centre
5 psychology appointments at my cancer centre
1 TV Appearance
1 London Marathon (obviously not me)
£8,500 raised for Maggie’s Centres by runners of said marathon
365 days of unrelenting thinking about cancer.

What can’t be demonstrated using numbers, or even understood, is:

How breathtakingly cruel life seems at times
How it feels as a mother to find out you have incurable cancer
How it feels as a husband to be told your wife and mother of your child has incurable cancer
How it feels as a parent to hear that your child has incurable cancer
How it feels as a brother to be told your sister has incurable cancer
How it feels as a friend to hear this terrible news.

The emotional impact that a diagnosis of this nature has upon a family.

That my body and mind are beyond exhausted.

But what we also know is that:

I receive world class treatment from the National Health Service; York and Leeds Hospitals and especially Harrogate Hospital. The people looking after me are nothing short of incredible in the way they care. I am ridiculously lucky.

I have an absolutely brilliant oncologist who listens to me but also tells me things straight. He is patient and kind and we are so grateful for this.

I have a wonderful employer.

Kindness knows no bounds. We are surprised daily with gestures and messages of support and love.

My physical and virtual support networks are incredible. I feel so loved family and friends and also by a group of women who have also been diagnosed with incurable breast cancer, and can say ‘me too’.

The Scandal box set is addictive.

We REALLY need a holiday.

My husband is the best. He really is.

I plan on having many many more cancerversaries.






Saturday, 10 October 2015

Breast cancer awareness month: Even Eeyore's cloud has a silver lining

Author: Debbie C

In December 2011, at the ripe old age of 43 and three quarters, I was diagnosed with Grade 3, HER2 + / ER/PR -, Invasive Ductal Carcinoma, or as I named it "The Git". 

I often found myself sitting downstairs, scared witless and wide awake at stupid o'clock so decided to write my feelings down, I realised that writing about my experience of breast cancer from diagnosis through treatment really helped me deal with all the crap that is thrown at you. I also found that people enjoyed (odd word, but you know what I mean) reading my blog. It answered questions for family and friends, questions they were too scared to ask. It also allowed my family in Oz and NZ to keep abreast (pun intended) with what was happening to their Pommie Cuz. I had never written a blog before, I love reading and talking and found this was a perfect combination. I published it under
www.makingthebreastofit.blogspot.co.uk. Below is the second entry which deals with the initial aftermath, rounds of tests etc.



Even Eeyore's Cloud has a Silver Lining

The week that followed confirmation of my diagnosis and the realisation I had to wait for yet more test results, was, by far, the lowest point on this roller coaster ride we are clinging onto for dear life. Both Alan and I left the hospital feeling as though we'd been hit by one of Dad's coaches (plug plug lol). I spent the following week convinced "The Git" was attached to every major organ and all my bones. Every ache and pain I felt was "The Git" infecting another part of me. I had trouble sitting up straight, my rib cage felt uncomfortable and enormous. I googled what organ was under there (not paying attention during my Biology lessons in 1981 was proving to be a big mistake!) and discovered it was my liver - well, that was it - I had cancer of the liver too! I was a goner. Alan (and everyone else) spent the week telling me I was wrong, that it hadn't travelled. Every time someone said this to me I would be thinking "how on earth can you possibly know".

During the week I visited my chiropractor, Fiona Fingers (a nickname given to her by my friend, Alison's family - and a very apt one - her fingers should be on prescription from the NHS!) I've been seeing Fiona for about 2 years now after I started losing my balance and suffering crippling neck and shoulder pain. She had put all my neck, back, shoulder, hip and heel (ha ha have just read that back and I sound like I was destined for the knackers yard 2 years ago...) problems down to a whiplash injury I'd received in a minor car accident almost 20 years ago. The vertebrae high in my neck (C2 & C3 if you want to get technical) were inflamed and trapping the stuff that needs to flow easily (see how technical I can be?). It took a good few months but finally she got it under control and I was now only having to visit every 6-8 weeks (if needed) and at times of stress.......! Anyway, again I go off at a tangent, I told Fiona about my BC diagnosis and my fears that "The Git" was everywhere. She explained that the liver is the organ which absorbs all our negative feelings ie. grief and anger, and that it was no wonder mine was "playing up". She worked on that area and also explained that if you have bone cancer, this makes the bones weaker. Now, considering she had been using "high level adjustments" (by that I mean she had made virtually every bone in my body crick, crack and pop on every visit) for the previous two years, she was pretty certain she would have broken one of my bones by now. I left there feeling a little calmer than when I had arrived, see I told you she was wonderful.

Things were moving fast now that my cancer had been named and shamed. I'd had my CT scan after leaving my Consultants office on the Thursday afternoon and we had to be back at the hospital at 11.30 the following morning for my PET scan. You are injected with a radioactive dye that takes approximately three hours to travel round your body. So after I'd subjected my arm to another needle (and the poor nurse doing the injection was subjected to some inane chatter about the pigeons on his roof not being very fat - I was in panic mode so don't ask!), we left the hospital and went into town to do some more Christmas shopping, have a bit of lunch and generally lose three hours. I was a bit worried that I might set off the shop alarms with my radioactive blood, but the trip passed without me having to roll my body over the barcode readers - life's just no fun anymore... My scan was booked for 2.30 so we checked-in and sat in the waiting room. I wish they'd make these places a bit more interesting. I'm getting fed up reading posters of a nurse saying "it's ok to ask if I've washed my hands" I wonder if anyone ever does this - I know I don't. Mind you, quite often I want to follow women out of the Ladies and ask them why they didn't bother washing their hands afterwards - but I like the shape and position of my nose, so I just mutter "skanky" under my breath as they leave.

The PET scan is a bit like an MRI minus the claustrophobia. I had to lie on my back whilst the machine's "brain" s-l-o-w-l-y travelled the full length of my body from skull to toes taking pictures of my bones. It takes approximately 20-25 minutes and you have to lay quite still. The nurse kindly played a CD of Christmas Carols for me.....

On Thursday, 8th December we made our way back to the hospital. I spent the 10 minute journey not speaking a word to Alan, just praying in my head over and over again "please God just in the breast, please God just in the breast". I made all kind of promises to God if He would let me get good news that morning. I think the most challenging and selfless one I made was to promise to stop losing my rag with the kids when they get on my last nerve, argue, leave their crap all over the floor, argue, forget to bring their washing down, argue, leave their stuff on the kitchen counter instead of putting it in the dishwasher, oh the list goes on. This was a big one but I was prepared to make sacrifices!!

We got to the hospital an hour early, now, if you know me in real life (RL - another acronym for you to learn), you will know I am absolutely terrible at being on time and I am NEVER early. Debbie, my best friend of over 30 years gave up eons ago and admitted that, for a long time now, if we have to be somewhere at, say 7pm - she will tell me 6.30 so we stand a good chance at least being on time! I always try and cram 20 minutes of stuff into 5 and then am totally dumbfounded when I arrive late. So, for us to arrive an HOUR early at the hospital was all down to Alan - who hates being late.

We sat in that blasted waiting room, me shaking, taking huge breaths and sighing constantly - neither of us talking very much. Each swish of the door we tensed, waiting for my name to be called. When it finally was - ONE HOUR after my actual appointment time I very reluctantly I got up and walked through the doors - I swear I heard the whole waiting room give a huge sigh of relief that the rather large raincloud had left the room.

The set up in my wonderful Consultant's office was the same as previous weeks, he sat behind his desk, I sat to the side, Alan sat opposite him and the BCNs perched on their edge of their chairs ready to catch me if I passed out, looked like I was going to be sick or - more probable, made a run for it! I was staring at him, willing him to give me good news. Alan's derriere wasn't even in the chair when he said "I'll come straight to it.....", (cue sharp intake of breath from us) "Well Deborah, your CT scan is clear and so are your PET scans" - OMG!!!! I nearly slid onto the floor with relief and I think Alan collapsed into his chair. Finally, we had some good news, maybe it was the prayers - not just mine, so many people had said I was in theirs that week, maybe it was the fact I wore a different top at this appointment or maybe it was just pure luck - I like to think it was a bit of all three. At this point I would like to say that I did remember to say a huge Thank you to the heavens as we drove out of the hospital gates.

A lot of what my Consultant went on to tell me went right over my head that day, I just wanted to phone everyone to put them out of their misery, cancel the loan I had taken out for the luxury walnut coffin with the plush satin lining and a little pillow (sorry, sorry I couldn't resist that one - you are all so blooming easy to shock - its too easy sometimes....). I really don't know who was more pleased that morning; Casper, the nurses or us! The meeting immediately took on a whole new, upbeat feeling. Now the fighting talk began, my raincloud had turned into a rainbow, the sun was shining again and I suddenly felt like Christmas was back on (I'll just ignore the large debt that comes with it lol). Whereas I had been told at my initial appointment that the first thing they would do would be take me in and perform a mastectomy with chemo and rads to follow. Now he was asking me to consider having treatment the opposite way round. They were going to discuss little ole me at the weekly team meeting the following day and he was going to see if they agreed with him to start with a Sentinel Node Op (SNB - remove some lymph glands from under my arm to see if the cancer has spread there), followed by 8 cycles (24 weeks) of chemo/Herceptin with a mastectomy and rads after that. The Herceptin would then continue 3 weekly for another few months. All in all we were looking at about a year of treatment and operations - I say "we" but obviously it will be me sitting there having "good" poison pumped into my body for the next four months. However, I say "we" because Alan has never made me feel that I am on my own fighting this. Yes, there are times I feel alone but that's a different feeling altogether. He has been there every step of the way, every appointment good and bad, supporting me, comforting me, holding me and taking the pee out of me when I get too over indulgent. It's a cliche, I know, but he has been my rock and I will never be able to thank him enough for as long as I live.

A very different Debbie left the hospital that day. This one had found her sense of humour and her fighting spirit - I really must clear out my handbag more often! This Debbie does not want to speak to anyone who isn't on the Positive Thinking Bus - and is quite happy to let that be known to anyone who needs telling (whereas, Old Debbie would have worried about hurting their feelings). Don't worry, Old Debbie will return but not until this evil, invasive, destructive piece of crap has been beaten, removed, pulverised and sent packing once and for all!

I hope this post has not been too depressing. I feel it's important for anyone reading this who might be unfortunate enough to be fighting the same battle to realise that ALL your feelings, reactions and ways of dealing with it are NORMAL. There is no "right" way to handle this, just go with what feels right for you. Some people wouldn't have written a blog, some people will only tell those closest to them or on a need to know basis, some will tell anyone and everyone - well, that's the right way for them and I wish them all the love, luck and positivity in the world. However, I am a gas-bag - I will speak to people at the bus stop until they get on a bus, any bus - sometimes I suspect they get on the wrong bus just to get away from me - but that is me. This blog will be "warts n all", there is no point in glossing it all over - that won't help me or anyone else going through it. It is my dearest wish that it makes you laugh your socks off, I certainly sit here with an inane grin on my face whilst typing it so I hope it at least makes you smile. If it makes you cry, then I am so sorry but I hope it's just a one tissue, "there for the grace of God go I...." cry, because you ARE allowed to feel like that and not feel guilty. Nine out of ten lumps/masses are nothing or a cyst (painful but treatable), I was just unlucky enough to be the one in ten.

Well my sister in Geordie land is waiting for an update so I had better sign off now. No doubt she has a pocketful of witty comments prepared to keep me grounded - and I love her for that.

My next post will be covering the Sentinel Node op and my first dose of Herceptin - as you have probably realised by now I loathe needles, veins, blood eugh - makes me want to up-chuck - so I might have to get that post ghost written!!!

As always, Onwards and Upwards!

Friday, 9 October 2015

Breast cancer awareness month: The light at the end of the tunnel

Author: Deb

In October 2013, I discovered a lump in my right breast. I was only 42 years old at the time. It was at the same time as the cancer storyline involving Carol from Eastenders. Unlike Carol, who seemed troubled and nervous when she attended her doctor for an examination, I never really gave it too much thought. I didn’t tell anyone about it except my husband. I was referred to the breast clinic at my local hospital and went along myself for the mammogram, ultrasound scan and biopsy. After having these done, I spoke to a doctor who said the lump was probably nothing to worry about, it was one of those things that women my age got. I was to return to the hospital a week later for the results. My husband came along with me but was asking why I needed to go for results, could they not just post them out to me? Whilst in the waiting room, I was playing games on my phone and showing my husband some funnies on it. I really wasn’t concerned at all. My name was called and I went into the consulting room alone expecting to be told all was fine. However, when I sat down, the surgeon asked if anyone had accompanied me to the hospital that day. She sent the breast care nurse to fetch my husband. When he came into the room I said I really didn’t like the sound of this. The surgeon had examined me and asked me to sit up on the bed and face her. I thought she was carrying out a visual examination of some sort. That’s when she dropped the bombshell and told me I had breast cancer. I remember bursting into tears and looking at my husband desperate for a cuddle. My right foot was shaking uncontrollably and he looked as if he was going to pass out. I just broke down. The surgeon said the good news about this was that they could cut it out. The nurses offered my husband a glass of water and I told them to take him away and give him a seat before he keeled over.

When I eventually gathered myself together, the surgeon asked me if I wanted to wait until after Christmas and New Year for the surgery so I could have my celebrations without pain and discomfort. I just thought well there’s no time like the present. Surgery was scheduled for the 18th December and I was to have a lumpectomy. I only told my mum and not my sister as I didn’t want to ruin her Christmas or have her associate Christmas with cancer. My dad was in a nursing home with MS and I kept it from him as I didn’t want to affect his health and I don’t know if he could really have taken it in at that stage in his illness. I remember going to my mum’s house to tell her with my husband and I was strangely calm. People told me later that they didn’t think it had sunk in properly. I had the lumpectomy on 18 December but had to have x-rays and some other procedure where they inject dye into the breast to identify the sentinel lymph nodes which would also be removed. After surgery, I felt stoned and happy and phoned my mum from hospital to tell her I was out of surgery and feeling fine, looking forward to getting home. We talked about it and said at least that was it all done and dusted now. I remember listening to the radio in the run up to Christmas when I went to the hospital to have the dressing changed. The words “it’s Christmas time, there’s no need to be afraid” stuck in my head. I took this as a good sign. I had asked the surgeon for the results and she said they weren’t back yet. Looking back I think she didn’t want to ruin my Christmas as she probably knew already.

In early January 2014, I returned to the hospital and was told that the breast would have to be removed along with the rest of the lymph nodes. I had expected this and had told the surgeon I was happy for it to be removed when they were going to do the lumpectomy. More surgery was scheduled for 29 January 2014. During this surgery, I had an expander fitted with a port. The pictures had shown the port as something unobtrusive which would sit at my side under my arm. However, the reality was that the port was a metal thing which would sit below where my breast had been and would dig into my ribs causing me severe discomfort for many months. This expander would be filled with water each time I attended the plastic surgeon so the skin could be stretched to accommodate an implant later. This was done by the plastic surgeon inserting a needle into the port through my skin. This was really sore and I dreaded these appointments so much. It was only months later that I discovered something called Emla cream. This numbs the area and would have made it so much more bearable. I’m really angry that I wasn’t saved this pain and discomfort and I recommend it to any woman going through similar treatment.

After the surgery, I was told that lots of lymph nodes had been removed and there was no further trace in any of them. Apparently, there had been a slight trace in two of the nodes that were removed during the lumpectomy. The next discussions were around chemotherapy and radiotherapy and all those effects.

My sister had been told by this point and said she saw the chemo as something zapping away any crap stuff that may be left. Fortunately I had met a girl on the ward during the second op and she had been diagnosed also and we decided we were going to be chemo buddies. We scheduled our chemo for the same days and roughly the same time so we could catch up with each other. As treatment progresses, it takes a lot out of you and your emotions can really tumble. About halfway through treatment, we lost contact a bit as we were both finding it difficult to cope. We’re now back in regular contact and good friends who meet up for lunch and a blether. It was important to me to surround myself with more positive people at this time which meant spending time with my mum, sister and my oldest friends. It’s amazing how my friends were with me. They would come across and visit and bring lunch for us all and make me tea as well. 

I finished chemo in June last year and radiotherapy in August of the same year. I attended my local hospital for the chemo and another hospital in Glasgow for the radiotherapy. I was so tired as my sleep was all over the place and I remember thinking that I just wasn’t going to be able to make it into Glasgow for the radiotherapy as I was so exhausted. It was so tiring travelling in the car. The nurses at the hospital were fantastic though and really helped me through it. There was also an amazing MacMillan nurse that helped me through that time. My mum was my rock throughout the whole thing. She would pick me up for all my hospital appointments and would be cheery with me which helped so much. The first day I went into the hospital, I just broke down because the word ‘cancer’ was plastered over the entrance and all throughout the entrance lobby. It really brought it home to me and all I could think was how the hell had this happened to me and that I didn’t belong in a place that treated people with cancer as that wasn’t me. The staff at the hospital were great and kept telling me that I would see me returning to my old self a wee bit at a time and they were right. I remember an advert on TV at the time for one of the cancer charities and that showed a lady putting her hair into a ponytail before going for a run. I remember thinking that I couldn’t wait for that to be me. 

Today I was able to go for a run in a local park with my dog and it was fabulous. I’ve also started college this year and I’m studying Counselling. I want to use this to help others who have gone through what I have.








* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
Write for the blog! This blog is one of a series being shared on the Young Women's Breast Cancer Blog UK during October, breast cancer awareness month, but the blog is here year round. If you are a young woman in the UK who has/had a breast cancer diagnosis and you would like to be a part of this blog, please have a read of the additional information here.

Check your breasts
Breast cancer can happen to any of us - regardless of age. Information about how to check your breasts can be found on the Coppafeel and Breast Cancer Now websites.


Further information and support:

Younger Breast Cancer Network UK - an online chat and support group for women under the age of 45 in the UK who have had a breast cancer diagnosis.

Baldly Beautiful - a YouTube channel with make up demonstrations, created by Mac makeup artist Andrea Pellegrini who went through chemo herself in 2014.

Take A Moment - This is a group for women (all ages) who have/had breast cancer who want to explore, reflect on and express their feelings and experiences through photography. This is a link to the public page - to join the group, send them a message.

The Osborne Trust - Providing children of parents with cancer the opportunity to access time out recreational activities whilst their parents undergo operations and treatments

Jen's Friends - Free heart-shaped pillows for women (and men) with Breast Cancer. Designed to provide comfort and protection after a Mastectomy operation.


* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *



 

Tuesday, 6 October 2015

Breast cancer awareness month: Fried egg problems (part 1)

Author: Better Days

Finding the lump:
So I'm 39 and recently been diagnosed with breast cancer, yes breast cancer, its grade 3. So I guess this is my story of my new adventure and honestly I never thought my little set of fried eggs would cause so much trouble.

I have three amazing children, one boy aged 11 and two girls 8 and 9. I live with my partner of 21 years and our dog Dexter. I work full time as a youth work supervisor and extremely lucky that I love my job. I have a pretty good life and yes I could complain about this and that, but in all honesty we've got it ok, the bills are paid, there's food in the cupboards, clothes on our backs and life comforts. Ok theres no holidays or expensive treats but we are happy and have our health, or so I thought...

Here goes. Before Christmas 2014 I had a really bad kidney infection that decided to linger around till January, so I went back to the doctors, was prescribed more antibiotics. When I got home I decided to get a bath. When I was taking off my bra my hand brushed passed my right boob and I felt a lump.

So I prodded around thinking "no, no its not" and "oh shit it is" and then "no, no its not" (you get the picture). I asked my partner to feel the lump and we both had a "oh shit" moment. So the next day it was off to the quacks. I was referred straight away to the breast care unit, being told that it could take two weeks to be seen. Two weeks - it felt like a lifetime.


Telling people:
What can I say, how do you say it, what words do you use to tell someone you have breast cancer. Its simple you just say it, you can't sugar coat it or make it sound any different. It is what it is. Breast cancer.

I hate delivering bad news, I'm crap with emotions and all that stuff. Don't get me wrong if someone needs me then I'm there with tissues, hugs and will do anything I can to help. But if I'm honest I am crap at being honest about how I feel, I'm the one who helps fix people's problems not the other way round. So I told people in my way:

I was like "ok so I have breast cancer, its treatable, and you never know I might get that boob job I always wanted." I instantly noticed those around me go into "lets wrap her up in cotton wool" and the "I'm really sorry, if I can do anything just ask." The cuddles, the tears - wow it was so hard watching people's reactions - I'm a strong independent person, I'm the one who runs round, deals with stress - me not them.

When people say 'I'm sorry' in my head I just wanna say "why you sorry, you didn't give me cancer, my own body did." Its no one's fault, its just the way it is, its crap but shit happens. I now just have to deal with it, it's not gonna be easy but since when is life meant to be easy. I don't want to be the person sat rocking in a corner, I'm a fighter.

I dont want wrapping up in cotton wool, so I decided life goes on and explained that for now, before my surgery and treatment that all I want from people is normal business as usual, people can fuss when its needed. You see at this moment I dont feel ill, poorly, just tired but I have felt like that for months. I do realise that come next Friday after my surgery yeah I will feel like crap and need help but right now I need to be me, because the thought of having to ask for help and not being able to do right now scares the crap out of me. It's me that's the mum, the partner, the manager, the youth worker, it's me thats meant to do everything.

Once you tell people it's like all of a sudden you're the cancer, lots of questions, the looks of is she ok? People care and my god I am one lucky woman to have the people I do in my life. It would just be nice to be just me, just to forget even if its for a short time its not going anywhere yet, yes I have cancer but I'm not going anywhere, I havent disappeared.




The feckin MRI
So the feckin MRI, im calling it that because it got cancelled twice, so it was third time lucky. What a racket the MRI machine makes even with ear plugs in and what's with the music, you can't even hear it lol.

Now for the surreal moment of the results sat with the consultant and she's just "yes cancer in the right however the MRI has shown a mass, it might be nothing but we need to check." I think i did a "whatttt" moment, you know that moment where you kinda go really hold on a minute you're meant to be giving me my surgery dates not telling me you've found something else! I was just shocked and kept looking at my friend and saying the words "really", "wow" and "fuck". We had to wait for the ultrasound and we sat in the tears and sympathy room just attempting to make each other laugh, flicking through leaflets and discovering that a posh named sprout is actually crest!!

This was scary very scary. I already knew about my right boob having cancer, but cancer in both, in both!!

The ultrasound was more daunting than the one I had before, the nurse did her thing and I think she even sighed with relief when she discovered it was just cysts. I have never been so relieved in my life, the cancer is just in one. Ok the reality is that I will need to keep coppin' a feel and checking for lumps but it's not there at this moment. It truly was a rollercoaster ride all in a hospital unit.

They then changed my consultant and gave me my surgery date for 10th April. Things were back on track, you see my way of getting through this is step by step. OMG this step had truly changed into a escalator for a couple of hours. But back on track now I have a date and things can move forward.





* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Write for the blog! This blog is one of a series being shared on the Young Women's Breast Cancer Blog UK during October, breast cancer awareness month, but the blog is here year round. If you are a young woman in the UK who has/had a breast cancer diagnosis and you would like to be a part of this blog, please have a read of the additional information here.

Check your breasts
Breast cancer can happen to any of us - regardless of age. Information about how to check your breasts can be found on the Coppafeel and Breast Cancer Now websites.

Further information and support:
Younger Breast Cancer Network UK - an online chat and support group for women under the age of 45 in the UK who have had a breast cancer diagnosis.
Baldly Beautiful - a YouTube channel with make up demonstrations, created by Mac makeup artist Andrea Pellegrini who went through chemo herself in 2014.
Take A Moment - This is a group for women (all ages) who have/had breast cancer who want to explore, reflect on and express their feelings and experiences through photography. This is a link to the public page - to join the group, send them a message.
The Osborne Trust - Providing children of parents with cancer the opportunity to access time out recreational activities whilst their parents undergo operations and treatments
Jen's Friends - Free heart-shaped pillows for women (and men) with Breast Cancer. Designed to provide comfort and protection after a Mastectomy operation.
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *








Breast cancer awareness month: A positive outcome

Author: Michaela


Everyone tells you to 'be positive' and' everything will be just fine'. I knew from the moment I found my lump that it wouldn't be fine; I think you just know.

But here's the thing, sometimes you do here a story about someone who got lucky when things could have been so much worse, and that is me. I hope my story can give someone in the early stages of this horrible journey some hope.

It was Mother's Day weekend and I'd been out with my mum and 2 sisters for ice cream and a weepy film. I got home to my husband baking cakes for me for Mother's Day and was told to wait in the lounge and DO NOT enter the kitchen! Love him! So I sat and caught up with the Facebook world. A work colleague who had recently finished her breast cancer treatment had posted something about checking your breasts. I NEVER check mine- because they are just lumpy and how could you possibly tell? I was horrified to find a very obvious lump which I cannot believe I hadn't noticed before.

The days that followed were just an emotional draining whirlwind. I was lucky to be seen by my GP and then the consultant within days. An ultrasound, core biopsy and mammogram were done and then an agonising 3 week wait for the results. In those 3 weeks I prepared myself for the worst. I was going to die and leave my two beautiful children without their Mum. My parents were going to lose their eldest daughter. Could my husband cope without me? Those 3 weeks of uncertainty were, without doubt, the worst 3 weeks of my life.

The results were as expected. I heard the words 'you have breast cancer' and the rest was a blur. What I didn't hear were the very positive comments that she made about how small the cancer looked, how the lymph nodes appeared to be clear. I had surgery 4 days later to have the lump removed and a sentinel node biopsy.

I felt devastated after the surgery. My lump was high up almost on my chest right on the edge of the breast. The scar I am left with is visible and if I'm honest, I hate it. I am not at a stage yet where I wear it as a battle scar to be proud of. Selfishly, I miss my nice shaped boobs and I miss being able to wear clothes to show them off. I don't think I will ever quite get over that part. Please don't judge me for that, I can't help it. I was most scared about having to have Chemo. I didn't want to lose my hair. I realise how pathetic and self aware I am, it's been a lesson in life that's for sure.

It's interesting how you learn so much about family and friendships at a time like this. I saw the pain in my husbands eyes and it made me understand how much he loved me. That had been something I'd doubted at times, but it was suddenly so real and clear. Seeing your Mum cry and say that she wishes she could have the Cancer instead of her little girl. That broke my heart- but I knew she meant every word. My Dad was a mess, he was so scared that he would lose me. And friends, interesting this. Some people you have been close to your whole life don't seem to know what to say, so they just don't say anything. That was very hard. Some friends, and work colleagues literally stopped speaking to me at all, instead talking about me to my husband. I know it's a hard thing to talk about, but from my experience, I know that I will always put my own awkwardness aside and make sure I speak to people. My family were amazing throughout; offering constant emotional support, practical help with childcare and cooking meals for us. A certain few friends now have an extra special place in my heart because of how they helped us through.

My results following surgery were as great as they could possibly be. A grade 2 cancer, only 18mm, all out with no spreading to the lymph nodes. The cancer was gone and best of all I did not need to have chemotherapy. Just 4 weeks of radiotherapy and 10 years of Tamoxifen. The radiotherapy was dull and a bit of a pain to get there every day but for me it was completely painless and I coped well throughout. Work were extremely flexible which helped too.

And here I am 5 months on, life seemingly back to normal, the nightmare of breast cancer hopefully a distant memory. Except it isn't for me, the reality is that I think about it every single day, that I am constantly scared I will get it again and not be so lucky next time. Everyone else around me has moved on and no one knows the mess my head is in. I've found I can't really talk to my husband about it as he always wanted to offer a solution, or tell me that I am being irrational. Which I know I am, but I just need someone to let me get the words out. I've decided to find out about some professional counselling, that way I can get the thoughts out of my head and friends and family can continue to move on and not feel I am being negative about my experience. I am awaiting the results of genetic testing now and hoping that a can of worms isn't opened from the results. Hopefully it is just me that randomly got this illness.

I know how very, very lucky I have been. Compared to many others I have literally had a brush from this terrible illness and have got away so lightly. Physically I am good, emotionally will take a bit more work! I want women to have hope that sometimes the outcome is ok, that if you find a lump early and act fast, the results are not always the worst.

X




* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
Write for the blog! This blog is one of a series being shared on the Young Women's Breast Cancer Blog UK during October, breast cancer awareness month, but the blog is here year round. If you are a young woman in the UK who has/had a breast cancer diagnosis and you would like to be a part of this blog, please have a read of the additional information here.

Check your breasts
Breast cancer can happen to any of us - regardless of age. Information about how to check your breasts can be found on the Coppafeel and Breast Cancer Now websites.

Further information and support:
Younger Breast Cancer Network UK - an online chat and support group for women under the age of 45 in the UK who have had a breast cancer diagnosis.
Baldly Beautiful - a YouTube channel with make up demonstrations, created by Mac makeup artist Andrea Pellegrini who went through chemo herself in 2014.
Take A Moment - This is a group for women (all ages) who have/had breast cancer who want to explore, reflect on and express their feelings and experiences through photography. This is a link to the public page - to join the group, send them a message.
The Osborne Trust - Providing children of parents with cancer the opportunity to access time out recreational activities whilst their parents undergo operations and treatments
Jen's Friends - Free heart-shaped pillows for women (and men) with Breast Cancer. Designed to provide comfort and protection after a Mastectomy operation.
* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *

Sunday, 4 October 2015

Breast cancer awareness month: Finding Out My Family History

Author: Tamsin

I was aware of cancer when I was growing up but it wasn’t something that we talked about. My aunt had breast cancer in her fifties but lived well into her seventies, my nana eventually died of breast cancer, although not until she was in her eighties. In our early twenties, my sister and I saw a genetics specialist and we both remember the doctor’s parting words - “You have nothing to worry about. Go, live your life!” So that’s what we did.


I won’t ever forget the beautiful Spring day in May 2009 when I realised I had breast cancer. It was not long after my fortieth birthday and I was in my step-dad’s garden in North Wales. I watched two hawks fly high, high up in a blue sky. I remember the long grass and the smell of the earth. My step-dad had died a few weeks previously and I was thinking about how much he would have enjoyed having me and my sister at home. It had been during his illness that I first noticed a change above my left breast, a few centimetres below my collar bone. Lying back in the grass, I traced the outline of a crab-like shape. There was something about the way it gripped tightly to my ribs that frightened me and I was alarmed to find that it had grown without me noticing. I made an instant decision to return home to London to see my GP. When, two weeks later, I found out that I had breast cancer, I wasn’t surprised and felt relief that the waiting was over and at last we could do something.

My Oncologist asked about my family history and we talked about me being referred to a Cancer Genetics clinic when I finished my chemotherapy - he thought it might be too much to deal with while I was going through my treatment. I completed a long and detailed questionnaire about my family history over Christmas, contacting my father - who I am not in touch with and didn’t grow up with - so I could fill in the forms. It was at this point that I began to realise that there was a history of breast cancer in my father’s, as well as my mother’s family. Although fewer women were affected, their cancers had been deadly. Our family tree looked as though a forest fire had burned through the generations. I was desperately sad to learn that my paternal grandmother had died of breast cancer a few days after my birth and that we had both been diagnosed at exactly the same age.

In March 2010, the genetics Consultant explained that I appeared at low risk of having an inherited mutation and was not eligible for genetic testing. I was asked to take part in a research study looking for other mutations and I agreed readily, wanting to do my bit to contribute to the development of science. The study also tested participants for the BRCA1 and BRCA2 mutations.

In the year I waited for the results, I began to ‘move on’ as they say and to re-build my life. My hair grew back and my body recovered. There were even days when I wondered whether I had actually had cancer at all. I tried not to worry when the appointment finally came around in March 2011. Sadly, it’s only when you have had a cancer diagnosis that you really understand what it’s like to wait for scan, or test results; the sick fear that sits like a toad in the pit of your stomach, the bargaining that goes on in your head. My strategy ‘to prepare for the worst and hope for the best’ sounds glib but the reality is that I end up in a kind of madness, swinging between wild optimism and hopeless despair!

Finding out, seemingly against the odds, I did have a BRCA1 mutation came as a total shock. It’s the only time through everything that has happened that I have cried in front of a doctor. All I could think about was my daughter, my sister and half-sister. I felt like having the gene was my fault; that I was cursed. It scared the shit out of me.

I spent the weeks that followed desperately trying to find positives - ‘Oh well’ I thought ‘At least that explains why I got breast cancer’ or, ‘No one else in my family will have to go through breast cancer.’ It took a long time before I appreciated that I too faced ongoing risk; just because I had got one breast cancer didn’t mean I wouldn’t get cancer again. I felt like a cancer-bomb ready to blow up.

If like many people, your views about inherited mutations are based on the brave - and public - accounts given by Angelina Jolie Pitt, you might reasonably expect that once I found out I was a cancer-bomb, risk-reducing surgery was a no-brainer. Not a chance! I found that I really did not want to have a bilateral mastectomy. I had developed a deep fear of hospitals after my first brush with cancer and never wanted to set foot over the threshold of a hospital again. And anyway I quite liked having breasts, even if they had tried to kill me. But, I rationalised, I definitely didn’t want cancer again so I would just have to have surgery. But, then I didn’t want surgery with all its associated risks and pain. I kept going round and round, trapped in a Mobius strip of indecision.

I contacted Breast Cancer Care and the National Hereditary Helpline and spoke to other women, to find out how they had coped and what decisions they had made. I saw an amazing counsellor at Maggie’s who helped me to think about what my breasts meant to me, as a woman, as a mother, as a lover. I realised that I was never going to ‘want’ to have my breasts removed, that even though I did not want risk-reducing surgery, I could go ahead with it because it was ‘the least worst option.’ Over time, I learnt to feel empowered by my awareness about my ongoing risk; unlike my aunts and grandmothers, I had the opportunity to choose how to live with my risk and give myself the best chance of living a long and healthy life.

I did go on to have mastectomies about 6 months later but unfortunately, they were not without complications. A second breast cancer was discovered from the tissue removed from my breasts and I had to have more chemotherapy. It was a particularly sneaky cancer because it had not shown up on any of my scans so unwittingly my decision to have surgery may have saved my life. I had my ovaries removed the following year.

Through a process of elimination, we found out that I had inherited the BRCA1 mutation from my father’s side of the family, not my mother’s family as we had thought. I also found out I had a half-sister. It wouldn’t be right to share my sister and half-sister’s stories, but I’ve found it incredibly hard to stand by and watch them grapple with their own genetic heritage.  

So many women in my family had breast cancer, but I know nothing about their experiences. I find myself wondering what they thought about their illness, how they felt and coped. I can hardly bear to think of my daughter having to deal with our family history in the future but my greatest hope is that if and when the time comes, I will still be here to help and support her. I dedicate this blog to her, to my mum and the future generations of my family.      


 


* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *
Write for the blog! This blog is one of a series being shared on the Young Women's Breast Cancer Blog UK during October, breast cancer awareness month, but the blog is here year round. If you are a young woman in the UK who has/had a breast cancer diagnosis and you would like to be a part of this blog, please have a read of the additional information here.

Check your breasts
Breast cancer can happen to any of us - regardless of age. Information about how to check your breasts can be found on the Coppafeel and Breast Cancer Now websites.

Further information and support:
Younger Breast Cancer Network UK - an online chat and support group for women under the age of 45 in the UK who have had a breast cancer diagnosis.
Baldly Beautiful - a YouTube channel with make up demonstrations, created by Mac makeup artist Andrea Pellegrini who went through chemo herself in 2014.
Take A Moment - This is a group for women (all ages) who have/had breast cancer who want to explore, reflect on and express their feelings and experiences through photography. This is a link to the public page - to join the group, send them a message.
The Osborne Trust - Providing children of parents with cancer the opportunity to access time out recreational activities whilst their parents undergo operations and treatments
Jen's Friends - Free heart-shaped pillows for women (and men) with Breast Cancer. Designed to provide comfort and protection after a Mastectomy operation.* * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * * *