Karen's Story

29 October 2015

Throughout 2016 we are supporting the Women V Cancer charities and our colleague Karen in her fundraising efforts to complete the challenge of a lifetime - cycling 450km through Vietnam & Cambodia in just 6 days. Here she shares her moving and inspiring story. Karen is aiming to raise over £3000 for the charity to help support their life changing work. We hope you can help us to make her dream a reality.  

Karen's Just Giving Page

Karen’s story
31st July 2013 - without trying to be overly dramatic - is a date etched in my memory and I am sure it will be forever. Two weeks after having my very first routine mammogram (at the tender age of 50) I was recalled. To this day I don’t know why, but I was completely oblivious to anything actually being wrong. The letter quite clearly gave me an indication that something could be, but I didn’t give it a thought. So I rocked up at the Rose Centre - such a delightfully cheerful name – at St George’s hospital in Tooting on my own. A lovely nurse called Julie took me through to a small meeting room and explained the scenarios of what may happen and to generally put me at ease, “it’s probably nothing, just precautionary” that type of thing. To be honest, I thought that anyway if I had thought anything at all. 

Karen getting in the saddle with her grandson Theo!

I went to meet my doctor, the most brilliant Caroline Ward who I have never met since but will remember her always. We were going to have another mammogram and a chat, which then lead on to an examination, a core biopsy and an ultrasound and ultimately Caroline’s conclusion that without any science there was significant concern to refer me to a surgeon - Breast Cancer - very early stages, very treatable, very small - Breast Cancer. I was floored, inconsolable, too shocked to string a sentence together let alone take anything in. I didn’t know anything about Breast Cancer, like so many people you hear the word cancer and think it’s a death sentence. Was I going to die? My immediate thoughts going to my children, my then husband, my family and my friends. How do I tell them, when do I tell them and how much do they need to know? I told my then husband that night and we agreed not to tell the children until we knew more, had a plan…
I met my surgeon the equally brilliant Nadine Betambeau a week later on the 7th August who confirmed Caroline’s diagnosis. Breast cancer in my left breast... invasive ductal carcinoma with high DSIC grade 2 (cancer in general is graded by its severity); to give it its full title, and she started the ball rolling. In a nutshell, I was booked in for a lumpectomy on the 29th August, as the cancer was very deep and I had to have a wire inserted the day before so that my surgical team could find the cancer easily. That was followed on the 10th October by a re-excision and axillary node clearance. My very small cancer wasn’t so small after all. At 58mm it had become a grade 3, so they had to clear a margin of healthy tissue and remove some of my lumph nodes because the cancer had travelled to under my left arm. On the 20th November four and a half months of Chemotherapy followed with 6 sessions (all 3 weeks apart) at St George’s and 20 sessions of Radiotherapy at The Royal Marsden Sutton which began on 10th April 2014. I also have my magic post cancer pill which I will continue to take for 10 years in total and I am on the OAFU programme (open access follow up) designed for patients out of immediate danger, but still need an eye kept on them. I have mammograms annually as part of this scheme.

The initial surgery was absolutely terrifying not having had surgery before, the exception being my C- Section which I was awake for, so doesn’t really count in the nerve jangling thoughts of not waking up again department! I held it together on the outside putting on a brave face, being the tough cookie that I am and thankfully came out the other side. The re-excision was a bit more gruelling with the two surgeries being within 6 weeks of each other and the recovery was a little longer, but well, I was now an old hand at this surgery malarkey and just let them get on with it!
I suppose in many ways I just took it in my stride. My family said afterwards they would never have guessed how frightened I was. I was so strong and focused apparently. Clearly an Oscar winning performance had I chosen acting as a profession rather than accounts!! The chemo was pretty tough, as was the radiotherapy and both generally took their toll. The mouth ulcers, the nausea, the tummy upsets, the fatigue, the aching limbs, oh and my poor feet. I have never felt anything like it. I could barely walk some days.

The hair loss was especially difficult. I thought I would be ok and was prepared to lose my hair, after all it was only hair Right? How wrong I was. I did try the cold cap (a treatment that can help in stopping hair from falling out) in the beginning, but it made my head hurt similar to a migraine within minutes of putting it on, plus I looked a little bit like Frankie Detori which wasn’t a good look for me (sorry Frankie)! And anyway I decided that I didn’t know how I would feel after the chemo (after listening to and reading some of the horror stories), I didn’t want to have to cope with a migraine as well.

So I took my chances and I lost my hair, but I lost it all at once, in the shower, on a Sunday morning between my 1st and 2nd chemo sessions. I started to wash my hair and it moved - I felt like Medusa - so I stopped, patted it back into place and ignored the fact that it desperately needed washing. A whole week later, you can imagine what a state it looked. I bit the bullet and it all came out. Washed away completely except for a few strands. Gone. Devastating. I sobbed. It felt like I had lost my femininity, my sense of identity, I didn’t look like me anymore, I looked ill and I wasn’t. I shaved the remaining strands off and I still have them wrapped in pink tissue paper in my knicker drawer!!  
I choose not to go down the wig route and had some rather fetching scarf’s that wouldn’t stay put and kept slipping back. I either looked like I had too much forehead or no forehead at all if they slipped forward. So I brought myself 2 little black beanie type hats which I dressed up a little on high days and holidays. I became quite attached to them and lived in them, one on, and one in the wash. I lost all my self-confidence. The initial venturing out looking and feeling so different made me feel really anxious and self-conscious. I felt like everyone was looking at me, they weren’t of course, but realising that didn’t really help. 

Karen's collection of scarves and the famous beanie hat - we are all over the leopard print here at the forma blog!

I remember being on the bus one day when a group of teenage boys came tearing down the stairs. Being completely bald at the time (except for my pretty scarf), I felt really venerable. What if one of them snatched it off? What would I do? They didn’t of course, but after that experience I always carried a spare. My grandson who was 3 at the time was a bit confused as to why nannie suddenly had to wear such stunning headgear. He would rub my head softly and say, “Ah Nannie”. Just a simple sentence, but it would make me smile on sad days, children are so accepting.
The radiotherapy – it sounds so ridiculous because the sessions were only about 15 minutes long if that - but it was exhausting. I think it was the daily trek backwards and forwards that did it for me. Due to the late Easter and May bank holidays, the radiotherapy dragged on over 5 weeks. The combination of everything going on made me feel very tired. It was at the start of the radiotherapy when I had my (what I laughingly call) first tattoos. Well 5 actually. Five tiny blue dots strategically placed on my skin to accurately line up the beams and lasers to zap the cancer. I am officially a tattooed lady, something I never thought I would be :-) !!!
I continued to work through my treatment to try and keep everything normal. Going to work was very therapeutic. It gave me something to think about, something to focus on, rather than dwell on me and my predicament. My employers were fantastic and continue to be so to this day. At the time it alleviated my financial worries (an extra problem for so many cancer sufferers), happy to see me when I graced them with my presence and no pressure when I didn’t. My friends at work treated me exactly the same. Not sure why I thought they wouldn’t. I suppose because I felt different, I thought they would be, but no, the insults and teasing (all good humoured banter) continued, telling me how wonderful I looked even without hair, eyebrows and eye lashes! 

Strangely they never thought to mention it before my treatment!! Telling me ironically how fit and healthy I looked when I felt like Poo, not sure why I looked well if indeed I did, or maybe people were just being kind! I decided after my treatment finished in May, that I would reduce my hours and work a 3 day week which I still currently do. I needed some rest, to refocus and regroup if you like. The thing is you don’t really understand what you have been through until much later; you just go on automatic pilot for a while. It is only now that I acknowledge how much everything affected me, much more than I realised or was prepared to admit.
My treatment was great I couldn’t fault it, but however much I remained positive - having complete faith in the team of people assigned to looking after me, having had 10 months of being told where to be and when to be there – suddenly after everything finished, there was nothing in front of me but the future. And although I remained positive, I was fearful, not really knowing what that future was. I felt abandoned. When I was being looked after it was like I was being cuddled in big strong arms, and then those arms had let go to a degree and I felt a little lost really.
Obviously I was elated the treatment had been a success and that the news was good, but I was scared that I now had to fend for myself. I was now the one solely responsible for looking after me, checking for changes without becoming paranoid. I know we should do this anyway and please do if you don’t already, but if I am honest I hadn’t really given it a thought when I was healthy or so I thought. The ‘it won’t happen to me’ mentality I suppose, but having the scare obviously made it real and I realised that we just shouldn’t take these things for granted. This was real. And don’t get me wrong, I couldn’t have asked for better treatment, the NHS at its very finest as far as I am concerned. My treatment was brilliant from start to finish. These wonderful people both at St Georges and RMS who keep you cheerful, remember you, laugh with you, cry with you, hold your hand and make you feel that what is happening is perfectly normal takes great skill and aptitude. Our medical staff, Nurses, Doctors, Surgeons, Healthcare assistants, all of them, are thoroughly underrated and worth their weight in gold. I can’t put into words my gratitude. I have been very lucky.

Like I said I told my then husband immediately, and my children, siblings and friends thereafter once my diagnosis was confirmed and I had a plan. Each reacted with complete shock, disbelief and amusingly said they were all desperate to see me. If the shear love, devotion, strength and support I have been lucky enough to have received from my loved ones could have got me through this without the need for medical intervention, then I had it in spades and I have no doubt I would have made a complete recovery! I think although none said, they were just as terrified as I was. Sadly though, it is also at times like this you find out those you can’t rely on for whatever their reasons and it can be surprising.
At the very beginning my son asked me one question, well a statement really, “but you are going to be OK aren’t you Mum?” I replied “of course I am”. Similarly, at the end of the treatment, in fact only a few months ago, my daughter and I were watching TV and an advert came on for cancer research. There was a mother and daughter, with a very emotional daughter saying how terrified she was of losing her mum. I turned to my daughter and asked if she felt, or had felt the same and she said without hesitation that, absolutely not, she had never felt like that, because I told her I was going to be fine and she couldn’t ever remember me saying anything I never truly meant. Proof hopefully that a positive mental attitude can conquer all, it is very empowering.
Now 2 years on from my diagnosis I have developed lymphoedema, a swelling in my lower left arm and hand caused by a build-up of lymph fluid. It was possibly caused by damage to the lymphatic system during my surgeries, or the radiotherapy, but not really sure. I am in the minority, just a small percentage of us are affected and it’s just a legacy from my treatment. I do need to be careful with things like gardening, insect bites and little cuts on my dodgy arm because I can no longer fight off the infections. I keep a supply of anti-biotics on standby just in case, but seriously it’s no bother, and taking my magic pill daily, well that’s just something I have to do to make sure I keep ‘it’ at bay.
Strangely, initially my hair grew back one side curly and the other straight. Now it’s all back to straight again?! And even though I have a lovely full head of hair, I kind of miss the curly old me. It also grew back ‘salt n pepper’ where again strangely I had always been a blonde!! I guess you would walk pass me in the street and not notice anything ‘different’ about me, just like I do to others and I am sure countless more do on a daily basis. You just get on with life don’t you?

Well that’s me. The shock of my diagnosis and treatments has changed me as a person. My life has totally changed, but I think for the better and I enjoy life. I am happy with my lot, but I do view things differently. Time is a precious commodity; time is for me to do what I want and when I want to do it. I guess that might sound selfish and perhaps it is, but you only have one life and I intend to live mine to the full. There’s no time for ‘what if’s’ they don’t exist in my world. I appreciate every cancer free day, which neatly brings me to the purpose of my story...
I was approached by Action for Charity on behalf of Women V Cancer in aid of: Breast Cancer Care, Jo’s Cervical Cancer Trust and Ovarian Cancer Action about a year ago. Breast Cancer Care we’re a great support to me personally. Attending one of their moving-forward seminars (once a week for 4 weeks), meeting some great women and realising just how much support there is out there was incredible. You just need to know where to find it and BCC showed me that and a whole lot more.  
Anyway they were offering me the opportunity to take part in an adventure, a challenge of a lifetime….. to cycle approximately 450KM through Vietnam and Cambodia. A journey over 12 days (6 of which will be in the saddle) in November 2016. Well, how could I resist? At the time being 51 years old, unfit and terribly overweight! I couldn’t ever remember cycling before - not even as a child! Obviously I signed up immediately. 

Why, is the word most people who know me begin their sentences with! Normally accompanied by a quizzical look on their faces, not quite sure if I am being serious and not totally sure if I am up to the challenge? So here is why. For me personally this challenge is huge, a gigantic commitment of both my time and perseverance. Both physically and mentally demanding, but I have no hesitation in telling you, I know I will succeed in completing this journey. I have so much to be thankful for, there but for the grace of God.
I am doing this not to prove something to myself - I know I can do it - and yes obviously the sense of achievement will be fabulous (as will be the bottle of wine I intend to have directly after I finish!), but that said, I want to do this for all of the people who came before me and for those who will sadly come after me. Women - I say women simply because of the charities I am supporting - from every walk of life, like Russian roulette are being diagnosed with cancers every day and this network of charities and others like them are invaluable. Cancer doesn’t stop when the treatment finishes. The psychological effects stay with you and you have to live with people’s expectations of you being back to ‘normal’- whatever normal is or was, but you are far from it, you are different, you feel different and you wear the scars.
Regardless of how strong your character, or your self-belief, or how amazing your family and friends who support you are, cancer is a lonely place and although it sounds a little cliché, sometimes you just need to speak to someone who has walked in your shoes. People that have felt as you have, thought the same thoughts as you and basically understand where you are coming from. There is life after cancer, but we all just need the support to get through it - that is my motivation.

I think as you get older you get braver and I intend to follow my dreams. I really truly believe if you can see it, you can do it, and I intend to just go for it and grab it with both hands. So, now with about 13 months to go I start my training regime in earnest. To join a harem of amazing women who are taking positive action in the fight against women’s cancers. Please encourage me by donating to help me give back a little of what I have taken and show your support to these wonderfully brilliant and worthwhile women’s cancer charities.

Thank you for taking the time to read my story.
Love Karen  xx

You can make a donation via Karen’s JUST GIVING page by clicking here

Karen’s 450km 6 day ‘Women v Cancer’ cycle challenge across Vietnam & Cambodia is in aid of: Jo’s Cervical Cancer Trust, Ovarian Cancer Action and Breast Cancer Care. The challenge commences November 2016...

Nov 2016 update:
Please note this fund raising event has now been postponed until 2017.
Karen's Just Giving Page


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