A blog on my experience speaking at the 3rd Breast Cancer forum for Breast Cancer in the young, the pregnant and those with a family history.
Teamwork is the ability to work together toward a common vision.
It wasn’t the most ideal time for my consultant to call me to ask a huge favour! With my five year old blowing a new whistle and, in-between breaths, explaining how to use a new compass while having no direction at all herself and squirming in her car seat, due to soaking wet trousers after dancing in a rain storm, I couldn’t have been more caught off guard!
Since it wasn’t Mum or Best Friend and he was either calling because there was something amiss on my last blood test (gosh am I due another one?!) or he needed someone to buddy a new patient, I shot a death stare to the squirming five year old in the back seat and put my finger sharply to the lips, letting my curiosity get the better of me.
Dr Brown Bear (our family nickname for my consultant, based on the character from the legend that is Peppa Pig!) has been my consultant for the last ten years but if you count my family history, you could probably add another ten! If anyone had my total and utter medical trust, it was him and as a patient, I had always felt very lucky to have him head up my own CT (cancer team)
He had been asked to speak at a forum in London the following Friday, on the topic of breast cancer in the young, pregnant or those with a family history and since I ticked all three boxes (lucky me!) he was calling to ask if I would be able to co present with him! Put on the spot, I usually willingly volunteer for anything (I am working on this!) but as I uttered the word Yes, my tummy flipped more than a cement mixer and I began to seriously wonder how far out of my comfort zone one could actually push themselves!
Since the subject matter of the conference at The Royal Society of Medicine was so relevant to the last ten years of my life, Dr BB thought it would be a novel and effective idea to include a patient as a walking talking case study and apparently I was the patient who had sprung to mind! Doh!
He wanted to put together a presentation that would be a shift from the norm and help the audience see things from the patients point of view. I loved this, and it was something I felt passionately about and had always wanted to do. This was an opportunity to give younger patients a voice and demonstrate how we might interpret all things clinical whilst ‘falling down the rabbit hole’.
We met to go through the presentation and there, stripped back to twenty five slides, were the last ten years of my life, broken down into roughly thirteen six monthly appointments. It was bizarre.
All that had happened to little old me?
As we talked through each slide, I literally couldn’t believe all the things that had happened. I had forgotten (or blanked from my mind!) so many details. As we talked, Dr BB would make suggestions of areas to consider discussing and questions he may ask me at certain points. Once again I felt pleased that I had kept all my diaries to remind me of the emotions, feelings and observations that I could draw on again to give an accurate picture of a patients experience.
Before I left, we looked at the schedule for the day and as I glanced down the list of names and titles (and my stomach flipped again!) I saw a familiar name as the key note speaker. Jo Taylor was due to talk at the end of the day and I was thrilled to see her name! I had been in contact with Jo for a couple of years, following her amazing work on Twitter for her brilliant ABC Diagnosis. Jo’s story was incredible and she had written a guest blog for me a few months ago. I was thrilled that there would be another ‘patient’ there and someone who I had been hoping to meet.
On arriving home that evening, I retrieved my diaries to take a few notes and prepare. I found myself face to face with the girl who had actually lived through all that uncertainty and fear, who had run head first down the rabbit hole three times and survived each fall with as much courage as she could muster. I read the first few pages word for word and felt a huge wave of emotion as I read how those first few days had affected me.
As I read, I relived a little, laughed a little and cried a little. I wanted to write my twenty six year old self a letter and tell her all this would mean something one day! Instead, I put her in my pocket and continued to scroll through the slides, hoping that she would help prompt me on the day.
As I arrived at the Royal Society of Medicine on Friday, I felt quite excited! It was as if this was something I had been preparing for a lot longer than a week! Dr BB met me at reception and showed me into the auditorium. It wasn’t as big as I had feared and there were two seats on the stage ready for us to sit.
No sooner had I grabbed a cup of tea (to steady the nerves!) we were being asked to take our seats. Dr BB and I sat at the front while Dr Kathleen Thompson introduced the days schedule. Then it was our turn.
Sitting on the stage with the man who had technically saved my life three times, was a total honour.
Talking through those huge events of one persons life, in black and white bullet points on a sterile screen, was my chance to splash some colour and meaning onto the page, so that the audience could appreciate the real personal impact of this disease. This was raw, this was real. I had been worrying that I would be tongue tied, that I wouldn’t know what to say, but as I sat there and listened to Dr BB and took my queue from him, I realised that all I had to tell them, was the truth. It was my reality, my experience that they wanted to hear. I hadn’t needed to memorise anything, remember any facts. This was my story, plain and simple and I was the professional now. It was totally empowering.
Being asked about the benefits of counselling, the importance of the holistic care available to me, what access there was to nutritional advice and how effective I thought certain treatments had been was wonderful. Add to this what the most important issues were to me at each point of diagnosis, as well as discussing the effects on my family and our history, it was a chance to lay out a reality that so many people are experiencing outside of the clinical environment. This was what happened under the surface and while the doctors tick boxes and follow guidelines, we, as the patients, are living with blurred or no guidelines at all and boxes we often can’t tick.
Having the opportunity to talk about my reasons for setting up Samspaces was wonderful and having the chance to rally more awareness for the issues we, as younger patients, face post treatment, was something that meant a great deal.
Next up was a fantastic plastic surgeon, Mr Ash Mosahebi, who discussed reconstruction and all the different areas on the body a flap could be taken from and what the results could be like. Following Mr Mosahebi, oncologist Dr Anna Kirby from The Royal Marsden discussed the Breath Hold technique and how it is helping the effectiveness of radiotherapy by getting the heart out of the way of the treatment. As the day went on, the presentations continued to be just as fascinating. Dr Alison Jones talked extensively about the issues of pregnancy during and after cancer and her colleague Dr Madhurima Rajkhowa talked us through the possible fertility options available should younger patients be in this situation. I felt so privileged to have been able to listen to these talented and highly respected doctors as they talked about their research and professions.
Watching Jo give her key note speech was very special. This lady, who only six weeks ago had extensive surgery to her sternum and who is still under going chemotherapy for a secondary cancer, blew me away. Her bravery, courage and unwavering battle to lobby the government and medical profession for more funding into secondary breast cancer prevention and research, is astounding. It was a hugely powerful speech and she totally rocked it!
From the feedback and conversations I had throughout the day, I learnt quickly that hearing a patients first hand experience meant a great deal to those attending this forum. The risk of including a patient had paid off and starting the day with our presentation and ending with Jo’s had highlighted to those listening, the importance of the patients wellbeing and the value of their indivudual experiences. It was so encouraging to hear how the structure of a younger patients clinical team needs to be reviewed including on tap holistic support, counsellors, orthopaedic doctors, a gynaecologist, rhematologist and nutritionists among others. I was delighted that our presentation had been received so well and left on a high, hoping that perhaps I had made just a tiny contribution in helping to understand how to better support the younger patient and how they are affected by the far reaching effects a cancer diagnosis can have. Maybe, somewhere down the line there will be new boxes to tick and more holistic guidelines to follow, during and after treatment, for the patient and the doctor. After all, if there is one thing I have learnt over the last ten years, it is a team effort.
Thank you to Pink Ribbon, RSM Professionals and Breast Cancer Care
After being told that three out of the four machines were down that day and the delay was two hours long, one look at my horrified face (after interrupting me in full flow of IT demo with Doris and Pete) it was quickly decided that I should return the next day and start afresh. I left feeling totally drained and practically wheel spinned out of the car park much to the disapproval of Mr Car Park Attendant who was still loitering around.
The next day I didn’t take any chances. Luckily, I had had some reflexology booked in and after tearfully recounting the day to my counsellor of a reflexologist, and having a fantastic calming session, I was packed off armed (and dangerous), with a holster of aromatherapy oils to sniff on various tissues, books to read, iPads to write on and headphones to drown out the voices, while listening to calming meditations I had spent hours downloading the night before.
Unlike the day before, I swung freely into my ‘special’ parking space after making sure Mr Car Park Attendant wasn’t around and skipped confidently into the ward and literally stopped dead in my tracks. There was no one there. Not a soul. It may as well have been a completely different hospital. A lovely Sister promptly came over and invited me into a private room to chat and go over my treatment plan and x rays, apologising profusely and explaining that the day before barely ever happens! It was like I was in a parallel universe.
This was only exaggerated by the general feeling of surrendering to aliens as I climbed aboard the radiotherapy machine a mere few minutes later. After undressing and putting on the all too familiar blue dotted hospital gown and waiting briefly back in the same chair as previously, I was called into my assigned treatment room. The machine’s formal name is a Linear Accelerator (doesn’t it even sound sci fi?!) and it’s similarity to some sort of spaceship was ironic. With a long tongue that is actually the treatment bed you lie on, I felt like ET about to hover off to some other planet somewhere.
The LINAC uses electricity to form a stream of fast-moving subatomic particles. This creates high-energy radiation that may be used to treat cancer.
Lying on my back with my arms above my head (and prepared for another dose of pins and needles!) I would stare above me, feeling as if I was lying beneath some space ship, looking up at this huge machine that was about to spit out radioactive light right at me and beam me up! The radiation therapist would make all the checks, lining me up accurately. I had to keep absolutely still for the entire time, so itchy noses were a definite no no! The area measured on my body was reflected in the pattern on the lens above me which covered a large area of my sternum, chest and throat. I had also been warned that it may cause burning to my back too as the rays go straight through to the other side. Well, what do you know, I get a lovely brown left shoulder blade too, better get out the after sun!!
The whole procedure reminds me of launching a space rocket, or indeed a UFO! Once all the checks match and are so bang on there is no room for error, the machine turns on and the unit above is lowered down towards me. 5,4,3,2,1! Houston we have lift off! I’m not claustrophobic but its a strange thing, feeling as if you are about to be sandwiched between two pieces of rather heavy medical equipment. Talk about personal space! Once this is at the exact height necessary, the alarm starts buzzing and a red warning light flashes on the wall and the therapists leave the room. It’s like a mini evacuation process, except you are the only one left behind while the radioactive light is beamed through you. I always found this bit tricky as I always felt rather alone and isolated. With eyes shut tight, I would breathe deeply and surrender to the medicine, letting it do its work.
During treatment the radiation therapist continuously watches the patient through a closed-circuit television monitor. There is also a microphone in the treatment room so that the patient can speak to the therapist if needed. Port films (x-rays taken with the treatment beam) or other imaging tools are checked regularly to make sure that the beam position doesn’t vary from the original plan.
Information I was given for my radiotherapy treatment from Parkside
The buzzing sound that resonates from the machine as it radiates through the skin is loud and bloody annoying! As I would lie there feeling like some kind of cardboard cut out, I would do some visualisation. I learnt a lot about the use of this during my periods of treatment. It was so important for me to take myself out of the clinical environment and imagine fluffy and positive things! I would visualize the rays successfully burning any rogue cells away some days and others I would like to imagine lying on a beach while the light would be the sun shining down on me and filling me with glorious white light, while ignoring the harsh buzzing that I would pretend was an aeroplane flying over or something equally as irritating!!! The imagination ran wild!
The high-energy radiation used during radiotherapy permanently damages the DNA of cancer cells, causing them to die.
Nearby healthy tissues also suffer temporary cell damage from radiation but these cells are usually able to repair the DNA damage and continue growing normally.
This time around my side effects were a lot more obvious. As the treatment affected the sternum and bottom of the throat area, I did find it hard to eat after a couple of weeks. I wrote in my diary two weeks after starting;
‘My chest is feeling dry today and Ive noticed when Im busy or tired, like often in the early afternoon, my throat and chest feel sensitive, sore and dry. The skin is a little red and sore and Im much more aware of it…… I feel a bit frayed around the edges’
– Diary 18th September 2012
I remember that eating a chicken curry took an hour and not because it was spicy! It felt like I was swallowing rocks. I had embarked on a mindfulness course at The Haven and we had to do an exercise about eating mindfully. This, for me, was not a problem while undergoing radio on this area and I could use the time chewing relentlessly to ponder all things mindful before swallowing and wondering why I hadn’t just made soup!!! I was quite sunburnt on my chest and shoulder bone behind and a small cold turned into a painful chest infection since it went straight to the weakest area of me, but with doctors on hand and nurses checking up on me every day, I could take medication to help more affectively than normal and advice was simply to just take it easy. Always easier said than done! It was tiring, trying to have as normal a routine as possible with a new home, village and small child, while the anxiety and side effects bubbled under the surface, literally!
Despite all this, I met some amazing people while waiting in that corridor. I realized that there is so little written about radiotherapy from a patients point of view, and what it involves. I wanted to share that with others because even though it is part of a cancer treatment, it is an incredibly clever, complex treatment that is so much less invasive and though more clinical than chemo it tends to be more straight forward and less time consuming on a daily basis then one may imagine. Bizarrely, there was another young girl who it turned out I had been to sixth form college with and we would reminiss about our media trip to Paris and often comment on how we felt so young in that corridor. It was wonderful having her around and she gave me great strength being there to either welcome me out of the session or wave me goodbye as I went in. I felt very lucky to have had a hand to hold during that time.
Any cancer treatment is challenging. Its putting you and your life under a microscope and monitoring you from day to day, in a zone totally out of the comfortable! It can be tedious and the side effects can be taxing but it is there to help your body fight a disease that it cant necessarily do alone. Being in the hospital every day, with all those different patients, taught me that medicine is a wonderland itself. It is constantly changing, improving and saving lives. There is so much going on behind the scenes and I have witnessed this now a few times! It is amazing what it can do and our own individual experiences of it can only prove to us how inspiring it is. As traumatic, frustrating, scary and alien it can be at times, these experiences have enriched my life and made me think so differently. As I write this now and reflect, I only hope that those other patients my path briefly crossed with in that corridor over those seven weeks, are well and happy and that dear Pete finally got his ipad! X
On what is the hottest day of the year so far, it seems slightly ironic that I am talking about a cancer treatment that involves high radiation that can damage skin while destroying cancer cells, but I have wanted to share my experience of radiotherapy for some time. Since I have had two courses of this treatment, I want to mention both, so, at the risk of boring you all stupid, I have split the blog into two parts, hoping that what I have written will effectively reflect on what radiotherapy treatment involves. I am not writing this from a medical perspective, I am also not going to go into too much of the technical side, but it is my view as a patient. Being able to share my story about this form of treatment has always meant to a lot to me. Since it is often the last round of treatment it can be viewed as the easier section but it is still a form of treatment with its own procedure, routine and side effects and I want patients, friends and family to feel a little less in the dark about it. I would also like to mention that I have included a picture of me, post my clavicle surgery in this blog. It is not meant to upset anyone but I wanted to stress that I have included it as more of a realistic illustration of the area concerned and to show how close the two areas affected were, on my body.
As I lay there, staring up at the off white ceiling that had so many holes in it, it looked like a piece of Emmantel cheese, I was not only reminded how hungry I was, but wondered how on earth this could be happening again! Just a few moments before, I had been sitting, freezing, on another hard plastic waiting room chair and I knew this time round was going to be very different. Over The TV Times covered coffee table an older gentleman had smiled cheerily at me. Clearly he hadn’ t been waiting for over an hour with a September breeze blowing generously through the revealing gaps in the attractive thin cotton hospital gown we were asked to model, before being invited into that dark examination room.
Second time round, not only was the lump in my clavicle rather than my breast, I was to be treated in a different hospital (I lived in a different area now) and because I had had radiotherapy before, the measuring up procedure was a lot more complicated. You can’t have radiation in the same place twice and X rays are required before your treatment starts so that your team and consultant can mark up the exact area correctly. This was therefore becoming a very long and rather uncomfortable session.
Me, post clavicle surgery. The feint line above my left breast illustrates where my first course of radio was in relation to where I would need it now.
I cant say I have ever had pins and needles in my neck before! The procedure involved lining me up so the lasers and little mini light that danced over me made the correct pattern designed specifically for my case. I had to lie so still and breathe so carefully so as not to disrupt any of the measuring going on, that I wondered if had I sneezed I would probably have faced some equally as uncomfortable punishment!
As anyone reading this, who may have had or is going through cancer, may have experienced, treatment and surgery frequently seem to give your doctor a chance to channel their five year old self, finding their biggest marker pens and drawing, all over you! Pre mastectomy surgery, the trail of dashed lines around my chest area resembled more of a treasure map, there were even two X’s to mark two spots on this one, but with radio the same thing applies, except this time the dots they draw, though small, are permanent. So, there you go, you even get a tattoo thrown in, its all just so rock n roll!
If you are having external radiotherapy, a simulator machine may be used as part of your treatment planning. The simulator moves in the same way as the machine that will be used for your treatment. It uses X-rays to take pictures so your treatment team knows how to position your body when you have your treatment. Most patients will have a computerised tomography (CT) scan to help the oncologist target the tumour accurately. After this CT scan has been performed the radiographer may put small but permanent ink marks on your skin to ensure the treatment area is targeted accurately each time.
A diagram I was given by Parkside Hospital before I started my first course of radio.
After a relatively smooth first round of radio in 2007, lasting seven weeks, daily, at The Parkside Oncology unit, I never expected to have to go through this again but alas, I did, and I have to admit that the second time was a lot more eventful than the first. The procedure was much the same but having only a mere suntan line across the top of my left breast, to show for it thanks to applying buckets of Aqueous cream, which kept my skin supple, I only really suffered from feeling very tired. I cant help think this was exaserbated by the chemo treatment I had had preceding it though and as far as I was concerned, this was the last phase of a very long and challenging year and radiotherapy was a walk in the park compared to surgery and chemo. It was the last hurdle.
‘I would be laid out on a steel bed with all sorts of mechanical contraptions above me, arms above my head and the nurses would proceed to draw all over the breast area, calling numbers back and forth while they lined me up. At least I am out in a few minutes but though chemo was all about the needles at least I could lie under a duvet and scoff chips! ‘
– Diary entry 12th September 2006
Fast forward seven years and the situation was pretty different; A lump in a completely different area but still on the left side of the body, so indicating a secondary breast cancer diagnosis rather than a new or separate one. A new hospital. A husband! A house and village we had only lived in for a matter of weeks. A mysterious second ‘spot’ on my sternum on the PET scan, that was currently relying on radioactive x rays to blitz it to kingdom come or I was facing major surgery, of which I simply couldn’t wrap my head around, and an eighteen month old daughter whose routine was paramount and who I was milking frantically as an excuse to influence my future treatment plan so as to cause as little disruption to her as possible! It was going to be a juggling act and I was burying my head in the mountain of organizing, trying to tap into every possible PA skill I had.
The scar after surgery just before radio started on this area
So, the initial measuring up took much longer than the first time but still cold, a tad uncomfortable and very clinical. The staff had to be so accurate so I lay there, staring at the mouldy grey boarded ceiling, counting the worryingly large holes and trying to work out what lay beyond, in the depths of the dark abyss between this room and the one above, to distract myself from feeling like I had been playing sleeping lions for half an hour! After the kindergarten activities of the countless nurses and students, drawing all over me with various different coloured markers, I was finally allowed to let the blood drain slowly back into the crick of my neck and was told I could dress. My sister was pregnant with her second baby and I knew she had an important scan at the other end of the hospital and she was on her own, so I made a mad dash to be with her. The contrast of being in a cancer ward to being on the pre natal ward, though hard, was refreshing and I found it to be surprisingly well timed, helping me focus on life.
I was sent my dates and details of the radiotherapy schedule a few days later. Seven weeks of daily blasting were plotted before me in a neat little grid. It was ironic really since this part of the treatment felt exactly like living from box to box. I had been given a choice of timings and opted for 12pm each day as I knew my daughter would be napping at this time and would never notice I was gone. We got two days of childcare in place and mum would come for those times on two other days while the fifth day was up for grabs and friends never failed me, offering support to sit in the house while I drove at lightening speed to my dear little sunbed, got my daily zapping while visualising lying on a beach on a desert island, sipping cocktails, and then sped back so she would wake and I would be there, as if nothing had happened. Ta da! The tight daily schedule was like living between straight lines, which was good to keep me focused but only highlighted by the area plotted on my skin and on that piece of paper, magnetised to the fridge as a reminder that this was only for a short time.
Paperwork with my dates and times
My first day of treatment second time around, was pretty memorable. Aside from having a run in with the car park attendant, whose less than sympathetic ear failed to grasp the fact that surprisingly I didn’t have previous knowledge of where my ‘special radiotherapy parking’ space was, left me feeling a little more vulnerable to say the least. On managing to squeeze my car into the most awkward of spaces (my ‘special’ space was unsurprisingly occupied it turned out!) I took a breath and walked into the ward. It wasn’t what I had expected and I felt the ground wobble a little under my feet. The corridor was a sea of patients, no wall space or chairs to be seen and there I was, little old me, young, fresh and ready to go, with a smile sliding ever so quickly off my face, which was fast resembling that of a bunny caught right in the headlights… of a jugganaught lorry!!!
I hadn’t wanted to take anyone with me. The inconvenience to me was enough, so to ask anyone else to accompany me seemed futile as most days I was hoping I would be in and out in a blink of an eye. I also had that common feeling of wanting to protect my friends and family. On this first day, I wish I had ignored my own advice. It was quite daunting and over whelming. I remember literally shoving my head into my bag, in an effort to find my ipad and telling myself just to do something, anything! I had to distract myself and as I did, I heard a gentleman’s voice pipe up from a few seats down on my left, ‘Excuse me love, is that a TV?’ I have never wanted to become as invisible as I did then, but I blinked away the tears and turned to face the man whose voice had just reminded me I was as human as the next person here and we were all in this together. I nodded, dutifully turned the frown upside down and after stuttering loudly over two other, just as frustrated patients, I got up and began a rather lengthly detailed demonstration to dear Pete and Dorris, of how to use an ipad. Who knew I would be advertising the benefits of Apple products to an OAP?! He was a breath of fresh air, a lovely man whose attitude was remarkable and who, with hindsight, I really believe I was meant to speak to that day, if not just to give me a sense of positivity but I felt I had made my first new ‘corridor friend’.
Happy belated 2015! Apologies for the radio silence. What with Christmas and all that comes in it’s wake, finding precious moments to write has been somewhat of a challenge. The very smart SamSpace website is also in the process of being built (So exciting and so grown up!) and Ill be starting another more practical blog alongside this one shortly, so stay tuned! Needless to say, life has been busy but in amongst those first few sluggish days back into real life at the start of January I had a routine PET scan and can joyfully announce ‘no evidence of further disease!’ So much for a dry January then! I can step forwards into this year with a little less weight on the old shoulders! Its great news and it has made this first anniversary, today, a lot easier to deal with.
So, here I am, exactly a year on and though another year older and a few more crows feet marching across my face, Im feeling pretty good! The boobs are still pointing upwards (which is definitely the preferable direction) and though I am still aware of the battle wounds and the feeling sheepishly crawling back, Im patting myself on the back (well as far as I can reach!)
I had been dreading this date. I know from experience this is usually the point I find myself walking mindlessly down the street, enjoying some me time, when suddenly Im stopped dead in my tracks and from no where a tidal wave of vulnerability hits me and I think, Hold on, What the hell just happened?!
A pic from my diary August – December 2006
I recently read a blog by the amazing Kris Carr, a lady who has been a huge inspiration in her quest to show how nutrition and a little self nurturing (whats that again?!) can help us through illness. Every year she celebrates her Cancerversary. She uses the day to reflect on the women she is now and all the positives her experience has given her. I’ve got her ‘Crazy Sexy Diet’ book, I read her blogs and though there are a few things I find a little ’flower power’, Im all for waving the banner for survivorship (don’t worry, I wont be waving my bra in the air!) The word stuck and the idea really made me think about why it should be a big deal, and why it does count.
‘Life stopped and then transformed. Valentines day is a very different celebration now. I call it my canversary, a day of deep self love, reflection, gratitude and re birth. It took me a decade to get to that sacred place but Im here now’ – Kris Carr blog
It doesn’t matter what it is that happened, if something affects you deeply, it will stay with you. It shapes you as a person and with that first year anniversary, its always going to throw up challenging emotions. Don’t look now but that roller coaster ride is about to hurl you around again. We can’t put a time frame on recovery and healing after any life shock. It’s a personal journey but as that date draws near, I often find myself reflecting back, constantly thinking ‘this time last year……’ It’s the classic, ‘if I knew then what I know now’ syndrome.
In my diary nine years ago I wrote; ‘Im finding it hard to stop myself from thinking back to this time last year, thinking,feeling, how I had no idea about what was about to happen. The gift of hindsight is quite scary sometimes.’ – My Diary 18th December 2006
Pic of my second diary and photos.
Maybe it’s the fact that the reality of it is still dawning and after all those 365 days, I’m still taking stock of all the emotions, feelings and events that happened during and since. Parts are still raw and sensitive and emotionally we are still processing and handling certain situations that may have developed in the fall out.
The change in a person, emotionally and mentally, let alone physically, can be instant and for some more gradual. I am definitely more aware of myself; my own strengths and weaknesses, but I have worked so hard to explore the deeper issues this year and after all the attention I have given to my lifestyle and diet in the last twelve months, I can honestly say I feel calmer, more balanced and healthy. It has not been easy and it is always ongoing. However, it has not been a time filled with on going hospital treatment. My diagnosis, surgery and recovery was over within six weeks. My healing has had a longer time frame. The first time around, I had only just finished all my chemo and radio treatment. I was at a very early stage of my recovery and getting to a year felt like a lifetime achievement. I was still vulnerable and moving forward tentatively, re building my life and discovering who I was. The second time, a close family friend had recently passed away and I was told I may be suffering with mild PTSD. It wasn’t a great time emotionally.
There is a reason cancer has a five year remission period. As Kris Carr says, its takes a long time to get to a place of acceptance and appreciation. There is so much for your body and mind to adjust to. The scars will indeed soften, the physical pain gradually eases, emotions become more settled but that doesn’t mean that there wont be a day, for the rest of my life, where for a minute or two, I don’t acknowledge those three major moments in my life. Moments like that never go away.
Admittedly, one of my big goals this year is to focus on mindfulness and living in the moment. I find it a real struggle to focus my mind this way and to just be. Recently, I was talking to my counsellor, she told me that people who suffer depression are often those who constantly look behind them and those with anxiety are those that are looking ahead. I am a walking, talking example of the latter but when it comes to a first anniversary, dare I say, speaking from ‘experience’, I can safely say that for the few weeks either side, I resemble some kind of owl, with a swivelling two hundred and seventy degree head! I’m not depressed but the mixed bag of emotions that invariably comes slightly undone at this time, spills out over whelming feelings of fear, anger, relief, gratitude and realisation that yes, it did happen to me! It sometimes feels like a dream. I’m hovering above myself, like some whacky computer generated movie spirit, watching someone I know go through it all and playing it over and over. How did I do it? If it happened now Im not sure what I would do. Sometimes I feel like a totally different person to the one a year ago and others I feel drained and totally steamrolled by every second of it.
‘Things will never be the same, I will never be the same. I’ve been very up and down over these past few days and So emotional…..I don’t feel very sure about anything as I move forward into the next stage of my life and into a new year’ – My Diary 24th December 2006
Me, September 2006, how far Ive come!
I was talking to a friend recently and she said, ‘it must be like having a scan, like when your pregnant. Once you have seen everything is ok, you can relax’, but then worry creeps back in the further you move from that day and you want to check again, and again and just get to the next scan. It struck me as a good way of explaining it; that uncertainty, that doubt, will always be there, hovering in the back of my mind. Its how we handle that and the coping mechanisms we develop that are important. Marking this kind of anniversary should be a huge wave of self appreciation; for managing that stress, that not knowing and that lack of control. I did it! Ive beaten this thing and Ive survived every inch of it! Im now renaming myself Mrs Incredible (though I think Ill leave the tight red PVC jump suit thanks!!)
Until now, I hadn’t appreciated any reason to celebrate an anniversary of diagnosis. I was consumed with reflection, the side effects and fear. Ive explored more ‘self nurturing’ this year though and although today is the day I was diagnosed, the 25th February was the day of my big operation. So, with that in mind, while I am certified ‘clear’ I will put aside my anxieties, doubts and fears, grab a decidedly dodgy umbrella adorned fluorescent cocktail, squeeze my feet into a heeled shoe (or two), decline the role of taxi driver and un-ashamedly celebrate my shiny (yes, still!) firm (yes, still!) and one year old boobs! Who needs a ‘Cancerversary’ when you can have a ‘New Boob Day’!
This will be firmly stamped in the diary as a day I can celebrate. It will always be ‘a year at a time’, if I have learnt anything, it’s not to be complacent, but there is life ahead of me and when ‘that’ time does come, I want to be able to say that I did everything I could, when I could. If it wasn’t for cancer, I would not have had the courage to share my writing, I wouldn’t have the knowledge and self awareness that I have around my health and wellbeing that I have now and I wouldn’t have met any of the incredible inspiring people who have enriched my life these past few years and encouraged me to share my experiences. Its not just about being thankful, it is about positively and actively marking all aspects of the journey we are on. Just as we celebrate starting life on our birth-days, maybe it would be just as significant to celebrate all those other dates that make that journey more meaningful and makes us who we are, human.
Picture by Sam Toft (I call it my AC (after cancer) picture!)
Then Wendy saw the shadow on the floor, looking so draggled, and she was frightfully sorry for Peter. “How awful!” she said, but she could not help smiling when she saw that he had been trying to stick it on with soap….
Fortunately she knew at once what to do. “It must be sewn on,” she said, just a little patronisingly.
“What’s sewn?” he asked.
“You’re dreadfully ignorant.”
“No, I’m not.”
But she was exulting in his ignorance. “I shall sew it on for you, my little man,…….”I daresay it will hurt a little,” she warned him.
“Oh, I shan’t cry,” said Peter, who was already of the opinion that he had never cried in his life. And he clenched his teeth and did not cry, and soon his shadow was behaving properly, though still a little creased.”
– J.M Barrie
The side effects of cancer can be like a shadow over a patient as they move past hospital treatment and into life after diagnosis. The words ‘maintenance drugs’, are the final stamp on your release from regular hospital visits. They can make us feel safe and secure in the knowledge they are helping our bodies fight against this disease and protecting us but they can also make us feel frustrated and out of control. The roller coaster ride of balancing those side effects is constantly ongoing. Peter Pan loosing his shadow is a great illustration of our vulnerability, conveying how underneath that ‘boy/girl who can fly’ can be a bit of a ‘draggled’ kid simply trying to get back to Neverland.
On my initial diagnosis I was put on the drug Tamoxifen. Tamoxifen is a small white pill, taken daily by patients with a hormonally receptive breast cancer. After a year of treatment this was my one and only maintenance drug. After the array of drugs I had had that year, one small white pill was nothing! I was told, under no uncertain terms, to stay on it for the course of my five year remission.
‘ Tamoxifen acts as a weak estrogen by competing for estrogen receptors. Tamoxifen has mild estrogenic properties but is considered an anti-estrogen since it inhibits the activity of regular estrogens. More accurately, tamoxifen is an estrogen-blocker. It fights breast cancer by competing with estrogen for space on estrogen receptors in the tumor tissue. Every tamoxifen molecule that hooks onto an estrogen receptor prevents an estrogen molecule from linking up at the same site. Without a steady supply of estrogen, cells in an estrogen-receptor-positive (ER+) tumor do not thrive and the tumor’s ability to spread is reduced.’
– Tamoxifen: A Major Medical Mistake? By Sherrill Sellman
Doctors do not divulge the side effects of maintenance drugs too deeply. They are prescribing them to help your body maintain a balance and work alongside the treatment they have over seen thus far. It was up to me to research and learn more but my experience of Tamoxifen initially was pretty uneventful. The only major problem was a delay to my starting a family, which had worried me the most on diagnosis, at the ripe old age of twenty seven, but as I admitted to myself early on, it might help having a partner first! So, I gallantly rode through five years of remission, found myself a husband and then counted the days!
Having thought it may take forever, after waiting the three months after coming off the drug so it was safe, we fell pregnant incredibly quickly. I consider it a literal miracle that within a month the test came back positive. I wonder now if the fact that Tamoxifen had actually been first approved for use as a birth-control pill but proved to induce rather than inhibit ovulation, had anything to do with this!
So, after five years of worrying my ovaries were getting a bashing from all the medical interference, this little pill could have been helping my fertility! Oh the irony! However, on my second diagnosis, there was no time spared before I was put back onto this drug and this time, the side effects were not so easy.
No one ever really talks about how much Tamoxifen can be such a nuisance. Everyone hails it as a wonder drug, but as Sherrill Sellman’s recent blog points out, there is always another side.
While the initial findings of tamoxifen’s role in breast cancer treatment seemed so promising, as with so many of the synthetic hormone drugs, further research presented grave concerns for its widespread use. In fact, the MIMS Annual lists 25 adverse reactions to tamoxifen…
– Sherrill Sellman
In a BBC report a while ago, they discussed how the drug should be available to women at high risk, as well as those who had had breast cancer. Sure, lets talk about prevention, but did anyone care to discuss that there could be huge side effects, primarily menopause symptoms but also pyschological symptoms such as depression as well as blood clots, eye damage and asthma in very sensitive patients? That’s a huge decision for any woman to make, breast cancer or not and making informed decisions has never been so important.
I have struggled with Tamoxifen. I am having wonderful counselling (another blog due about this for BDC soon!) but I go through periods hating how, as a medicine, it is making me feel mood and energy wise as well as battling with having the major choice of having another child taken out of my hands and processing the sense of grief I feel about this. Following a meeting with my oncologist two years ago, to discuss all this, I was also referred to a gynecologist who specialises in hormonal issues.
Sometimes I say the medication is even tougher than the illness.
– Sanya Richards-Ross
Things became clearer when she explained how so many other patients have similar side effects and how common it was to feel like this, emotionally as well as physically. The real knock on effects for a female, of having her natural oestrogen levels disrupted, are rarely publicly discussed so the sense of reassurance and sheer relief I felt after talking to her, were huge. She diagnosed Polysistic Ovaries (whats another diagnosis at this stage?!) and I felt strangely elated with the diagnosis of Insulin Resistance (a major cause of PCOS) as the extensive research into the relationship between this and breast cancer made so much sense to me. I’ve learnt just how important diet and stress levels are to working in conjunction with these drugs that are paramount in my recovery.
Yet, with another diagnosis comes another drug (whose counting?!) and I was prescribed Metformin to help my body process my insulin and work in conjunction with the Tamoxifen. My cravings stabilised and my mood swings improved too. I certainly felt like I had turned a corner and then just as I am getting my head around all of this, along comes Zoladex.
Since a third diagnosis earlier this year, I have started taking Zoladex in addition to Tamoxifen. I had met Zoladex while undergoing chemo. It was prescribed to protect my ovaries from the chemo drugs, but this time, it has been prescribed to down regulate my oestrogen production indefinitely. Clearly my body and oestrogen are hell-bent arch enemies and Zoladex is Batman’s Catwoman, brought in as reinforcements (well, a woman’s touch is always invaluable!)
Zoladex is an implant in a syringe, injected just under the skin every twenty-eight days to three months. It is given into the tummy by a nurse or doctor and it’s pretty clever as it deposits the implant which the body takes as and when it needs it.
Before the menopause, oestrogen is mainly produced by the ovaries. As oestrogen stimulates some breast cancers to grow, Zoladex works by stopping the production of oestrogen from the ovaries. It does this by interfering with hormone signals from the brain that control how the ovaries work. This is known as ovarian suppression.
– Breastcancer Care Org.
I recently had another dose and was surprised to hear that some people actually have a local anaesthetic before this jab! Catwoman eat your heart out! Zoladex is the ‘big gun’ but when I saw the box on the nurses desk the other day, I became an emotional puddle on the floor, reminded again just how these ‘life saving’ drugs can cast a shadow over huge areas of simply ‘living’.
Tamoxifen may have its down sides but compared to Zoladex it was a more straight forward drug. My periods returned three months after chemo finished and the hot flushes were minimal, but fast forward nine years and I have no periods, no oestrogen and every morning, regular as clock work, I wake to a boiling hot drenching of sweat as my body wakes up to face the day. Ice bucket challenges have never been so welcome!!
These are just the drugs I am on, there are so many others to treat all different diseases, all with their own pros and cons. At thirty-six I never expected to be in a drug induced menopause, debating Testosterone implants and wondering if, by the time this remission is over, whether it might actually be possible to start your periods at a mere 41 years old! It’s that familiar pause button, hovering over my head and sometimes making me a crazy lady in limbo!
The effects this all has on a relationship are huge and this often gets overlooked. I’m lucky, I have an amazing husband but it has been testing and a challenge for us as a couple at our age, and certain, not so fun conversations have had to be had, of which most couples wouldn’t have to consider having until at least a few more grey hairs had been plucked! I’ve got an incredible team around me but having had a cancer that, like a bad smell, has just been very stubborn about f’ing off, I’ve had to be doubly pro active in finding ways of living with these far-reaching side effects.
Time is a great healer, on all accounts. Remission isn’t five years for nothing. Just because the main treatment is over, doesn’t mean the daily treatment is. Every day, those pills get washed down and I visualize them keeping my cells clean and clear. They are maintaining my cancer free body but I am also a pro active patient. I try to be massively conscientious in researching the best nutritional advice, new forms of exercise that ground and calm me and courses that can help me manage my daily anxieties, such as mindfulness. It’s one huge mixing pot of trial and error and it never ends. As I look forward, when and if I come off the drugs, I’ll be that much older and will then have to deal with my bodies natural changes and those side effects. I feel like I have had a rather massive head start but just as Peter Pan realises how much he needs his shadow and attempts to stick it back on with soap, maybe we just need some patience too and our own ‘Wendy’ to give us that love, understanding and support, to sew it back on now and again, reminding us how much we need it, and in turn accepting our slightly ‘creased’ appearance. After all, sometimes its just nice to believe in boys/girls who can fly and that;
“All the world is made of faith, and trust, and pixie dust.”
― J.M. Barrie, Peter Pan
This is the final instalment of my husband Pete’s amazing blog about his perspective during my cancer diagnosis. Again, thank you for all the amazing feedback. It is so lovely to know how well received it has been and how it may be helping other partners through what is always a hard and challenging time. Please scroll down to catch up on the previous two blogs if you haven’t already.
We hope you enjoy this last chapter and stay tuned for more SamSpace blogs from me and my guests!
While clearly some hard and sad times, it really has not been a totally negative experience for me. As a couple we are exceptionally strong. I always loved Sam a lot (to this day Sam saying yes was the best sale I ever did… and probably the most over promised) but the way she handled breast cancer (for a third time) made me realise how much of an amazing and strong person she is (oh and the new bigger tits are great!) As a family we are stronger than ever. It sometimes takes an event to make you realise why you exist, why you work. This did that. For sure. Unexpectedly it also helped me understand what I don’t care about. What’s not important. The ‘stresses’ I had that I could simply let go of. I was surprised how many there were.
My Mum with Sam the evening she had her drains removed, a week post op. She was drinking water but clearly Mum was making up for it!!!
I certainly don’t fear more lumps. I certainly don’t look into the future with fear. How could I do so for something that made my marriage even stronger. How could I with a wife who is 3 – 0 up versus cancer.
I am not about to turn this into ‘Pedro’s guide to handling hard events’. I am not in any way qualified to. However, as its my second time I will critique myself. Round Two had seen me crumble. I had boozed too much to ‘cope’. I had been physically present but emotionally absent. I had needed to escape and used day long drinking sessions to do so. This time I didn’t. I was emotionally more supportive. I realised I couldn’t fix anything but I could support Sam by not trying to. I could help normality prevail. I could keep it together. I could be there for Lottie.
Mothering Sunday this year
Less than 0.00000000000001% of our wedding day was planned by me and the actual day was more about family, friends and the forthcoming honeymoon. Certainly the ‘in sickness and in health’ part is low down my list of things I remember, but it’s become to be so very true. I genuinely love every day of life. I am proud to be part of Team Sam and see everything we have been through as part of a long and important journey. Recently we celebrated five years of marriage and while that has included two breast cancer occurrences, it has been great. We have had way more ups than downs. Way more good days than bad days.
Oh and the tax man fined me. One of the things he picked up and fined me over was a five hundred pound cash donation the year before it was declared but not accompanied by a valid receipt. The donation was at an auction Sam had set up to raise money for Breast Cancer UK when she did the Moonwalk in 2012 (three weeks before diagnosis No.2) Oh the irony. Lucky for me I simply don’t care about things like this anymore.
Sam and I on our romantic weeks break in Istanbul in May. Celebrating beating it again!