‘Life is a journey that must be traveled no matter how bad the roads and accommodations’ – Brainyqoute
1st March 2018
As storm Emma and the beast from the East collide on this freezing March (for heavens sakes!) evening, I pull the duvet up a little higher and snuggle down a little deeper. I am hibernating in the aftermath of hurricane hysterectomy!!
Two weeks post op and my abdomen throbs, a little reminder that it is still settling, still snuggling down itself, healing, finding new space. I wriggle to find a comfortable position as I move onto my right side and use a pillow to bolster my left leg to support myself. The last time I had to support myself in bed like this was when I was pregnant and then after my c section. How on earth did I manage with a new born baby too?!
Getting to this point has been a journey! Actually more of a long winded eleven year around the world challenge, but hey, its been an experience! The process of making this decision and pro actively taking this action has been challenging but has taught me that it doesn’t matter how long it takes us to get somewhere, its the journey that counts.
Two years ago I never thought I would have been strong or brave enough to put myself through more surgery, no matter how much risk it eliminated. Throughout many of my Samspace blogs and vlogs I have likened the far reaching side effects of cancer treatment to climbing down a mountain. Finishing treatment might be the summit but you still have to get down and that climb has its own set of challenges. When making big decisions, just like that descent, it can’t be rushed. It is an organic process! Life and all of its twists and turns are all part of an intricate pattern of pathways, roads and milestones, thats why its called a journey. The speed at which we travel this course is a natural process and timing is everything.
Let’s leave the mountain for a moment though and think about volcano’s! Like Vesuvius about to erupt, the side effects of one of my maintenance drugs, Zoladex, had been rumbling for a while, but I had always thought it was normal. For anyone not familiar with this drug, it is a small slow releasing pellet injected into the tummy area, in my case, every three months on alternating sides, and works by down regulating oestrogen production for hormonally receptive cancers.
I imagined it as a little bubble around my ovaries, protecting them but by doing that it forced me into a medically induced menopause, more so than the drug tamoxifen. What I didn’t appreciate was how the surge of oestrogen that I was having as the zoladex wore off, and this dramatic change in hormone levels was causing a chemical in balance too. Last autumn, that volcano erupted and the lava of anxiety, insomnia, lack of energy, disconnection with those close to me and emotional overwhelm poured out and the fiery flow engulfed me.
After realising this just wasn’t normal, I met with my breast care nurse and then my GP. It was gently suggested that some anti depressants may be a short term method of managing the anxiety as no one could give me a definitive answer as to how long I would need to stay on these maintenance drugs. The frustration was just an added factor, manifesting in this constant hum of anxiety. I was four years into my remission, approaching the big 40 and being the control freak I am (and only human!) I wanted a clearer picture of my future, but I couldn’t take any chances. I had such mixed feelings about more drugs. All I wanted was for this fog to lift but the idea of taking more drugs to help the side effects of other drugs seemed absolutely ridiculous! I felt a mix of relief and dread, shame and pride! Discombobulated was my middle name!
I saw my consultant for a routine check up in December. I recounted the last couple of months and he agreed, this was not ok! His view was that since I had had breast cancer at a younger age than most and more than once, I had more air miles left (sadly not to cash in for the Caribbean!) and therefore the treatment plan was less text book, but my quality of life was paramount. I felt like some kind of rare species!
As we talked through the options, of which there were few, we appreciated that the concoction I was on, was clearly working, but to what detriment?! My consultant didn’t want to make any hasty decisions but thought it best for me to see a hormonal specialist in London. As we talked, the words ‘maybe I should just have my ovaries out!’ spilled out of my mouth and all at once, the needle scratched to a halt and the words were left hanging between us, like music notes falling off a page. ‘What about your fertility?’ he asked,
I sighed, ’There aren’t going to be any more babies are there.’ This time I wasn’t asking the question.
On arriving to see Dr Alison Jones, I was reassured by her knowledge of my case, her professional relationship with my consultant and her experience with hormonal cancers. She was amazing. On talking through the situation as it stood, she confirmed that having my ovaries removed was a ‘no brainer’, ultimately meaning I would no longer need to have zoladex as part of my drug regime! She also told me that most pre menopausal women taking three monthly rounds of zoladex are also on the same medication I had been put on, to manage the side effects and that, given my history, another pregnancy was out of the question. With an almighty thump, I landed on Planet Acceptance, the fog cleared, I could see the path ahead clearly and the release that came with that, was immense. The journey had taken long enough!
After seeing my gynaecologist, it was suggested that in addition to removing my ovaries, a full hysterectomy would be advised too. There had been recent abnormalities and after considering my background, she advised it would be better to do the whole lot in one go. It would save any further surgery further down the line as well as reduce any further cancer risk. The recovery would be longer but I was young, fit and otherwise well.
It had been a long time coming, but the wheels were in motion and there was a sense of relief; facing up to the fact that I was getting no younger, that there would be no more more babies, that it was totally irreversible, that I would be post menopausal at a younger age than most, but that my risk of not only ovarian, but uterine and cervical cancers would be non existent and I would only have to take Tamoxifen going forward, far out weighed the concerns. It had been such a huge shadow that had hovered so heavy for so long but now I could breathe. I felt empowered that with the best advice, after going down every road I could, I had been pro active and actively considered all the options and come to a definitive answer for myself and if it hadn’t been for Mount Zoladex erupting a few months before, i might never have got to that point!
The day arrived. We had decided to return to the hospital where I had had my mastectomy and reconstruction, my lumpectomy and all other surgeries, as well as being born there! I was nervous but there was a huge sense of the final piece of the jigsaw being laid, the end of a rather long chapter brought to a close! As we arrived, all my surgery fears were put to rest by the incredible doctors. The amount of spontaneous trust we have, as we willingly hand over our lives to a medical team an hour before surgery, is always slightly unnerving!!
I was given a spinal but I couldn’t have key hole or tolerate heavy duty pain killers (more is the shame!) More needles, more poking and prodding for veins, which always seem to vanish at just the right time, and suddenly, I was coming around. Goodness only knows what I was jabbering on about before I conked out! Its funny to think how ‘with it’ we think we are as we come around from a general too. I thought I was totally coherent and was absolutely delighted that I wasn’t feeling sick. So delighted in fact, that I would tell any nurse or doctor who came over. My gynae said it was sheer entertainment! Oh dear (head in hands, shaking my head in embarrassment!!) That’s a Friday night Ill want to forget in a hurry and I didn’t drink a drop!
During my four day stay, there were emotional moments, there was sickness and there was also surrender. We forget so easily how to let ourselves heal, emotionally and physically. We have to re learn how to let it wash over us and just rest. The first week was tough, I guess it always is. Aneasthetic is a bitch! I defy anyone who disagrees! Each step was a little mountain; getting out of bed, eating a meal, having a shower, going to the loo, walking down the corridor, having the catheter out, getting dressed myself, having the staples removed. All huge, massive achievements. The little things become huge things; necessary hurdles you have to jump during the recovery process. The mind pounces on each accomplishment, savouring every inch, buoyed up, celebrating, until the fatigue descends again and sleep erases it, leaving the slate clean for the next day.
18th March 2018
Now four weeks on, on the one hand, recovery feels as if it has been slow and frustrating but after my check ups, I know I have been rocking it! After being attacked by what looked like a Rymans stapler, (staples in photo below!) the scars on the outside are healing brilliantly. I swear Rosehip oil is the creme de la creme of oils and I was thrilled to hear that the histology of everything that had been sent off for further testing had come back clear of anything sinister! Interestingly, it appeared I had had endometriosis as well as PCOS and my ovaries were the size of shrivelled grapes (god love ‘em) but hearing this was just another wave of reassurance that I had totally done the right thing. It illustrated the power of the mind body connection again, and psychologically I had known this part of me was so suppressed and inactive, it needed to come out! Like some kind of snake, I felt like I had shed a skin.
Emotionally, I didn’t realise how much I would relive my double mastectomy, exactly, almost to the day, four years ago. Everything had been a mirror image, except the area of surgery! I had compared every feeling, every sensation, every little hurdle, to my experience before. I had been in the room next door to the one I had been in before, some of the nurses were the same, it was the exact same time of year as my last visit, I had the same side effects of the drugs. My brain was not switching off either and sleep was interrupted and full to bursting with vivid dreams. I was exhausted but clearly by brain needed to process everythingl too.
Escaping from hospital was like a prison break! I had to get home! My mother in law came to stay and though amazing to have her, she had moved in for a week four years ago too. The similarities continued, heck, Death In Paradise was even on again while MIL massaged my feet (I told you she was amazing!) and to add insult to injury, I even had to wear the same blinking green blood clotting socks!!!! Love that look with floral pjs! Yet, there has been an acceptance in me that has appreciated the importance of this part of the healing process. My house became my sanctuary and the feelings of deja vu gradually passed.
It is all part of the process. The effects of any surgery stay with a patient for a while and we so quickly under estimate the effects. Not only is the process of the toxins from the drugs, working their way through our bodies, slow and debilitating, but the process of pain management and then the reflection, adjustment and acceptance are all physically and mentally challenging. Our bodies are more vulnerable, our minds are more sensitive. To heal, is to hide in a safe and nurturing space. To heal, is to surrender to the help and love of friends and family. To heal, is to let a natural process of repair and regeneration proceed, in its own time, in its own way. All we can do is succumb and trust our ability to do this. It’s not easy and being here again, has highlighted this so much, but with Spring around the corner (albeit a little late, as I look out at a snow covered garden!) and with my big birthday around the corner, this marks a new start, a new chapter, a time to celebrate, and boy am I looking forward to that part of the process!!
When you first hold that little bundle of wrinkled skin and shrivelled gorgeousness, in your arms, your life changes in the blink of an eye. Your carefree days of only having to worry about yourself are gone, your time is no longer your own. You are a mum. You are responsible for another life and the kisses of love and adoration that you pepper incessantly over that tiny head, are full of promises and dreams.
Eighteen months after I gave birth to our daughter, I sat in my doctors waiting room, wishing someone would take me in their arms, swaddle me in a blanket and kiss my head with promises while my dreams whirled around me like some kind of tornado.
I had been diagnosed with a hormonally receptive breast cancer for a second time. Not only did I have a husband this time around but I had a daughter, and the thought process that went with that minor detail made for a completely different thought process than it had before, seven years previously, in my twenties, when the most important thing to worry about had been whether to have white wine or red wine with dinner!
The plates we spin as mums are many; kids, routine, family, lifestyle, work, relationships, but when we are given the almighty serving dish of a cancer diagnosis to spin alongside, it takes so much of our attention to keep it spinning, that we can often find ourselves watching on while the other plates wobble to a lazy end and then crash to the ground.
A mothers love is a powerful thing but when I saw her toddling towards me on my return from that awful appointment, I felt totally helpless. What did this mean for her? How would we explain this to her? Who would look after her while I went to all my appointments? How much of her life would I be around for now? How was I going to cope with her energy? Does this mean she might be at risk?
As we processed everything, I put her to the top of my list. I wanted to protect her and I didn’t want her to notice anything different, but as details began to emerge of the treatment plan, I realised that her routine would be affected and we needed to manage that. Communication was key, but how do you tell a nearly two year old? How do you tell any child you, or a member of your family, have Cancer?
In this case, we kept it simple and related it to the global pink phenomenon that was then Peppa Pig. In all his glory Doctor Brown Bear stepped up to the mark and we told her that Mummy had an ‘ouch’ and would have to have daily visits with Doctor Brown Bear to make it better (though she looked understandably put out as to why she wasn’t invited too!)
But when, another eighteen months later, I had a third diagnosis, words failed me, never mind finding more to explain to a three year old. A child’s world is only as big as they are, their scale of reference is relative to their age, so the complexities of explaining to them something that is so often associated with death, becomes one huge scary issue!
My daughter was very young on both occasions, so we could just about manage the language and wave of questions that were fired at us like bullets, as we muddled through treatment and surgeries, but I was aware that she became clingy, a bit tearful and though generally happy and her normal outgoing self around others, the mothers guilt feasted and leapt upon these minor fluctuations, and self doubt and vulnerability caused my confidence as a mother to crash.
The hardest part for me was the huge black cloud that is the ongoing state of my fertility. A four year old’s radar for different family structures asserts itself considerably and when the question i feared the most was suddenly vocalised, it felt like a bomb exploding. The pain and the gut wrenching twist of my stomach, totally floored me, ‘Mummy, when will I have a baby sister or brother?’
Trying to keep language simple and not dissolve into a puddle is hard. We can’t predict their questions, we can’t guess what they will say next. So how do we manage issues such as the change in our appearance and hair loss, with older children? How do we tackle the sometimes debilitating fatigue and side effects of radiotherapy and chemotherapy? Or, as in my case, how do we start a dialogue with children post cancer, and discuss the far reaching side effects on ourselves and our families? After my own experiences and talking to so many other patients and survivors who are also, first and foremost, Mums, I realised that the support for us, as a group, is not as accessible as it should be. When the darker and more intense issues surface and we are still spinning all those plates, who do we go to? We push the panic deeper down inside us. Oh for that darned instruction manual!
Our children are individuals too. They may open up and confide in us or another member of the family, but they may also turn inwards and become guarded and defensive. If we focus on Cancer as a thing are we overwhelming them with issues of mortality? If we don’t, how can we control what their friends and outside influences tell them? Our mummy minds are a hot house of contradictions and once again we feel helpless to the things we can not control! The unknown is a scary place and as mothers, we will always claim that responsibility to protect them from anything that may jeopardise their innocence.
Parenting Support and Samspaces recognise all of these concerns and complexities and are collaborating to offer a series of workshops to support and nurture these feelings and concerns. With tools, tips and models that have worked effectively in other tough parenting areas (divorce, separation and siblings with special needs) our aim is to provide a safe and honest space for mums affected by cancer, directly or indirectly (it could be another close member of the family,male or female) to discuss what it is we need to feel calmer and more productive, what we can do to support ourselves and our children in a more positive way as well as discussing how we can move forward while creating a new family normal. Perhaps, together, we can implement small changes and take slow, baby steps; like taking ten minutes each day to allow ourselves to separate from that intensity and play, interact and engage with our children, creating a more positive environment for them, while offering a safe space where things are familiar again.
In light of everything, I am so proud of the girl my daughter is becoming. She may push us to the edge with her insanely early wake up calls, but she is her own amazing person. Recently, when I tried to explain to her, what Cancer was, now she is older, she told me, quite adamantly, that Alzheimer’s is way worse than Cancer because Great Granny has that! I realised that in her world, Cancer can’t be that bad because I look fine, however Great Granny is slightly less fine! Kids are clever, they pick up on everything but whether two or eight, I am proud she has seen that a mother can be strong, brave and honest and if she grows up knowing nothing else, I want her to know,
‘A mothers love for her child is like nothing else in the world. It knows no law, no pity, it dares all things and crushes down remorselessly all that stands in its path’ – Agatha Christie.
And that, my darling, includes Cancer! x
To reserve your spot on the first FREE workshop on June 6th 2017 click here;
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!)