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.
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.
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.
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?!
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
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.
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.
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.
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.
Following on from my hubby Pete’s first blog last week, here is the second instalment. For anyone who hasn’t yet read the first, please feel free to scroll down below this one and you will find Part 1! We have had such a fantastic response to this addition to SamSpace and I am so unbelievably proud that Pete has been brave enough to write this (and let me share it with everyone!) The third and last part will be posted next Thursday but please forward to anyone you may think will find it helpful. It is so important that the men, partners and support networks, in these situations, are given their own support and solidarity. Enjoy.
‘It’s cancer’ is hard enough when you are sitting next to a loved one. It really is. It puts a halt to everything. Being thousands of miles away was testing to say the least. It was about 9am New York time and the first flight I could get home was 7pm. To this day I don’t know what I did for the 10 hours. There was whisky and a conversation with Noel Gallagher in the BA lounge – I remember that bit but the rest is a blur. We have been lucky. We have phenomenal friends and family supporting us. I don’t have time to mention them all, but that day, while I was helping myself to scotch and trying to find out who Sally was and what she was waiting for, Sam’s dad (affectionately named ‘pops’ since grandkids arrived) was my stand in. He had accompanied Sam to the appointment. He was so calm and supportive that day. I always want all the facts. ALL of them. Was Mr. Kissin smiling? Was he nervous? Will the next appointment be Monday or Tuesday? When is the operation? As the person processing the news it’s impossible to have all the answers and Sam passed the phone to Pops who handled my interrogation with great calmness and understanding. I will always have great respect for him for that. I sometimes forget that he is discussing his darling first born daughter and is as distraught as me. Another man who would, I am sure, outrank me should ‘ze germans’ come again.
‘It’s simple – we are going to spend three days doing tests so that in five days we can tell you if its spread all over her body’. Oh great! Flipping awesome. This will be an easy five days. I doubt we will worry much at all……! Lucky for me Sam had a schedule and ‘worry time’, predictably, wasn’t in it. Moving from hospital to hospital / test to test. The biggest disagreement I remember (and I am sure my mind is just selecting the good parts!) was that Sam, who is always suspicious of her diet for causing cancer – which is strange as there are members of yet to be discovered Amazonian tribes who eat more fast food / unhealthy food than Sam – wouldn’t consider a Big Mac in between appointments!
The next few days, while we waited for results, were a blur; Whisky induced sleep. An understanding (new) boss. Support from friends and family. Food, my god, food. Sam and her friends cook in the face of adversity. I honestly believe that, five months on, we have donated meals still in the freezer. I had to start asking guests not to bring food as it was blocking access to the kitchen (when Sam came out of hospital it changed to chocolate biscuits – literally hundreds of packets donated by guests). Lottie was in heaven!
The very personal and hard decision to ‘carry one as normal’ is one of those ‘easier said than done’ calls you make. We discussed it, and with hindsight, knew it was the best thing to do. You feel guilt throughout, but, you carry on – yes Mr. Churchill, we will keep buggering on. Calling the Mount Alvernia hospital to see if Sam had awoken from her double mastectomy ten mins before addressing a thousand bankers at the Natural History Museum will always be a strange memory from this bizarre and foggy few days of my life. Spending the days trying to work at a new job and helping Lottie have her normal life while mummy fixed her ‘ouch’ (again heavily supported by family and friends) was not easy. Then nights sat next to Sam’s hospital bed. Yet, strangely (and only when writing this blog did I realise this) I look back with fond memories.
Sam would sleep while I would watch soap operas and eat the endless supply of Maltesa’s. Daily she got stronger. One day she even asked me to bring in Mac Donald’s! Clearly, she still blames the drugs!
The excess baggage that Sam had with her when leaving the hospital. Who needs two wheelchairs to leave a hospital?!
Having Sam home brought its own set of sleepless nights (well sleeping on a sofa after a days work is never going to be the best nights sleep) but I honestly felt Team Reynolds had fought back again and though the waiting and being away had proved challenging, I knew we had over come another one of life’s boulders by finding a way around it rather than chipping away at it.
Over the next three weeks I want to post three blogs written by my darling hubby Pete. He wasn’t around when I had BC the first time, but he has been around for the last two diagnosis and from a man, and a partners point of view, I thought it really important that he had a chance to express his thoughts and feelings. I was so chuffed when he offered to write something. My most recent blog for Beauty Despite Cancer was about the importance of the support network around us during illness, so what better way to compliment this by my own husbands story.
The first part is below. Enjoy!
Christmas had been fantastic. Lottie was three and now old enough to enjoy it. I was on gardening leave. Sam was on awesome form. As a family we love Christmas. We really do. Power cuts meant that we had ended up hosting Christmas day for twelve people with only a few hours’ notice. This, a day after hosting seventy people for Christmas Eve drinks in the dark at our home, Street Farm.
A weeks sailing and relaxing in Antigua was the perfect end to a perfect festive break. Sam, Lottie and I were (and still are!) a fantastically close and happy little family.
Sitting in the airport sharing an apple juice with Lottie I expected to return to England with a bump…. cold and rainy, a delayed garden project, a new job and a tax investigation were all on my ‘to do list’ for my arrival. Less than ten days later that list would all seem so damn unimportant.
They always say that you remember exactly what you are doing when big events happen. I agree with this and can remember exactly where I was when, for example, when Princess Diana died, where I was and who I was with when England won the Rugby world cup, the exact beer I had before asking Sam to marry me. This is no different. Four days into my new job I was on my first contract negotiation with a European Bank (that I won’t mention but remember clearly and will never forget). I would like to think that this part of my job is something people would recognise as a strength and I was, no doubt, looking to show how talented the new boss was. I missed a call from Sam. Then another. Then a ‘call me ASAP’ text. OK it’s time to mute my line and see what’s up – I’m going to be pissed if it’s a ‘can you pick up some milk at Waterloo’ call.
It wasn’t. It was the earth shattering, gut wrenching and all too familiar – ‘they found a lump call’. They think it could be cancerous. Oh bollocks!
It’s always been a family joke how my grandmother was more senior than my grandfather in the Second World War. Captain Marjory Reynolds was always calm, organised and matter of fact. Lieutenant Mike Reynolds was more gung-ho, wanted to go ‘over the top’ three days before any one asked and went on to win the Military Cross for bravery behind enemy lines as part of the Long Range Desert Patrol – a regiment that was to become the SAS. While I doubt I would have had the level of bravery he had I have always found Sam and I similar. In the face of a challenge she is very matter of fact. She looks at the facts. She makes a plan. ‘It’s nothing until it’s something’ must have been mentioned three hundred times. I however fall into action mode and want to fix things. That afternoon. I want to get Mr. Kissing (the surgeon who is now firmly ‘Mark’ and a family friend) that afternoon and demand action. NOTHING he is doing right now is important. NOTHING. I have to be doing something. We need to go over the top NOW!
I remember (a few days later) leaving an appointment with Sam. Mr Kissin had asked her to book a scan (don’t ask me the type, there are simply too many to list) on the Monday so he could see her on Monday afternoon. The exceptionally nice lady on reception (who had the misfortune of having to book the scans that day) mentioned that the next slot was on the following Wednesday and I nearly killed her. I don’t know who was more embarrassed – Sam or the lady (or maybe me now). I put this down to my ‘action mode’. Something I have come to realise I do when I have nothing else to offer. I am out of control. I can’t fix anything.
Back to the day – Sam brings back normality. She is matter of fact. It nothing until it’s something’. Next week we will know. Tomorrow we have dinner with friends – yay, how exciting. Life is normal until then. Cancel next week’s New York trip? Why? You assume something is wrong?
We make a plan. I agree with everything and promise to get home ASAP. My life freezes. While trying to pretend I care about payment terms, cancelation periods and liability my mind goes on a destructive journey (I kind of think some people have to do this to kick off the positive thinking). I am going to have to take Lottie to her first day of school on her own. Who the HELL is going to explain periods to her – I basically don’t know what they are! What age can she start wearing make-up? Shit Sam, I need you to beat this once again. For Lottie’s sake!
It’s not humanly possible for me to wait when I am nervous. Waiting for a train wouldn’t work so I hailed a black cab and headed home. I remember smiling as I remember doing exactly the same when Sam went into labour to have Lottie – and also the second time Sam was diagnosed (although not so happy at that memory). Whatever happened I felt we were a strong team.
The second instalment, ‘The Following Days’, will be published same day next week!……….
NB There are photos at the end of this blog of my breasts post surgery. Please understand that I have posted them here as a reference and as support for others facing similar surgery. These are deeply personal to me and are my property.
“My fore-parts, as you so ineloquently put it, have names.”
I pointed to my right breast. “This is Danger.” Then my left. “And this is Will Robinson. I would appreciate it if you addressed them accordingly.”
After a long pause in which he took the time to blink several times, he asked, “You named your breasts?”
I turned my back to him with a shrug. “I named my ovaries, too, but they don’t get out as much.”
― Darynda Jones, First Grave on the Right
Six weeks ago I brought my new twins home, nameless I might add! Small and innocent they, like typical newbies, have been giving me sleepless nights and though very shiny and very new they are definitely non identical!
After having these two totally alien additions attached to my female anatomy I confess I am only recently feeling human again. Coming home with two drains out of an original four meant moving anywhere initially was a tricky tango around tentacles. Hiding them from a three year old and a playful Labrador proved quite the challenge! With my rocks and my bags (and I am not talking diamonds or Mulberry’s) the first few days of recovery at home, were interesting. Add to the mix my mother in law moving in, an exhausted multi tasking husband sleeping on the sofa, me hibernating in the spare room, village nursery run rotas, haphazard dog walks, ballet and swimming lessons, we gave into topsy turvy and the control freak in me was forced, under no uncertain terms, to take a back seat! I willingly obliged. My decision to have this op was grounded but despite knowing what a big procedure it was, I have still been over whelmed, turned inside out and backwards.
I’m now exactly six weeks post surgery and I am starting to reflect with some humour on the whole process leading up to this significant stage of my life! It was slightly amusing to be informed that an enlargement would be necessary whether I liked it or not as they don’t do implants in a double A. Well, why on earth would they? Having had to accept (rather begrudgingly) that I was actually more a triple A (let’s just say, a croquet lawn would have been jealous!) I have gone up in the world and am currently sporting an unnaturally firm, rather static and for me, positively voluptuous A cup! Compared to BC (Before Cancer) my ever-supportive husband thinks Pamela Anderson has moved in!!
I, however, feel like a pair of tennis balls have been sewn into me. At first it felt like the cavity of my two breasts had not only been stretched like a piece of elastic, but filled with spiky granite rocks and an A cup felt more like a C! In hospital, it felt like I had small weighted boulders cello-taped to my chest when I hauled myself upright and what with the surgical drains, intermittently hissing pumps on my compression stocking covered legs, (apparently massaging them to prevent DVT. Not really my idea of relaxation) an inflatable cellophane bag over my breasts pumped with hot air to keep my blood circulating and don’t forget the attractive greasy hair limply framing my flushed face (why oh why are hospital rooms always so hot?!) I felt, and sounded, more like a villain from a superhero comic on a ventilator, than a human being! On glancing down at my new accessories that first night, while being shoved into a sports bra, all in the name of support, (I’ve clearly never had to worry about that one before!) since they were covered in clear bandages, I couldn’t work out how I even had enough skin to cover the small mounds that were now stuck on me.
‘Small breasts are best for the long haul’
– Norman Rush
I have, thankfully, escaped another course of chemo as the cancer had not spread to my lymph glands (after a rather stingy sentinel node procedure pre op, and countless repetitions of a positive mantra I composed, I have never been so relieved!) The nipple was also clear so I have kept the originals though despite being hot or cold, they don’t seem to change! Regardless, the histology report suggested the lump was growing, so having opted to have them both taken off was possibly the best decision I have ever made. Having had radiotherapy on my left side the skin is thinner, more fragile and less flexible, so when the surgery was confirmed I used Rosehip oil to help strengthen the skin and keep it supple. Now, post op, I’m rubbing in oil twice every day. Our bodies are amazing. Though still not quite firing on all four cylinders, on the outside my body is healing dramatically and adapting quickly. It’s incredible to watch. With a very brave first look in my own bathroom mirror, day eight post surgery, it was also incredible to see my original skin and all it’s familiar markings stretched over these two larger lumps which, in shape, are so unfamiliar! The bruising is now vanishing, the stitches disappearing, the swelling decreasing and I can only marvel at my surgeon’s handy work.
The recovery from an op like this, is definitely psychological; getting to know your body again and adjusting to it. You’ve been cut open, moved around, scooped out and put back together again and though only localised to those areas, they still look like something out of Frankenstein for a while and it’s hugely unnerving. One minute you know your body inside out and backwards and the next, you wake up after a mere four hours and you don’t know it at all. The side effects of the anesthetic, pain killers and anti sickness make you feel rather like you have been run over by a heard of elephants! Even more disconcerting are the sensations that are so different, sometimes not being able to feel anything (though I do wish that had applied to having my bloods taken!)
As much as the ‘twins’ and I are bonding, I’ve also learnt to appreciate that these babies have completely knocked the stuffing out of me, which is ironic really since their originals literally had all the stuffing taken out of them! The whole thing stinks of irony. I joke about bringing home the twins but due to all three of my diagnosis being hormonally receptive, the option of having more babies has been well and truly taken out of our hands now. Admittedly there is an element of relief to this, as a few months ago we had no idea what the options would be after remission and I was struggling to deal with that uncertainty, but never the less, having the decision made for you is never easy.
Obviously this time around the Tamoxifen did not work as effectively as usual and medically they don’t know why this happens. As always there are going to be unanswered questions but for now I am having the drug Zoladex in addition to Tamoxifen. I was introduced to this drug initially during chemo, to protect my ovaries so I could have a baby, now I’m having it to shut them down to protect all of me and stop me having babies. Being thirty-five years old in a drug induced menopause, isn’t what I had planned, neither are the now regular nightly hot sweats, (having a window permanently open is neither helping me or my husbands temperament!) but luckily I haven’t started throwing saucepans quite yet! Standing at this threshold in my life, there is, I confess, a shadow of sadness reflected in not being able to add to our gorgeous family, but, deep down, I know how lucky I am. I have a beautiful daughter and I am a mummy. We have been blessed with one and one day she will be educated to this wonderland but for now, she has a childhood ahead of her full of fun, love and security.
Going forward, I am looking at the positives. I don’t have cancer. That’s a big pro (understatement of the year!) but never the less, having cancer once, let alone three times, leaves your head spinning. This time, it’s been strangely more straight forward than the two previously, for various reasons, but this time, I feel I am in the driving seat. I am more in control than I have been before. By making this decision and taking action, I feel empowered and the rabbit hole doesn’t feel as deep, as dark or as foreboding. That doesn’t mean I have not been deeply affected. I admit I will be dealing with all the massive implications all this has had on me, my life and for my family for a while. I know there will be more hurdles to cross but perhaps I feel more prepared for them. I don’t want cancer to define me but as I have said, being this age and having had the experiences I have had, surely it is vital to use them pro actively to help others, honestly. It is life changing but it has made me, me. I have survived, again. I have beaten it, again. I am more aware and more compassionate and I can’t help but want to nurture that. Let’s face it, despite my disbelief of having to deal with this a third time, the way I see it, this time I’ve been falling down the rabbit hole with air bags! I’m not sure when I’ll land but when I do, at least the bump might be a bit softer.
‘I hope people realise that there is a brain underneath the hair and a heart underneath the boobs’
– Dolly Parton
I was not at the front of the queue when the gift of patience was handed out. Before motherhood I thought I had it in plentiful supply, then I had a red haired daughter and now I wonder who I was kidding! Patience is certainly not my strong point so faced with the disconcerting wait for medical results on yet a third lump, this last week, has been a test of gigantic proportions. The waiting game, for anyone and for anything, sucks! Standing on the edge of the (increasingly bottomless) rabbit hole this time has been harder than any of the two previously. Another major pause button on a life I just got back after the second time. Now, I am less naïve. I know the drill. The grueling circus of ultra sounds, mammograms, and the hideousness of guided biopsies and every ‘smartie tube’ type scanner under the sun, examining every inch of you with a microscope, concluding in two thousand cups of earl grey, a box or two of Kleenex, and a dollop of déjà vu, has descended upon me again causing a somewhat schizophrenic mindset.
The confusion and shock are instantaneous. I sit and try to breathe, like one deep breath will take it all away. So I take another. I can do this. I can do this. Over and over until my father rushes through the door, after a tearful phone call requesting a member of family to get here as soon as possible, to hold my hand through the biopsy and drive me home. Unfortunately, in my bewildered state I seem to think it the right opportunity to make formal introductions and introduce Dad to my sonographer as my husband!
As I titter on the edge I try and use the craziness of my previous ‘experiences’ to take stock. The tidal waves of worry, fear and anxiety are frenetically interspersed with moments of positive clarity and absolute certainty that all is well. I’ve been here twice before (can’t believe I can say that!) and the biggest lesson is that you can not predict anything, nothing is as you expect. I am at the mercy of the unknown. It doesn’t get any easier, it just gets harder; more claustrophobic and more intense. The dog wags her tail at me, almost daring me to take her on yet another eight mile walk! Each time is different but still I unwillingly surrender to all that I can’t control. All you have are the minimal facts, the anticipation of joining the dots as you go from one appointment to the next. The fact that there is a lump. The fact that it is not a cyst. The fact that it is cancer. The fact I’ll have to have more scans. I spend the first night trying to calm the mental tornado of possibilities. To make things worse, I randomly eat fresh beetroot and nearly cause myself a severe heart attack when it comes out the other end! Note to self, there are certain things that shouldn’t be eaten when waiting for the results of a full body scan!
Today on twitter I was told my blog was valuable because it made someone laugh and cry. Little did they know I was currently enduring a period of waiting that did exactly the same. To laugh at the madness of the situation and cry from the over whelming frustration and fear. I don’t want to tell anyone. I need my friends. We don’t have all the information. I want a hug. I don’t want to worry or scare anyone. They can help distract me. It’s so tedious, so boring but, this is me. This is my life. My friends want to help and support me. I must let them be my friends and do just that. We need support, we need others to lean on but what I find so excruciatingly hard is that very few can really empathise and I feel a small ball of irritation erupt inside me, the question that constantly navigates my brain; why am I the one that keeps getting hit with this?!
Every thought that pops into my head speeds across my consciousness like an out of control Ferrari on the Nurburgring! One second I’m staring mortality in the eye and wondering if I’ll see my daughters fourth birthday and the next I’m planning a celebration tea party for the end of the next week in a bid to prove everything will be ok. Keeping ‘business as usual’ is the only way of dragging myself through this quick sand and maintaining normality for my little Lottie, who has no idea what is going on but seems to be reveling in the attention. Oh to be three.
It’s important to let the natural thought process carve this route. I am only human and it is clearly not a normal situation. Actually, it’s pretty exceptional and therefore it is unchartered territory. I’m making my own rules. Yet, as the constant drip drip of thoughts leak into my mind, I appreciate the organic and raw nature of this process. I am trying to be in the moment but I am terrified. I am feeling fear in its most naked form and trying to ride the wave, acknowledging every notion. I actively guide my thirst for positive thinking and I design new mantras, lining them up like the front row of an army, daring any negative ones to approach, to knock them down brutally and banish them. Thoughts are not facts. I’m clinging onto that with every ounce of strength I have and I am exhausted.
‘Just throw away all thoughts of imaginary things,
And stand firm in that which you are.’
Another one skips through. Another breath. I am feeling thankful. I am thankful for this one lump because I can now take physical steps to lower future risk. To blow this big black hovering cloud from over my head and move forward with my life with a little more peace of mind. I have voluntarily opted for a double mastectomy and I’m relieved. I’ve said the words out loud and offered myself. It’s the bravest, scariest thing I have ever (soberly!) done but my gut feeling has never felt so strong. There is a long road ahead of me; tail backs of recovery, pot holes of emotion, slow Sunday drivers of frustration and lunatic speed demons of sheer faith and risk but I’m in the driver seat and I am in control. I will win this race.
I always thought the post treatment angle was what kept my writing different and fresh, now here I am, writing from the thick of it. (Maybe this is something else to be thankful for?) I am no different from anyone touched by cancer, during or after, if you have had it once, it’s always there, simmering in the far reaches of your mind. A series of stepping stones across a very wide and sometimes turbulent river. I know I’ll make it across, just like last time and the time before. I just have to take my time and be patient. Oh how I hate that word!
I don’t feel ‘amazing’. That word has become hard to hear. There is no glamour in this. I am not a super hero. I am surviving and making necessary decisions and enduring this free fall down the rabbit hole because I don’t have a choice. For whatever reason, this is happening. It is what it is. Patience comes in waiting for things to unfold, mindfully recognising the chaos of change. Suddenly I realise that if I didn’t have any patience, I wouldn’t have got this far and if patience is indeed a virtue, I just hope it’s one which I can justify with grace and success. Another thought flashes past. Another breath. Perhaps I was nearer the front of the queue than I thought x
If I were asked to give what I consider the single most useful bit of advice for all humanity, it would be this: Expect trouble as an inevitable part of life, and when it comes, hold your head high. Look it squarely in the eye, and say, “I will be bigger than you. You cannot defeat me.”
– Ann Landers
'But I don’t want to go among mad people,” Alice remarked. “Oh you can’t help that,” said the cat; “We’re all mad here.”
― Lewis Carroll, Alice in Wonderland
Completely ridiculous….This is crazy…..Ha ha very funny…..hold on…..Seriously, your talking about me?
These were just a few thoughts racing through my (already spaced out) head when my consultant and oncologist both started using the word chemotherapy in reference to me. I didn’t feel ill. I didn’t look ill. The images the word conjured up were not in the least bit assuring. Then, I only go and make it worse by ignoring the advice of new-best-friend-Breast-care-nurse and start googling it the next day and wonder why I am a puddle on the floor, jamming at the remote, searching for Sponge Bob and desperately looking for a tub of Ben and Jerry’s at 7am in the morning!
For the first couple of weeks I felt like an actress. This life wasn’t real. I was falling down that rabbit hole fast and resistance was not an option. However, once the lumpectomy had been done, and we waited to hear the results, I actually found myself wanting chemo (Now who was crazy?) I figured if I had youth on my side, wouldn’t it be safer to blast me with the whole bloody lot so we had crossed every last one of those dam T’s? If I had fallen this far down, I may as well go the whole course. I was anxious my team would decide against this form of treatment and vented my concerns in my diary. The madness of Wonderland had clearly struck hard and fast!
‘I feel angry that I was made to feel chemo was imperative. Ive been getting my head around it all and today I am practically told it’s all fine. It all went SO well and now I’m so confused and most of all, I am so fed up with all the waiting.’
– Diary, 4th January 2006
Everyone is different. If I heard that one more time, but its true. Any other person diagnosed with the same cancer will have their own catalogue of treatment, their own personal puzzle of questions and answers. The treatment program is so unique it becomes a special mark, a new stamp of identity, like a badge of membership into some elite club. I was quickly given my own program and as those six months stretched out in front of me (like some warped community service sentence) the realisation dawned; madness was compulsory. It was my ally. I was going to have to find my sense of humor and use it as my shield.
I’m afraid I can’t explain myself, sir. Because I am not myself, you see?”
― Lewis Carroll, Alice in Wonderland
After signing endless consent forms and totally surrendering control to the doctors, I tried to disregard the feelings of frustration and instead put complete trust in my team. The first day arrived, pretty much a month to the day post initial surgery;
‘I am force-feeding myself porridge with soya milk. It’s two degrees outside and dull and grey and inside my stomach is already a snow storm.’
– Diary entry 3rd February 2006
My own mad hatters tea party had begun. Every three weeks I would arrive on the day ward, chirpily order chips for lunch (which I would lavishly eat in bed – oh the things I could get away with!) and have my bloods taken. While I suffered from first day nerves, Mum suffered from a mild personality disorder and went from Florence Nightingale to Hitler in the space of five minutes, marching down corridors, authoritatively demanding an ETA on the drugs, as if they were royalty. The wait after bloods to undergo the chemo was excruciating (but let’s face it, while the patient is sweetly hostessing the party, she needs an ally in tow who can throw their weight around as maître D! A job my mum did proudly!)
My oncologist had warned me not to expect a thunder-clap; they wouldn’t start administering the drugs and the world would end, but there I was expecting a big black cloud to explode over my head while I held my breathe and did my best not to imitate Eeyore! There was, however, the cold cap to spur me on. Jockey Sam was in the room, riding ‘very-uncomfortable-hospital-bed’ with added bonus of freeze brain, and wearing a very fetching hospital gown. In a (rather fruitless) bid to save the luscious locks, my oncologist suggested I try the cold cap, a jockey looking hat which is designed to freeze your hair follicles during chemo, to prevent hair loss. He hinted it probably wouldn’t work, so what the hell, we gave it a try anyway. For the entertainment factor, it was a winner, for keeping my hair, a disaster (blog re hair loss to follow soon on the Beauty Despite Cancer website.)
‘So this is what it feels like having your head shoved in the freezer. I can’t hear a dam thing and I’m constantly shouting. This treatment is going to make me deaf and bald!’
– Diary entry 3rd February 2006
I had two sets of drugs; FEC and Taxotere. The FEC was manually administered by angelic nurses, who would bring a literal suitcase of syringes (how very Bond!) and work through one at a time. It was time consuming to say the least. My ‘sober hangover’ would kick in day two post treatment and I would retreat on my very exclusive ‘hibernation weekends’ to my parents house, spend forty eight hours in a pair of comfy pjs in front of mindless TV and give in to the tidal wave of restlessness. With Worthers Original in one hand and a lovingly homemade juice in another, one to replace the metallic taste in my mouth with something sugary and one to replace missing minerals (chemo certainly has its own set of contradictions) I was all set! Mum reminisces how I would wheel spin out their gravel drive day four post chemo, as if nothing had happened, leaving her a mere shadow of her former self.
The first three sessions passed and I became more familiar with the (once un fathomable) process and the gruelling three days post. After my third session I suffered a delay because my white blood cells were not high enough. We had been warned this may happen but the delay only resulted in intensifying my fear of needles, since for the following week I had to subject myself daily to self administered injections to raise my white cell count. Luckily this only happened once but self-harm now had a whole new meaning and since chemo my veins have never been the same. They took such a thrashing that gradually getting the line in became so traumatic, it involved mountains of hot water bottles, countless pillows and enough stress ball squeezing to rival Louis Walsh at the X Factor final! On several occasions Hitler (aka Mum) demanded a doctor to come and do it (oh the drama!) but I had chosen early on not to have a picc line because, on a personal level, I didn’t want the constant reminder of chemo hanging over me on the days in between. It was bad enough having the added monthly injection of Zolidex (apparently protecting my ovaries required a needle the size of a canon) added to the list. Yet, my saving grace, that got me through those chemo sessions and helped me deal with resembling a veritable pin cushion, was what I fondly refer to as ‘my little blue pill’!
Now, this had Eat Me written all over it! Though I’ve never been, shall we say, ‘rebellious’ enough to take drugs as part of my adolescence (I willingly admit I am a weed and prided myself on never getting so much as a penalty let alone detention, at school!) I made up for it with the ‘pre med’ dosing of Valium, which, added to the array of anti sickness pills given post treatment, made me an official pill popper! On a chemo Friday, at 8am, an hour before leaving the house, I would knock a Valium back and as the course neared its end, there were occasions I was so spaced out and relaxed I literally blanked out conversations, journeys to and from hospital and doing anything remotely human. I came down from my bedroom one Friday afternoon and innocently asked mum when we were leaving for the hospital! Just as Alice fell deeper into the chaos of Wonderland, I fell deeper too and just like the caterpillar smoking his pipe, I was enveloped in my very own blissful mindless mist!
‘She stretched herself up on tiptoe, and peeped over the edge of the mushroom, and her eyes immediately met those of a blue caterpillar, that was sitting on the top, with its arms folded, quietly smoking a long hookah and taking not the smallest notice of her or of anything else.’
– Lewis Carroll, Alice In Wonderland
After eight sessions over twenty six weeks, I felt like a bald, baby faced Boudica! Hair loss, nausea, swollen parts of my body I didn’t even know existed, bloated stomach, constipation, insomnia and fatigue just some of the array of side effects. As crazy as it sounds, on hearing other stories, I often think I got away lightly, but we all have our own tale to tell. All these little things contributed to my story, my climb and the diary I kept writing through it. It was hard, there were a couple of horrendous sessions where, like Alice, I was reduced to crying rivers of tears; of frustration, discomfort and sometimes just sheer fear, but what would throwing a tantrum do anyway? I realised early on, it was better to ride the wave because banging my fists on the floor wouldn’t change anything. So, mustering a degree of humor and an element of madness, we battle through, all in an attempt, really, at self-preservation. My moto became ‘Keep Buggering On’ because when the universe throws you a curveball you simply have to throw it right back!
“You’re mad, bonkers, completely off your head. But I’ll tell you a secret. All the best peopleare.”
― Lewis Carroll, Alice in Wonderland
As a brief little intro……… After my initial diagnosis in December 2005, the first hurdle to tackle was the lumpectomy, one in a long line of major events that I want to relay chronologically before discussing some of the resulting issues. After my first blog comparing Alice In Wonderland and how having cancer was like falling down the rabbit hole, now I want to reflect on each individual step, using my original diary kept during those twelve months. Though deeply personal (and quite weird to read at times) I hope my honesty in relating these experiences, helps others to know, that whatever they are feeling at their similar stages, they are not alone.
So, lets talk about my lump. Having established that something the size of a pea was indeed a problem, the shock set in but the confusion was heightened so much more by the desperate need for information. No one could give us details until the initial surgery to remove the lump, so determining the degree of spreading, type of treatment necessary and overall prognosis. It was like waiting for major exam results all over again (and my nails didn’t survive that one either!)
‘To excuse the pun, this is all a hard pill to swallow. I keep expecting the floodgates to open, having been someone who usually cries at the drop of a hat, this is something I would have expected to render me hysterical but I’m more like the Sahara. I suppose I’ll accept it all when I go into hospital and the formality of it all will make it more real’
– Dairy, 24th December 2005
In between all the waiting, my mind was in chaos: one thing was certain, I wouldn’t need a mastectomy. That’s a good thing right, I hear you ask but though I practically begged for the removal of what I now considered my ‘buggered boob’ according to my consultant, they won’t carry out this surgery if it’s not absolutely necessary, and to them it wasn’t necessary. It has since been an ongoing issue for me, that a mastectomy may have been a better option and during this particular time, as crazy as it sounds, I struggled with the notion of whether not having one made my breast cancer case any less serious. I am all to aware how each patients case is individual and this was something I was constantly reminded of, so, with all guns blazing, I accepted this particular form of eradicating said lump and prepared for battle.
Once the last dregs of Christmas turkey had been recycled in countless different pies and the first grey clouds of January had set in, I was scheduled for my lumpectomy. This date had been hanging over me all festive period but it was the first round in my fight against BC. The day in question kicked off with a jolly little procedure called Sentinel Node Mapping. ‘In this alternative procedure, only the sentinel node (the first lymph node to which breast cancer is likely to spread) is removed rather than all the lymph nodes’. (National Cancer Institute) This involved being injected with a non-toxic radioactive blue dye, which would highlight the sentinel node, so my consultant knew the exact glands to remove. I had a series of injections into the breast after an ultra sound, then went home to rest for a few hours before returning to hospital for x rays where I must have resembled some kind of neon blue light saber that Obi-Wan Kenobi may have left lying around! They took images to prepare for the surgery, then it was all systems go.
‘I’ve got a lovely little blue smarty as a nipple now and my pee is neon blue slush puppy. It’s pretty dam sore and I’m feeling really restricted, but it’s out now.’
– Diary 4th January 2006
I remember the turmoil of feelings after the op vividly. I was confused what it all meant and I was desperate for a plan. I couldn’t bear the waiting, the not knowing. Three days later (I was beginning to wonder if I should set up a camp bed in the waiting room) and we were told they wanted to remove all my lymph glands so I was admitted back in for a second operation less than twelve hours after receiving the news.
‘When (my consultant) said things we’re not brilliant and two of the four glands taken out where cancerous, I barely flinched. Chemo is now pretty much 100% so I can finally start to look at the next six months more realistically. ‘
– Diary 12th January 2006
After the second op I was in hospital for three days and though distracted with visitors, it was a time of vulnerability and fear. It had spread more than they had anticipated, and the snowball of wondering how much of my body was under siege began to roll out of control at the rate of knots. The light we clung to was that it was estrogen receptive, something to be relieved about as it was an easier type of breast cancer to treat (apparently!) I would stay on tamoxifen and wouldn’t need the drug Herceptin, which at that time was not funded through the NHS and had been a big black cloud of the more financial type hanging over us. After more waiting, it transpired no more lymph glands were affected and we were finally taking baby steps.
Now, ever since those two operations, my boobs have been ‘little and lopsided’! Those two surgeries, though never actually removing a whole part of my female anatomy or recreating the assets of Pamela Anderson, still induced a definitive change in body image and to an extent, my femininity. At twenty six, with my life ahead of me, there was a definite attraction to having fake over faulty!
There was a lot of physio to get movement back, information overload about Lymphedema (or just a brilliant excuse not to have to carry the shopping!) and stitches galore, but my left breast was now scarred and would never be the same. I now had an obvious dent in an already tiny boob! I no longer had a matching pair. Naked, I felt like some kind of kids Barbie doll who had had one of her boobs attacked by the pet gerbil!
It is a long road familiarising myself with this permanent minor disfigurement, but yes, I fully appreciate, I still have my natural breasts, however redundant one may be. As blunt as it sounds though, I would prefer not to have them, but that is just me (I will explain my genetic situation in detail in a later blog) and after a second diagnosis six years later, you can guess why.
It’s not all about the image though, it’s about the risk and the practicality of surviving this cancer going forward and for me, though a lumpectomy has still had it’s trauma, the question of a mastectomy being an option for my future is unresolved. Despite the upheaval of the surgery and reconstruction, I still continue to wonder if it would reduce my risk of yet another diagnosis.
There will always be a multitude of questions regarding this topic for me, but we can ask the whys and ifs till we are blue in the face (or boob!) Lets face it, having breast cancer, or any type of cancer for that matter, is life changing whatever operations you endure or drugs you are given. For breast cancer, lumpectomy or mastectomy, your body is changed, your femininity and identity bruised. The battle for survival is paramount and living with the ‘after life’ and all of the side effects, breast or no breast, is tough. What I know for sure though, at the end of the day, is that no matter how much your outer shell is dented, it’s the spirit inside that can never be.
Over the course of all my cancer experiences I kept a diary. These are the blogs I have written from the thoughts and feelings I recorded there. xx