Happy belated 2015! Apologies for the radio silence. What with Christmas and all that comes in it’s wake, finding precious moments to write has been somewhat of a challenge. The very smart SamSpace website is also in the process of being built (So exciting and so grown up!) and Ill be starting another more practical blog alongside this one shortly, so stay tuned! Needless to say, life has been busy but in amongst those first few sluggish days back into real life at the start of January I had a routine PET scan and can joyfully announce ‘no evidence of further disease!’ So much for a dry January then! I can step forwards into this year with a little less weight on the old shoulders! Its great news and it has made this first anniversary, today, a lot easier to deal with.
So, here I am, exactly a year on and though another year older and a few more crows feet marching across my face, Im feeling pretty good! The boobs are still pointing upwards (which is definitely the preferable direction) and though I am still aware of the battle wounds and the feeling sheepishly crawling back, Im patting myself on the back (well as far as I can reach!)
I had been dreading this date. I know from experience this is usually the point I find myself walking mindlessly down the street, enjoying some me time, when suddenly Im stopped dead in my tracks and from no where a tidal wave of vulnerability hits me and I think, Hold on, What the hell just happened?!
A pic from my diary August – December 2006
I recently read a blog by the amazing Kris Carr, a lady who has been a huge inspiration in her quest to show how nutrition and a little self nurturing (whats that again?!) can help us through illness. Every year she celebrates her Cancerversary. She uses the day to reflect on the women she is now and all the positives her experience has given her. I’ve got her ‘Crazy Sexy Diet’ book, I read her blogs and though there are a few things I find a little ’flower power’, Im all for waving the banner for survivorship (don’t worry, I wont be waving my bra in the air!) The word stuck and the idea really made me think about why it should be a big deal, and why it does count.
‘Life stopped and then transformed. Valentines day is a very different celebration now. I call it my canversary, a day of deep self love, reflection, gratitude and re birth. It took me a decade to get to that sacred place but Im here now’ – Kris Carr blog
It doesn’t matter what it is that happened, if something affects you deeply, it will stay with you. It shapes you as a person and with that first year anniversary, its always going to throw up challenging emotions. Don’t look now but that roller coaster ride is about to hurl you around again. We can’t put a time frame on recovery and healing after any life shock. It’s a personal journey but as that date draws near, I often find myself reflecting back, constantly thinking ‘this time last year……’ It’s the classic, ‘if I knew then what I know now’ syndrome.
In my diary nine years ago I wrote; ‘Im finding it hard to stop myself from thinking back to this time last year, thinking,feeling, how I had no idea about what was about to happen. The gift of hindsight is quite scary sometimes.’ – My Diary 18th December 2006
Pic of my second diary and photos.
Maybe it’s the fact that the reality of it is still dawning and after all those 365 days, I’m still taking stock of all the emotions, feelings and events that happened during and since. Parts are still raw and sensitive and emotionally we are still processing and handling certain situations that may have developed in the fall out.
The change in a person, emotionally and mentally, let alone physically, can be instant and for some more gradual. I am definitely more aware of myself; my own strengths and weaknesses, but I have worked so hard to explore the deeper issues this year and after all the attention I have given to my lifestyle and diet in the last twelve months, I can honestly say I feel calmer, more balanced and healthy. It has not been easy and it is always ongoing. However, it has not been a time filled with on going hospital treatment. My diagnosis, surgery and recovery was over within six weeks. My healing has had a longer time frame. The first time around, I had only just finished all my chemo and radio treatment. I was at a very early stage of my recovery and getting to a year felt like a lifetime achievement. I was still vulnerable and moving forward tentatively, re building my life and discovering who I was. The second time, a close family friend had recently passed away and I was told I may be suffering with mild PTSD. It wasn’t a great time emotionally.
There is a reason cancer has a five year remission period. As Kris Carr says, its takes a long time to get to a place of acceptance and appreciation. There is so much for your body and mind to adjust to. The scars will indeed soften, the physical pain gradually eases, emotions become more settled but that doesn’t mean that there wont be a day, for the rest of my life, where for a minute or two, I don’t acknowledge those three major moments in my life. Moments like that never go away.
Admittedly, one of my big goals this year is to focus on mindfulness and living in the moment. I find it a real struggle to focus my mind this way and to just be. Recently, I was talking to my counsellor, she told me that people who suffer depression are often those who constantly look behind them and those with anxiety are those that are looking ahead. I am a walking, talking example of the latter but when it comes to a first anniversary, dare I say, speaking from ‘experience’, I can safely say that for the few weeks either side, I resemble some kind of owl, with a swivelling two hundred and seventy degree head! I’m not depressed but the mixed bag of emotions that invariably comes slightly undone at this time, spills out over whelming feelings of fear, anger, relief, gratitude and realisation that yes, it did happen to me! It sometimes feels like a dream. I’m hovering above myself, like some whacky computer generated movie spirit, watching someone I know go through it all and playing it over and over. How did I do it? If it happened now Im not sure what I would do. Sometimes I feel like a totally different person to the one a year ago and others I feel drained and totally steamrolled by every second of it.
‘Things will never be the same, I will never be the same. I’ve been very up and down over these past few days and So emotional…..I don’t feel very sure about anything as I move forward into the next stage of my life and into a new year’ – My Diary 24th December 2006
Me, September 2006, how far Ive come!
I was talking to a friend recently and she said, ‘it must be like having a scan, like when your pregnant. Once you have seen everything is ok, you can relax’, but then worry creeps back in the further you move from that day and you want to check again, and again and just get to the next scan. It struck me as a good way of explaining it; that uncertainty, that doubt, will always be there, hovering in the back of my mind. Its how we handle that and the coping mechanisms we develop that are important. Marking this kind of anniversary should be a huge wave of self appreciation; for managing that stress, that not knowing and that lack of control. I did it! Ive beaten this thing and Ive survived every inch of it! Im now renaming myself Mrs Incredible (though I think Ill leave the tight red PVC jump suit thanks!!)
Until now, I hadn’t appreciated any reason to celebrate an anniversary of diagnosis. I was consumed with reflection, the side effects and fear. Ive explored more ‘self nurturing’ this year though and although today is the day I was diagnosed, the 25th February was the day of my big operation. So, with that in mind, while I am certified ‘clear’ I will put aside my anxieties, doubts and fears, grab a decidedly dodgy umbrella adorned fluorescent cocktail, squeeze my feet into a heeled shoe (or two), decline the role of taxi driver and un-ashamedly celebrate my shiny (yes, still!) firm (yes, still!) and one year old boobs! Who needs a ‘Cancerversary’ when you can have a ‘New Boob Day’!
This will be firmly stamped in the diary as a day I can celebrate. It will always be ‘a year at a time’, if I have learnt anything, it’s not to be complacent, but there is life ahead of me and when ‘that’ time does come, I want to be able to say that I did everything I could, when I could. If it wasn’t for cancer, I would not have had the courage to share my writing, I wouldn’t have the knowledge and self awareness that I have around my health and wellbeing that I have now and I wouldn’t have met any of the incredible inspiring people who have enriched my life these past few years and encouraged me to share my experiences. Its not just about being thankful, it is about positively and actively marking all aspects of the journey we are on. Just as we celebrate starting life on our birth-days, maybe it would be just as significant to celebrate all those other dates that make that journey more meaningful and makes us who we are, human.
Picture by Sam Toft (I call it my AC (after cancer) picture!)
Then Wendy saw the shadow on the floor, looking so draggled, and she was frightfully sorry for Peter. “How awful!” she said, but she could not help smiling when she saw that he had been trying to stick it on with soap….
Fortunately she knew at once what to do. “It must be sewn on,” she said, just a little patronisingly.
“What’s sewn?” he asked.
“You’re dreadfully ignorant.”
“No, I’m not.”
But she was exulting in his ignorance. “I shall sew it on for you, my little man,…….”I daresay it will hurt a little,” she warned him.
“Oh, I shan’t cry,” said Peter, who was already of the opinion that he had never cried in his life. And he clenched his teeth and did not cry, and soon his shadow was behaving properly, though still a little creased.”
– J.M Barrie
The side effects of cancer can be like a shadow over a patient as they move past hospital treatment and into life after diagnosis. The words ‘maintenance drugs’, are the final stamp on your release from regular hospital visits. They can make us feel safe and secure in the knowledge they are helping our bodies fight against this disease and protecting us but they can also make us feel frustrated and out of control. The roller coaster ride of balancing those side effects is constantly ongoing. Peter Pan loosing his shadow is a great illustration of our vulnerability, conveying how underneath that ‘boy/girl who can fly’ can be a bit of a ‘draggled’ kid simply trying to get back to Neverland.
On my initial diagnosis I was put on the drug Tamoxifen. Tamoxifen is a small white pill, taken daily by patients with a hormonally receptive breast cancer. After a year of treatment this was my one and only maintenance drug. After the array of drugs I had had that year, one small white pill was nothing! I was told, under no uncertain terms, to stay on it for the course of my five year remission.
‘ Tamoxifen acts as a weak estrogen by competing for estrogen receptors. Tamoxifen has mild estrogenic properties but is considered an anti-estrogen since it inhibits the activity of regular estrogens. More accurately, tamoxifen is an estrogen-blocker. It fights breast cancer by competing with estrogen for space on estrogen receptors in the tumor tissue. Every tamoxifen molecule that hooks onto an estrogen receptor prevents an estrogen molecule from linking up at the same site. Without a steady supply of estrogen, cells in an estrogen-receptor-positive (ER+) tumor do not thrive and the tumor’s ability to spread is reduced.’
– Tamoxifen: A Major Medical Mistake? By Sherrill Sellman
Doctors do not divulge the side effects of maintenance drugs too deeply. They are prescribing them to help your body maintain a balance and work alongside the treatment they have over seen thus far. It was up to me to research and learn more but my experience of Tamoxifen initially was pretty uneventful. The only major problem was a delay to my starting a family, which had worried me the most on diagnosis, at the ripe old age of twenty seven, but as I admitted to myself early on, it might help having a partner first! So, I gallantly rode through five years of remission, found myself a husband and then counted the days!
Having thought it may take forever, after waiting the three months after coming off the drug so it was safe, we fell pregnant incredibly quickly. I consider it a literal miracle that within a month the test came back positive. I wonder now if the fact that Tamoxifen had actually been first approved for use as a birth-control pill but proved to induce rather than inhibit ovulation, had anything to do with this!
So, after five years of worrying my ovaries were getting a bashing from all the medical interference, this little pill could have been helping my fertility! Oh the irony! However, on my second diagnosis, there was no time spared before I was put back onto this drug and this time, the side effects were not so easy.
No one ever really talks about how much Tamoxifen can be such a nuisance. Everyone hails it as a wonder drug, but as Sherrill Sellman’s recent blog points out, there is always another side.
While the initial findings of tamoxifen’s role in breast cancer treatment seemed so promising, as with so many of the synthetic hormone drugs, further research presented grave concerns for its widespread use. In fact, the MIMS Annual lists 25 adverse reactions to tamoxifen…
– Sherrill Sellman
In a BBC report a while ago, they discussed how the drug should be available to women at high risk, as well as those who had had breast cancer. Sure, lets talk about prevention, but did anyone care to discuss that there could be huge side effects, primarily menopause symptoms but also pyschological symptoms such as depression as well as blood clots, eye damage and asthma in very sensitive patients? That’s a huge decision for any woman to make, breast cancer or not and making informed decisions has never been so important.
I have struggled with Tamoxifen. I am having wonderful counselling (another blog due about this for BDC soon!) but I go through periods hating how, as a medicine, it is making me feel mood and energy wise as well as battling with having the major choice of having another child taken out of my hands and processing the sense of grief I feel about this. Following a meeting with my oncologist two years ago, to discuss all this, I was also referred to a gynecologist who specialises in hormonal issues.
Sometimes I say the medication is even tougher than the illness.
– Sanya Richards-Ross
Things became clearer when she explained how so many other patients have similar side effects and how common it was to feel like this, emotionally as well as physically. The real knock on effects for a female, of having her natural oestrogen levels disrupted, are rarely publicly discussed so the sense of reassurance and sheer relief I felt after talking to her, were huge. She diagnosed Polysistic Ovaries (whats another diagnosis at this stage?!) and I felt strangely elated with the diagnosis of Insulin Resistance (a major cause of PCOS) as the extensive research into the relationship between this and breast cancer made so much sense to me. I’ve learnt just how important diet and stress levels are to working in conjunction with these drugs that are paramount in my recovery.
Yet, with another diagnosis comes another drug (whose counting?!) and I was prescribed Metformin to help my body process my insulin and work in conjunction with the Tamoxifen. My cravings stabilised and my mood swings improved too. I certainly felt like I had turned a corner and then just as I am getting my head around all of this, along comes Zoladex.
Since a third diagnosis earlier this year, I have started taking Zoladex in addition to Tamoxifen. I had met Zoladex while undergoing chemo. It was prescribed to protect my ovaries from the chemo drugs, but this time, it has been prescribed to down regulate my oestrogen production indefinitely. Clearly my body and oestrogen are hell-bent arch enemies and Zoladex is Batman’s Catwoman, brought in as reinforcements (well, a woman’s touch is always invaluable!)
Zoladex is an implant in a syringe, injected just under the skin every twenty-eight days to three months. It is given into the tummy by a nurse or doctor and it’s pretty clever as it deposits the implant which the body takes as and when it needs it.
Before the menopause, oestrogen is mainly produced by the ovaries. As oestrogen stimulates some breast cancers to grow, Zoladex works by stopping the production of oestrogen from the ovaries. It does this by interfering with hormone signals from the brain that control how the ovaries work. This is known as ovarian suppression.
– Breastcancer Care Org.
I recently had another dose and was surprised to hear that some people actually have a local anaesthetic before this jab! Catwoman eat your heart out! Zoladex is the ‘big gun’ but when I saw the box on the nurses desk the other day, I became an emotional puddle on the floor, reminded again just how these ‘life saving’ drugs can cast a shadow over huge areas of simply ‘living’.
Tamoxifen may have its down sides but compared to Zoladex it was a more straight forward drug. My periods returned three months after chemo finished and the hot flushes were minimal, but fast forward nine years and I have no periods, no oestrogen and every morning, regular as clock work, I wake to a boiling hot drenching of sweat as my body wakes up to face the day. Ice bucket challenges have never been so welcome!!
These are just the drugs I am on, there are so many others to treat all different diseases, all with their own pros and cons. At thirty-six I never expected to be in a drug induced menopause, debating Testosterone implants and wondering if, by the time this remission is over, whether it might actually be possible to start your periods at a mere 41 years old! It’s that familiar pause button, hovering over my head and sometimes making me a crazy lady in limbo!
The effects this all has on a relationship are huge and this often gets overlooked. I’m lucky, I have an amazing husband but it has been testing and a challenge for us as a couple at our age, and certain, not so fun conversations have had to be had, of which most couples wouldn’t have to consider having until at least a few more grey hairs had been plucked! I’ve got an incredible team around me but having had a cancer that, like a bad smell, has just been very stubborn about f’ing off, I’ve had to be doubly pro active in finding ways of living with these far-reaching side effects.
Time is a great healer, on all accounts. Remission isn’t five years for nothing. Just because the main treatment is over, doesn’t mean the daily treatment is. Every day, those pills get washed down and I visualize them keeping my cells clean and clear. They are maintaining my cancer free body but I am also a pro active patient. I try to be massively conscientious in researching the best nutritional advice, new forms of exercise that ground and calm me and courses that can help me manage my daily anxieties, such as mindfulness. It’s one huge mixing pot of trial and error and it never ends. As I look forward, when and if I come off the drugs, I’ll be that much older and will then have to deal with my bodies natural changes and those side effects. I feel like I have had a rather massive head start but just as Peter Pan realises how much he needs his shadow and attempts to stick it back on with soap, maybe we just need some patience too and our own ‘Wendy’ to give us that love, understanding and support, to sew it back on now and again, reminding us how much we need it, and in turn accepting our slightly ‘creased’ appearance. After all, sometimes its just nice to believe in boys/girls who can fly and that;
“All the world is made of faith, and trust, and pixie dust.”
― J.M. Barrie, Peter Pan
This is the final instalment of my husband Pete’s amazing blog about his perspective during my cancer diagnosis. Again, thank you for all the amazing feedback. It is so lovely to know how well received it has been and how it may be helping other partners through what is always a hard and challenging time. Please scroll down to catch up on the previous two blogs if you haven’t already.
We hope you enjoy this last chapter and stay tuned for more SamSpace blogs from me and my guests!
While clearly some hard and sad times, it really has not been a totally negative experience for me. As a couple we are exceptionally strong. I always loved Sam a lot (to this day Sam saying yes was the best sale I ever did… and probably the most over promised) but the way she handled breast cancer (for a third time) made me realise how much of an amazing and strong person she is (oh and the new bigger tits are great!) As a family we are stronger than ever. It sometimes takes an event to make you realise why you exist, why you work. This did that. For sure. Unexpectedly it also helped me understand what I don’t care about. What’s not important. The ‘stresses’ I had that I could simply let go of. I was surprised how many there were.
My Mum with Sam the evening she had her drains removed, a week post op. She was drinking water but clearly Mum was making up for it!!!
I certainly don’t fear more lumps. I certainly don’t look into the future with fear. How could I do so for something that made my marriage even stronger. How could I with a wife who is 3 – 0 up versus cancer.
I am not about to turn this into ‘Pedro’s guide to handling hard events’. I am not in any way qualified to. However, as its my second time I will critique myself. Round Two had seen me crumble. I had boozed too much to ‘cope’. I had been physically present but emotionally absent. I had needed to escape and used day long drinking sessions to do so. This time I didn’t. I was emotionally more supportive. I realised I couldn’t fix anything but I could support Sam by not trying to. I could help normality prevail. I could keep it together. I could be there for Lottie.
Mothering Sunday this year
Less than 0.00000000000001% of our wedding day was planned by me and the actual day was more about family, friends and the forthcoming honeymoon. Certainly the ‘in sickness and in health’ part is low down my list of things I remember, but it’s become to be so very true. I genuinely love every day of life. I am proud to be part of Team Sam and see everything we have been through as part of a long and important journey. Recently we celebrated five years of marriage and while that has included two breast cancer occurrences, it has been great. We have had way more ups than downs. Way more good days than bad days.
Oh and the tax man fined me. One of the things he picked up and fined me over was a five hundred pound cash donation the year before it was declared but not accompanied by a valid receipt. The donation was at an auction Sam had set up to raise money for Breast Cancer UK when she did the Moonwalk in 2012 (three weeks before diagnosis No.2) Oh the irony. Lucky for me I simply don’t care about things like this anymore.
Sam and I on our romantic weeks break in Istanbul in May. Celebrating beating it again!
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.
Lottie snuggling with Sam while she recovered in bed after her operation in February
‘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.
Me holding Lottie so she could put the star on the Christmas tree
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!
The Reynolds family trip to Centre Parcs just before Christmas
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!
Sam and our lab Moxy after a full day of tests and scans in February
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!……….
“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