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
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
Me after my last chemo
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.
A little pic of my actual diary
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.