At the end of ‘R is for Recovery’ Part One‘, I’d reached the end of my hospital stay post-mastectomy/DIEP reconstruction and after 5 nights between the crunchy crisp NHS bedsheets it was time to head home. Still not able to walk more than a corridor length or two, my brother poured me into a wheelchair and pushed me back out into fresh air and freedom. And I was lucky enough to be going home freer than most. Major surgery can often leave patients connected to those lovely accessories known as ‘drains’, which collect any excess fluid from wound sites (grim, I know). As a mastectomy and DIEP reconstruction involves two, or possibly three, surgery sites, some women need multiple drains. Add in the tubing needed for a catheter, pain medication and oxygen and a post-mx patient on the move can look like a monster from the early days of ‘Doctor Who’, all plastic piping and duct tape. Drains are essential but can be a total pain in both the metaphorical neck and the literal side if you catch them on anything. Getting out of bed and going to the loo takes time and mental focus when you have to remember that you’re attached to multiple pieces of medical machinery. The last thing you want to do is lasso a door handle with the drain tube and yank it out of you unexpectedly. I sat on mine accidentally once when getting in to bed. I think my yowl could be heard across the city.
In yet another example of the wonderful world of the postcode lottery, some hospitals provide ‘drain bags’ for women to use around the wards and at home, while others leave you to your own devices or suggest a plastic bag will do. Drain bags are a good option if you’re going home with a drain as they can keep them out of harm’s way, especially if you have curious young children and/or pets. Drain bags can be bought from places such as Drain Dollies and Cancer Research UK or if you’re feeling crafty you can even make your own.
I managed to escape the hospital confines with all my tubing removed but even drain-free the cab journey home was a painful one. We’d asked the cabbie to drive carefully but even at relatively slow speeds every bump in the road sent shudders of pain through my tired, sore body. I’d done enough reading pre-op to know that wearing a seatbelt after this surgery can be really uncomfortable as the belt rests across both your sore boob and the stomach wound. So I’d come prepared and used a wonderful heart shaped cushion from Jen’s Friends to protect my tummy. While the cancer world is full of many horrors, it also uncovers the illimitable kindness of strangers – people who have realised there is a small need that a breast cancer patient has (i.e.,a cushion to protect sore ex-boobs) and have gone out of their way to supply it, without recompense but with absolute love. It warms the cockles.
Back at home, walking up the few garden steps to my front door proved more of a Herculean effort than I had anticipated but it also gave me a mantra that got me through the following weeks and months of recovery. Focus on a single step, not the whole staircase. The recovery from a DIEP surgery is very much a marathon, not a sprint. It is not a surgery that you recover from in a few days or even weeks. For most women the initial recovery takes around 3 months, during which time there are severe restrictions on what you’re allowed to do. No lifting heavy items, including saucepans or even a full kettle; no doing housework, such as pushing a vacuum or lifting heavy, wet laundry; no sexual activity (chance’d be a fine thing). But the after-effects can last even longer, sometimes years. Surgeons have repeatedly told me that healing is still going on 18 months after the op and at 15 months post-op myself now, I’m still aware of some limitations in my movement, especially around my stomach wound. But 18 months is a scary old marathon, or huge old staircase, to contemplate, so it’s better to focus on that first step. Because once you’ve taken that one step, even if bloody hurts, you’re prepared for the next one and the one after that, and after that. You get the picture.
But even single steps seemed very difficult in those first few days at home. The small movements most of us who’ve been blessed with good health take for granted as we move through routine daily life, now became complicated procedures that required careful thought, some planning and a mental preparation to feel pain and discomfort. I quickly learnt that if I wanted to go to the loo I had to take my grabber stick (an invaluable aid) with me as pulling up your knickers from the floor actually uses many more stomach muscles than you would credit. But when every muscle is singing out in pain, you learn very quickly what even the simplest of movements cost. Both physically and emotionally. I found myself having to summon up mental courage every time I went from sitting to standing. And on my very first night at home, propped up in bed on a mountain of pillows (sleeping flat, or on your side is almost impossible at the start) I was in the humiliating position of having to text my brother, asleep on the sofabed in my front room, to ask if he could come and help me as I was really uncomfortable but didn’t have the stomach strength to sit up on my own and move either myself or pillows into a better position. The surgery’s impact on your physical strength and capability can also have repercussions for your emotional and mental health, as you feel vulnerable, helpless and dependant on others.
I knew even before the surgery that accepting that I needed help with basic tasks would be one of the biggest obstacles I would have to overcome (see my theory on why in H is for ‘Help’ and how my fear of losing independence complicated my decisions over treatment in D is for ‘Decision’). In the first few weeks I couldn’t even put my own socks on as bending down was too painful. And the day my brother put a plastic stool in the bath so I could have my first proper post-op shower was the day I sat on that stool in the tub and sobbed my heart out. It seemed as if all my fears about becoming a burden on others, losing my ability to fend for myself, handing over the reins of my daily life to family and friends were coming true. Certainly in the first week I was at home, my amazing brother and sister-in-law took on the full weight of responsibilities of my care at home. Shopping, cooking, cleaning, accompanying me to wound check appointments, watching Netflix with me and only getting mildly annoyed at my defence of ‘Homes Under the Hammer’ as a necessary, nay medicinal, part of my recovery. And in the days after bro and wife had returned home, several friends really stepped up to the mark by coming to stay, taking over the shopping and cooking (or take out purchasing) and even those who just popped over for a cuppa and a chat didn’t seem too phased when I roped them in to helping hanging out the washing or changing the bed. I owe so much to those who offered a helping hand during those first weeks of recovery. They know who they are. One day I will be able to repay you in full.
Despite being fiercely independent and mostly being happy in my own company, when I finally found myself fully alone again, when I no longer needed someone to be there to help with cooking (I’d moved on to microwaving my own dinners and buying up most of the stock of Cook!) I felt, for the first time, lonely and a bit afraid. The day that I knew my bro and sis-in-law were returning home I found myself bursting into tears repeatedly and for no reason I could fathom. Normally after having house guests for more than a few days (no offence anyone) I’m champing at the bit to have my space to myself again. But this time I was scared to be alone. After the days in hospital then with family around me, I’d had a sense of security that if something went wrong there would be someone by my side to help. But now I was alone again and still vulnerable – even weeks after the DIEP surgery there can be complications with wound healing, seromas (build up of fluid), infections etc. And I’ve never liked feeling vulnerable. Cancer takes so much and I was beginning to resent it taking my sense of self-security as well.
Home alone again, I tried to settle back into some sort of daily routine, giving myself a sense of structure and control that had been missing for a while. That daily routine wasn’t particularly adventurous at first – the daily exercises prescribed by the physios to get my mastectomy arm moving again (the op can cause muscles to seize up and restrict movement) as well as initial tentative walks up and down my garden, before these grew to small loops around the local roads, constantly feeling hunched over like a little old lady and coming home with back ache from stooping slightly. Impatient with the progress of my own recovery I was quickly frustrated by the feeling that I’d never stand up straight again. My newly sewn-together tummy might be nice and flat but it was so taut that it still felt like it could tear open if I stretched even a tiny bit too far. Who knows, maybe this is how really thin people feel all of the time?!
While I slowly increased the distances I was walking each day (0.13 of a mile 10 days post op, 0.61 miles 18 days post op, 1.84 miles at 26 days post op), and could feel myself getting stronger, there were also crashing waves of fatigue induced by even simple activities like a short supermarket shopping trip or a bus ride to the hospital for a check up. Because recovery is both a marathon and a rollercoaster – every now and again after taking a big step forward, you may also take a step back. I bumped over a few obstacles on my way through the following months – an infection in my tummy wound that needed antibiotics and a lot of mopping up of gunky leakage (yum), that constant cycle of activity and then exhaustion, an atrocious sleep pattern that involved (and still involves) falling asleep only to wake up 20 or 30 times a night for no real reason. Besides the physical boulders on the road to recovery, I also hit some unexpected psychological curves too – including having anxiety attacks in situations that had never phased me before, on busy tubes, at the theatre and, weirdest of all, on bridges! (The latter was discovered, unfortunately, while walking across the Golden Gate Bridge in San Francisco, a bucket list visit which turned into a 20 minute walk of terror!) There’s still a lot of work to do in unpicking these fears (and there’ll be another blog post on the mental health impact of cancer treatment) but it made me realise that while we’d all love recovery to be a simple straight line from feeling rubbish to feeling better, the truth is it zigs and zags over the place. Just like a rollercoaster our little cars can race up to the great heights of feeling almost normal again, only for us to suddenly drop down into deep valleys of fear and exhaustion (screaming and vomiting are optional extras).
One crimp in the smooth path of recovery that I didn’t see coming was dealing with my post-op scars. I’m not overly squeamish (15 years in a job watching horror films and pornography seems to line your stomach with steel) and even when my initial lumpectomy wounds became macerated (i.e., waterlogged and very squishy) and my tummy wound started leaking gunk I coped with cleaning and redressing them. So I didn’t think that when I was told to start massaging my now healed scars to prevent adhesion to the tissue underneath that I’d find it a problem. And at first I didn’t. Yes, ok, it’s a bit weird to have to rub your own boob repeatedly and 3 times a day but it quickly became part of my routine. Post-shower I’d switch on BBC Breakfast News and spend 5 minutes with Louise and Dan on the sofa as I methodically rubbed Moo Goo (lovely moisturising cream) into both the round scar on my reconstructed breast and the long hip to hip scar across my tummy. My poor little belly button scar was often forgotten but massaging your own belly button is definitely too damned weird. And that routine was fine, for months. I was listening to the plastic surgery team psychologist’s advice that touching and looking at scars helps the brain to assimilate the changes that have been made to the body. But after a while, I found that the massaging was becoming harder. Not physically as the wounds didn’t hurt and massaging is quite soothing, but emotionally. When I was massaging I realised I was using distractionary tactics, such as Louise and Dan on the TV, to avoid actually looking at my scars as I moisturised. Without any distraction, every time I looked at myself in the mirror I felt a massive wave of crying rushing up from the pit of stomach and threatening to overwhelm me. I forced it all back down, saying to myself that I was too busy to deal with crying now, that if I started weeping at this particular moment I might never stop and I needed to go out to work, shop, meet friends etc. As this began to happen more and more, my massage routine collapsed and now, 15 months post op, I’m ashamed to admit those scars don’t get massaged at all. I’ve been lucky in that my scars have paled, lost their angry pink hues, and rest fairly flat now, melting slowly back into my very pale skin. But they are still a very obvious daily reminder of cancer and even now I avoid looking at them in the mirror.
Which is weird because while one part of my brain skitters away from looking at those scars, from remembering what cancer has done to me, another part also wants to show them to the world, shouting from the rooftops about what I have endured. Looking at me now, fully clothed and out in the world over a year after my op, you’d be hard pressed to see the marks that cancer have left (unless you’re unfortunate enough to get me naked or have x-ray vision) and it feels like the world has moved on, bored of my cancer tale, especially now when a worldwide pandemic has turned everyone’s daily lives upside down. I understand that the lack of visibility means it is easy for others, with busy lives and more pressing demands, to forget especially when I look mostly like the ‘old me’. And I don’t want people to think of me as that ‘poor cancer patient’. But for me, cancer is a permanent companion – a voice in my ear reminding me daily that it has been a visitor once and there’s a chance it might pop back over to call again. Or as this piece describes, cancer can feel like having a gun pressed against the back of your head, never knowing if or when the trigger might be pulled. While I may want others to remember what happened, to acknowledge that I’m different, that I’m not ‘back to normal’, whipping off my top and showing my scars to everyone repeatedly isn’t really an option (not if I want to keep a job, friends, a clean police record).
However, if you want to see what cancer did to me, you have the opportunity below. The link below leads to a photo of my post-cancer body. It is entirely your choice whether you look at it or not. I am a walking contradiction – I struggle to look at myself in a mirror but I’m not embarrassed by or ashamed of how I look post-cancer. And I won’t be embarrassed if I know you’ve seen that post-cancer me. This is how thousands of women look after cancer has paid a call. Accepting that myself is just another bump on the rollercoaster road to my own recovery.