Breast Cancer: Diary of a DIEP #6
DAY 4 OF RECOVERY: Leaving hospital, how it felt to be home & some helpful tips...
Tuesday 21 Nov : DAY 4 OF RECOVERY
After the tears and fears of day three I am in a completely different headspace on day four of my recovery. I went to sleep last night knowing that, barring any last minute complications or concerns, I would be leaving St Thomas’s hospital today. I have had time to mentally prepare for the departure and my mindset this morning is, ‘I can do this!’ It’s a positive and significant shift away from yesterday’s emotionally fragile and tearful state.
Following the usual morning checks, meds and my last hospital breakfast, (farewell porridge and scarlet red strawberry jam), I look through the list of physio exercises that I need to start doing. One of the physiotherapists came to see me yesterday with a booklet of details which she talked me through. It all looks quite manageable.
I have also now been relieved of my drain which is good news. It means I am no longer attached to the slightly grim tube and plastic cup collecting blood and fluids from the mastectomy site. Some breast cancer patients go home with their drains. That’s perfectly fine too. You are given instructions on how to look after them and it’s nothing to be worried about.
After another slow and tentative shuffle to the loo down the corridor, (which I’m pleased to report is getting incrementally easier), it’s time for me to get dressed. It’ll be the first time I’ve attempted to put on any clothing since I had my surgery on Friday. My pyjamas and essential kit of a front-opening bra and giant support knickers, (Bridget Jones eat your heart out), have been permanent fixtures on my body and will remain so for the first few weeks to protect the wound sites, (obviously rotated with clean versions in case you were starting to worry hygiene standards had taken a slump).
As I remove my pyjama top I decide to take a deep breath and have my first proper look at my newly constructed left breast. So far I’ve only caught fleeting glimpses of it through squinty eyes down the end of my nose as staff have carried out checks. Now I’m about to see it in all it’s battered, bruised and nipple-less glory head on.
Initial impressions are very good. The nipple is gone and in its place a circular disc of skin taken from my stomach which is filling the hole through which the tumour was removed. Some breast cancer patients are able to keep their nipple. It depends on the size and location of the tumour. I knew I would be saying farewell to mine.
As I study my reflection I am pleased, (after all the agonising), that I opted for immediate reconstruction surgery and feel reassured it was the right choice for me. For a few weeks following my diagnosis and getting increasingly desperate to be rid of the tumour I’d seriously considered going flat.
‘‘I just want it out as quickly as possible,” I whimpered during a meeting with my kind and ever-patient breast care nurse, Katherine, and the surgical oncologist at Kings College Hospital. ‘If I don’t have an immediate reconstruction it will be a shorter waiting list won’t it?’
They both reassured me it would only be two or three weeks difference in waiting time and that my tumour wasn’t going to suddenly grow and spread in that time which was one of my ongoing concerns no matter how much I tried to listen to the professionals and trust what they were saying.
It’s not long after I’m dressed that nurse Paulina comes into the room. She was the nurse who did the hourly checks on me throughout the first night when I was in a post anaesthetic, post-surgery fug.
Paulina makes sure I have all the medication I need to go home with. ‘You look so different’ she smiles taking in the sight of me with my eyelids actually fully open, contact lenses in for the first time and dressed in my own bright clothes. ‘And you’re so tall!’ Fair comment. She has only seen me horizontal until today. I say thank you to her for looking after me so beautifully on that intense first night and give her a big hug.
(Day 4 video. Feeling much better than yesterday although playing this back now I can see the stress and tension I’m carrying - the crumpling forehead says a lot).
As I wait for my partner Jonny to arrive to collect me I fill out all the feedback forms. I have nothing but high praise for the team looking after me at St Thomas’s. The only negative was the attempt to get me to leave the hospital yesterday when I was at my lowest ebb.
What a difference a day can make.
Jonny arrives. I’m ready to go. I take a last look around my room and then say goodbye to the staff at the nurses station. Sadly nurse Sebastien, my hero from yesterday, is not on a shift today otherwise I would definitely be dishing out another hug to her.
One of the team tells me they can get a wheelchair to take me down to the hospital exit but I am determined to walk, aware that it’s good to move and be mobile. It’s slow going as we navigate the myriad of corridors and the lift from floor 12 but I know I can do it.
It feels strange but wonderful to be outside. Jonny orders an Uber and as we wait by the exit into the carpark, the chilly November air on my skin is welcome. Even the familiar wail of sirens, traffic, planes and London life is music to my ears.
My mind loops back to the last time I was in this carpark. It was 2005 and we were bringing our beautiful first born baby girl home after her birth. I remember vividly how surreal, exciting and scary it felt to be released into the wild clutching her in a car seat and how we grappled with fittings, blankets and tiny items of clothing hoping we were doing things correctly.
This time it also feels surreal. I strode into this hospital five days ago feeling physically fine but with a large, invisible tumour in my left breast. Now I am shuffling out feeling as though I’ve done eight rounds with Tyson Fury, I have a hip-to-hip wound across my abdomen and a new boob filled with fat from my newly numb stomach.
The Uber arrives and on the 25 minute journey home I realise just how many speed bumps South East London has. Our driver seems keen to go over every one at maximum legal speed and I feel too tired to pipe up from the back seat that I’m recovering from major surgery and maybe he could ease off with the Lewis Hamilton antics and jerky acceleration.
HOME SWEET HOME
Sammy the cat, who has always been exceptionally vocal, greets me with a chorus of hearty miaows as I shuffle through our front door and ease myself onto the sofa in the living room.
My first cup of Yorkshire Tea tastes amazing and when Jonny asks what I’d like for lunch all I can think about is a fry up which is not usually on my menu of choice. He heads off to the local M&S to stock up on bacon, eggs and sausages which I’m soon tucking into on the sofa amid my nest of pillows and a duvet that he’s brought downstairs.
The rest of the day is spent watching TV, napping and I later mobilise upstairs to our bedroom for a sleep. To my surprise, navigating the stairs is actually ok. By far the hardest thing is getting on and off the sofa and in and out of our bed. Restricted to lying on my back and with the large 16 inch wound across my stomach, bending, twisting, sitting up and lifting legs is arduous.
Our teenage son gets home from secondary school at his usual 3.30pm and it’s gorgeous to see him. I’ve missed him along with his cheeky smile, dimples and mop of curly hair. It’s the first time we’ve seen each other since I went to hospital but we seamlessly pick up where we left off, chatting about his day, his weekend football match, what he had for lunch. Everything feels just as it should, life rolls on and after a gentle hug avoiding my stitches he’s soon disappearing off unfazed to his room to play Rocket League and eat a mountain of Rice Krispies.
As the evening draws in and after more dozing I’m scrolling through my backlog of well wishing WhatsApp messages including one from two local friends. They say they have a gift to drop off if I’m up to it. They won’t stay. They’ll just drop and go. Yes I am up to it I reply. It will be nice to see them.
They are surprised when I answer the front door myself. ‘We thought you’d be in bed’ they exclaim. ‘I’ve had quite a lot of rest today and walking slowly is fine’ I reply momentarily catching sight of my very pale and tired looking face in the mirror in the hallway.
The gift that they carry into the living room blows me away. It's a hamper full of amazing goodies - delicious food, books, candles, hand creams and other pampery-luxuries, a homemade card, all contributed by a group of my school-mum mates.
It’s one of many wonderful presents that come my way which not only lift my spirits but make me realise just how kind and thoughtful my friends are. I am very touched and very grateful. They tell me everyone is thinking of me and then they’re on their way as planned.
By 9pm I'm flagging and it’s time for my first full night in our bed. I’m a little worried about how I’m going to manage. I’ve been a pretty restless and light sleeper for many years. Once again pillows are arranged, one beneath my knees, a couple of extra ones behind my head. I have never been someone who likes sleeping on their back but I’m going to have to get used to it. I miss the remote control headrest of the hospital bed but I have a water bottle within arms reach, my radio, phone, my own cosy duvet and everything I need.
As I settle down with an audiobook playing to help me drift off I’m all set. The street light glows through the curtains as do the flashes of headlights from passing cars. I hear the occasional sound of people outside on the street, some probably off to the pub on our street corner. My son pops his head round the bedroom door to say goodnight. Sammy the cat is miaowing to be let in or out of somewhere. It’s all the usual stuff. I’m home. It feels good.
A few tips from me on leaving hospital that you may find helpful….
*Pack loose clothing to go home in. You definitely won’t want jeans, belts or anything around your waist where the wound is. A pair of my favourite tracksuit bottoms and a loose T-shirt served me well.
*Make sure you have your list of physio exercises before leaving and have ideally spoken to a physiotherapist.
*Also make sure you have all the medication you will need at home and any prescriptions.
*If you can’t arrange for someone to come to pick you up, ask your hospital about their provision of transport arrangements. St Thomas’s arrange transport to take you home if you need it.
*Be aware that after a DIEP you can’t drive for a few weeks, (some guidelines say 3 weeks, some 4-6 weeks).
*Back at home you need someone checking you are ok and ideally helping prepare meals and drinks for the first couple of days. Line up a helpful friend if you don’t have a partner or family member on hand.
*Remember you won’t be able to pick up anything heavy so depending on your setup at home that may include small children, pets and if you’ve had surgery on your right hand side objects like kettles and saucepans. My surgery was on the left so I was fine with making my own cups of tea and using my right arm.
*Rest. Rest. Rest. Don’t try and push yourself unnecessarily. You won’t get any prizes for rushing to do too much when your body needs to heal. Overdoing it could set your recovery back.
*Limit the amount of visitors especially for the first few days. Only have people who are either going to make you feel good or be helpful in some way.
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