Breast cancer lesson number sixteen: If you know what you’re in for, the road ahead seems a lot less daunting

As one of life’s planners, I know how important it is to be prepared (by which I don’t just mean making sure you have enough big knickers to see you through your hospital stay). While no one knows how you are going to respond to the treatment, or how well your body will recover after surgery, I think it’s helpful to have an idea of what might happen in hospital and what gismos you might just find strapped to you when you wake up!

So, here’s a quick peek inside my hospital diary. One small caveat before you are immersed in a world of cannulas and heart monitors. Every cancer, surgeon, care team and ward is different. This is my personal experience and you may find you get a few extra goodies (or a few less) depending on what you have, what you need and where you are. This diary is also based on having a full mastectomy, a DIEP (tummy) flap and an axillary clearance.

Day zero (probably so-called because you miss most of it due to the anaesthetic)
Highlight of day: making the recovery team laugh (even though they were probably just humouring me)

1)    Breast reconstruction surgery is big surgery. As such, you get your own theatre list (of one) and a team of about 10 people dedicated to you for the whole day. This means you will be due at the hospital around 7.30am to get prepped. It made me laugh when we arrived at the surgical admissions unit at about 6.50am only to find a queue of about 15 people already ahead of us. It’s certainly not a case of first come first served in the surgery game!

2)    Once you’re marked off the list, you’re given a little room to wait in. I was also given a urine pot (lucky me) for a quick sample. Quick change into a gown, some disposable panties, some white anti embolism stockings, dressing gown and slippers, I was ready to be visited by two nurses, one phlebotomist, a surgeon, a doctor, a researcher and an anaesthetist. One blood pressure check and a quick art lesson on my boobs and stomach later and me and my post-surgery bra were escorted to the anaesthetic room (via a hot blanket machine). It is worth noting that I didn’t see the cancer surgeon (or removal man). Hopefully I will meet him one day to thank him for saving my life.

3)    The anaesthetic room consisted of me, my lovely anaesthetist (who came to visit me in the ward afterwards and promised me some good drugs), a surgical nurse, a bed and cupboard full of drugs. The surgeon popped in to wish me luck (at which point I wished him more luck!) before I was fitted with heart monitors, an arm-holding contraption and the first cannula. The room was really cold, but after two hot blankets and some sleep-inducing drugs, I was off in my happy place and gone!

4)    I believe there was then lots of cutting, cancer removing, fat moving and sewing up. Apparently, they put you in the so-called ‘Jesus’ position for the op, so they have full access to the arms. Thank god for anaesthetic!

5)    Recovery was a row of beds and lots of monitoring. I had three cannulas, one arterial line measuring my blood pressure, a blood pressure cuff on my ankle, four drains, heart monitors, an oxygen mask, a catheter, a moving bed and, the weirdest bit, an inflated hot blanket to keep my temperature up. Interesting to note that all the needle/cannula action was on my left arm. My right arm is now off limits due to the axillary clearance, so was having a nice rest after being attacked earlier.

6)    After four hours, enough morphine to soothe a small nation (they kept turning off my PCA to give me extra shots), two small sips of water (we pretended the first one was a good red wine and the second one beer) and lots of laughter (particularly enjoyed watching one of the recovery nurses trying out a moving mattress to check it was working), I was being prepared for transfer.

7)    Five minutes with mum and dad and I was set up for a night of monitoring. Everything from my heart, blood pressure and temperature to oxygen levels, fluids and pain levels were checked at regular intervals. Sadly for the nurse looking after me, my PCA was playing up. Every time I pressed the button it started beeping. One other machine also kept beeping to tell him I wasn’t breathing. This was a little disconcerting at first, but we were laughing about it within an hour. Then came boobie testing. This consists of someone pressing the boob to check for blood flow and then holding an ultrasound monitor to the flap to wait for a pulse.

For a short day, it was a pretty long journey. Key aim: get through the night.

Day one
Highlight: Morphine, morphine and, oh yes, more morphine

1)    Day one was a dark day. While it was wonderful to lose the heart monitor, the hot blanket, the drips and the constant checks, it was a day defined by pain.

2)    I was visited by a surgeon and I was, at last, allowed some food. But, there was only one thing I wanted: drugs. I couldn’t even get out of bed.

3)    Rest of day was a bit of a blur. I felt like my tummy was ripping apart so got into a routine of: pain, tears, drugs, pain, tears, drugs (and tea), pain, tears, drugs! You get the picture!

4)    One piece of advice: don’t worry if your limbs swell up. My right arm trebled in size and a nurse suggested it could be permanent. I looked alarmed, but was later reassured it’s just post-surgery swelling. It eventually goes down – and it did!

Day two
Highlight: A shower

1)    What a difference a day makes! Following a ward round that it sound like I’d be going home tomorrow, I got up, got showered, had more morphine, got out of a gown and into a nightshirt, had mashed potato, had more morphine, saw family and friends, watched as 15 people crammed into the bay opposite and started praying, had more mash and more morphine (now morphine mash would be a novel idea).

2)    There was a lot of peeing. With the catheter out, I got up six times (with a nurse). By the sixth, I was pleading with my body to stop. The nurses laughed along, but did have morphine on tap!

3)    I went into hospital with a grannie leg (full of metal, hates the cold) and I now have a grannie stoop (bent double due to tummy tuck). Nurses said I had aged about 30 years.

4)    One thing that hasn’t featured yet? Sleep. Yep, there wasn’t a lot of that, but when you’re looking at the London Eye all lit up at night, it could be worse.

Day three
Highlight:
Less peeing, more mash

1)    Hospitals come alive on a Monday. I had seen my surgeon, my breast care nurse, a physio and a pharmacist before I’d even had a cup of tea! The surgeon was very kind, even though he insisted on shaking the hand on my bad arm twice (this was a very swollen arm with limited movement)

2)    When drains produce less than 30ml of liquid in a day, they’re out! As a result, two came out today. I obviously look friendly (or a bit gullible) as they requested a student take them out. She was brilliant though and will make a fantastic nurse.

3)    Glad to report, had lost a few years with less stooping.

Day four
Highlight: Taking the stairs

1)    When you’re helped to the toilet through the night, it is quite disconcerting to be told that on day four, you’re flying solo. Today was my equivalent of independence day, and I am delighted to say, I passed with flying colours. A wash, a walk, a flight of stairs and many toilet trips later and I started to doze off in my chair at 2pm. Yep, I am still 32 not 102!

2)    Slight blip came from the mirror moment I wasn’t expecting. Have suggested to the hospital that this is planned for others next time. The body has been savaged and, if you’re not ready to look, it can be quite scary. I am, however, delighted to think I might have had a slight augmentation factored in (although that could be the swelling).

3)    Drain number three came out. They don’t really hurt, but this one felt like it stretched the length of my abdomen, so was a like a worm inside my abdomen.

4)    I slept for four hours (did a little stooped dance round the bed).

Day five (to seven depending on speed at which you recover)
Highlight: A poo and home time!

1)    After many doses of Laxido (don’t be fooled by the orange smell, it tastes of gritty nothing), I have conquered the constipation. Was threatened with suppositories, so that may have done the trick!

2)    I passed the final drain test, so no need to carry it home. The doctor on the ward round said: “you’ve done really well”. Yay, big tick on my medical notes!

3)    Having cleaned out the chemist (bye bye morphine, but hello truck load of painkillers), said nice things on feedback forms, and signed my discharge papers, I am given permission to leave the building!

4)    One word of advice: use a wheelchair to get to the car park. I foolishly thought I would demonstrate my straighter posture to my mum and Duncan’s dad. The walk was fine. The lift was hell (felt like every jolt would rip my stomach apart).

5)    Back home and trying to get into a routine – but that’s another blog story!

Phew! That was a long six days. Am tired just thinking about it – and I’ll bet you’ll have sore eyes if you manage to get to the end of this post. 

Breast cancer lesson number thirteen: Time is a great healer… and morphine helps too

So, Friday was an interesting day. It started in the darkness of the early hours with a short train ride and a relaxing stroll along the Thames. It finished in the darkness of the night with a bucket load of morphine, a dedicated nurse, a giant monitoring chart and a view of the river (along with the London Eye). It started out with the cancer trying to take charge. It finished up with an army of amazing doctors and nurses (ten in theatre alone) all determined to make sure the cancer didn’t stand as chance.

I am happy to report, there is life after surgery. When it comes to life in hospital, however, the day asleep on the slab was the easy part. I won’t sugar coat it. The last few days have been hard (very hard). I woke up in recovery and was in pain (and shivering uncontrollably). We knew the tummy tuck would be tight. It actually felt like my stomach would rip open if I moved. I lay in bed clutching it tightly and crying through the morphine. No one could help me. Not even Mr morphine and his magic cocktails.

As with everything, however, the writhing agony has subsided and I am now left with a rather trendy abdo binder corset holding it all in (not forgetting my friend the big knickers). My right arm is limp and swollen from the lymph node clearance, my four drains are down to two and still draining into sports type bottles (all held up in the most beautiful handmade drain bags in the hospital) and my body looks at bit like it has been savaged! (Tip for those about to go through this, there are very few dressings used in plastics, so you see pretty much everything, including the glue). But, you know what, the boob is alive (complete with a bit of stomach skin), the tummy tuck was worth it, and I am still me (just a more well-thought through version).

Time can do wonders to heal and erase the memories, but if you think hospital is the chance for a decent rest, then think again – even the bed is timed to move around, so when you think you’re comfy, it sets you off guard again.

Three days is a long time in body recovery terms – although you know you’ve already been here too long when they are struggling to find a vein (the good arm is now out of bounds for life). I won’t talk you through the tests, the hourly checks, the pain, the pills the detail of the flap that is now my breast (being referred to as the flap in bed 11 is a bit weird). What I want to talk about is the positive side and, most importantly, progress.

Here are the highlights and the I-cannot-believe-this-is-really-happening lights:

1) NHS mashed potato is still pretty special: not sure I should be ordering it for lunch and dinner, but when something is that good, it is rude not to. Not sure I’ll be going in for seconds of the milk jelly though.
2) The beds are alive: nobody warns you of this and it was the cause for some amusement when I got a bit worried and explained I thought the bed was eating me. I think the guy looking after me in recovery thought I was hallucinating. At least I have been burning a few calories from the mashed potato while sleeping. It’s a special mattress for preventing pressure sores. Just wish I could have a proper ‘still’ mattress now.
3) Some drugs, when flushed through a cannula, feel like they are flooding your hand. Again in recovery too, I screamed out that I thought I was leaking. The nurses looked alarmed until it happened an hour later and they realised what I meant.
4) The recovery room was like the stuff of dreams: this feeling had little to do with the drugs or the general anaesthetic and a lot to do with the fairy tale castle and doodles on the walls. If you’re wondering why, it used to be a children’s ward. I just thought they’d consulted the wrong decorators and were attempting to transport us far from our bodies.
5) Blanket-warming machines are a revelation: they look like glass fridges and they produce the most wonderful warm blankets for theatre. If only they were available on the high street. I would buy shares.
6) I think my flap might be pregnant: flap testing involves running an ultrasound probe over the breast to check for a pulse. It’s often disconcertingly loud and the heartbeat sound it produces makes you feel like there is more than just fat up there.
7) It is possible to eat a roast dinner with one hand: a lymph node clearance makes the arm feel a bit useless (and tingly), so being faced with a lump of meat in gravy for lunch yesterday was a bit challenging. Undefeated, I worked away with one hand and managed to complete the challenge in about 40 minutes. Those who know how much of a fast eater I am will find this amusing.
8) I have a new belly button: apparently it would be too far down south if my old one hadn’t been relocated. This should go some way to explaining just what they took out.
9) Showering in a chair is so relaxing: while my new body will take some getting used to, this new way of cleaning is completely therapeutic and comforting.
10) Expect the unexpected in the consulting room: when my surgeon arrived to talk me through the operation, he did some drawing to explain – on me. To say I was a human doodle by the end of it, is an understatement. Think my parents got a bit more than they bargained for.

The strangest thing about this whole experience is the fact I am under plastics. I didn’t meet my cancer surgeon at all on the day, the surgeons I do meet are focused on new boobie, the ward is all plastics (skin grafts and skin flaps) and no one has mentioned the ‘C’ word. I think people might actually think I am a little bit vain with my boob and tummy tuck. My surgeon joked today that people elect to have tummy tucks. I grimaced and replied: ‘I guess they usually have something to remove in the first place.’ Should have had just a few more cakes, although it is nice to think my boob is part Hotel Chocolat treats and part apple and banana cake!

The one thing I miss the most? Being able to make a cup of tea. Three cups a day just doesn’t touch the sides.

The road to recovery may be a bit bumpy, but it’s the right road and I am happy to be on it at last.

I’ll be out once I am down to just one drain. Watch this space and thanks for the messages of support.

Breast cancer lesson number twelve: The day before surgery does arrive… eventually!

Image

Five weeks, eleven appointments, five scans, thirteen needles, two biopsies, one arm measurement, one flu jab, seven hormone pills, one ‘dry’ January, two emotional freedom therapy sessions, one NLP masterclass, 11 blog posts, one trip to see Darius (sing in a musical not in a concert) and a lot of chocolate later, and it’s here at last! I am not sure I believe it.

So, what does the day before surgery really feel like? It feels real. As anyone who has seen me over the last two months will know, I look well, I sound well, I eat well – a bit too well. In fact, I can’t remember the last time I’ve felt quite this well. That’s why trying to convince myself there’s a serious illness lurking inside me, is no easy task. Usually someone anaesthetises you to get rid of the pain – not knocks you out to bring it on!

In my mind, I am going into hospital well to come out unwell. In truth, I am going in with a life-threatening disease and coming out with my life. I should be celebrating. After all, I get a tummy tuck thrown in, a brand new body part and permission to wear big knickers and sleep for a whole day (inducing sleep will be much-needed after all those sleepless nights). I’ve had worse Fridays!  

My inbox is empty for the first time in years, my blackberry is no longer flashing constantly and my to-do list is on hold. If it weren’t for this little thing called surgery, life would be pretty special. 

Ask me what I am worried about and you won’t hear the words pain, needles, tubes, drains or PCA machines (quite looking forward to being reunited with that temporarily). The fact I can visualise everything from the drip to the catheter makes it all feel a little less menacing. What haunts my nights and occupies my days, however, is the fact that when I wake up tomorrow, I will never be the same again. I can’t prepare for how I am going to feel and, for someone who prides herself in being prepared (I would even love to make a spreadsheet for my weekly food shop if I had the time), that’s a bitter pill to swallow. I am sure bionic booby and I will get on – I am rather fond of my seven-inch scar and 44 holes from my hip surgery. But, ask me what I fear and I’ll tell you: it’s the moment I wake up tomorrow and look down.

Up until now, the cancer diagnosis (strange as it may sound) has been life-enhancing. I have taken what positives I can from the situation and it has put my life (and my constant need to always be on the go) into sharp focus. I have seen more friends and family. I have laughed more than I ever thought possible. I have taken time for myself. I have read a book on a Saturday (although really need to finish Bridget now as the book is so big to carry around). I have cut my hair short. I have experienced criminal behaviour. I have restarted old conversations. I have cried tears of joy. I have seen the beauty behind life’s clouds. I have opened the door to bad weather and danced in the rain. It may be the day before surgery but I am smiling at the fact I am here on a Thursday in February eating chocolates with my parents (can’t remember the last time I saw them in February). I can honestly say that there is very little (if any) genuine sadness behind my smiles. For that, I feel like the luckiest unlucky person in the world. I have been selected for a life and body overhaul – and I am determined to embrace it with open arms.

All I hope is that when I look down at those scars (which will fade with time, massage and a bit of love), I am reminded not of the surgery nor the cancer that was once eating away at me, but of the fact every day can be bright, brilliant and beautiful and make you happy to feel alive. It takes work. It takes strength to escape the daily routine of life when there is no life-threatening reason to do so. But, if ever there was a time to channel that inner workaholic for myself, it is now – and for the rest of my life. Up until now, I have been convinced this disease will change me for the better. Only tomorrow, will I start to find out.

On a more important note, I hope the NHS mash potato is as delicious as it was (under the influence of morphine) six years ago. If it is, I really have nothing to worry about.

I am ready to start out on the road to recovery. First stop, kick this cancer right out of my body. Let battle commence!