(THIS POST HAS BEEN RETROSPECTIVELY EDITED AT DR BRISTOW'S REQUEST.)
The night before being admitted to hospital for the portocath and the chemo we stayed up relatively late with R watching Ricky Gervais on the TV while I curled up next to him reading Dina Rabinovitch’s ‘Take off your party dress – When life’s too busy for breast cancer’.
(In which I found out how chemotherapy treatment for cancer was discovered. Apparently, after autopsies on mustard gas victims from WW1, scientists discovered that the had stopped the bone marrow growth and the bodies had low white-blood cell counts. They then realised they could use the same stuff to stop cancer cells growing.)
I tossed and turned all night, the double fears over the portocatch procedure (does local anaesthetic mean you can’t feel anything or could I still feel them cutting into me?) and the chemo (must try not to watch any favourite programs – apparently the conditioned response can be so strong that months later people can hear the opening bars to Friends, or The Sopranos, or whatever does it for them, and the flood of chemo-remembered nausea return).
So this morning, it’s stressful and disorganised. I wake at 7am because for some reason the radio alarm is going off in the kitchen. Turning that off, I take the opportunity to squeeze some toast in before I go Nil by Mouth after 8am. Back into bed at 7.30 after toast (and my increasingly punctual morning appointment with the loo) and grab about 20 minutes before the phone beeps a text at me. It is the first of many lovely good luck messages from friends and family. I smile at the text and feel all-warm inside. Then I callously turn the phone to silent – I need another hour’s sleep at least.
I’m half aware of R getting up and then fall into a blissful slumber with no fearful dreams popping up. He then wakes me properly at 9.30, offering me muesli. He’s forgotten about Nil by Mouth, but I remember just in time and say no. However my bottom is deciding to ignore both of us and off I trot to the bathroom for my second poo of the day. This isn’t diarrhoea, or nerves. This is my new high fruit and fibre diet ruling my life from the central bunker of my arse.
Ah well, Chemo makes you constipated so it will be swings and roundabouts throughout this treatment I would imagine.
A little later my Breast Care Nurse, Clare, calls. Probes gently as to what time I was expecting to come in. Everybody has told me 12 noon to go to the ward. And the last letter from Alison Jones, my oncologist, suggested she “would catch up with me then” leaving timings rather ambiguous. I’ve assumed she meant she’d see me around the ward when I was in for the Port and Chemo I. But it seems she was expecting me in for a chat first thing. Oops. I know I am not responsible for this fuck-up, but I still feel like a naughty schoolgirl who’s missed a class.
Eventually I am nearly ready to leave the flat. Bags packed. Ipod charged. Books and magazines that I won’t get round to reading, pyjamas with easy-to-get-on-and-off tops and most importantly, big knickers. Thongs and hospital gowns they do not mix.
But as I am almost walking out the door I get an urge to clean. I start washing up and then try and explain in garbled instructions to R where the mop and the new floor cleaning stuff is. I’m racing around wondering if I can hoover the hallway in time. I think I’m stalling.
Eventually R forces me out the door to get moving. He’s following on the bike. I head for the station and buy a ticket. At Waterloo, it’s now 11.45 and I am cutting my 12 noon admission time fine. I decide to grab a cab because that would be quicker than 4 tube stops followed by a 15 min walk. Except that it’s not. I’ve been in the cab 15 mins and we have made around the back of Waterloo and are now stuck in very stationary traffic outside the main entrance of the front of the station.
I chat to the cabbie about traffic. ‘It’s May Day love”.
Shit! I had forgotten the May Day rallies that usually take place every year, creating traffic mayhem. A cab is certainly not going to be quicker.
“I don’t know” says the cabbie “They were all so bloody keen to get into this country and now they’re all so bloody keen to tell us what’s wrong with it. Doesn’t seem right to me.”
That’s it. If I’m going to be late for my admission today I’m not about to do it in the company of a xenophobic, immigrant-hating cabbie. I also suspect he’s wrong. They’re not the ones protesting. They’re too busy to go protesting. They’re busy doing all the jobs the protestors and the rest of us cannot bring ourselves to do.
So I hop out, back down into the tube, Jubilee line to Bond Street where some woman is eating a samosa right next to me, causing my stomach to grumble and my lips to salivate. I fantasy tearing it off her for a moment. Then the tube slows and it’s my stop.
Up at ground level I hail another cab, because it’s now 12.20 and I am late, late, late. Plus I am not sure whether I am on the North or South of Oxford St and which way to start walking. Why has this morning been such a shambles?
Five minutes later, the second cab drops me off at The Harley Street Clinic on… Weymouth Street. This does make sense – it’s just overflow buildings. They are all connected inside apparently.
R turns up at 12.40. He has had his own nightmare trying to find a bike bay spot free. Unless you’re parking before 8.30am or after 6pm this is pretty much an impossible feat and he has circled the hospital several times already before finding a bay with a slither of a space to slide into.
This hospital feels more traditional than the Princess Grace. This is all dark woods and blue leather Chesterfields. Lots of copies of Country Life neatly stacked reception but no trashy mags. That’s the difference between private and NHS right there.
The sign at the door sending people to check in with reception is written in three languages. English, Arabic and then a script which is either Greek or Russian. My bet would be Russian with all their new rich.
A porter comes and takes us to my private room. More clinical than the Princess Grace but most of the same mod cons; toiletries in the en suite; decent menu order forms waiting to be filled in; flatscreen on the wall. But the air con doesn’t work and there’s no online access.
This might sound picky but an overnight oncology stay clocks in at £1,157 in this place. And that doesn’t include the cost of the chemo itself or the portocath procedure. The neulasta injection alone, scheduled for tomorrow (a booster to bone marrow growth given 24 hrs after chemo) is apparently worth more than £1,000. I am constantly astounded by how much this treatment costs, and suddenly understand how NHS fundings disappear into black holes as far as providing the best treatment for their patients is concerned.
I’ve not been in the room longer than a minute (the porter hasn’t even had time to leave) when there is a knock at the door and a small, cheerful Chinese nurse with an impronouncable name comes in. She sounds like she is called Shayo, but I’m never quite sure if I have remembered it correctly so I develop a habit of sneaking a peek at her name badge before addressing her. Unfortunately the name spelling does not help. It is spelt something like Xiaoan. She’s lovely, and really helpful, but I’m embarrassed to try and use her name in case I get it wrong.
Mind you, she had just as much trouble with pronouncing ‘Anne-Marie’.
They were expecting me at 12 noon. With my lateness and having waited downstairs for 20 mins, it is now 12.43. My operation was originally timetabled for 2pm, but it has been brought forward to 1pm. Which gives us 17 minutes to go through the prep, paperwork, consent documentation, final questions with the surgeon, getting changed into hospital gowns, and making my way down to the basement area where theatre is. It suddenly all feels like a bit of a rush.
She asks me the normal questions and writes out not one, but two, hospital bracelets for me. As she fits them around my wrists I crack a poor joke ‘Is this in case one of arms falls off during my operation’. She, Shayo or Xiaoan, giggles away, almost messing up the last bracelet fastening because she’s laughing so hard. Bless her for finding me funny.
Then a whirlwind enters the room. It’s Dr Aubrey Bristow, my surgeon and anaesthetist for the Portocath. I ask him what the local will do in terms of delivering some pain / no pain / some feeling / no feeling and he clarified that the sedation should knock me out enough not to notice, care, or in some cases, remember what is going on. But that I will be able to feel, respond, and if necessary, express myself. The local should remove all pain, but not all feeling. Hmmm, confidence inspiring? Under such rushed conditions, no.
I then walk myself down to theatre - going in upright and vertical is a strange new experience – you get to see everything. I am in situ on a trolley bed as Dr Aubrey Bristow and his assistants fuss around me. He draws on me to mark out my bra line, making me laugh (not for real by cracking a joke, just asking me to laugh so he can see where my boobs start to wobble and draws another line to mark the boundary). Because of the time of the operation shifting at such short notice, everything is in such a rush and I'm still feeling flustered.
A ccanula is inserted. It hurts. Dr Bristow gives me stuff to make me sedated. It seems to work because next time I’m conscious of my eyes being open I realise I’m covered with some sort of green rustling waterproof fabric behind which there is a bright light. I can hear the team’s voices and they are busy doing stuff to me. Which I can feel, but not feel, if that makes any sense. I can feel the pressure of people’s hands on my skin. But no pain, no cutting, no stitching. I am vaguely aware of murmuring something but it is only when a large wave of cold liquid gets thrown over my chest and neck area that I suddenly manage to form a comprehensible sentence.
“You could have warned me that was coming!”
Suddenly the green face cover is being removed as I am being manhandled onto another trolley. I realise I am breathing through an oxygen mask. I have two new snow-white dressings on my left chest area.
They wheel me into recovery. There is a man on his trolley recovering opposite me. I am shy to do so, but feel like I want to catch his eye to acknowledge that we’ve both survived something. Although I doubt he’s suffering from the same thing I am.
I am cold and shiver. My teeth chatter. It turns out that the cold splash I felt was the iodine wash and someone was a little over enthusiastic. It has washed all around the chest area, around my neck and seeped back behind my shoulders. My hair is wet and the pillow is soaked. The Recovery Nurse gently swaps my wet pillow for a dry one and gives me another blanket. The chattering slows down and I lie in a haze.
Eventually I am being wheeled back to my room. R is there waiting. Another hospital, another day.
Only this one is only halfway done. We’ve accomplished the portocath operation, we now have the chemo left to do.
But first, lets order a sandwich and try and get some food inside me. I’m starving. I haven’t eaten since 7am and it’s now after 3pm.
Simultaneously I realise that ordering a sandwich may not be a good idea. It will give me something to throw up if the chemo makes me sick. But I cannot bear not eating anything, and I recall that throwing up on an empty stomach when all you’ve left is bile is arguably more unpleasant, so I order a smoked salmon sandwich and to hell with the consequences.