The NHS is truly weird and wonderful. I often came away from consultations genuinely moved. Yes, they were going to, in their words, “throw everything – including the kitchen sink” at me, but how uncompromising, professional and determined they were while throwing it! How amazing that these complete strangers were so committed to keeping me, just another woman on their list, alive and well, and in my surgeon’s case, looking good too! They held extra long multi-disciplinary meetings in my honour, to check and cross check that they were doing the best for me they could. The surgeon wanted me to be spared radiotherapy as she knew it would adversely affect my reconstruction. The radiologists wanted to fry me within an inch of my life. I never heard what the chemotherapy lot said, but they clearly recommended the “full English breakfast”. Round and round they went. In the end, the radiologists won. But I am getting ahead of myself. What I find so extraordinary is that one day you can come away from the NHS feeling like a princess – so concerned are they with your welfare and long term existence, but on other days you can come away feeling, as my friend Ant Wilson puts it in his book Love for Now, “more like a pork chop”.
The oncology team at Banbury were amazing. Part of the John Radcliffe Hospital in Oxford, they provide all of its expertise and some of its treatment more locally to those of us nearer Banbury. The parking is easier, waiting times shorter and sense of belonging and being known, exponentially superior. It was one of life’s oxymorons; you came away from a half day’s chemo feeling privileged and cared for! I can heartily recommend the welcome and treatment, even the tea and coffee is superior there – it is bought by the medical team and they share it with the patients. The little fridge has home made cakes, brownies and biscuits in it, brought in by thankful patients. It should come top of the TripAdvisor list of Top 10 things to do in Banbury. How is that possible when you are sitting in an arsenic green room, on plastic, fit-for-purpose armchairs, being pumped full of poisons so toxic and corrosive even the cloths used to catch the drips have to be carefully disposed of in special hazardous waste containers? In fact, did you know, that the chemicals are so dangerous that they cannot administer them orally or into a blood vessel; oh no, they have to administer them to where the pressure and flow of blood is greatest so as to immediately dilute and distribute them – just outside your heart. If they were to put them into your arm, for instance, the blood vessels there would be destroyed. And that is why they put in a PICC line – a peripherally inserted central catheter. That little procedure gave me my chance to savour the ambience at a large city teaching hospital…
My post-op recovery had taken place at the civilised “Laura Ashley” ward as we called it. It was partly paid for by a very grateful member of the Ashley family, with the express purpose of giving women a more womanly environment in which to recover or be consulted in. It was part of the spanking new Churchill Hospital, which even had a grand piano in the foyer. On reflection, this seems an unlikely place for a piano, grand or otherwise, but clearly the designer was thinking shopping mall meets hotel foyer and plonked a grand piano down to fill an awkward empty corner. Amazingly, it was actually played while I was an incumbent and my sister is a witness, because together we had shuffled down there for the sheer excitement of getting me off the ward and possibly even finding an almost proper coffee… I say “played,” but that might be stretching the term a bit far. The overall effect was almost comic – you couldn’t have picked something more old people’s home-y if you had tried. But it was at least causing something of a frisson among the inmates and for that we were as grateful as any promenader at the proms! The pianist built up gently through his repertoire, and by the time Helen and I had bought our coffees and found two free seats he had reached his undeniable climax: “Heaven! … I’m in heaven!” crooned the man.
“What?” I said loudly. “I do hope not! If this is heaven, I want my money back!”
But I digress. Playlists aside, the ambience at the Churchill is definitely upbeat, can-do and positive. Up on the Laura Ashley ward the black cherry yoghurt walls with pink accent melamine trims were definitely aiming at womanly recovery mode. (Rumour was it was being taken over by the urology department, which slightly makes the mind boggle, let’s not go there!) However, in The John Radcliffe (known to locals as The JR – nothing to do with Dallas or oil rigs), the oncology department, poor thing, had no time for such fripperies as black cherry walls, pink trims and certainly not pianos. Ambience was a luxury it could not afford. My memory may be playing tricks with me but ironically, I do recall playing musical chairs – without the music, of course – sitting in gloomy corridors, shuffling up the line, to where we assumed was our final destiny. We had no idea what or whom we were waiting for: a bell, a summons, a nurse? A lunch trolley would have been nice, a specialist who knew our name would have been ideal. But no, we – I say we, Jamie was there and lots of other people, but the gloom was so all pervasive I don’t recall actually being able to speak – we sat there merely hoping that this was the right queue for the right treatment. In fact, it reminded me of Dickens’ descriptions of being lost interminably in Chancery. There was an illusion of progress as I seem to remember that we actually moved chairs in one direction up a corridor. But then, as it turned a corner and seemed to go back down another one, we began to wonder if we had erred in our ways like lost sheep… Perhaps we had slipped through a transatlantic portal, and had ended up waiting with other canon fodder in the queue to get through customs at JFK airport – which is the closest match in terms of welcome or ambience. Anyway, there we were, for all we knew waiting for Godot, when all was revealed and we were finally summoned to enter The Final Portal, the end of our journey and the great chamber itself… Along one wall was a bank of windows, but it must have been raining or foggy, because still the gloom persisted. All around the room, (for which you must imagine old school sports hall), through the half light I saw slumped, half-conscious, half naked bodies, plugged into contraptions at the crook of the arm and painfully avoiding eye contact with anyone else. I can’t remember if they were on beds or on plastic armchairs, that level of detail was lost on me. It felt like we had stumbled into an East German prison circa 1970, and there was not even a fire exit sign to illumine the gloom.
Fortunately, things picked up from there because a brilliant nurse appeared in a flash of light and waved her wand and the colour flooded back to my vision. Her task, was to get two and a half feet of fine plastic tube (about the diameter of an old-fashioned shoe lace) into and then up my arm, over my shoulder and back down my main artery to just outside my heart. If it took a wrong turn at my neck it would go up and poke my brain, something thankfully she was keen to avoid at this stage. The only way she could tell if she had taken a left turn and not a right turn was by sending me off on yet another surreal paper chase up gloomy corridors, round dark bends and through yet more portals to be X-rayed and hence get an actual image of the bally tube and where it had ended up.
But I get ahead of myself. Do you know how difficult it is to get a shoe lace into my skinny arm? One of the ironies of this whole journey was how much worse it is for you if you are slim. Had I been large, so would have my blood vessels been and the PICC line would have sailed up no problem. Instead, I was literally bruised from my shoulder down to my wrist and black and sore for a week. In the same way, my surgeon informed me that my surgery would have been a lot more straightforward had I had a decent pair of baps and a proper flabby tummy to pinch at least a handful of transferable flesh. Well, had my nurse not been an expert and indeed, trainer of other nurses in this procedure, I do not know what would have happened. It took her 3 concerted efforts to get it in and up. I think in extremis, they put a line into the chest. Anyway, she was finally successful and the Xray showed a line down by my heart and not tickling my brain. She told me on no account to let any one touch the port unless they had fully scrubbed and gloved. Common sense, really, but more than once a member of the medical profession tried to give it a go! My other top tip, should you dear reader ever have a plastic line dangling from just above the inside of your elbow, is to cut the toes off a cheerful new pair of socks, pull it up over the elbow of your punctured limb, and tuck the flapping plastic line in to your new arm warmer. Somehow, a bright stripy band is preferable to tape and a coiled plastic tube sticking out. It also feels like one more layer of defence. Hey ho! But for all the drama and stygian gloom, that particular sojourn at the JR was not the pork chop experience I referred to earlier; that was merely a kebab kind of skewering. The trouble is that on my journey, Radiotherapy came after Chemotherapy. And as I have already described, the chemotherapy team treat your time with them like a half day spa experience…
You are made to feel welcome with a drink of your choice, and so is your partner, or whoever came with you. Nothing is hurried. You are called by your name. Somehow, all members of the small team seem to know you without you having to run through your grim particulars. You choose a chair – do you want to look at blank wall, other patients going through the same thing or out of the window? Two nurses run through your prescription with you to make sure that they have got the right one (yes, wrong chemo has been administered in the past – with deadly consequences). You have been discreetly weighed so that you receive the correct amount of substance… and then, once you are sitting comfortably, with pillows for back and arm all plumped around you, only then do they hook you up to your cocktail of choice. This is no wham bam thank you ma’am encounter; it can take anything up to 3 hours to coax that lurid stuff slowly and lovingly in to your system. In short, apart from the fact that they are gently squeezing poison up your arm and that you are not wearing a white towelling dressing gown, you really could be at a spa.
Not so with Radiotherapy. The waiting room was small but very full. The ante chamber was large and spaceship like. The experience was brief, to the point, and distinctly functional. I was shown, rather bizarrely a discreet curtained corner to undress, but then had to walk at least 10 paces across the large theatre, topless, to the waiting grill / trolley. From nowhere, a small army of technicians appeared, like the back row of the local rugby team, to strap me down into position. Men and women, young and old, I couldn’t think why there were so many of them. Were they expecting me to make trouble? Had I walked up the wrong corridor and found myself in an illegal and experimental department, normally the preserve of lab rats and society’s undesirables?! But this was clearly not the space to crack any sort of joke. In fact, it was better not to make any attempt at communication at all. They were highly efficient and it was all very serious. It seemed to take 4 or 5 of them to get me horizontal and lying exactly where and how they wanted me to. They were utterly focussed on where my right boob had been, in the sort of way you would be if you were wanting to open a window but for the life of you could not see a handle where there should have been one. Slight adjustments, minute pulls and pushes, all millimetre perfect thank goodness, but utterly unaware that there was a person attached to the fry zone. In any case, eye contact was not something they included in the service, nor was small talk. They all left the room without a word, apart from one warmer-hearted soul, who told me not to move, nay, preferably don’t even breathe. A short click and they all returned to move me into a second position, click, repeat, then a third click. I was then unstrapped and silently escorted over to my changing corner. It was all over very quickly and then I drove for an hour back home – half an hour quicker than the journey in… only to come back for the same time, same place the next day, and the next and the next, for 5 weeks. Did you know, that this is such a precise art that they literally beg you not to change your eating habits. In the one or two conversations that eventually broke the silence, this was repeatedly urged upon me. Also, and this came as a bonus ball, you might go in for cancer treatment and come out minus one boob but you also get given three tattoos! Like a piece of packaging that needs a digital tag, I had my left side, my right side and my middle marked with a spot. Possibly to help the team determine which side was up, or which side could be spoken to under extraneous circumstances.
Very occasionally, a member of the team did fire off into the air a random question. It was so rare, out of context, and frankly by now unexpected that I didn’t know it was aimed at me. “Planning anything fun for the weekend?” Or, “Did you struggle to find a parking space?” I even had “Your hair is growing back quickly!” I can only imagine that one of the younger members of the team had been put through a client-centred awareness course – or something of that nature. Perhaps word had got back to the department from one of the many performance questionnaires I had to fill in, that somehow it’s people skills were not up to EU directives and they needed to start treating the patient as a whole person… but they were still figuring out how to do it. I did eventually have one or two actually quite normal encounters with members of the radiology department and at the end they were at great pains to equip me to cope with the burns that ensued. I was lucky. My skin healed quickly and didn’t burn too much. I used a French burns cream given me by a friend plus ice cooling patches for a week or two after the treatment had finished – especially when I got hot at night, but other than that, I don’t remember having any really serious discomfort. I seem to remember I didn’t take hot showers for a while and seat belts were not great either, but that is all I recall.
Is it unfair of me to criticise the department when they were all so focussed on saving my life? Perhaps, but I do think they could learn a few lessons about humanity. They were a very finely tuned apparatus – brilliantly and efficiently working like a well-oiled machine to fry us to within an inch of well, more cancer (a side effect of radiotherapy!) But for all the precision and precaution to nuke any cancerous cells while keeping the rest not too unhealthy, in their mission and focus, they had lost sight of the person they were trying to protect. The person was totally obscured by the programme. There really was something profoundly de-humanizing in that repetative, daily practice, of turning up at a certain time, queueing, stripping off and being man-handled onto the bed, shuffled around and then unceremoniously dismissed, often without any attempt at appropriate human contact. I think they should all spend a week in any half decent hairdresser’s, where the skill of human contact, while also doing a tricky focussed task, is polished to perfection.
Mind you, to be fair to radiology, now I think about it, I often put programme before person – my kids will bear witness to that – probably on a daily basis! So even something as simple as cooking: while on task to feed them, I often ignore them. And when it comes to doing chores they never want to do them with me, and would always rather do them with Jamie – oops! I think when I am doing a chore I do it as if I am on a mission until it is done. Jamie is always much more cheerful and relaxed while he is busy, so not surprisingly, he is more fun to do the job with! Hmmmmm! Sounds like I could do with a week of work experience down at the local hairdresser’s…
I read somewhere that in the liberation of (I think it was) Dachau, Western allies were asked to send provisions for the prisoners. According to some survivors, probably the most rehabilitating and life-affirming item that arrived was, wait for it… lipstick! Surreal, surprising, bonkers and totally superfluous, and all the more powerful for it. It seems that if only your most basic animal needs are met, an animal is exactly what you end up feeling like. (Please don’t misunderstand me here: I am not comparing radiotherapy or distracted parenting to the concentration camps, but they do have something in common – in varying degrees and for different reasons – they dishonour and diminish the whole person). A bit of an extreme example, but I think there’s a lesson for us all there!
Finally, to end on a chirpy, Advent note: a friend runs the local CAP office and they are putting together Christmas hampers for their clients (anybody who is trapped in poverty, debt and their causes). “I think we will leave out the baked beans this time,” she said, with a grin while addressing a whole group of us, “and aim for something a bit luxurious and special!” Exactly!
In fact, what they are doing and how they are going about it, seems to me the very embodiment of the true Christmas spirit.