R is for Radiotherapy

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.

P is for Perspective

I see that tonight on BBC1 at 8.30, is the film Damilola, Our Loved Boy. Playwright Levi David Addai has written this TV drama to show the truth behind the sensational headlines that shocked the nation 16 years ago; the bright, 10 year old boy coming home from computer club who was stabbed and died alone in a dirty stairwell in South London. When asked in the interview what he hopes to achieve with the drama, Addai responded: “I hope it does the family justice, because when everyone else moves on, they are the ones who are left.”

Similarly, this coming Sunday is Remembrance Sunday. In the act of honouring those who gave their lives in either of the world wars or conflicts since then, we rightly say, “We will remember them.” Well, let us also remember and honour those who were closest to them, who lost them and who were or are still left, and who have to go on shouldering the loss…

Which brings me to the subject of the week – Perspective. They are my new perspective: friends and neighbours “who are left”. I hope they do not mind me mentioning them in this context. I hope that, because they are living, breathing, flesh and blood, they do not feel reduced in any way by playing this rôle in my life. But it is true; in addition to everything else that they are and do, they do provide me with my ultimate perspective.

I have done a lot of mulling on this notion of perspective, believe me. And where I have got to is this: much, if not all, of perspective derives from comparison. “But comparison is the thief of joy!” my 13 year old son enjoys warning me, “beware the chasm of comparison!” And rightly so – often unfavourable comparison does steal what joy one could have. But, what if the comparison renders one enormously grateful? Could there be occasions when comparison becomes if not the giver of joy, then at least the protector of it?

For example, I am genuinely grateful that there were 3 other beds in my post-op ward, because the inhabitants of those beds, even if they never moved or spoke to me, were an endless source of very positive (from where I was lying, obviously) perspective. One dear woman’s predicament nearly broke my heart. She had no one to be there for her when she “came round” because her father was in another hospital having suffered a stroke, her mother was no longer alive, and her “partner” of 10 years or more had buggered off when she got her diagnosis. She had to endure a full hysterectomy and there was no one there to cheer her on as she recovered. The rest of us all did our best from our prone and plugged-in positions to spread the love and share our little hoards of goodies with her – via the no-nonsense nurse, who did at least have the use of legs and limbs if not vast wells of sympathy or compassion – it was quite moving actually. In that instant, I was struck how my normal – having a husband who cared for me and actually wanted to be there during and after the operation – was such a privilege, and clearly not one that I should be taking for granted.

On another occasion, the woman in the opposite corner bed, was a little hard of hearing, so in a scene which even the writers of Carry on Doctor would have been hard pushed to write, the senior registrar took the brilliant precaution of drawing the paper curtains… Only then did she proceed to enquire, at the top of her voice, about the particulars of the patient’s sex life, and more specifically, whether she would miss her vagina, as coincidentally, they had had to take most of that out too, while they were in there removing all her other tackle. Well, let me not embarrass us all by drawing out the implications, but let’s just say, I found a whole new source of appreciation which had heretofore been taken for granted!

At this point I am just itching to share my favourite quote on the subject, which is nothing if not flippant, but nonetheless has come in very handy in our family, even in the most tragic and pressing circumstances… It is one of many great moments in the “rockumentary” film, Spinal Tap (a firm favourite) and occurs when the band is visiting Graceland. They are all standing around Elvis’ tomb, trying to harmonise, with devastating effect, (one of them quips,“in the same key, I think!”). Then they give up and get all philosophical and one of them says, pointing at the headstone, “That’s a bit of perspective.” They all nod in agreement and then pause for thought until another pipes up and says, “Well, yeah! Too much ****ing perspective!” It has now become a family catch phrase, amazingly (given my colourful language – the deterioration of which is itself worthy of a whole chapter) and fortunately (given the frequency with which it is quoted and the genteel nature of many of the hearers), without the fruity adjective. In fact, “Too Much Perspective” might be a better title for this blog.

Anyway, I digress. Back to my perspective on the post-op ward… More recently, recovering from my second mastectomy and while still floating around somewhere just below the ceiling (two tramadol as it turns out, is at least one too many, in addition to my intravenous opiate!), I heard a certain gentleman, masquerading as a member of the surgical team, telling the woman hiding behind the curtains in the bed next to mine, that they had just removed both her ovaries and her womb. When she gasped in surprise and horror, he just said, “Well, we had to. It is something you will come to terms with. There’s no point in getting worked up about it. OK. One of the team will see you tomorrow.” Or words and sentiments to that effect. And with that he turned tail and marched off. Even in my otherworldly state, I knew that this was not an adequate surgery de-brief. Had I not had the mental capacity of a goldfish, I would have thought to call after him, and see that he at least faced disciplinary proceedings. As it was, all I could do was to literally pull myself together/down from the ceiling and with great concentration of effort call for the nurse and ask her to look in on the woman in the next bed, who I thought might be a bit upset.

By way of contrast, a good friend happened to be in hospital at the same time as me, and being a private patient was therefore very much alone in her room… but far from this being a privilege or beneficial, in her case, I actually think she was deprived of these strange encouragements and therefore had all day to contemplate only her own misfortune!

And so you see, I think there is a case to be made for perspective, or favourable comparison, if one is left feeling sincerely grateful!

But these are historic examples of perspective and with time I have come to see the comedy amongst the tragedy, and they are not the full breadth of my vision. I must also include a more contemporary perspective; the friends and neighbours I see on a regular basis, “who are left” or are having a much longer, harder and more painful journey than me.

One such is Norman*, who runs a shop locally and has 2 daughters. His gentle, kind, and wise wife underwent cancer treatment for over 5 years. Hers started well before mine and continued long after mine had finished. But Polly* is no longer with us, or rather, more to the point, with Norman and their daughters. They are the ones who are left. When I see him as I drive through the town I always come to a sort of full stop. I feel gagged all over again. I feel as if I have no right to say anything on any subject (least of all this one) to anyone. And therein lies the tension. In some ways I feel compelled to write about the stuff that this journey has thrown up.  Especially, I hope that in some small way it will be a help or a comfort for others going through it; even just a flicker of recognition for a reader so that they do not feel so alone on such a tough journey, would make me happy. I want people to know that you can live life while facing cruel uncertainty, that you can laugh as well as cry; love and be loved…  and that life doesn’t necessarily stop when it comes into much sharper focus. I am at pains to show that there are even good, precious things to be found on this journey that are so much harder to find if you are on an easier path. But then, in the face of someone who has actually lost someone, I sort of screech to a halt and all my recollections, memories, laughs and tears seem to literally pale into insignificance. I feel guilty even, of trivialising and belittling a deadly (literally) serious subject, the final chapter of which I have not yet had to face. And I feel guilty for surviving. I have no business going into their shop, turning up like a bad penny, buying presents, being cheerful, frankly, just being, when Polly cannot even be here at all. In my head I become a symbol of unfairness; a physical representation of what Norman has lost but others have not. And then I see the elder daughter coming home from school, growing into a young woman now, and more of the consequences of her loss begin to dawn on me and gnaw away at me: I want her to be going home to a mum who asks after her day, who tells her how pretty she is looking and who helps her choose clothes or make-up on a Saturday morning. But I am absolutely powerless to help her in her journey. My story is of no use to her, in fact, my story might even make things worse for her. I want to reach out and fill some of that maternal gap, but I keep my distance, knowing the offence I might cause or be. I can only hope and pray that one or two really good mother figures come into her life and fill some of those holes…

I have another equally regular and local source of perspective – as well as inspiration: our conscientious, cheerful and humble Archie*. Archie’s wife, Milly*, has and is being treated for benign but growing brain tumours, (they suspect that they are the direct result of the radiotherapy treatment she received when she was a child). The latest offender is a growing tumour that is wrapped around her optic nerve. As I write, they are waiting to hear the surgical team’s proposal; her recently scheduled operation was cancelled for the second time, as the surgeon was not happy with the risk to benefit ratio. And yet, Archie and Milly have found a way to live in the face of this. What I have had to do only on the odd occasion, they do on an hourly, certainly daily basis. In Archie’s words, they live and savour each day, as if it is their last. They celebrate all the good things in life and they know who loves them. He keeps saying, “What else can you do?”, which is typical of his humility, grace and amazing attitude. I really do not think that is has occurred to him that he could respond very differently getting bitter and resentful, or wasting the precious good times by feeling sorry for himself and by being an absolute bugger to live or work with…

Well, I am no philosopher, and I know that comparison can be very unhelpful (so for example, I do tend to steer clear of Facebook: all those glamorous holidays and brilliant careers have a detrimental effect on my sense of self-worth and well-being – pathetic hey? But sadly true!) However, I have noticed that hanging out with people who have a harder time than me, makes me more appreciative of who and what I do have. I feel enriched and empowered as I discover afresh the good things that I can enjoy or share. Equally, I have noticed that sometimes, socialising with those way “better off” than me (financially, that is) can be a bit less feel-good; I find I can come away feeling perhaps a little hard-done-by, sometimes even ashamed (haven’t worked that one out yet) but certainly somewhat disenfranchised. And so, there we will leave the matter:

“At the going down of the sun, we will remember them.”

And let us also remember those who are left; who have loved and lost. Not because our compassion does them any good, but because it benefits us: because we live happier, more content lives, celebrating and savouring what we have, rather than mourning and missing what we don’t have.

*names changed for obvious reasons

POST SCRIPT

I think it worth noting that this is not all pure speculation and I have actually experienced the boot being on the other foot. I found myself very firmly “on the other side of the fence” as it were, a few months into my treatment, where, for once, it was my pain that was the source of another’s perspective, helping someone else get through their “stuff”. As it turns out, it didn’t make me feel smaller or used in any way, it just made me laugh. In fact, a bit like “too much perspective” it became the source of another family catch phrase.

My unique and wonderful Australian sister-in-law, who singlehandedly filled the top half of the freezer with cooked food for us all, should be on the stage. If only someone would do us all a favour and write down most of what comes out of her mouth – Victoria Wood could have only dreamed of this kind of material. Some of my longest and deepest laughs – invariably ending in tears so hard and extreme was the mirth – have been with “V” as we call her. Legend has it (well, that is, her daughter Becky is a most gifted story teller) that she even retracted a texted party invitation by blaming the initial invite on a slip of the paw by the family dog! Let us just say that Veronica has the great gift of making people laugh: and most of the time, it is intentional. One of her best gifts to me (freezer food aside) throughout this gruelling journey came in a phone call that went something like this, (please read in your best Aussie accent):

“Oh hi Rachael! How you doin’? You ok? How’s the hair? Oh, still bald! Oh dear! How many more chemos to go? What, five? Heck! Then radiotherapy for how long? Five weeks! Oh heck! Right! Yeah, well, you just need to know that whenever I think of you and what you are going through, it cheers me right up!”

Q is for Quentin Blake

“There is nowt so queer as folk!” And nowt so good at illustrating them as Quentin Blake.

The trouble is, I never really saw myself as an interesting or queer character. Au contraire. Coming as I did from a rather eccentric family, (I was middle child and eldest girl of seven, yes, SEVEN children) whose father was considerably shorter than her mother (and therefore the source of their own cartoons!) as a child I studiously avoided anything that could be interpreted as weird or queer. I was only too keen to either fit in with my present company, or make them laugh; preferably both. Well, in my cancer treatment, the whole bald, pallid and puffy thing definitely made the former a lot harder work. Fitting in involved more than usual amounts of time and energy and necessarily included weird things like eyebrow make-up, kindly bought me by my thoughtful sister-in-law. (I am not sure that I knew that such a thing existed – what would I have done instead, I wonder? Drawn them on, like a clown?!) Of course, the comic aspect came and went but what is most strange is that, even after five whole bald months later, I never ceased to be shocked by what I saw in the mirror; if one doesn’t look too often, one forgets what one looks like!

However, as I have already admitted, I was definitely in my stride in some ways, playing my rôle and being on a mission to “get through the treatment” (see previous chapter “F is for Fish”). Part of that mission was making sure that I looked as “normal” as possible, and I always assumed my best “I am fine” facial expression and body language, especially at the school gate. So much so, that on my first day back at the school gate after we had sent out the initial shocking round-robin email, I practically assaulted one dear friend with loud waves of gushing sympathy over her prolonged chesty cough! She just stared open-mouthed, poor thing! But what is the best way to greet someone the first time you meet after they have heard your news?…

Awkward!

I didn’t want long expressions of sympathy, and certainly didn’t want to make my friends feel awkward. For someone who has spent a lifetime trying to please people and win their approval, this was another cruel hurdle: my unavoidable health status made everyone around me distinctly uncomfortable and because it went everywhere I went, there was no getting away from it! It took all my strength to blow my cover. If it wasn’t for my sister who wisely counselled us to tell everyone as “we were going to need all the support we could get,” my own knee-jerk response was to keep quiet and carry on! That would have been much more my way of handling it. This way, by telling them, I was actually giving my nearest and dearest and small local community something unpleasant to face and then I had to handle their responses… all my nightmares rolled in to one! Fortunately, I had my old, faithful friend Denial, to fall back on. He came in very handy. I see now how profound were his effects on me; at the time, I mentally labelled and carried the whole sorry business as if it were nothing more than a most irritating but unavoidable dentist appointment. I was able to refer to it quite calmly and obtusely and always took great care to lessen the blow to others with phrases like, “Well, it is a bummer, but they say if you are going to get it, it is the one to get.” (Jamie noticed that I studiously avoided the word cancer and lightheartedly referred to “lumps” instead). The whole thing is even more bizarre when you realise that at the time, I actually felt fine and healthy. I was not in pain, I had not lost anything and I was charging around like a mad woman keeping a lot of balls up in the air. So, contrary to all that evidence, it was genuinely surreal to contemplate, let alone share, the looming horror.

Thankfully, by the time the chemicals had started to make their presence felt and visible, the mission to keep looking normal was helped because it was deepest winter. A big beanie pulled down hard to where your eyebrows may, or may not be, does not look out of place. Who is to know if you are bald or not, under a scarf or two and a huge, thick, floppy hat? As far as I was concerned, and this has never happened before or since, winter came in very good time and I was grateful for the opportunities for disguise. But for all my enjoyment of rôle play and dressing up, I was not queen of floppy hats. Oh no. That title went to another: allow me to introduce one of the great characters I was lucky enough to meet on this journey…

To enter the arsenic green (this is absolutely true, you couldn’t make it up, could you?) chemotherapy treatment room, part of the Oncology Department at The Horton Hospital, Banbury, was to literally step into the weird and wonderful world of Quentin Blake. Every form of head shape, colour and texture was represented, along with a whole theatrical wardrobe of attempts to disguise, hide or frankly draw attention to, said problem. Ranged around the room, in that awful backs-to-the-wall, doctors’ waiting-room manner, were the most colourful, varied and unlikely samples of humanity variously stuffed, propped and pinned into position. Here age, gender, colour, class, dress sense, size and hair status had no meaning what so ever. It was the most comprehensive, democratic and level playing field I have ever had the privilege of witnessing, before or since. But my favourite character de chemo, who never failed to cheer me up, was Lady de Bougainvillea, (obviously not her real name, but she did have a title, invited the entire oncology department to her “Hall” for Christmas drinks, and always conveyed a glorious blast of colour and vitality in her wake). Anyway, she faithfully sported a large, linen floppy “het,” whatever the weather (and this being the winter of 2012/13 it did involve plenty of snow), large of brim but small of crown and she always had a cheerful, if loud, word for her co-travellers. Her clothes too, were made of linen but had slightly less structure, so the impression was slightly nautical when she whooshed by. This sense was only increased when she had to snugly “dock” in one of those fit-for-purpose (not sure what that purpose is) plastic upright armchairs and “stow away” on board her latest consignment of almost lethal toxins. She did not suit being pinned down in harbour; she looked like she could do with a bright tail wind, a full complement of sail and plenty of sea to “go at”. However, she had that good, old, indomitable, Churchillian spirit; she had seen plenty of action but still made light of adversity. Rather wonderfully, she even had pet names for some of the more unpleasant treatments. This had a subtle, disarming effect, transforming these pathogens into something more akin to fondly tolerated, if doubly incontinent, old family dogs.

The first cocktail we imbibed was called FEC (no prizes for guessing the vernacular for that little baby), but though it took me down, it only did so properly for 2 or 3 days. In fact, after my first chemo session I was back at work a week later. Anyway, I was administered FEC three times; each dose followed by a three week interval. The second cocktail, Docetaxel, administered at the 4th, 5th and 6th chemotherapy sessions, was in another category all together. My first dose took me down for over a week. I could still feel it trickling down my veins like cold, heavy mercury, eight days later, making me have to kick my legs under the duvet to distract from the pain. It was the only time in the whole journey that it felt like I genuinely stared death in the face and I was so broken by then that I honestly welcomed it as an end to the suffering. Of course, I eventually recovered and wondered at the huge difference between my feelings on one day from the next and why I had had such morbid thoughts. However, it was bad enough that in the cold light of day, contemplating going through that same ghastly process two more times, that I asked Jamie to take pictures of the kids, getting them dressed up in the clothes of who they thought they were going to be when they were grown up – just to get me through it! (As it turned out, there was no need, my glorious oncologist lowered my dose by 20% and it was a complete breeze – and more importantly, we didn’t get to traumatise the children with the morbid request!) All this is a long way of saying that Docetaxel was my nemesis. But for the inimitable Lady de Bougainvillea, for someone of her metal and spirit, this particular medication was merely her “Dodgy Taxi,” possibly because it transported her to slightly less pleasant places! In short, my floppy-hatted hero strode ever so purposefully (just the way my old headmistress used to urge us school girls to walk) straight off the pages of Mr Magnolia: no doubt had she had two lovely sisters who played on the flute, some very fat owls who were learning to hoot and green parakeets who picked holes in her suit!

Somewhat less theatrically, Helen, my kind sister, (who rather wonderfully, does happen to play the flute) made me two cotton jersey beanies, in my top colours (tomato red and coral pink). However, these were not mere fashion accessories, nor indeed baldness disguises. In fact they were of paramount thermal value, because, when one is bald, one’s cotton pillowcase feels so cold it actually hurts! (Does this explain the mystery behind Wee Willie Winkie’s head gear and strange awol behaviour: was he, in fact, going through chemo?) Any way, I did enjoy the comic effect of waking up puffy and pink (thanks to the steroids), with jester-red beanie sitting jauntily off at an angle atop my shiny bald pâte… Jamie, my only audience at that time of day, did not find the look quite so amusing! Fortunately, Helen did have a jolly good cackle when she caught sight of me in such a state – one of the upsides of having a close sibling on hand at such times. For daywear, my lovely in-laws treated me (strange concept but true) to a very smart look-a-like wig which did not look as creepy as the cheaper ones do, and meant that I could brave work, the supermarket, high street or school gate and hope to blend in. (Which mostly worked, apart from just one occasion, when a sweet natured boy with “refreshing” honesty came up and enquired whether I was wearing a wig.) Heretofore, I had always enjoyed wearing a wig for comic or entertainment value, but sadly the daily necessity soon ground this aspect out of me. The posh wig was itchy and not well fitting despite its price tag, and definitely felt like some sort of imposed uniform; it had to be discarded as soon as I entered the sanctuary of our front door.

There was one time, however, that sticks out in all of our memories, when I shamelessly used the fact I was bald. It was during another chemo week, I forget which, but I was definitely rallying at last and therefore not completely comatose and horizontal. It had snowed again and while waiting for their bus, the children were having brilliant fun on the drive. It was the perfect place to scoop up clean, loose snow to make compact snowballs to launch at the odd car as it wheezed along the road at the end of the drive, at a snail’s pace. This was all jolly good fun, as it should be, with obliging drivers slowing down even more so that they could get one or two direct hits. Jolly good fun, that is, until Highway Maintenance Man crawls by in his van. One resounding, satisfying crack as a snowball hits his side panel and the three young Bells – plus friend – cheer from the drive. White Van Man literally stops his van in his tracks. Kids see him burst forth from his cab, slam the door, and start to storm over towards them, head down, kicking the deep snow out of his way. They stay just long enough to notice his shaved head, tight t-shirt and arm long tattoos. Never before or since, has Cressida, Tatiana or Zac managed to run the 50 yards to the back door of the house in under three seconds (I am assuming Emily also managed to keep up). I am upstairs in only my dressing gown and bright red beanie and I hear Zac shouting from the boot room about a scary man… simultaneously Scary Man reaches the front door and pounds on it like he is trying to smash it off its hinges. My heart leaps from the shock of the noisy assault on the door, the violent sound literally filling the house, and I take in what has happened. I blunder quickly down the stairs and head to the front door wondering where on earth this is heading… And then I remember my appearance and my unfortunate condition, and a small half-smile plays over my lips… I whip off the beanie, stuff it in my pocket and slowly, blinkingly, pink, puffy and baldly, ever so frailly, open the front door…

“Hello? Can I help you?” I whimper…

Scary Man visibly deflates as he takes in what emerges from behind the front door. He might even take a step back. Certainly, in all my years of performing, I don’t think I have ever made such a satisfying dramatic entry and am secretly thrilled with the effect I produce on the big muscle-building bully.

I gently de-fuse the bomb with lots of apologies and promises to keep my reckless children from repeating such life-threatening and unreasonable pastimes. He eventually turns tail and trudges off back to his van through the snow, at least partially mollified and perhaps I hope, even a little chastened.

(Not chastened at all, as it turned out; he vengefully and pathetically dumped all 4 children’s school bags in the ditch. My only regret is that I did not give him a jolly good flash of my finest, but as yet, still purply-blue and definitely on the car-wreck spectrum, oncoplasty chest work…  With a bit of luck, it might have scarred him for life!)

But all this talk of snowballs, beanies and generally fun frolics reminds me of one more wig-related thing. And hopefully with this I’ll leave you with a better image than the one of me puffy-pink and simpering on the doorstep in just a brown dressing gown… In our house, we always have the Christmas tree in the hall. And very lovely it is to come home to; resplendent and glowing with warm golden fairy lights, beautiful decorations, and filling the air with festive pine fragrance. And so it was late one afternoon, coming home in the dark, itchy and tired after a day out, I opened the door to the glowing glorious welcome of a Victorian Christmas card – picture perfect – Christmas tree, and with happy relief stumbled across an unlikely but extremely handy use for the angel on top of the tree… (“It is of great importance,” so Gary the brilliant wig hairdresser at Selfridges had gravely told me, “that you hang your wig over something which holds its shape, rather than lie it down to crush or crease.”)