I’ve never been any good at waiting! Honestly, you should see me when the computer doesn’t fire into life immediately when I push that button. And you know that silly little symbol that appears when something is happening in the background of your PC? You know, it can be like an hourglass, or a whirly thing? Well, when that pops up my heart sinks and I bang my head on the desk and wail “Nooooooo”. How can it make me wait so long? I have STUFF to do! People to be calling…..cups of tea to be making!! Alright, nothing I need to do is THAT important, but you get me, right? Waiting for a machine to do what it jolly well ought to be doing is so frustrating.
We live in this era of ‘why-wait-for-anything’. Ads tell us we don’t need to wait for what we really want NOW. We can buy now and pay later – all on interest free credit too. We can borrow for what we’ve not yet earned so we can have the luxury of owning that ‘something’ in advance. Looked at in the cold light of day, it begins to seem rather ridiculous. The ‘get-it-before-it-goes’ philosophy can be infectious and drives behaviour – gives a sense of urgency which can actually push people into debt they could really do without, and, even worse, can’t afford.
I am learning now that I MUST wait. Waiting is becoming my status. I am calling this my Posture of Waiting. It is a Posture I have to learn to hold. Practice makes perfect – and oh boy – I have lots of opportunity to practice!!
There are other related things that I’m learning too. I’ve always been a very ‘in-control’ sort of person. I like to know what’s happening ahead. I like to be able to have a say in how things will be. I like to understand what’s happening and be able to influence how things will go; how I, and others, will operate. I’ve tended to be better if I have some level of responsibility; that is, if I’m allowed and empowered to lead. I am happy to take charge of projects. I love nothing more than to sit with a spreadsheet, mapping out tasks and contingencies; schedules and outcomes; expectations, plans and goals. Love it all. Sad, but true. I like working out what risks there might be; how can we manage them; how do we communicate with stakeholders. Love all of that. But, you know what? I can’t do that with Cancer. I’m learning that I cannot be in control of this part of my life.
It’s a rat of a thing, because, even though it’s yours, (as in, it’s in YOU), it’s YOU who can’t seem to get a grip of it. You get your head round what it is, or think you do; so it can be defined and you know what you’re dealing with. Then it turns out it’s just really an umbrella term for thousands of ‘types’ of tumours and minging cell abnormalities. That pop up and grow – seemingly where they jolly well like. You can research it all you like; you can find the statistics (frighten yourself to death over them). You can tap into websites and blogs and online communities – you can talk to other folk with cancer – you can quiz professionals. You can arm yourself with all this information. But what it boils down to in the end is this – you spend a great deal of time WAITING and NOT BEING IN CONTROL
As soon as my surgery was over, even while still poorly and recovering, I wanted to know what they’d found. What was next? I have no say in that though. It all depended on when the lab would be working over Christmas; what they found in a cell that might lead them to look in another; when my specialist was available for clinic. Things I had no control over. A usual two and a half week wait has turned into a five week wait. I sit here now, a week away from that clinic appointment on January 9th and I cannot make it come any faster. Someone, somewhere knows more about me; more about what happens next for me than I do. I can’t even plan what I’m going to be doing next month until I know those results, as the outcome will determine how much time will be taken in treatments, and what they are to be.
Then there’s the recovery from the surgery itself. No longer is it a case of – come on, Billy, let’s go for a walk on the hills. Now it’s ‘where can I walk today, that he doesn’t need a lead, and which won’t be too challenging for me?’ These have never been considerations for me before! I am however not yet back to full fitness, although I’m out walking again and also using a treadmill daily. I have to therefore be far more careful of where I walk; I have lost the carefreeness of being able to just grab the lead, call the dog and simply set off, deciding where we go as we walk. Fully in control of our own pleasure and self-esteem. I will need to wait some time before I can claim that state again.
I am finding this book helpful in my learning this new Posture of Waiting. It is “The Stature of Waiting” by W H Vanstone. It was given to me by Rev Steve Harvey, our Curate, who was given it when he faced cancer himself, by Bishop Jonathan Gibbs. I read this about being a patient :-
“What happens ….happens to him, is done to him; and the satisfactoriness or unsatisfactoriness of a particular day depends hardly at all on himself or his own efforts and decisions. A ‘good’ day is one on which a machine or instrument shows a certain reading, or a drug has a certain effect…”.
Yes, I get that. I am waiting for my body to heal; I can do somethings to help that, or at least not hinder it, but ultimately I need to let the wounds (external and internal) heal fully before I stress my body further. I am waiting for results which will determine how my next few months, maybe years, will pan out. I can’t make full plans until I know. I’ve become more dependent on others doing what they need to do. I am even, I realise, dependent on which drugs will be available in this area. Not all cancer drugs are available everywhere and some are available only on clinical trials. I can’t control if I am on a trial or not!
Vanstone also talks about how there is often a ‘suddenness’ in transition between being a self-sufficient person into being a patient. That this is so disconcerting that it immediately alters how we perceive the opinions, attitudes and remarks of others, as well as how we see ourselves. I know that I found myself constantly wondering how it was that professionals seem so easily to view me as ‘the patient’ when I hadn’t actually fully grasped that I was one! My head had to catch up with what was physically happening. So I was always having this conversation with myself in my head – how have I landed here? Is this really me?
This suddenness makes learning to wait even harder. Luckily, having moved from being ‘economically productive’ to being ‘retired’ in recent years, I have already learned the necessity of having to change pace. This is going to be helpful as I move forward. A more relaxed and considered pace has many benefits. It’s possible, beautiful even, to have time to stare at the clouds for a while. It;s pretty good to spend a whole afternoon relishing the reading of a book. It’s not at all bad to walk in the woods without worrying about having to get back to make a deadline. I’ve learned these things. I can learn how to wait for what is outside of my control, surely?
Vanstone’s book is of course about Jesus and his stature of waiting. About how what we have viewed as his ‘suffering’ was more about his ‘passion’ which has the same roots as ‘patience’. How he knew that he was called to move from being fully active to being completely passive. That he was ‘handed over’ to that state and how he accepted that as a fundamental part of his calling. I haven’t finished it yet, but I have learned already that even this – this wretched cancer thing – is part of what I am called into as a disciple of Jesus. God has allowed this to happen (he’s omnipotent so could have stopped it) and that there is a purpose in it. In ALL of it. Even, and possibly, especially, the Waiting and the lack of control. I will therefore gladly go on practicing how to wait with grace; with a good posture and with patience! Just don’t berate me if you see me banging my head on my desk and wailing in the meantime!!
It’s been a funny old year and it’s coming to a close in an entirely different way than I had expected. I had been dreading the 18th December – a year on from losing Mum. Yet, I found that I was happy to think of her with love and a deep sense of joy for having been her daughter. Now, was that because of the place I find myself in today? Not sure, but it’s bound to have had some influence.
Let me explain. A couple of months ago we went to Rome with some great friends of ours. We’d been looking forward to this very much. Although we’d had a fabulous holiday in SE Asia earlier in the year, by the summer it was really hitting me just how much I was missing Mum. (For more about that, see my earlier post). By mid-September I’d felt out of sorts for some time, putting it down to grief. So flying off with friends who always make us laugh and who are very dear to us, gave me such joy. We had a brilliant time, then they came back and we stayed on a week, hiring a car and tootling round Lazio, up to Assissi and Firenze, back down the coast to Civitavecchia, before flying back home ourselves. Now for a gory bit – if you’re squeamish or you don’t like mention of “women’s stuff”, skip the next paragraph!
It was in Assissi (I always remember things by places!!) that I first noticed some bleeding. Now, as I went through the menopause around 8 years ago, I knew right away this wasn’t normal. It was after sex (I know, I’m far too old to be doing that sort of thing!!) so I wasn’t overly worried – there are many reasons it might happen. Nevertheless, I made a mental note to get checked out on return. I saw no more bleeding during the holiday. On return, I noted a very tiny blood stain one evening which prompted me to think I must call my GP. I also remembered having something that felt like a period pain back in early September, which I had put down to potential summer ‘flu. The following day, whilst in Sheffield on a course, I saw more bleeding – not loads, but enough to make me realise I could not mess about. I skipped the next session and phoned the GP. An appointment was made for the following morning – after some assertive pestering of the receptionist!
Thus began something of a whirlwind – no, more like I’d jumped on a train that I hadn’t really meant to catch and that was hurtling along and I simply wasn’t able to get off. Now, let me tell you this – when I saw the blood in Sheffield, I felt icy cold and remember thinking, “This is cancer” I’m not daft; I know the statistics are that most (more than 90%) women who see such symptoms will be fine and there are many reasons that bleeding occurs. Maybe you think I was being dramatic; I am known for that! I don’t think so. I am usually an optimistic sort of person and, in terms of health, I don’t tend to get anxious about things. I feel as if I just knew.
The GP was fab. She reassured me and explained about cancer pathways (which, given my background, I knew about anyway) and that, even though the likelihood of it being cancer was very small, I would be on the pathway until it was ruled out. Ten days later I am in Huddersfield Royal Infirmary having a Hysteroscopy. Not a pleasant experience, but was supported by the loveliest of nursing staff and done by a wonderful Consultant, who was kind and very funny; I really liked her. She found, what she believed to be, a polyp, or possibly, she said, it might have been a fibroid. I was referred for the first available slot on the Day Surgery list.
So, duly, on the 13th November, I went along for this minor operation to remove the dratted polyp. It was the first time I’d had a general anaesthetic since I was 11 years old. I was very impressed with how the system worked and with the care and attention I received. In fact, I felt rather proud when the Anaesthetist pronounced me “fit, slim and very healthy”! (How we love the affirmations of professionals, despite our desire not to want to care!!). He said I would recover well. The time for my surgery came around and I was wheeled, wearing a gorgeous gown and delightful compression stockings, down to the theatre. A cannula was inserted into the back of my hand and the anaesthetist’s assistant was chatting away to me about my Fitbit and how many steps I aimed at each day, when I felt my face freeze and the room fade away. A minute later, so it seemed, a nurse was saying my name. “What’s happened? Can’t they do it?” I asked and she laughed; it was all done. Wow! Forty minutes of my life I didn’t know about.
Recovery did go well, as promised, and I was eating toast and drinking tea 30 minutes after surgery. I was visited by one of the surgeons who told me that the polyps (“There were more than one?!) had successfully been removed. “And you didn’t find anything else?” I had this concern that maybe a huge tumour would be hiding behind those pesky polyps! I was reassured that a biopsy had been done to check everything out anyway. Apart from not being able to drive and feeling dopey in the afternoon for a few days, I was fine. I was very glad it was done with and started to get on with my life, enjoying my walks with the dog; the fear of cancer receded from my mind. How blessed we were to have such a fine NHS that acted promptly and cared compassionately. I went to a New Wine “Women & Leadership” conference for two days and was able to enter into it fully and really enjoy it. Back at home, I got two sets of results back from other tests. A mammogram was clear; my cervical smear test was clear. I was on a roll! I felt better than I’d done for a long time.
Ten days after the surgery, a Thursday, I was ironing (must have felt good, because I rarely iron!) when I got a phone call from the MRI scanning department at HRI.
“Beverley Playle? I believe you’re waiting for an urgent MRI appointment?” said the efficient lady.
What the dickens? I felt my knees go weak. First I had heard of it. I can only think of one reason I would need one. “Why? What’s wrong with me?” Poor lady – I sensed her back-pedalling – probably reading the notes as I spoke and feeling absolutely dreadful, as she realised she was meant to call the Clinical Nurse Specialist and not the Patient. She made a hasty retreat and 5 minutes later, the CNS was speaking to me, apologising for the mistake, explaining that the Consultant wanted some scans done before they could meet to complete the set of tests. There were lots of reassuring noises and it was all very professional, but I knew then what the outcome would be. MRI scan was set up for that same day and a CT scan for the following morning. See what I mean about the “fast train”?
Funny thing though; I prayed; a lot. I called on others to pray. Somehow the fear dissipated. I find that incredible. It was like God stepped in and simply held me. A friend reminded me of how, at the New Wine event, we had heard that “underneath are always the Everlasting Arms [of the Father]”. And they caught me. I truly felt as if He scooped me up and hugged me to Him. I wasn’t under an illusion; something horrid was going on inside me, but He made me safe; and He made me brave. So, when out walking with Billy, on Friday afternoon, I got a phone call from the consultant, I knew what she was going to say; I was ready for it.
“There is no easy way to say this; it’s not great news. We found Cancer in the lining of your womb.”
I said I was ready, but it’s a bit like being braced to catch a huge ball you can see hurtling towards you; it still knocks you over with the weight of it. My feet weren’t quite planted firmly enough. I sat on a stone wall by the side of the woods in Honley. I looked out to the hills beyond and I thought “I want to live. Lord, I really want to go on living.” Then comes the telling of others. My husband – tears and declarations of love. I felt his concern when he met me on the drive as I got back from the walk and dried the dog for me! Then telling my daughters and sisters. So many tears. So much shock. Yet, the stats tell us that 1:2 people will get cancer in their lifetimes. Yet we know that most, caught early enough, are very treatable. Yet we know that it’s possible to live long and good lives, even when untreatable. Research brings new treatments almost weekly. Still, we are shocked by this horror. Still, we tremble at the word. Still, we find it knocks us for six; sends us sprawling.
Less than a week later, we go to meet our new Consultant, a Mr Nugent, at the McMillan Unit in Halifax. ‘I do not want to be in such a place’ I thought. ‘This is not the path I choose’. But here I am, gone from being in control to having no control. This is it now; I have to be “patient” and be done to. He draws me a diagram to show where they have seen it. He talks me through the scans; they seem clear. But it’s not the usual Endometrial Cancer. I have a “rare and aggressive” type. Well, that’s just great! For once I wanted to be just run-of-the-mill! I’d got my head round cancer, now it’s whirling again. I could cope with losing my womb, but now it looks like more has to be done to shift it.
Serous Carcinoma. This blighter operates at a deeper, cellular level. It can be there without being seen. There’s a standard clinical pathway for dealing with it surgically – lots of long physiological terms – but basically they are going to take all my reproductive organs, my cervix and something called an Omentum (who knew we had one of those?). Apparently, it’s an apron of fatty tissue where nasty things like cancer cells tend to hide. That must go then. Oh, and while we’re in there, let’s get rid of around 20 or so Lymph nodes/ glands in your pelvic area and abdomen! Why not? Anything else? No, that’ll do for now. We’ll put everything under a microscope and see if this varmint is hiding anywhere else.
And if it is hiding somewhere? Well, then that will mean Radiotherapy and also Chemotherapy. And if it isn’t there? Well, you might need Chemo anyway. It’s all about ‘margins’ you see. But if it’s absolutely not there at all – no sign whatsoever – is that it? You’d think so, wouldn’t you? Apparently not. This is a persistent and devious thing – it can raise its nasty head after a couple of years. Could pop up in the vagina. Or the bladder. Possibly the bowel. Very rarely seen in the lung though! Well, that’s just great! At least my lungs are going to be fine. I can breathe!!!
Earlier that morning, I’d met with my daughters, daughter-in-law and two of my grandchildren. Gorgeous 6-month old Harry and 11-yr old Ronnie. We had breakfast together in a place we all love over in Stockport. A good friend dropped by to join us for coffee. Over Eggs Benedict we shared joy in being together, with every one of us privately holding our real thoughts about what we might learn that afternoon. Back at home, after dealing with the information we’d received ourselves, we took turns to call everyone and update then. Sam says “I don’t like that word ‘aggressive’!” No, me neither. I’ll fight back, I promise her. I can be pretty aggressive when I need to be.
So it turns out the surgery will be done on the Friday 7th December. It could be done earlier, I’m told, but they’ll be hard pushed to get me in for pre-op before then. “I’m not having it done earlier. We’ve a night away booked with a gourmet meal, in North Yorkshire. I’m not giving that up!” A girl needs some control, don’t you know? I want my night away in a posh hotel – it’s a bargain break we booked ages ago. Suddenly it feels symbolic. I have to have that night. It’s agreed. The 7th it is then. After our night away (which was amazing, I have to say!), it all feels more real and we start our preparations in earnest. New pyjamas; dressing gown; Sanctuary shower gels. Crucial stuff. Things have to be cancelled. Do we still do the family Christmas dinner? What about events I was involved in? It all gets sorted – and Op day arrives.
We stayed the night before in the Bexley Wing Patient Hotel. The top floor of this specialist Cancer Unit and rooms much like a Travelodge. Better than travelling into Leeds at 5am that’s for sure. 7am finds us down at the door of the ward. ‘Is this actually happening’, I ask John. From then on it feels like I’m like royalty. Surgeons and anaesthetists turn up and ask for an audience. Everything is explained well and my questions dealt with in detail and with kind frankness. An ‘Enhanced Recovery’ Nurse (What?!?) comes by and talks to me about what I can expect to feel immediately after the surgery. I don the required compression socks, as I change into the theatre garb and say goodbye to the hubby as he goes off with my blessing to have breakfast; it’s time I had my own space, to think my own thoughts now. He thoughtfully messages me a photo of his eggs and bacon as I am reading my consent form. Such love:)
At 10am I walk to the theatre with the Enhanced Recovery Nurse; delighted I had bought a dressing gown of a decent length to cover the obscenely flapping gown and that the revolting paper knickers would not be on display! I joke with the Theatre Assistant as he shows me the trolley he has set aside for me, “I had ordered the Maserati, you know”. Shrugging and smiling, he tells me it’s the best he can do but he’s sure he can sort out a cream tea to compensate. “Well, I had asked for the Prosecco”. “We’re all waiting for Prosecco; they promise and it never comes!”, he quips. I like him; I feel safe as he wheels me down the corridor to an anteroom of the theatre where it will all happen. I meet the Anaesthetist again and she struggles to find a decent vein, as it’s cold in there, but eventually the needle goes in and then, the cold drug starts to enter my bloodstream. She asks where I’d like to go in my dreams today. “Angkor Wat, please”. She says she’ll try to oblige and it’s the last thing I remember.
The op went well; I say “well”, what I actually mean is that they got the organs out that they said they were taking and nothing went wrong. I felt pretty dire after it- but then, it is major surgery. ‘How bonkers’, I remember thinking, ‘I was healthy and bouncing around yesterday – today I’m laid up in bed, on oxygen, in awful pain, morphine through a drip and being closely monitored by nurses who are expressing concern about my low blood pressure!’ It all hurt like heck for a few days but I was looked after brilliantly; visited by some truly lovely people and continuously messaged by fabulous prayer warriors! (More about that in another piece!)
I’m home now, having been discharged the following Tuesday. What can I say about recovery? It’s hard work being still. I am not good at being a patient. It’s frustrating when you want to go for a walk on the hills and you can only shuffle across your lounge. Every day though, I found the pain lessened; I could move a little easier and I felt a little better. Two weeks on, I know I’ve still a way to go, but my incredible husband is beginning to feel that there is life after nursing the wife! Christmas will happen and will be even more wonderful because I realise afresh just how precious my loved ones really are. All the organs and tissue that were taken away are currently being analysed and on the 9th January I’ll be back with Mr Nugent finding out what the next steps are. I am honestly not afraid. It seems to me that there is not point to fear. It feels like it would only serve to try to destroy my hope and my happiness. I will NOT less this thing steal my joy or chase away my peace!! They have seats at my table – I won’t let despair and anxiety sit down with me! (I’ll talk in another piece about how my faith has sustained me and how the prayers of friends have carried me as I stumble along on this journey).
I have Cancer. I need to keep saying it to remind myself it’s actually true. It isn’t a horrible dream. It’s not someone else; its happening to me. But today, as someone has said to me, I have less Cancer than I had two weeks ago. And for that I am thankful. The 9th January will take care of itself and nothing I do will change what will be known that day. I intend to live well and live long; I will fight when I need to and lie back and be done to when that is called for. I go on being held in those “everlasting arms” and rejoice in how truly marvellous it is to be alive and have my life filled with so many who love me and delight me. I am very blessed.