Like many people, I’ve known a fair few people who have had cancer, some of whom are thankfully still here and some of whom are not. I have seen first- and second-hand the different ways people “cope” with the illness. It’s not exactly brain science or rocket surgery to conclude that it’s very much a personal choice: no way is right or wrong.
That’s the short conclusion of this very long post so you might want to skip the analysis. However, if you have a spare hour or two and are bored of surfing the internet, feel free to dive in.
Three Wise (?) C-Monkeys (Who Didn’t Steal Dory’s Money)
I’ve been thinking a lot over the last month or so about three Cancer-Coping case studies: me, my brother and a friend (GC). I have mulled over how and why we have each “managed” our cancer journeys in different ways.
On the C-Front
I have an inclination to share and be open with people, in a way that perhaps belies my introverted nature. I needed to talk about Graeme’s illness with my friends as it felt like the emotions and feelings were too big and life-changing for me to cope with on my own.
Similarly, I think that I would positively explode if I didn’t tell anyone about my illness and tried to keep it under wraps. It never occurred to me to hunker down in the bunker and ignore the rest of the world.
On 1 September last year, Graham had the unenviable task of calling my parents to tell them that there was a high chance that I had a brain tumour. Shortly afterwards, we discussed the idea of wider disclosure within our families and different circles of friends. I knew that friends and family would want to know. I equally felt that I needed to share the sorry news with them to receive the support that I knew would be vital for me and my family.
Timing is Nothing
My hesitance was in the timing of the disclosure. I suggested that we should wait to tell those around us until after we knew for sure whether it was a primary brain tumour, secondary brain tumour or one of the “rare conditions” that it could have been. The MRI scan was scheduled for the next morning so it was only going to be a day or so before we would know more.
I knew from my brother’s illness that, as soon as you tell people, you’re bringing them “down”. What’s more, some of the people who knew and loved Graeme would be going through it once again. I wanted to protect them and give them some time to enjoy the innocence of the unknown unknowns. I was also concerned about those friends who were either on holiday or due to go on holiday as I didn’t want to ruin their holidays. I further wondered whether those on holiday might hear from those not on holiday… so should we wait until everyone was back from holidays before telling anyone for fear of “leaks”?
Graham saw it in much simpler terms. He was sure that certain people would want to know as soon as possible and reasoned that there is no “good” time to tell people. He also suggested that the lack of a specific diagnosis didn’t change the fact that there was something going on in my brain (on top of the usual!) that was seriously wrong. We therefore decided to tell certain people first and ask them to spread the news to specifically named people.
In the Facebook world (which is, at times, an alternative universe that bears little resemblance to what is going on in the real world), I could have chosen not to state what’s going on. If I had made that choice but continued to use Facebook, I could have either lurked in the background or continued with the trivial and non-trivial “liking” and “sharing” that makes Facebook such a fabulous procrastination tool. Alternatively, I could have withdrawn completely and retreated to those around me in the Real World.
It seemed (and still seems) narcissistic to announce on Facebook and via messages: “hear me, hear me, give me sympathy, it’s all about ME”. I thought, however, that Facebook might be the best way to keep the majority of people updated from various spheres of my life. Besides, I felt like it would be too much hassle for me (physically and mentally) to tailor updates and watch what I (and others) say on Facebook for fear of letting the cat out of the bag, people not wanting to see it and/or not being remotely interested in tumour news invading their social media escapist world!
Soon after it was confirmed that I have a brain tumour, I thought pretty quickly about starting a blog, knowing how cathartic it had been when I wrote about Graeme in the blog I wrote during the last weeks of his life. Writing about what I’m going through (including the minutiae, which I’m intrigued by and want to understand as best I can) helps me. I generally don’t over think or self-censor what I include on the blog (except out of concern for my Mam, who doesn’t want to see some of the photos).
This blog has evolved into my outlet for: recounting the details and/or speculation about what each stage involves; setting out my thoughts and fears about how our current lives and prospects for our future as a family have been devastated; writing about memories that come to mind; sharing miscellany that fascinates/infuriates/amuses me; and, anything and everything in between.
I make it public because it gives those who are interested an update and, just as importantly, the “publishing” element makes me think about how best to crystallise and order my thoughts in a way that I think others can follow:
“Don’t write so that you can be understood, write so that you can’t be misunderstood.”
― William Howard Taft
This distillation of the concepts and thoughts swirling around my brain into posts (which I hope come close to No. 27’s ideal) makes me feel, in turn, able to process and reflect on it all in a logical way. As this “processing” was one of the primary reasons to start the blog, I’m getting what I need from it, which I almost certainly wouldn’t do by keeping a private diary with half-formed thoughts.
The response to this blog from Facebookers and non-Facebookers alike has been almost-unanimously positive for me and my family. It’s also a genuine source of strength as it has led to concrete and much-needed practical support from people, some of whom we have never met (see ‘R Force One)!
As I’ve mentioned previously, I can’t help but compare my experiences to those of my brother given the whole “brain tumour” coincidence. Graeme, like me, told all of his friends (near and far) about his diagnosis. He didn’t ask them to keep it a secret, and he updated them at each important stage. Like me, I don’t believe it occurred to him to restrict the news to an inner circle of family and friends.
My brother and I were therefore similar in not being secretive about our illnesses generally but the devilish difference was/is in the detail. The level of details he provided on non-football and movie matters can be summed up with the following line from a movie that is a guilty pleasure of mine:
“He talks about as much as a fish”.
When I was at Law School, I remember asking him how some specific friends were and he said fine etc. A few days later, I found out that one of said friends had a new job so the next time I spoke to him I said “hey, great news about the new job, but why didn’t you tell me the other day when I asked you how she was?”, to which he replied “well, you didn’t ask”. Silly me: I needed to guess what major event might have happened and ask him specifically if it had indeed occurred!
So Graeme didn’t “do” details in almost any context! You can probably imagine how this used to drive me up the wall given the nature of my own ever-thirsty information-seeking brain. This general details dearth tracked through into his brain tumour journey. He shared the same level of details (almost zilch) when I asked about radiotherapy as he would with a question about a day at work. A generic or specific question yielded the same sort of response: “it’s fine” or “I’m feeling tired but ok”.
It wasn’t just me; he didn’t talk much about the details with anyone else either. He simply got on with it and didn’t seem to want to talk about it so we didn’t push him for details.
Analyze The Other
My friend, GC (no connection to my husband who shares the same initials), was fiercely private about her various encounters with illness over the years. She didn’t want anyone outside of her immediate family to know pretty much anything at all. I think that I was one of the few people who knew generally of her “previous” with illness but she very much downplayed the whole thing. I knew even less about the details of her illness/treatment than I did about my brother.
Although I knew or suspected when she was “out of action”, I never knew for sure at the time whether it was a return of cancer or one of the other illnesses that was troubling her. Increasingly over the years, she told me some snippets after the fact, but they were mostly stories that had a black humour element to them that she delighted in and knew that I would find funny.
At various times over the years, I had been concerned when she had “gone quiet”. Time goes by so quickly and so it wasn’t always down to her being ill that we hadn’t been in touch for a while. It was sometimes down to life and work getting in the way for both of us. Often, just as I was beginning to worry that a few texts/emails/calls too many had gone unanswered, she would surface from a health issue and play it down. Invariably, when we next met up, she would give some limited information that was enough for me to understand some tumour humour that she wanted to share.
Her death from cancer was sudden to me in that I hadn’t known that she was ill, never mind how serious it was. I think that I became complacent and thought that, notwithstanding her periodic episodes, she would just recover from them as usual, and we would meet up again when she was ready. The last time I saw her, she looked healthier than I had ever seen her and this perhaps added to my complacency.
A few months before she died, I knew that she had been offered a new job and so assumed she was busy with that. Equally, I was busy at work, etc, and it was maybe a couple of months after I’d last heard from her that I became concerned. I then got a chatty card from her and it relieved the worry that was building. A few weeks after I received that card, I got a call from her family to say that she had died the previous night.
This was obviously a starkly different approach to sharing a cancer journey than the routes taken by me and my brother.
What Lies Beneath?
In addition to the practical and logistical details that I’ve described, I’ve included on this blog my biggest worries, fears and thoughts about my tumour and the prognosis. My biggest single worry is about the effect that my illness is having (and my future absence will have) on those around me, particularly my children. I don’t profess to identify and share on this blog every single emotion that I’ve gone through in the last five months but that’s mostly because I’d be repeating the same thoughts over and over again. Plus, I’m on the clock here and I just don’t have that kind of time!
Some of the finer details might be too personal for me to share on the blog, particularly when they relate to others around me. However, I haven’t (consciously) held back from sharing the broad themes, worries, anxieties, fears, expectations or dark thoughts (the latter have been, thankfully, relatively infrequently) that I’ve been feeling. From the perspective of this blog being my outlet, it would be utterly useless for me to do so as I would just be putting on a front to myself!
Those of us who were there watched with awe at, and were inspired by, the strength, positivity, humility and determination Graeme showed outwardly as he faced his cancer. But, just as Graeme didn’t share any of the practical details, he didn’t share what he was thinking either.
He didn’t share reflections or fears about what he was going through proactively and had a look of “don’t even go there” if I (or anyone else as far as I know) even hinted at asking him questions to try to understand what was going on emotionally inside his head. I didn’t pry further than he was willing to discuss, which was hard for a natural inquisitor like me.
I have wondered recently as I’ve gone through similar things if Graeme had comparable thoughts and emotions as me. Among many other things, I wonder what was he thinking about as he was lying on the table being zapped? What was he thinking about when he had each of many CT and MRI scans? What was he thinking about regarding his prospects of survival or living with the Big C as he was lying in bed, or sitting with friends, or just chilling? Was he worried? Was he scared?
I doubt that he was recalling the American Presidents during scans. Beyond that, and despite us being as close as I think two siblings can be, I have to admit that I knew then, and know now, practically nothing about Graeme’s state of mind during his illness other than what I guessed from the little snippets he said. He clearly thought about his future and how things had changed for him but didn’t discuss it in any detail.
Analyze The Other
As GC was fiercely private about the nature and degree of her illness, it won’t surprise you that she never shared anything with me about her prognosis or her fears, thoughts and emotions about the same. The closest she came was saying “I totally get that” when I told her one specific thing that Graeme had said during his illness, which was a small insight into her attitude, but not much more than that.
Searching for The Zero inside Myself
I often worry that people will find it self-indulgent that I write a blog about me, myself and the Squatter. At these moments, I try to remind myself that, first, people can choose not to read it (!) and, secondly, if writing the blog eases a little bit of emotional pressure from my overburdened brain (on many levels), that’s good enough reason to keep on writing.
After Graeme died, I struggled with self-doubt and guilt as to whether or not I could have provided more emotional or physical support to him.
Did he not feel able to share emotional thoughts or even practical details with me for fear of worrying me? (By the way, if that was his intention, he needn’t have bothered as that worry ship had already launched at full speed headlong into choppy and unchartered seas from the moment he was taken into hospital on 21 January 2005.)
Did he not feel able to talk to me because he knew or suspected that I wouldn’t be strong enough to deal with any of his worries, fears and thoughts? If that was the case, I fear that he might well have been right.
Did he want to protect me from seeing or hearing about the physical and emotional pain he was in (beyond the obvious physical symptoms)?
Was he in denial about the seriousness of his diagnosis and we somehow got swept along (whether deliberately or inadvertently) in currents that encouraged his denial?
I was haunted by those and similar questions both immediately before and for years after he died.
Analyze The Other
I was still struggling with the questions and guilt I felt about my brother when GC died. I naturally wondered whether I could have provided more emotional and physical support to her. Some, if not all, of the questions I was struggling with about my brother were suddenly relevant in relation to my friend too.
Graeme’s reluctance to share details of treatments and what he was thinking fits in with what I know to be true of Graeme in other non-cancerous areas of his life. He had a calm, take-it-as-it-comes, non-dramatic attitude about everything (except in relation to his ex-girlfriend who we successfully sued for money that she owed him!). The Rents always say that he was so laid-back, he was almost horizontal.
I don’t think he could have “faked” his lack of desire to talk about his illness with so many people for a period of nearly two years. I believe that, if he had a burning but unfulfilled need to share, it would have spilled over or manifested itself in other ways, such as being snappy, frustrated, angry, sullen or upset.
One time (at band camp?) Graeme wondered out loud whether he would get a mortgage when he was better. He read a few books by people who had sufdered from cancer and specifically brain tumours (including “Like a Hole in the Head” by Ivan Noble). He said that it was good to read the Hole in the Head book in particular because it resonated with him in a lot of ways and it was good to know that others were thinking what he was thinking.
The still waters therefore didn’t cover a shallow puddle! He just chose not to share his innermost thoughts.
Positively in Denial?
I don’t think that Graeme was in denial about his illness or that his positivity was a result of him “putting on a brave face”. I don’t think that he could have sustained that hope and belief outwardly, consistently and unwaveringly in such close proximity to so many of us without it being real.
I remember an occasion when, seemingly out of nowhere, Graeme said: “if I didn’t think I was going to get better, I would eat Chinese takeaway and drink Stella every night”. He never got to that stage even after the doctors told him there was no further treatment options available. From his bed in his final weeks, Graeme told a friend who had travelled from Israel to visit for a couple of days that he was still on for the return trip to Israel.
My brother’s positivity even extended to telling certain of his friends (as later reported back to us) that he was trying new treatments. These treatments were actually vitamins and supplements that he’d read about. I don’t believe this positivity and hope was faked for the benefit of others around him as he seemed genuinely to believe that the treatments would help him to beat the odds.
While I don’t profess to understand it, I marvel and wonder at how he had the strength to remain positive for so long, until literally his last breath. I have had many more outward “moments” of negativity in five months than he did in over 21 months.
In my case, Graeme seemed to want and need me to be the same little sister that I’d always been, including: ranting to him about what was annoying me (politically and personally: I’ve not changed much); talking about our mutual and not-so-mutual interests in films, music, tv shows, sport and books; laughing and joking about anything and everything; going shopping, to the cinema and the Camp Nou; and, spending time with our friends when I was at home. So I took on that role even as I worried that there was something more that I should be doing.
He said to me expressly at the beginning of his illness that I shouldn’t treat him any differently: “you should still tell me if I’m being an idiot, don’t worry about saying it just because I’ve got a brain tumour”. I believe that he craved normality in a C-World in which he’d been unwillingly dragged into, as all of us C-monkeys have been.
Analyze The Other
In my friend’s case, as in my brother’s case, how she faced her cancer fits in with what I understood about her. She did what she had always done, which was for her health to remain a fiercely-guarded private issue.
Further, although I was upset at the time that I hadn’t provided any practical or emotional support to her or her family, I suspect now that what she wanted and needed from me (and others outside the family) was nothing. I don’t mean this in a pathetic way. I simply mean that what I would have wanted to do had I known of her illness (visit her, for example) wasn’t what she wanted.
I don’t know (as I don’t know relating to my brother) whether this was because of all or none or a mixture of her: not wanting to worry those around her; not wanting people to see her in a vulnerable position; not being emotionally or physically up to seeing people; and/or, not thinking those of us who would have been there in a shot were physically or emotionally able to deal with supporting her.
Peace at Last
Analyze This, That and The Other
I realised relatively recently, but well before I was also stamped with a “C” on my forehead, that I had previously tried to transpose on to my brother and friend my thoughts about what they needed based on what I thought I would need if I were in their shoes. Crucially, I was also asking myself what more I could have done without asking whether it was what they wanted. Their wishes were paramount in how they (and everyone around them) faced their cancer.
Ultimately I’ve concluded (rightly or wrongly) that my brother wanted nothing more from me than the roles that I’d always played: his sister and his friend. I am not saying that I played these roles perfectly, far from it. Equally, GC made a clear and conscious choice that she didn’t want those of us who were outside the family to know about her illness.
I respect and love them both for staying true to themselves right to the end. I have regrets-a-plenty about all sorts of things but I have a degree of peace at least as to whether they needed or wanted anything more of me as, after a lot of soul-searching and chats with friends and family over the years, I don’t believe they did.
That said, I don’t think it was wrong of me to wonder (and analyse) whether there was anything more that I could have done for either of them, or worry that there was a specific reason why they didn’t ask any more of me. Those questions were driven by my desire to have been a good sister/friend to them, combined with grief, shock (in my friend’s case) and a human tendency for guilt (for which, if I do say so myself, I have considerable aptitude – I would make a good Catholic in that respect).
Like my brother, GC and many others, I don’t want to be “defined” by my tumour. That probably seems oxymoronic, being written on a blog that was created directly as a result of, and to update people about, my tumour. By updating everyone via the blog, however, it frees up time when I am in touch with people in person or via messages to talk about other things as well. I too crave normality in circumstances that are far from normal.