If all goes according to plan, we are travelling back to London from Majorca today. Ah, the spring of 2015 is so much better than the spring of 2014. But just in case you don't want to miss out on last year's colourful events, this blog post was prepared well over a week ago and put into the system to appear on your screens today...
ONE YEAR AGO
17 April 2014
My perspective has shifted. Now, I perceive this as Good News:
I have cancer. It is confined to a small lump in my breast. It hasn't affected any cells in the rest of my breast, or in the other breast.
I will need a lumpectomy. My operation is planned for the 1st of May, in exactly two weeks' time, one month after my diagnosis.
Six to eight weeks later, I will start a three-week course of radiotherapy.
And that, we hope, will be that.
The only remaining unknown is whether the cancer has spread to the lymph nodes. This will be tested during the operation.
These are the facts.
We met with the surgeon today. I think she was rather taken aback by all the questions I asked (What is the hormone receptor status? Is it HER2 positive?) even though I'd been given a rather smart folder with information for the breast cancer patient, directing her to ask exactly those kind of questions. In the end, she offered to show me my MRI scan pictures. Even I could see how clearly defined and confined the cancer is.
Of course I am relieved, although there is also a strange sense of anti-climax. All that worry and upset, all those utterly fundamental thoughts about living and dying. All that frightening loss of control.
I feel as if I have some, if not most, of my control back again, now that I am armed with the full facts and a certainty that this will turn out to be a mere blip on my path, rather than a deviation from it.
[Ah, little did I know that there was more to come...]
Now, there is a danger that I slip back into my old familiar self, the one who is in control, the one who can cope.
The charmed one.
Perhaps the biggest shock in all of this has been my shock itself. I keep thinking: if I'm so utterly thrown by this, so tearful, so shaken, then how on earth will it be if something really difficult happens? If, like so many people I know and love, I have to cope with a life-changing, life-long condition? (Diabetes, arthritis, depression.)
If, worst of all, I lose a child or husband?
Cancer carries a certain gravitas, I have discovered. I have told almost everyone I come into contact with, including people I don't know, who need an explanation for my inability to give a talk or attend a conference. There is universal, instant sympathy and understanding.
Now that it turns out to be relatively minor, I feel a bit of a fraud. Of course it is nice to get all this sympathy, but shouldn't others get an equal share of it? There are so many misunderstood and debilitating physical health conditions (quite apart from equally debilitating mental health conditions) that need as much sympathy, as many allowances.
In a way, I feel lucky that I have cancer because people understand my distress and my need for time off. As I have been saying, only half-joking: As far as excuses go, cancer is quite a good one.
But perhaps I ought to listen to those wiser than me. Like one of my good friends, who said: "It is like you to be positively reframing this as an educational experience but you are allowed to feel less positive emotions from time to time."
Owl has helped enormously in making the children part of this, making them understand.
I almost forgot to take him to the appointment with the surgeon, but my younger daughter reminded me.
"He's a bit worried about what the doctor is going to say," I said, making him tremble.
"Oooh, don't worry Owl," my younger daughter said, rushing over and kissing him. "You are not alone, because your mummy is worried too."
Friday, 17 April 2015
Sunday, 12 April 2015
116. With friends and family in Holland
ONE YEAR AGO... spending a couple of days in Holland
12th April 2014
I meet my Good Old Friend for tea and cake.
She is a cancer nurse and has seen hundreds, if not thousands, of cancer patients go through their treatment. She is also one of my nearest and dearest friends.
I am discovering once more how completely wonderful it is to have friends who have known me for so many years. Good Old Friend and I met as teenagers, starting our nursing training together, and we have walked alongside each other ever since. I love my friend and would trust her with my life.
Good Old Friend thinks this definitely sounds like an early cancer, a treatable cancer, a cancer I will survive.
"I think," she says, "that this will be a part of your journey and it will turn out to be something really important and significant."
She talks me through the questions I need to ask the surgeon. Reassuringly, she explains that even metastasised breast cancer [cancer that has spread] can be cured with chemotherapy these days.
And yet for all that reassurance, she also tells me of her utter shock when hearing my news.
To find that she, too, was shaken: that has validated my own shock.
Her son [aged 15] had asked, also in shock: "Gaat Irene nou dood?" ["Is Irene going to die?"]
I am staying with my sister and my older daughter.
Whose Dutch, by the way, has improved enormously.
[That was one reason for sending my daughter across the Channel by herself: she took a self-taught Dutch GSCE that summer and needed practice. Thank you sisters and friends who took her under their wing - she passed the exams with flying colours!]
My daughter loves Knee Owl.
"Why don't you make me one?" she asks.
I will! What kind would she like?
"I don't know. Maybe I can invent something wrong with me?"
Ah. I see. Owls are there for the sick and the infirm. But because her knees are fine she won't need my friend's, and because she doesn't have cancer she won't need mine.
I tell her that she won't ever need an owl as an alter ago and a companion in illness, because she's got Pig. He is the best.
12th April 2014
I meet my Good Old Friend for tea and cake.
She is a cancer nurse and has seen hundreds, if not thousands, of cancer patients go through their treatment. She is also one of my nearest and dearest friends.
I am discovering once more how completely wonderful it is to have friends who have known me for so many years. Good Old Friend and I met as teenagers, starting our nursing training together, and we have walked alongside each other ever since. I love my friend and would trust her with my life.
Good Old Friend thinks this definitely sounds like an early cancer, a treatable cancer, a cancer I will survive.
"I think," she says, "that this will be a part of your journey and it will turn out to be something really important and significant."
She talks me through the questions I need to ask the surgeon. Reassuringly, she explains that even metastasised breast cancer [cancer that has spread] can be cured with chemotherapy these days.
And yet for all that reassurance, she also tells me of her utter shock when hearing my news.
To find that she, too, was shaken: that has validated my own shock.
Her son [aged 15] had asked, also in shock: "Gaat Irene nou dood?" ["Is Irene going to die?"]
 |
| It's not all bad news... Good times that week included time with extended family: with my sister at my aunt's 91st birthday party |
I am staying with my sister and my older daughter.
Whose Dutch, by the way, has improved enormously.
[That was one reason for sending my daughter across the Channel by herself: she took a self-taught Dutch GSCE that summer and needed practice. Thank you sisters and friends who took her under their wing - she passed the exams with flying colours!]
My daughter loves Knee Owl.
"Why don't you make me one?" she asks.
I will! What kind would she like?
"I don't know. Maybe I can invent something wrong with me?"
Ah. I see. Owls are there for the sick and the infirm. But because her knees are fine she won't need my friend's, and because she doesn't have cancer she won't need mine.
I tell her that she won't ever need an owl as an alter ago and a companion in illness, because she's got Pig. He is the best.
Saturday, 11 April 2015
115. Of Owls, emotions and a teenage son
ONE YEAR AGO...
11 April 2014
This is rapidly turning into Owl's story rather than mine.
Although of course it is mine, my deeper, truer story perhaps. I am flabbergasted by its power, the way it instantly reaches the part of me that dares not show itself.
"I am frightened" doesn't ring true, because I don't recognise myself when I am frightened.
"I don't want to be a cancer patient" may be true, but it sounds petulant, complaining, angry perhaps.
But when I say "Owl is frightened", I am filled with compassion for him, for myself. Choked with compassion. Poor, poor Owl. Of course he is frightened.
Of course I am.
And I know that no amount of reassurance or shows of strength can take his fear away. No use saying that thousands of Owls before him have had cancer and got through it and are fine. He knows that.
But he is frightened, and all I can do is sit with him, sit with himself, and allow him his fear.
Owl doesn't want to be a cancer patient. That is not a statement borne of petulance or rebellion against life: it is a frightened whisper.
I don't want to be a cancer patient, not because it clashes with my role as competent and in-control woman, but because it clashes with my sense of self. It turns my world inside out.
Isn't that the hardest thing?
So many people have credited Owl with wisdom, yet here he is, toppled over (literally) by the slightest breeze.
Here I am, with my life so full of blessings, aged 50 and never suffered any significant loss or life challenge. Early stage breast cancer hardly ranks highly on the list of possible challenges, but like Owl, I am blown over.
OTHER UPDATES:
I am feeling much less nervous, physically, than earlier in the week. I no longer have that constant weight in my stomach, the lurching, the butterflies. Perhaps I am getting used to being classed as a cancer patient? To the uncertainty it brings?
But I am living on such an emotionally charged level.
The slightest thing turns on the tears, and that is something I am no longer used to. Weeks, months, even a few years can go by without any need to cry about my life (crying at films or beautiful music doesn't count).
But now, I cry when I think about myself.
I cry when I write about Owl and his feelings.
I cry when people are nice to me (and so many people are nice).
I cry when I suddenly have more to do than I thought I had: tears of not coping.
The sound of the cello, the feeling of hot water on my skin, a loving embrace: everything moves me to tears. It is as if I am connected to the raw essence of life and love, all the time, and it is exhausting.
A few days ago, I wrote about the unhelpful things people do or say.
How a focus on themselves, rather than on me, turns their words from supportive into an ordeal.
I feel a bit mean now, having said that. There have been several such people in recent days, and I am so conscious of how hard it is for them to be confronted with illness or death. Most people are simply not experienced with communicating about such things, or too fearful of being confronted with the emotions of the suffering, the ill and the bereaved, and so they can't really listen.
I am feeling much warmer towards everyone now and try to encourage as much openness as possible by talking openly myself.
And I am learning to ignore the comments or suggestions that aren't helping.
TELLING MY SON...
My son returned from his school trip last night. It was late and he was tired, but my husband and I both agreed that this couldn't wait.
So we sat him down at the kitchen table and told him that I have cancer and will need treatment.
"Oh, OK," he said in typical teenage-boy fashion, matter-of-fact and devoid of emotion or the betrayal of any concerns.
This evening, he and I have spent a long drive together. We are on our way to Holland, where he has a rowing camp (he missed the outward journey on the school coach as he was too busy returning from the other school trip, so I'm dropping him off in Amsterdam; I will then join my older daughter who is staying with my sister). I am writing this in the cabin of the overnight Harwich-Hook of Holland ferry.
[Are you keeping up? Blimey, such complex arrangements. I do remember how worried I was about this trip. Would I be in a fit state to drive all the way to Holland? Would I crash the car? But all went well. In fact it turned out to be a blessing in disguise, because car journeys are excellent for talking to teenagers.]
So, without being asked, I talked and talked about everything.
I talked about the MRI scan, the difference between radiotherapy and chemotherapy, why we need to wait for the results and what we are waiting for. I gave him all the technical knowledge I could think of.
He listened; he asked the occasional question.
"Is chemotherapy where your hair falls out?"
It can be. I explain why: how chemo kills fast-growing cells, and therefore kills cancer, but also affects healthy cells and in particular the ones that grow fast: hair; the lining of your stomach and gut. Hence the side effects: hair loss, diarrhoea, vomiting.
"Doesn't radiotherapy kill all the cells, even the healthy ones?"
It does. That's why the machine turns round, concentrating on the spot in the middle which will get blasted most. And that's why you have to keep coming back: you simply cannot have it all in one go.
I tell him how lucky I am, getting this now and not 20 or 30 years ago when treatment was far less sophisticated or successful; and getting it in my breast, where it can be found early enough.
"How did you find it? Did you just feel it?"
Yes, I did.
I told him everything, the whole story, from first feeling the lump and being so sure it was harmless, to waiting to hear how much of my breast has cancer.
My son won't ask questions, so I will just keep telling him what's happening, without being asked.
[Which is exactly what I've done, always. With all three of them. Test results, trips to the hospital, meetings with the consultant: I've reported everything as part of "this is what happened today". I have never sat them down again for a semi-formal conversation (too nerve racking for all of us!), but told them any news immediately, individually. Each child has needed a different approach, a different language. With my son, the approach has often been: talk to his back whilst he's sitting at the computer. Worked a treat, and he clearly thought so too... see my blog post on talking to teenagers about cancer]
To be continued...
11 April 2014
This is rapidly turning into Owl's story rather than mine.
Although of course it is mine, my deeper, truer story perhaps. I am flabbergasted by its power, the way it instantly reaches the part of me that dares not show itself.
"I am frightened" doesn't ring true, because I don't recognise myself when I am frightened.
"I don't want to be a cancer patient" may be true, but it sounds petulant, complaining, angry perhaps.
But when I say "Owl is frightened", I am filled with compassion for him, for myself. Choked with compassion. Poor, poor Owl. Of course he is frightened.
Of course I am.
And I know that no amount of reassurance or shows of strength can take his fear away. No use saying that thousands of Owls before him have had cancer and got through it and are fine. He knows that.
But he is frightened, and all I can do is sit with him, sit with himself, and allow him his fear.
Owl doesn't want to be a cancer patient. That is not a statement borne of petulance or rebellion against life: it is a frightened whisper.
I don't want to be a cancer patient, not because it clashes with my role as competent and in-control woman, but because it clashes with my sense of self. It turns my world inside out.
Isn't that the hardest thing?
So many people have credited Owl with wisdom, yet here he is, toppled over (literally) by the slightest breeze.
Here I am, with my life so full of blessings, aged 50 and never suffered any significant loss or life challenge. Early stage breast cancer hardly ranks highly on the list of possible challenges, but like Owl, I am blown over.
OTHER UPDATES:
I am feeling much less nervous, physically, than earlier in the week. I no longer have that constant weight in my stomach, the lurching, the butterflies. Perhaps I am getting used to being classed as a cancer patient? To the uncertainty it brings?
But I am living on such an emotionally charged level.
The slightest thing turns on the tears, and that is something I am no longer used to. Weeks, months, even a few years can go by without any need to cry about my life (crying at films or beautiful music doesn't count).
But now, I cry when I think about myself.
I cry when I write about Owl and his feelings.
I cry when people are nice to me (and so many people are nice).
I cry when I suddenly have more to do than I thought I had: tears of not coping.
The sound of the cello, the feeling of hot water on my skin, a loving embrace: everything moves me to tears. It is as if I am connected to the raw essence of life and love, all the time, and it is exhausting.
A few days ago, I wrote about the unhelpful things people do or say.
How a focus on themselves, rather than on me, turns their words from supportive into an ordeal.
I feel a bit mean now, having said that. There have been several such people in recent days, and I am so conscious of how hard it is for them to be confronted with illness or death. Most people are simply not experienced with communicating about such things, or too fearful of being confronted with the emotions of the suffering, the ill and the bereaved, and so they can't really listen.
I am feeling much warmer towards everyone now and try to encourage as much openness as possible by talking openly myself.
And I am learning to ignore the comments or suggestions that aren't helping.
TELLING MY SON...
My son returned from his school trip last night. It was late and he was tired, but my husband and I both agreed that this couldn't wait.
So we sat him down at the kitchen table and told him that I have cancer and will need treatment.
"Oh, OK," he said in typical teenage-boy fashion, matter-of-fact and devoid of emotion or the betrayal of any concerns.
This evening, he and I have spent a long drive together. We are on our way to Holland, where he has a rowing camp (he missed the outward journey on the school coach as he was too busy returning from the other school trip, so I'm dropping him off in Amsterdam; I will then join my older daughter who is staying with my sister). I am writing this in the cabin of the overnight Harwich-Hook of Holland ferry.
[Are you keeping up? Blimey, such complex arrangements. I do remember how worried I was about this trip. Would I be in a fit state to drive all the way to Holland? Would I crash the car? But all went well. In fact it turned out to be a blessing in disguise, because car journeys are excellent for talking to teenagers.]
So, without being asked, I talked and talked about everything.
I talked about the MRI scan, the difference between radiotherapy and chemotherapy, why we need to wait for the results and what we are waiting for. I gave him all the technical knowledge I could think of.
He listened; he asked the occasional question.
"Is chemotherapy where your hair falls out?"
It can be. I explain why: how chemo kills fast-growing cells, and therefore kills cancer, but also affects healthy cells and in particular the ones that grow fast: hair; the lining of your stomach and gut. Hence the side effects: hair loss, diarrhoea, vomiting.
"Doesn't radiotherapy kill all the cells, even the healthy ones?"
It does. That's why the machine turns round, concentrating on the spot in the middle which will get blasted most. And that's why you have to keep coming back: you simply cannot have it all in one go.
I tell him how lucky I am, getting this now and not 20 or 30 years ago when treatment was far less sophisticated or successful; and getting it in my breast, where it can be found early enough.
"How did you find it? Did you just feel it?"
Yes, I did.
I told him everything, the whole story, from first feeling the lump and being so sure it was harmless, to waiting to hear how much of my breast has cancer.
My son won't ask questions, so I will just keep telling him what's happening, without being asked.
[Which is exactly what I've done, always. With all three of them. Test results, trips to the hospital, meetings with the consultant: I've reported everything as part of "this is what happened today". I have never sat them down again for a semi-formal conversation (too nerve racking for all of us!), but told them any news immediately, individually. Each child has needed a different approach, a different language. With my son, the approach has often been: talk to his back whilst he's sitting at the computer. Worked a treat, and he clearly thought so too... see my blog post on talking to teenagers about cancer]
To be continued...
Friday, 10 April 2015
114. A powerless Owl
At six o'clock this morning, I set off to Majorca with my husband and younger daughter. I have tried and failed to remember the last time we had a proper holiday. It must have been somewhere back in 2013.
Now, the last thing I want to do whilst splashing about in the Mediterranean is post blogs about One Year Ago, so yesterday I lined up four contributions for the week ahead (including this one) and pressed the "publish" button with a range of dates attached. I've only just discovered that such a feature exists on Blogger. If all goes well, they should arrive on your doorstep at the right time. If not, we'll have a bit of catching up to do when I get back.
My friends, I hope you enjoy last year's misery. If it all gets too much, just think of me lying on that beach with my newly sprouting hair. See you when we get back.
ONE YEAR AGO...
10th April 2014
I've emailed Owl's picture in the scanning room to a couple of friends who know Owl's story. One of them responds:
"Having a surrogate to be the patient sounds fascinating. Will you let him feel and say things that you usually wouldn't?"
I think about this, and the words that I tap into my iPhone are new to me, bringing fresh tears to my eyes. They flow easily these days.
"Owl wouldn't say boo to a goose and would never ask questions of the doctors and nurses. He lets everything happen to him and is completely powerless.
(Which doesn't upset him the way it would upset me, because he doesn't know any different.)
He is very frightened but accepting. He knows that he is loved unconditionally by my older daughter's Pig and my younger daughter's Bear, and that they love him not despite but because of his vulnerability.
And he knows that because of this love, it doesn't matter whether he lives of dies."
[That evening, I sat up until midnight to sew this friend an owl of her own. You can read about that here.]
To be continued...
Now, the last thing I want to do whilst splashing about in the Mediterranean is post blogs about One Year Ago, so yesterday I lined up four contributions for the week ahead (including this one) and pressed the "publish" button with a range of dates attached. I've only just discovered that such a feature exists on Blogger. If all goes well, they should arrive on your doorstep at the right time. If not, we'll have a bit of catching up to do when I get back.
My friends, I hope you enjoy last year's misery. If it all gets too much, just think of me lying on that beach with my newly sprouting hair. See you when we get back.
ONE YEAR AGO...
10th April 2014
I've emailed Owl's picture in the scanning room to a couple of friends who know Owl's story. One of them responds:
"Having a surrogate to be the patient sounds fascinating. Will you let him feel and say things that you usually wouldn't?"
I think about this, and the words that I tap into my iPhone are new to me, bringing fresh tears to my eyes. They flow easily these days.
"Owl wouldn't say boo to a goose and would never ask questions of the doctors and nurses. He lets everything happen to him and is completely powerless.
(Which doesn't upset him the way it would upset me, because he doesn't know any different.)
He is very frightened but accepting. He knows that he is loved unconditionally by my older daughter's Pig and my younger daughter's Bear, and that they love him not despite but because of his vulnerability.
And he knows that because of this love, it doesn't matter whether he lives of dies."
[That evening, I sat up until midnight to sew this friend an owl of her own. You can read about that here.]
To be continued...
Thursday, 9 April 2015
113. Owl makes an entry
ONE YEAR AGO... following my diary entry a couple of days ago, when I started dreaming up titles of my-cancer-story-turned-book.
9 April 2014
No, not How To Be A Cancer Patient after all, but When Owl Had Cancer.
Here's why. Time to tell the story of Owl...
[Which I've already done, so I won't repeat it again. If you want to follow the story properly, you could read this blog post - it's an almost verbatim transcription of that diary entry. It describes how Owl came about, as well as the MRI scan I had on that day. The diary entry ends thus...]
One day, who knows, I may tell Owl's story publicly. At least I've got his photograph and his MRI scan certificate to show for it.
Well, now we know. His story has indeed been told. Publicly.
9 April 2014
No, not How To Be A Cancer Patient after all, but When Owl Had Cancer.
Here's why. Time to tell the story of Owl...
[Which I've already done, so I won't repeat it again. If you want to follow the story properly, you could read this blog post - it's an almost verbatim transcription of that diary entry. It describes how Owl came about, as well as the MRI scan I had on that day. The diary entry ends thus...]
One day, who knows, I may tell Owl's story publicly. At least I've got his photograph and his MRI scan certificate to show for it.
Well, now we know. His story has indeed been told. Publicly.
 |
| MRI scan with Owl, 9th April 2014. What strikes me now about this photograph is how you really cannot tell that I've had a rather turbulent week... Which makes me wonder about all those people we meet in hospitals, on the tube, in the shops. What do we ever really know about someone else's life?? |
Monday, 6 April 2015
112. People's reaction to my cancer news
ONE YEAR AGO.
I used some of this diary entry in later blog posts, but let's have the whole lot here again anyway, because it shows just how quickly a brand new cancer patient deciphers other people's reactions... this was only four days post-diagnosis, after all.
6 April 2014
There are things about becoming a patient with a potentially life-threatening illness that I knew, but they still take me completely by surprise now that it's happening to me.
The ridiculously difficult transition from healthcare professional to patient, from successful multi-tasking-woman/mother/internationally-renowned-speaker-and-author to someone who is not in control.
There are things about other people's reactions, and how I feel about them, that are not surprising; things I knew - but now they shine with great clarity.
How wonderful it is that people do, indeed, react. How generous people are, and how much love and care they have.
How the one truly unhelpful thing is people giving advice, about how I could or should cope, what I should or shouldn't do. There is hardly any advice anyone can give that I haven't already thought of myself.
And then there is this one luminous insight into people's responses and reactions, something I've never heard about but which now seems so glaringly obvious.
So often, we hear that people worry about saying or doing the wrong thing. They worry about intruding.
My new insight is this...
It doesn't matter in the slightest what people say or do.
The only thing that separates the supportive from the unhelpful is their focus.
Is their focus on me, or is it on themselves? If the focus is on themselves, I will have to spend unwelcome energy on them.
This is where the unhelpful advisors sit. Either they are trying desperately to find something helpful to say, although there is really nothing that can help ("you mustn't think of it," "stay positive," "my mother had cancer 30 years ago and she's fine") or they can only think of what might possibly help THEM if they were in my situation, and believe that it should therefore help me ("I've got this really good counsellor, you should go...").
I don't mind this in itself, as long as they don't go on about it.
People with a focus on themselves are worrying about how they come across. I can sense how they are thinking about the effect my news has on them. Or perhaps there is something too self-conscious and insincere about their words. They might as well say: Look At Me, I Am Saying A Helpful Thing.
My luminous insight includes the realisation that patients (and I suspect it's the same for the bereaved) have a highly sensitive radar for insincerity. I can tell when people would actually rather not be talking to me. This has included, to my huge surprise and disappointment, the breastcare nurse.
[We've been there already. Let's cut that bit out and move swiftly along.]
One of the most helpful things someone has said to me (emailed, actually) was a colleague I barely know and rarely meet. He wrote that two of his friends had breast cancer ("both are now fine, by the way"): one worked all the way through her treatments; the other took all those treatment months off work entirely. The point of this story came with his final remark: "And they were both right."
Well, reading that email at my desk at work, the day after my diagnosis, brought on one of the many tearful moments of that day. What a wonderful way of saying that I need to find my own way of coping and listen to it, and whatever it is, it's OK.
The vast majority of people are helpful.
They may say exactly the same things as the unhelpful people, but they say it with their hearts open to me. When they say My mum/friend/colleague had breast cancer two/ten/thirty years ago and she is fine" they can then listen to my response. Which is this: my feeling so shaken is not because I worry that I won't live until I'm 80, but because my life and my perspective on my life has changed so completely.
When all they say is I'm shocked, and nothing else that could be construed as helpful, I feel better because I feel validated in my own shock, and because I am touched that they were open enough to contact me and tell me.
I can't help but feel excited about these new insights, and grateful despite the unwelcome circumstances. As I have already said to some of my friends, only half joking: Ha! There's an article in this somewhere...
[LATER]
Or a book!
I have caught myself dreaming up titles. Not How To Break Bad News this time, but How To Be A Cancer Patient...
How wonderful it is that people do, indeed, react. How generous people are, and how much love and care they have.
How the one truly unhelpful thing is people giving advice, about how I could or should cope, what I should or shouldn't do. There is hardly any advice anyone can give that I haven't already thought of myself.
And then there is this one luminous insight into people's responses and reactions, something I've never heard about but which now seems so glaringly obvious.
So often, we hear that people worry about saying or doing the wrong thing. They worry about intruding.
My new insight is this...
It doesn't matter in the slightest what people say or do.
The only thing that separates the supportive from the unhelpful is their focus.
Is their focus on me, or is it on themselves? If the focus is on themselves, I will have to spend unwelcome energy on them.
This is where the unhelpful advisors sit. Either they are trying desperately to find something helpful to say, although there is really nothing that can help ("you mustn't think of it," "stay positive," "my mother had cancer 30 years ago and she's fine") or they can only think of what might possibly help THEM if they were in my situation, and believe that it should therefore help me ("I've got this really good counsellor, you should go...").
I don't mind this in itself, as long as they don't go on about it.
People with a focus on themselves are worrying about how they come across. I can sense how they are thinking about the effect my news has on them. Or perhaps there is something too self-conscious and insincere about their words. They might as well say: Look At Me, I Am Saying A Helpful Thing.
My luminous insight includes the realisation that patients (and I suspect it's the same for the bereaved) have a highly sensitive radar for insincerity. I can tell when people would actually rather not be talking to me. This has included, to my huge surprise and disappointment, the breastcare nurse.
[We've been there already. Let's cut that bit out and move swiftly along.]
One of the most helpful things someone has said to me (emailed, actually) was a colleague I barely know and rarely meet. He wrote that two of his friends had breast cancer ("both are now fine, by the way"): one worked all the way through her treatments; the other took all those treatment months off work entirely. The point of this story came with his final remark: "And they were both right."
Well, reading that email at my desk at work, the day after my diagnosis, brought on one of the many tearful moments of that day. What a wonderful way of saying that I need to find my own way of coping and listen to it, and whatever it is, it's OK.
The vast majority of people are helpful.
They may say exactly the same things as the unhelpful people, but they say it with their hearts open to me. When they say My mum/friend/colleague had breast cancer two/ten/thirty years ago and she is fine" they can then listen to my response. Which is this: my feeling so shaken is not because I worry that I won't live until I'm 80, but because my life and my perspective on my life has changed so completely.
When all they say is I'm shocked, and nothing else that could be construed as helpful, I feel better because I feel validated in my own shock, and because I am touched that they were open enough to contact me and tell me.
I can't help but feel excited about these new insights, and grateful despite the unwelcome circumstances. As I have already said to some of my friends, only half joking: Ha! There's an article in this somewhere...
[LATER]
Or a book!
I have caught myself dreaming up titles. Not How To Break Bad News this time, but How To Be A Cancer Patient...
Sunday, 5 April 2015
111. Shaken
Happy Easter everyone.
Let's start with that, because it's a year later and I'm fine. Today I'll be singing hallelujahs into the church microphone and hide Easter eggs in the grass.
But I'll push on with the serialisation. It seems that sticking with the time frame is the best way of giving you an idea of what it was like (even though I didn't know then, but we all know now, about the happy ending, what with Easter eggs in the grass and everything).
Easter fell later last year. The 5th of April was just an ordinary Saturday made extraordinary by the turn of events.
ONE YEAR AGO
5 April 2014
I wake up in the morning and all is well, I feel rested, I feel fit and healthy - and isn't it quite nice to have an excuse to take things a bit easier in the weeks and months ahead? As far as excuses go, this one is pretty good.
But within an hour the weight in my stomach is back and I need to focus very hard in order to ignore the butterflies, the outbreaks of sweat, the over-conscious breathing that's just a bit too shallow, the loose stools.
I feel utterly, utterly shaken and I'm taken aback by the extent of it.
Perhaps my symptoms of nervousness (because it really does feel as if I'm about to step forward for a scary exam) is an expression of the ongoing uncertainty about the extent of my cancer.
But more than that, I think it's my body and mind protesting about this sudden change of perspective, the way my always-healthy body has deceived me (and if it can silently grow a cancer in my breast, what else could it grow, what else might not be what it seems?), the way I have suddenly and totally unexpectedly turned into a cancer patient.
My mind goes back to that night when I first felt the lump, only just a month ago. Possibilities flashed through my mind, but I never really believe that this could be anything but false alarm.
I am telling everyone.
I don't want this cancer diagnosis to be something to whisper about. I find that I want people to talk to me, ask me about it, not shy away. To make that happen, I need to help them by opening the door and being open myself. For a day or so I had thought that perhaps I would keep this quiet (the way I had kept all my initial investigations quiet) but I realised that, in any case, people will hear about it. It's better to tell them myself straight away.
I have come to the Buddhist temple in Milton Keynes for the afternoon.
I'm here to celebrate the Flower Festival, the birth of Buddha - but really, to sit and breathe in the profound spirituality of the temple, and to see my best friend and the resident nun.
The temple is buzzing with preparations when I arrive; I find the nun in the temple room itself. I have known her since I was 19 and she in her early 30s, quiet but with a very strong core, working with the other monks and nuns who had arrived in England from Japan to build the Peace Pagoda. Now, she runs the temple on her own, with many volunteers helping her.
We hugged, sat down, bowed to the Buddha and to each other, smiling broadly. Then her face turned compassionate. (My best friend must have told her.)
"I've written your name," she says, gesturing to the ancient Japanese writing on the shrine, surrounded by flowers and incense. "I've been making offerings every day."
It brings sudden tears to my eyes.
The nun has grown radiant in her older years. The monks and nuns live by example; they rarely preach or counsel, so when they do, it feels like a precious gift.
"This is what happens to human beings," she says. "Suffering. This is the path we must follow. You must be strong. It is also beautiful."
I know this, but it helps me so much, hearing it from her. Because I know that when she speaks of being strong, she doesn't mean it in the way many people do. She doesn't mean putting a brave face on it, keeping the show on the road.
When she speaks of our inevitable suffering, she isn't being a pessimist, but a realist. My task is to find a positive way of living with this reality.
When she speaks of our inevitable suffering, she isn't being a pessimist, but a realist. My task is to find a positive way of living with this reality.
She is talking of a profound acceptance that whatever happens to our bodies, our lives, our loves, doesn't change our core, our spirit.
An acceptance that life's changes and trials are part of life's journey, and our acceptance of this, living it without anger, but connecting with all other beings, is life's beauty and my strength.
To be continued...
 |
| The lovely nun (centre, holding my baby son in 1998; my best friend on the right) |
Saturday, 4 April 2015
110. The brand new cancer patient
ONE YEAR AGO
4 April 2014
Most of the time I am OK. I've had a good sleep.
But I cry when there is no reason to hold it together, no-one around I need to be strong for.
I sobbed and sobbed in my husband's arms that night when we first knew. This was big and we both knew it. Even when this turns out to be absolutely fine (not if - when), it is big.
There is the shock of finding myself a different person than I was a few days ago, because now I am a cancer patient.
There is the confrontation that we knew would need to come one day... we are both getting older and things will start going wrong. We will have to accept that, and learn that time - life - love - is more important than anything.
There is beauty and grace in it too, an almost overwhelming sense of gratitude even as I lay crying.
We talked afterwards about how I couldn't possibly cope with reconstructive surgery (if it comes to that), how I would much rather have the scars and the half-empty chest than an implant. Because for me, that is life: we grow older, our hair greys, our skin wrinkles, our breasts sag under the onslaught of childbearing and gravity, and it is good, even beautiful.
My husband agrees. The beauty, the grace, the gratitude that brings fresh tears to my eyes is the realisation that we can do this. We can grow old together, bear life's scars, and it doesn't diminish but deepens our love.
I feel incredibly blessed to have my family and more friends than I knew.
So I carry on during the day.
I spent yesterday at work, trying to finish the grant proposal and emailing colleagues, telling them exactly what the matter is and why I cannot now give that talk / go to Germany to run a workshop / organise that meeting / write those papers.
My manager told me to go home but I said no, I need to be here. People are ringing and texting me, so I don't want to sit at home. My older daughter is off school and she may pick something up before we tell her tonight.
I was fine sitting in my office. My colleague (who shares it) is on maternity leave so I could close the door and be alone. I could focus on simple work tasks. But at the end of the afternoon, when I thought I'd finished all my work on that grant proposal and could now go home to focus on family and on breathing, I suddenly remembered some forms I'd forgotten about. I needed to fill them in and get them signed off before I could submit the grant proposal. And suddenly, out of all proportion, I had to close and lock my door, sit down, put my arms on my desk and my head on my arms, and cry.
Same today: fine in the morning, of course I'll cope, everything will be fine. But then it suddenly hits me and I get butterflies in my stomach, my skin tingles, my hands are sweaty. The tears fight their way out.
I took my younger daughter swimming, as I always do on a Friday after school, and there I was, half-wet in the changing cubicle, unable to hold back those tears. I tried and tried but they wouldn't be stopped. Just as well I'd been swimming, it could explain the red eyes.
We planned to tell the girls at suppertime.
I was ridiculously nervous. That just confirmed how right it is to be open and honest at all times, because otherwise, when is a good time to tell? "Oh, by the way, we saw a doctor last month and now I have to have an operation tomorrow"?
So, when there was a lull in the girls' endless chatter, I said: "I suppose I'd better tell them my news."
Husband: "Yes, I think you'd better."
So off I went...
"It's not nice news. I've got to go into hospital after Easter to have an operation."
"An operation?"
"Yes, I found a lump in my breast and they have to take it out."
Older daughter, immediately: "Is it cancer?"
"Yes it is. But it's very small so they will be able to take it out."
Younger daughter: "I thought cancer spreads and then you die."
"Yes, that would happen if you left it in. That's why I have to have the operation, so they can take the cancer out. Then it can't spread and I won't die."
Older daughter: "So-and-so at school, her mum and dad both had cancer. Her mum got better and her dad died."
"Oh goodness, that's tough. I will get better, but there will be lots of hospital appointments and tests. I have to go for a scan on Wednesday, for example. I'm sad because I'll miss younger daughter's Lent reflection at school, but I have to go for the test."
My younger daughter was most unimpressed by this and told me in no uncertain terms that I must absolutely change the date of the scan, because (her words exactly) her event is far more important.
My husband tried to impress on her that actually, in the months ahead mum is most important, and they have to make sure that they don't make things difficult for her. But I think it's rather splendid that my younger daughter thinks her school event is more important than her mum's cancer. In her own universe, of course it is. It's better that way. I don't want her mum's illness to loom large in her life.
And my older daughter will be fine too, I hope. She and I can talk, she will ask me about it, and she knows that I will answer.
Continued tomorrow...
4 April 2014
Most of the time I am OK. I've had a good sleep.
But I cry when there is no reason to hold it together, no-one around I need to be strong for.
I sobbed and sobbed in my husband's arms that night when we first knew. This was big and we both knew it. Even when this turns out to be absolutely fine (not if - when), it is big.
There is the shock of finding myself a different person than I was a few days ago, because now I am a cancer patient.
There is the confrontation that we knew would need to come one day... we are both getting older and things will start going wrong. We will have to accept that, and learn that time - life - love - is more important than anything.
There is beauty and grace in it too, an almost overwhelming sense of gratitude even as I lay crying.
We talked afterwards about how I couldn't possibly cope with reconstructive surgery (if it comes to that), how I would much rather have the scars and the half-empty chest than an implant. Because for me, that is life: we grow older, our hair greys, our skin wrinkles, our breasts sag under the onslaught of childbearing and gravity, and it is good, even beautiful.
My husband agrees. The beauty, the grace, the gratitude that brings fresh tears to my eyes is the realisation that we can do this. We can grow old together, bear life's scars, and it doesn't diminish but deepens our love.
I feel incredibly blessed to have my family and more friends than I knew.
So I carry on during the day.
I spent yesterday at work, trying to finish the grant proposal and emailing colleagues, telling them exactly what the matter is and why I cannot now give that talk / go to Germany to run a workshop / organise that meeting / write those papers.
My manager told me to go home but I said no, I need to be here. People are ringing and texting me, so I don't want to sit at home. My older daughter is off school and she may pick something up before we tell her tonight.
I was fine sitting in my office. My colleague (who shares it) is on maternity leave so I could close the door and be alone. I could focus on simple work tasks. But at the end of the afternoon, when I thought I'd finished all my work on that grant proposal and could now go home to focus on family and on breathing, I suddenly remembered some forms I'd forgotten about. I needed to fill them in and get them signed off before I could submit the grant proposal. And suddenly, out of all proportion, I had to close and lock my door, sit down, put my arms on my desk and my head on my arms, and cry.
Same today: fine in the morning, of course I'll cope, everything will be fine. But then it suddenly hits me and I get butterflies in my stomach, my skin tingles, my hands are sweaty. The tears fight their way out.
I took my younger daughter swimming, as I always do on a Friday after school, and there I was, half-wet in the changing cubicle, unable to hold back those tears. I tried and tried but they wouldn't be stopped. Just as well I'd been swimming, it could explain the red eyes.
We planned to tell the girls at suppertime.
I was ridiculously nervous. That just confirmed how right it is to be open and honest at all times, because otherwise, when is a good time to tell? "Oh, by the way, we saw a doctor last month and now I have to have an operation tomorrow"?
So, when there was a lull in the girls' endless chatter, I said: "I suppose I'd better tell them my news."
Husband: "Yes, I think you'd better."
So off I went...
"It's not nice news. I've got to go into hospital after Easter to have an operation."
"An operation?"
"Yes, I found a lump in my breast and they have to take it out."
Older daughter, immediately: "Is it cancer?"
"Yes it is. But it's very small so they will be able to take it out."
Younger daughter: "I thought cancer spreads and then you die."
"Yes, that would happen if you left it in. That's why I have to have the operation, so they can take the cancer out. Then it can't spread and I won't die."
Older daughter: "So-and-so at school, her mum and dad both had cancer. Her mum got better and her dad died."
"Oh goodness, that's tough. I will get better, but there will be lots of hospital appointments and tests. I have to go for a scan on Wednesday, for example. I'm sad because I'll miss younger daughter's Lent reflection at school, but I have to go for the test."
My younger daughter was most unimpressed by this and told me in no uncertain terms that I must absolutely change the date of the scan, because (her words exactly) her event is far more important.
My husband tried to impress on her that actually, in the months ahead mum is most important, and they have to make sure that they don't make things difficult for her. But I think it's rather splendid that my younger daughter thinks her school event is more important than her mum's cancer. In her own universe, of course it is. It's better that way. I don't want her mum's illness to loom large in her life.
And my older daughter will be fine too, I hope. She and I can talk, she will ask me about it, and she knows that I will answer.
Continued tomorrow...
Thursday, 2 April 2015
109. Diagnosis Day
ONE YEAR AGO
2 April 2014
It is cancer.
So there we are: I am a cancer patient. And from henceforth, I will either be a cancer patient or a cancer survivor.
(Or dead, but we won't go there.)
I felt strangely calm when the consultant told us.
She did a good job, by the way, and we joked about that afterwards, when she remembered that How to break bad news is my area of expertise. I knew, anyway, as soon as the breast care nurse called my name. They only involve those nurses if it's cancer.
[I remember this vividly. We had barely sat down when the consultant said, without any further ado, "It is cancer." I was grateful that she didn't follow the standard guidance for breaking bad news, Find out how much the patient already knows or suspects; give a warning shot ("I'm afraid the results are not as good as we hoped") to prepare the patient for the fact that bad news is coming and to assess how much she wants to know... She came straight out with it. My warning shots had already happened, anyway, the week before, when she had made her "Whatever it is, we'll sort it out" remark; just a minute ago, when the breast care nurse came to get us. Alarm bells in my head: ring ring, bad news is on its way.
"What is your job again?" the consultant asked me almost immediately after telling us "It's cancer". As soon as I reminded her, she put her arms on her desk and put her head down. Oh no. But I reassured her, smiling (yes, smiling!), that she had done it well. It can't be easy for the professionals, to have a patient like me, watching them like a hawk, analysing every bit of the interaction, including my own responses and emotions - even, perhaps especially, at such highly charged moments.]
We were both matter-of-fact, asking questions, nodding, yes, I see, OK then.
Looking at dates, getting the diary out. "When will you do the operation?"
Perhaps the gravity of the situation hit me most strongly when the consultant turned to my husband with a brief explanation about "Your wife's cancer".
It isn't just that I have cancer. My husband now has a wife with cancer. Beneath our matter-of-fact behaviour, I could see in his face that this was no trifling matter.
I found the breast care nurse oddly lacking in empathy, but the consultant asked if I had expected this. And I answered truthfully: Actually, I'm not surprised. Last week I was shocked, when I had fully expected to go home after the tests and that would be that, like going for a routine smear test, never anything but fine. Just the thing you need to do to stay healthy, just ordinary screening.
[That was the only mention of the breast care nurse I made in my diary on diagnosis day. But what happened immediately after that 15 minute meeting with the consultant has stayed with me until this day, and when I think of it in all its vividness, I can feel it all over again. The shaking inside, the vulnerability and the emotion. I've blogged about it once I felt able to. I have always hesitated before blogging anything other than praise for individual members of staff, because of the strong possibility that someone will link names to my nameless cast of characters. But I've come to the conclusion, rightly or wrongly, that I cannot be honest about my experiences without describing the actions of health care staff, and their effect on me - and that this is important - especially if, as is the case here, the memory still has the power to upset me a year later. To save you reading through that entire blog post on How to be a healthcare professional, here is the relevant part for Diagnosis Day, posted on 23rd July, almost three months after the event.
This happened on diagnosis day. As mentioned, I was prepared for this bad news. In the surgeon’s office, I asked all the right questions. I listened to (and understood) all the answers. I was in practical mode: Right, now we know the score, let’s get on with this.
2 April 2014
It is cancer.
So there we are: I am a cancer patient. And from henceforth, I will either be a cancer patient or a cancer survivor.
(Or dead, but we won't go there.)
I felt strangely calm when the consultant told us.
She did a good job, by the way, and we joked about that afterwards, when she remembered that How to break bad news is my area of expertise. I knew, anyway, as soon as the breast care nurse called my name. They only involve those nurses if it's cancer.
[I remember this vividly. We had barely sat down when the consultant said, without any further ado, "It is cancer." I was grateful that she didn't follow the standard guidance for breaking bad news, Find out how much the patient already knows or suspects; give a warning shot ("I'm afraid the results are not as good as we hoped") to prepare the patient for the fact that bad news is coming and to assess how much she wants to know... She came straight out with it. My warning shots had already happened, anyway, the week before, when she had made her "Whatever it is, we'll sort it out" remark; just a minute ago, when the breast care nurse came to get us. Alarm bells in my head: ring ring, bad news is on its way.
"What is your job again?" the consultant asked me almost immediately after telling us "It's cancer". As soon as I reminded her, she put her arms on her desk and put her head down. Oh no. But I reassured her, smiling (yes, smiling!), that she had done it well. It can't be easy for the professionals, to have a patient like me, watching them like a hawk, analysing every bit of the interaction, including my own responses and emotions - even, perhaps especially, at such highly charged moments.]
We were both matter-of-fact, asking questions, nodding, yes, I see, OK then.
Looking at dates, getting the diary out. "When will you do the operation?"
Perhaps the gravity of the situation hit me most strongly when the consultant turned to my husband with a brief explanation about "Your wife's cancer".
It isn't just that I have cancer. My husband now has a wife with cancer. Beneath our matter-of-fact behaviour, I could see in his face that this was no trifling matter.
I found the breast care nurse oddly lacking in empathy, but the consultant asked if I had expected this. And I answered truthfully: Actually, I'm not surprised. Last week I was shocked, when I had fully expected to go home after the tests and that would be that, like going for a routine smear test, never anything but fine. Just the thing you need to do to stay healthy, just ordinary screening.
[That was the only mention of the breast care nurse I made in my diary on diagnosis day. But what happened immediately after that 15 minute meeting with the consultant has stayed with me until this day, and when I think of it in all its vividness, I can feel it all over again. The shaking inside, the vulnerability and the emotion. I've blogged about it once I felt able to. I have always hesitated before blogging anything other than praise for individual members of staff, because of the strong possibility that someone will link names to my nameless cast of characters. But I've come to the conclusion, rightly or wrongly, that I cannot be honest about my experiences without describing the actions of health care staff, and their effect on me - and that this is important - especially if, as is the case here, the memory still has the power to upset me a year later. To save you reading through that entire blog post on How to be a healthcare professional, here is the relevant part for Diagnosis Day, posted on 23rd July, almost three months after the event.
This happened on diagnosis day. As mentioned, I was prepared for this bad news. In the surgeon’s office, I asked all the right questions. I listened to (and understood) all the answers. I was in practical mode: Right, now we know the score, let’s get on with this.
But then the breast care nurse, who had sat in on the meeting with the surgeon, took me and my husband to another room next door. To support us in whatever way we needed, I’d imagined. Taking those few steps, I couldn’t hold back my tears.
All it needed, really, was a nurse to turn to me, look at me (and at my husband), and acknowledge those tears. Perhaps just say that this must be a huge shock to the system, and of course there are tears. Sit down and listen to me, or at least give me a few minutes to process the overwhelming new state of affairs. But above all, I needed someone to look at me with compassion.
But there was no acknowledgement of my tears. Instead, the nurse sat down at her desk, back turned to me, and handed me a fat folder that said Primary breast cancer resource pack. I took the hint and did not cry again. I swallowed back my tears and dragged my competent side out of my guts.
“My cancer bible!” the nurse said brightly, enthusiastically circling the relevant details. “Everything you need to know about your cancer is in here. And here is a leaflet for a breast cancer support centre. It’s not far from here! You can get complementary therapies there, talk to other cancer patients…”
I spluttered that I didn’t think I wanted to go to a cancer support centre, but was told that these centres are really very good. It sent me into must-protect-myself-from-attack mode. I’d only been a cancer patient for ten minutes, I didn't yet feel like a cancer patient, and the last thing I wanted was a leaflet on how to be a cancer patient.
What I wanted was someone asking me: How are you? and help me listen to my own answer.
Perhaps, if I’d been given that space (even for a few minutes), I might have been open to receiving information. But without it, the information felt like an assault.
I heeded the unspoken message: this is not a nurse I can be myself with. This is not a place where I can cry. And I have acted accordingly. I have mostly been cheerful, in control, efficient in my dealings with this nurse. I have kept things practical, never hinting at the fact that practical issues were the least of my problems. She probably had no idea that underneath, I often felt shaky and utterly vulnerable.
Now, back to the diary entry for Diagnosis Day.]
I have been coping well all day. Now that I know I am having surgery, I did some retail therapy, bought some loose fitting tops, something that slides easily over a painful arm and chest.
My husband said he would absolutely hate anything to do with hospitals and needles and pain, and it would worry him, but it doesn't worry me.
"What worries you?" he asked.
What worries me? The children worry me. How to keep them from worrying? How to make sure they have their mum?
We must tell them, because I am going to tell everyone. I must tell people why I won't be able to give those lectures in May.
We will tell the girls tomorrow. My son is going on a 10 day school trip tomorrow and I don't want him to know before he goes. He won't have anyone to talk to about it, and although he won't want to talk anyway, it may help him to see that life won't collapse around us, life will remain normal. We'll have to wait with telling the girls until he has gone.
I am now waiting for an MRI scan and that takes a while.
Alarmingly, the consultant said that although it feels and looks (on the ultrasound) like a small and early cancer, it might be bigger than it seems, and they can only tell from the MRI scan results. Only then can they decide whether a lumpectomy will suffice or whether it will need to be a mastectomy.
I am trying not to allow that possibility yet: the possibility that this is anything but an early and easily treatable cancer.
So I have been OK, telling friends, finishing some work (there's that grant proposal to be submitted next week), cooking supper, watching TV with my older daughter, reading to my younger daughter.
But the tears are pooling, I know they are.
I am trying not to look sideways, because in the corner of my eye is that question looking straight at me...
What if it isn't OK?
What if this cancer is a long term companion?
Worst of all: what if my babies have babies of their own, and I am not there for them?
Now, back to the diary entry for Diagnosis Day.]
I have been coping well all day. Now that I know I am having surgery, I did some retail therapy, bought some loose fitting tops, something that slides easily over a painful arm and chest.
My husband said he would absolutely hate anything to do with hospitals and needles and pain, and it would worry him, but it doesn't worry me.
"What worries you?" he asked.
What worries me? The children worry me. How to keep them from worrying? How to make sure they have their mum?
We must tell them, because I am going to tell everyone. I must tell people why I won't be able to give those lectures in May.
We will tell the girls tomorrow. My son is going on a 10 day school trip tomorrow and I don't want him to know before he goes. He won't have anyone to talk to about it, and although he won't want to talk anyway, it may help him to see that life won't collapse around us, life will remain normal. We'll have to wait with telling the girls until he has gone.
I am now waiting for an MRI scan and that takes a while.
Alarmingly, the consultant said that although it feels and looks (on the ultrasound) like a small and early cancer, it might be bigger than it seems, and they can only tell from the MRI scan results. Only then can they decide whether a lumpectomy will suffice or whether it will need to be a mastectomy.
I am trying not to allow that possibility yet: the possibility that this is anything but an early and easily treatable cancer.
So I have been OK, telling friends, finishing some work (there's that grant proposal to be submitted next week), cooking supper, watching TV with my older daughter, reading to my younger daughter.
But the tears are pooling, I know they are.
I am trying not to look sideways, because in the corner of my eye is that question looking straight at me...
What if it isn't OK?
What if this cancer is a long term companion?
Worst of all: what if my babies have babies of their own, and I am not there for them?
Wednesday, 1 April 2015
108. Waiting for the results
ONE YEAR AGO. "Come back next week," my consultant had said.
1 April 2014
So I've been waiting.
So I've been waiting.
I went to see mum, who has deteriorated. I sat at her bedside and pondered the beauty and fragility of life; how it is absolutely in the scheme of things that she weakens in old age, and perhaps how lucky she is (and we are) that her life fits into such a scheme.
But all the time there is this awareness. Some people get ill when they are younger. If I get cancer at the age of 50, then that is also in the scheme of things.
.JPG) |
| A lifetime ago... Visiting my mother at the end of March 2014, in-between test day and results day |
In the meantime, life is strangely on hold.
I cannot know what the results will be so I have tried, and mostly succeeded, to push it to the background. I have prepared as much as I can. I worked hard so that I can take time off if I fall apart, if the news is bad. I even took my work laptop to Holland. I had planned to take those few days off work but there's a grant proposal to submit, a week after my appointment with the consultant - and I am quite aware that there may be very good reasons why I won't be able to focus on it then, so I'm getting ahead.
I met up with the hospital's Lead Cancer Nurse yesterday (she was an advisor on one of my studies so I know her quite well), shamelessly bypassing the hospital systems. I needed to know the best and worst case scenarios. She was wonderful, understanding, compassionate, and (crucial for a healthcare professional like me) more than happy to take me through the ins and outs, the procedures, the possibilities, the technicalities. I found it helpful to hear that if the lump turns out to be benign, they'll still want to take it out. Now, at least, I know for certain that I am looking at surgery. A lumpectomy, minimum.
I have thought about who, if anyone, should come with me to that appointment.
We decided that it will have to be my husband, however much he dislikes medical things. This affects all five of us.
[Let's just stop and pause there for a moment. Looking back, I simply cannot believe that I contemplated, even for a moment, going to that appointment to get the biopsy results by myself.
"Will you take anyone with you next week?" my manager had asked when I sat and sobbed in her chair, straight after all those tests.
"I don't think so," I answered in all seriousness.
I think that was because I thought (naively, I now see) that this was just something for me to deal with - why burden others? Plus, I could just about cope with my own emotions; the last thing I wanted, I thought, was to sit there worrying about someone else's as well. I certainly didn't want to trouble my husband.
Perhaps I should take a friend? But what kind of friend? Someone who could hear bad news without falling apart? But how about all that waiting? I would just worry about them being bored or wasting their time in the waiting room.
The Lead Cancer Nurse had also advised me to bring someone along, partly because if it's a cancer diagnosis, patients forget about 90% of what the doctors tell them. But I was absolutely sure that wouldn't apply to me; I'd remember every word. (And I did turn out to be right about that. I've always understood and remembered every explanation, every detail the doctors have given me.)
"Well, I would really think about it," my manager said gently. "Perhaps your husband should come with you. Having to ring people up to tell them your results is not easy either."
She was right again. Of course. I cannot now imagine having gone to such appointments without my husband. Not only did he turn out to be my rock; it was also pretty obvious, as soon as the word "cancer" was uttered in the doctor's office, that the bad news wasn't mine alone.
But back to the diary, because at the time of writing, I didn't know any of this.]
So far, I have been alright.
But today I suddenly feel incredibly nervous, a lurching stomach, protesting bowels.
Perhaps not alright after all. So that's why I am making a start writing this diary, ahead of tomorrow's results. And if tomorrow brings the news that my lump is benign, I can always use it for research, turning this into a notebook of hospital field notes. I have never spent a night in hospital, ever, so that 24-hour admission to get a lump removed could be a good opportunity for some participant observation.
Because I am not a patient. Not me. I won't be any good at it.
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