5. Important Questions for the Oncologist

This is the fifth post of a series which is introduced here.

February 2017

 

Brain meme

The oncologist examined me. He was concerned about lumps at the side of my breast and sent me off for another scan – it was clear. Phew!

I was asked how I felt about a mastectomy. ‘Because,’ the oncologist said, ‘surgery is the best treatment of cancer.’ This upset and confused me because I thought I’d already been through this stuff.

‘My consultant told me that I ought to have chemotherapy first, to shrink the tumour. I don’t understand why you’re now saying surgery is the best option?’

‘I’m going to go and call your consultant,’ the oncologist said, getting up from his chair.

He left me and the breast care specialist nurse alone in the room. I was feeling pretty annoyed at the seeming lack of communication somewhere along the line – not cool when crucial decisions were being made about my life. My stomach was in knots. I told the nurse I wasn’t happy, and she told me not to worry…easier said than done!

The nurse used the opportunity to give me a few leaflets to take home that explained the chemotherapy drugs I’d be given and their side effects – because although the oncologist would be talking me through it all, it would be a lot to remember. ‘You’ll find that your periods will probably stop altogether because of the chemotherapy,’ she said. I liked the sound of that, but I did have a question.

‘I have a Mirena coil in. Should I have it removed?’ I asked.

‘Yes, the type of tumour you have is hormone reactive so it’s best you make an appointment to have it taken out.’ I could tell by the nurse’s face there was more to come. I was right. ‘It’s likely that you’ll get early menopause. Not right away, but when you have to start taking the drug Tamoxifen, but that won’t be till after your radiotherapy.’ My poor brain was racing with the info overload. And I didn’t get the chance to complain LOUDLY about the menopause thing because at that moment the oncologist reappeared.

Leaflet on what to do if you get any of the listed symptoms after treatment.

‘Either way, because of your young age you would be getting chemotherapy anyway. The advantage of having the chemotherapy first is that it will destroy any rogue cells,’ he said, reiterating what my consultant had already told me but it was enough to rev my brain into paranoid mode again, thinking the cancer cells had already spread. The oncologist talked about a lot of important stuff. It was hard to concentrate.

The pros and cons of chemotherapy had been given. Now the ‘cycle’ was explained:

‘Two days before your chemotherapy is given you will need to have your bloods taken by a nurse at your usual Doctors Surgery.  You’ll come here to Clinic the following day to be told the result of the blood test and whether or not treatment can go ahead. If all is well chemotherapy will be given the next day. In the first three sessions you will be given drugs we call FEC-T; the last three sessions will be a drug called Docetaxel. Each of your chemotherapy cycles will take twenty-one days. Treatment day is classed as day one and the drug infusion will take about three hours to administer. Chemotherapy will compromise your immune system which will be at its weakest up until day fifteen of your cycle so, I’m not saying you should wrap yourself up in cotton wool, but be careful not to mix with anyone who has a cold or flu,’ the oncologist said…talk about a flaming baptism of fire. Paul was loaded with a snotty cold and Leon had been complaining about a sore throat…‘by the final week of the cycle your blood cells will have begun to recover sufficiently and you should feel a bit more like yourself. Do you have any questions?’

‘Yes,’ I nodded. ‘Am I still gonna be able to do workouts and run, and am I still gonna be able to go up mountains?’ You know how a dog can sometimes cock its head and look at you with an expression of wtf? Well, that’s how the oncologist looked at me.

He said he’d never heard of anyone going up mountains during treatment before. The nurse was nodding and added that although I might feel up to trying a run I may find it a struggle, but I could give it a go if I really wanted as long as I listen to my body and stop if it got too much…it wasn’t exactly encouraging.

So that was it. With the t’s crossed and i’s dotted I was told that my first chemotherapy session would be in two days…two days!

What a rotten appointment – a real roller coaster of medical scares; I left hospital feeling thoroughly shaken up about the side effects of treatment. But worse than all that was leaving with the impression that I would not be able to continue to do the things I love…the things that keep me sane…no running, no mountains. No way.

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My oldest son, Marcus, amused by my attitude, made this meme. Me on Cul Beag (after fourth chemotherapy).

The medical staff have to tell you the worst that can happen, but it is important to understand that the worst will probably NOT happen. At this point I had not grasped that fact.

Next: Chemotherapy Round One…Ting-Ting!

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4.Telling my Teens their Mum has Cancer

This is the fourth post of a series which is introduced here.

February 2017

Leaving hospital with my diagnosis – and most of the cold hard facts about it – helped me to reconcile the chaos of my initial thoughts: the ones where I had immediately decided I was a goner, just like Mum.

Three weeks had also passed. This was enough time for me to have processed the shock and reflect that actually I was in the strongest position emotionally to be facing this new struggle. If I’d got cancer before I’d resolved all the inner turmoil of losing my mum then who knows what state I’d have ended up in…

my mind

I sat on the stairs in my hallway, as I often do – actually, I’m lying, I’m usually sitting on the toilet, door wide open, staring down at the shelf on the hall landing – looking at, and talking to, the photograph of my grandparents. (They’re sitting on a bench outside the chapel at Fort George, my mum’s just got married and they’re smiling at me as I take their photograph.) So I tell them, ‘I have breast cancer. And I have a treatment plan that involves chemotherapy first. I can do this…whatever happens.’ Their faces smiling back at me fill me with courage. I miss them, and I feel sad because neither they nor my mother are here anymore. But I’m also grateful that they won’t have to see me go through what Mum went through. I’m glad I won’t break their hearts or cause them worry over me.

But I do have to do the next hardest thing. I have to tell my two sons.

Breaking the news to them had been weighing heavily on my mind. After all, I knew first-hand what an unthinkably huge, happiness destroying, security shattering bomb I was about to drop. I had been eighteen when Mum had told me she had breast cancer, and I hadn’t handled it at all well. I’d gone right off the rails. My two boys are now at a similar age; eighteen and sixteen, and I really didn’t want to have to tell them. I wanted to conceal and absorb the horrible truth for them for as long as I could, but having to have chemotherapy first would make that impossible. I could just have said I was unwell, but there would be no way getting away from the inevitable baldness.

My eldest son, Marcus, was studying on a course, a hundred miles away, at Aberdeen University. Rather than cause alarm and summon him back for the weekend I thought it best to video call. My belly had butterflies as the dial tone sounded. He answered, but because of how he had his phone positioned I found myself telling the news to the magnolia ceiling of his student accommodation. But Marcus was there, listening, and he seemed to take what I said on the chin. ‘Oh, I suppose the least I can do is let you see my face,’ he said. I felt temporarily reassured and was proud of his maturity. He told me he’d come home the following weekend. He said he wanted a little time on his own to process everything. Despite his calm reaction I couldn’t help but worry that between now and then he would fret quietly to himself. I would only feel happier when I could see him in the flesh.

Shortly after the call to Marcus son number two arrived in from school. My stomach churned.

Leon, you see, is very much like me: bold on the outside and hides any inner turbulence with, at times, really annoying in-your-face humour. He takes things to straight to the heart. Telling him was going to kill me. I’d already shed a lot of tears over the past few weeks as I imagined the impact this moment would have. I hated myself for what I was about to put him through.

As expected my poor boy was difficult to console. All I could do was hug and reassure him that everything would be all right. ‘We’ll get through this…one way or another,’ I said, echoing what my own Mum had once said to me. But my heart was heavy for having burdened him with this grief.

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View from the kitchen window where I’d stand crying as I watched Leon disappear beyond the gate and off to school – oblivious to the bombshell I was about to drop.

Two boys both of very different character: one who seems to take everything in his stride and the other who wears his heart on his sleeve. But my love and worry for them both is the same.

As a parent all I’ve ever wanted to do is protect my kids from upsetting things the world and life throw in their path. I’ve now discovered that I can’t always protect my children from all of life’s nasties, but I can be here for them both whenever they need me.

Next: Important Questions for the Oncologist

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3. Diagnosis

This is the third post of a series which is introduced here.

February 2017

On the car journey to hospital my boyfriend and I had been laughing at ourselves as he shoulder shimmied stiffly and I shrieked along to the sound of the Bee Gee’s.

We weren’t laughing now.

Lots of people hear the word ‘cancer’ and recoil. That two-syllable word has a lot of power. The consultant used the word, ‘cancer,’ but I heard the words, ‘death sentence.’

What can I say? I was back to freaking out. I was still in catastrophising mode.

I was glad Paul was sitting next to me. I knew he’d be my brain and take in all the information I would undoubtedly not be able to retain. My head was already swimming, but I did take in the most important stuff…the consultant said the type of cancer I have is one of the most common. The type I have is like a double-edged sword; it’s a grade 3, the most aggressive form and it carries the highest risk of recurrence. But it also responds very well to chemotherapy treatment…I whimpered internally: Mum’s cancer had been aggressive, and he said chemotherapy!

‘Do I have to have chemotherapy?…Can’t you just cut my breast off?…I mean, what’s a lump of flesh compared to a life?…I don’t mind!’ I said.  Barely drawing breath I added, ‘and anyway, do you know how long it has taken me to grow my hair this long?’ I tugged at my hair and laughed. ‘If I have chemotherapy it will all come out. That sucks!’ The consultant laughed with me, but affirmed that chemotherapy first was my best option.

‘Good results from the chemotherapy should shrink the tumour. This way more breast tissue can be saved during surgery. If the tumour was operated on now, because of its position, the breast would likely collapse in on itself,’ explained the consultant.

‘She could get breast implants though,’ said Paul, ‘nice, big ones.’ We all laughed and then the consultant continued talking while my mind whirred off again at a million miles an hour, until I interrupted again.

‘My Mum had had a lumpectomy and then radiotherapy. Her tumour was smaller, more operable – yet it had still spread to her lymph nodes. My lump’s obviously a colossal fucker if it needs shrunk, does that mean it’s bound to have already spread?’

‘Do you want to see it on the screen?’ the consultant asked. I looked at him like he’d just offered me a plate of shit on toast and a pint of piss.

‘No,’ I said, my head shrinking into my neck.

Big boobs in Bulgaria
Back in the old days – when I clearly drank more than was good for me – I’d also fancied the idea of bigger boobs. Lol.

I did not want to see ‘it.’  I just wanted to know if I was going to die and I wanted to know more about the treatment that he said I should consider.

‘I want to see it,’ said Paul. I shot him my best withering look. The computer screen remained where it was.

‘There was no evidence of the cancer in your lymph gland. I’m hopeful that I’ll cure you and you’ll die of something else,’ the consultant said, chuckling along, ‘I’m going to enjoy looking after you.’

So the proposed plan was this: six sessions of chemotherapy to be given over eighteen weeks; each session lasting about two and a half to three hours. ‘If’ all went accordingly I could expect an operation at the end of July or August – when surgery would reveal if there was any further spread. Radiotherapy would follow. ‘In other words,’ the consultant said, ‘it’s going to be tough year. You’ll get an appointment to see the oncologist next week and he’ll take you through the pros and cons of chemotherapy.’

I had to return to the small room where I’d had the ultrasound and, under local anaesthetic, a titanium marker was inserted into my breast: if the chemotherapy worked well it had the potential to reduce the tumour to a size so small as to be undetectable. The marker would therefore indicate where surgery was required.

I left hospital with facts. Being armed with those facts was a small step in the right direction.

Next: Telling my Teens their Mum has Cancer

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2. A Week from Hell and then Another

This is the second post in a series which is introduced here.

February 2017         

 ‘Wee, sleekit, cow’rin, tim’rous, beastie, O, what a panic’s in thy breastie!’  

It was Wednesday. The morning after the night my boyfriend Paul felt the lump in my breast I called the doctor. I was seen at the surgery within the hour. I was examined. The doctor felt the breast and muttered, ‘Mm hmm, I see.’ My mind was distracted because I was embarrassed that this stranger was studying and manhandling my naked flesh, but it still caught hold of those few telling words. The doctor told me that he thought perhaps he was feeling a cluster of cysts, but to be sure, and for my peace of mind, he would refer me to the breast clinic at hospital in Inverness. ‘Has everything else been okay with you otherwise?’ he asked. I told him I’d been pretty stressed and he said, ‘Well, let us take care of this worry for you.’

Instead of leaving the surgery feeling reassured, I was ill at ease. And by teatime I was howling my eyes out, convinced I had cancer.

By Friday I had received the referral appointment to attend the breast clinic for the following Wednesday. I felt grateful to be getting seen so soon – yet that week seemed so long.

I carried on going to work. Carried on smiling, and bore the strain of putting on the pretence.

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The Distillery gardens where I work.

The next Wednesday Paul took me to hospital.

First up was a chat with the consultant, followed by an examination. He said what the GP had said, ‘hopefully what I’m feeling is just a cluster of cysts. I felt a fleeting wave of relief – because these guys know what they’re talking about. And then he added, ‘I’ll send you off for a mammogram and an ultra sound and see you back here after.’

I stood undressed to the waist in front of a tall machine. A nurse positioned my breast, sandwiching it in between clear Perspex plates. As she took the mammogram bad memories of my mum dying crashed into my head space. The relief I’d felt just minutes before evaporated.

Returning to the busy waiting room I scanned around the faces I could see. Some of the younger women were fidgeting with phones and others were flicking distractedly through magazines. I couldn’t help but wonder which of us were going to be the unlucky ones. I really didn’t want it to be me.

It wasn’t long till I was called in for the ultra sound. I was asked to lie back on the bed and a thin, white sheet of paper covered my upper half till the female doctor came in. After a brief introduction she removed the paper and squirted gel onto my right breast. The light went out in the room and she began to roll the small transducer over my skin. She took little time in telling me straight, ‘I can see five calcifications attached to a lesion that looks suspicious. I need to speak to your consultant.’ With that she left the room

Fear gripped my heart whose beat pounded noisily in my head. I clumsily pulled on my t-shirt and walked with the nurse away from the small room at the end of the long, narrow corridor. ‘I want to see my boyfriend,’ I said, biting at my bottom lip to stop the tears from coming. Ushering me into a side room the nurse said she’d fetch him.

Paul came into the room and I crashed into his arms sobbing convulsively. I tried to get words out from my mouth, but my knees buckled beneath me and I sank backwards into a fortunately positioned chair. ‘I’m sorry,’ I kept saying over and over. I couldn’t bring myself to look him in the face; I was afraid to see fear reflecting back at me. A breast care nurse knocked on the door and entered the room, ‘to take a few details.’ My mind raced…they wouldn’t want details if they didn’t think the ‘suspicious lesion’ was cancer. The slivers of hope I’d been clinging to, that this was all just a misunderstanding, were falling away and the horrible truth was thumping home.

The consultant was ready to see me.

‘I’m sorry I can’t send you off this time telling you it’s nothing to worry about,’ he said, ‘I’ll need to take a biopsy from the breast to find out exactly what it is we are dealing with.’ All I felt was my heart thudding in my head. Up I got and walked to the surgical bed, laying myself down on it for one last time that day.

My breast was anesthetised and I was given warning before this needle thing was fired into it, four times, to grab samples of tissue. I didn’t look at it, but it made a punching sound like one of Paul’s nail guns – OK that’s a bit dramatic, maybe it was more like a stapler or a paper punch. The procedure wasn’t traumatic in itself; it was just the whole situation – a situation that was totally outwith my control. ‘Okay, Sarah, that’s you done. We’ll get these samples sent off. The results should be back next week. There will be a board meeting to discuss a treatment plan for you and then we’ll get you back here to advise and talk you through it.’

It was another week of waiting. And they were the darkest of days with the darkest of thoughts. Worrying about having to tell my children was the heaviest of burdens. Thinking about my mum and everything she had been through tormented me. My mind was a scattery chaos that dragged me on a journey to hell and back several times a day: it was exhausting. Paul and I bore that weighty load for an extra nine days.

When I was called back to hospital it was me that drove; I guess my small way of taking back a little control. Paul said he was nervous – about whether we’d survive the journey – I laughed at his dig about my driving and blasted the Bee Gee’s, ‘Staying Alive.’

Stayin' Alive 3
Singing and laughing on the way to hospital.

There was no escaping the emotional ups and downs of those first two weeks. I’d tried to distract myself by keeping busy, and that was the best I could do.

Next: Diagnosis

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1. Discovering the Lump

This is the first post in a series which is introduced here.

January 2017

Mel and I hadn’t had a proper catch-up in ages so at the end of January 2017 it was great to be getting out for a full day out at Bridge of Orchy in the West Highlands. Just an easy plod up Beinn Mhanach to break in the legs after a month of inaction. I had been unwell, again, over Christmas and New Year with yet another UTI that had put me in hospital on Christmas Eve’s morning. So it felt extra awesome to be out on the hills with mountain air against my face once more.

beinn mhanach
A different kind of big, solid lump. 

Mel and I chatted about everything as we tramped up the mountainside over clumps of water logged grasses. For the majority of the day we were surrounded by thick mists, but the weather didn’t matter. Our day wasn’t about the views; it was about the exercise and having a good old chin wag.

‘Being on the mountains makes me feel good about life,’ I told her, ‘but there is something worrying me…I found a lump in my breast last week.’ She just looked at me.

‘Have you been to the doctor?…You’ve had lumps before so this one will probably be okay too?’ she said. I sensed the concern through her feigned confidence.

‘Yeah, I once went to the doctors with one lump and came out with several more.’ I said the words with a laugh, but inside I felt sick.

Sick because our exchange exactly echoed the very conversation my mother had had with me so many years ago, stirring bad memories that unsettled me.

‘I thought I’d give it another week, see if I notice a change. But this one feels different this time, it’s totally solid. I’m just not sure,’ I said. Mel and I tramped on up in silence to the exposed top. The mention of the lump in my breast was not discussed again for the rest of that day.

She was the first person I had told. I thought saying the words out loud, or getting a reassuring response from my friend, would quell the nagging fear. It did not.

At home, in the shower, I pushed my fingers into my breast tissue again. I raged internally at myself, wondering how I could have missed it till now. As the hot, steamy water trickled over me I could feel my heart thumping out its same steady rhythm, but it knew the lump was not good. ‘If it is cancer,’ I whispered under my breath, ‘the timing is irony at its absolute fucking best.’

It was irony to potentially have the same cancer my Mum had; irony that I should discover the lump at age forty-four years and eighty-one days old – one day older than the age she was when she died. And irony because it was only now; after a strange and lonely, grief filled adulthood; after I’d managed to piece together the broken threads of my life; and when I’d finally found peace within, that I go get cancer. It all felt so utterly unfair. ‘Please let me be wrong. Please not now,’ I whispered.

After putting it off for a couple more days – perhaps in the hope that the lump would have somehow miraculously disappeared – I told my boyfriend about it and asked if he’d have a feel. He mumbled agreement when his fingertips pressed against the hardness of my flesh. He suggested I call the doctor first thing in the morning.

Neither of us said another word.  We climbed into bed and lay in the darkness with our backs turned and eyes wide open, our imaginations running wild.

Next: A Week from Hell and then Another

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