Tsunamis and ripples

When I was in the consulting room this week, there was a stack of patient files on the consultant’s desk. Some fairly thin (like mine), others very thick. It struck me that each file represents a person, a story, their treatment, their hopes and fears. It also represents all the lives that their cancer touches. How a diagnosis creates a tsumani and then hundreds and thousands of waves and ripples as the news touches family, friends, colleagues, acquaintances, friends of friends.

As soon as I had my diagnosis, I knew I wanted to be very open about my cancer. Sharing my news is part of the acceptance process for me, and also a way to garner the support I know I will need, and need right now. But an unwelcome shock for everyone I tell. The support, love and kindness has been utterly overwhelming. I have never had so many hugs, felt so much love. What a truly wonderful bunch of people I have in my life.

I love a plan

I saw my professor today to go through my results and confirm what happens next. After Monday’s events, I felt I was already pretty well briefed.

The consulting room seems to be a bit chaotic today with lots of coming and going, phone calls, a variety of nurses, a new set of medical students and a failing printer. The students examine me – I’m doing my bit for their training.

We all peer at the MRI images of my dangling breasts on the professor’s computer screen. Wow, my tumour is this little round, solid white ball. That’s the pesky bugger that’s caused all this trouble. And I can see the shadow that is the “something” but is just bruising (my poor boob).

Professor Vaidya is incredibly reassuring about that white shadow.

I’ve been booked in for surgery on Tuesday 24th, next week. It will be a wide local excision (lumpectomy) with sentinel node biopsy. All the scans so far show my lymph nodes as clear of cancer cells, but the sentinel node biopsy is a routine and important check. If they find anything whilst I’m in theatre, they will cut out the affected lymph nodes.

I’m hugely grateful I do not need a mastectomy.

We also discussed my treatment. Definitely radiotherapy, and I chose to be part of the Targit B trial. Maybe chemotherapy, maybe hormone therapy, but this will not be confirmed until we have the full biopsy results from my tumour and lymph node. So, there’s more of that limbo-land waiting to come, but right now I’m focussed on step one of the plan, which is to cut the cancer out.

 

Getting a cancer diagnosis launches you on to this incredibly steep learning curve, and for me information is power. I can feel in control if I understand what is happening. So, I read all the material I’m given and use the websites recommended to me. Beware, there is so much old and/or wrong information on the internet. You can scare the pants off yourself and become hugely confused. I think the NHS and charity sites are the most trustworthy.

At this stage my cancer has been diagnosed as a small Invasive Duct Cancer, which is the most common type (in my naivety, I never knew there are so many types of breast cancer). It is grade 3, ER7, PR0, Her2neg. This stuff matters because it tells us how the cancer is growing, what feeds it and so how to treat it to prevent a recurrence. In my case, it looks to be fast growing (grade 3) and oestrogen (ER7) feeds it. So, hormone therapy (eg tamoxifen)  is highly likely, and maybe chemotherapy too because it is grade 3. But we need the full pathology results before diagnosis and treatment can be confirmed.

 

So this is what panic feels like

At work this morning, about 10.45, my breast care nurse calls. Oh good, I think, I was going to call to ask about this Wednesday’s appointment anyway. What she then said knocked me sideways.

“Can you come in to the hospital today? We discussed your MRI results at the MDT meeting this morning and you need another ultrasound scan. We’ve found something on your MRI.”

Adrenaline instantly flooded through me. One of my colleagues looked at me with shock, she must have seen my reaction. I gathered up my things in a blind panic, I knew my team would see me suddenly leaving, but I had to get to the hospital straightaway. Fortunately it had poured with rain that morning, so I had driven and not cycled to work.

My thoughts kept going to a bad place, I kept pulling them back to a calm place.

“Oh my God, they found something!”

“It’ll be fine”

“Concentrate on driving”

“Oh my God, they found something!”

“It’ll be fine”

“Concentrate on driving”

At the clinic, I’m given a referral note for the Imaging Department. I go to Imaging and another wait with another pizza bleeper. I read the referral note as I wait. It instructs a scan of my right side. Phew. Whatever the “something” is, it’s not in my left breast.

The doctor performs the ultrasound scan of my right breast, and reassures me he thinks it is just internal bruising from the biopsy (I knew it had hurt!).

But I have to see one of the consultants to confirm. Another wait. His view is that it is bruising, and not anything suspicious. I then ask for more details of my case, and he confirms I will only need a lumpectomy and sentinel node biopsy at this stage.

This evening I am utterly spent. Emotionally exhausted. It’s the shock that is so draining – when I can prepare for an appointment, prepare to hear difficult news, it is so much easier to manage. But this is good news, this is great news, my MRI has shown nothing more. Now that’s worth celebrating (if I had the energy).

Kindness of strangers

It heartens me that when you share your vulnerability, it breaks down social barriers and builds connections.

I went to Waitrose today to buy tea, coffee, pasta, baked beans, loo roll and all those goods I thought it would be useful to have in the coming weeks. The cashiers are always friendly at my Waitrose, and today, on seeing the vast pile of cat food and cat litter trundling down the conveyor belt, my cashier asked me how many cats I have.  Oh, just the one, I explained, but I’ll be in hospital this week so I’m stocking up. There was an immediate kindness in her eyes, she reached across to hold my hand, and she asked,

“Are you ok?”

“I was diagnosed with breast cancer last week” It is still helping to say that, helping to make it real.

She told me the story of her own cancer treatment 15 yrs ago, and joked how her consultant recognises her now, not by her face, but by her scar. She was reassuring and kind. These small moments are so wonderful, I treasure every one of them.

Gratitude

Today I did one of my favourite things and went for a walk on Hampstead Heath. I’ve seen this bridge so many times (it’s in the grounds of Kenwood House) and for the first time I realised it’s a fake. A cosmetic bridge; looks good but takes you nowhere.

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Being outside, and walking, cycling or running has always been when I do some of my best thinking. As I walked over Parliament Hill this morning, I had a really moment of gratitude. If I was ever to get cancer, this time in my life could not be better. I am physically fit and strong, my emotional resilience is high, I have wonderful friends, family and colleagues, my career is in a good place, I have a beautiful home and live in a place I adore. I love the life I live. I’m as well placed as I ever could be to face this cancer, face this chapter.

And unlike the bridge, I want this chapter to take me somewhere. No idea where, but I’m up for growing, learning and changing.
Then this afternoon, one of my other favourite things, a get together with my girlfriends. We went to see David Bowie’s Lazarus. What the **** was that all about? Cleverly staged, wonderful songs, great performances, but we all concluded only real Bowie fans would get it.
We talked over dinner. I think I rather hogged the conversation, but my chums indulged me. Talk turned to how breast cancer is not so unusual, currently one in eight women will be diagnosed with it . I joked that I was happy to “take one for the team”. Humour is definitely an important part of the armoury.

Lionel keeps me company

Today I had my MRI scan, a fairly routine part of the diagnostic tests to see if there was more cancer than the lump in my right breast.

When my consultant told me I’d need an MRI the panic set in. I’d had one in 2013 and it was an awful experience. On a skiing holiday I had a bad fall and really wrenched my right shoulder. It was the first day of the holiday, and there were a couple of doctors in my group who assured me it was a muscular strain, so I dosed up on ibuprofen and continued skiing all week. I got home, and still couldn’t raise my arm to clean my teeth so I got it investigated, which involved an x-ray and MRI as they suspected I’d torn ligaments or tendons. Turns out I’d broken my arm.

I was not prepared for that first MRI in 2013. I didn’t realise I’d be in the scanning tube with the banging magnets, akin to the sound of roadworks, for 45 minutes. It’s sensory overload and the adrenaline kicks in and I learnt what claustrophobia is.

So, I prepared for today’s MRI. Practised mindfulness. Practised controlling my breathing. Fortunately it’s a shorter tube, and you’re only in it for 25 minutes. And you’re face down, which, bizarrely, I found easier.

The reality was surreal and hilarious. The radiographer was kind and patient. He put a cannula in my arm for the intravenous dye which will flood in to my breasts half way through the MRI. He then realised I still had my gown on, so had to take the cannula out so I could take the gown off. I suspect I had distracted him with my nervous jabbering.

Suitably hooked up, I then lie face down and drop my boobs in to a raised tray with two holes in it, my arms overhead and my face resting in one of those cushions like you get on massage tables. The radiographer pops some headphones on me and leaves the room.

Then the whole table clunks and starts moving backwards in to the tube, my boobs dangle in an undignified manner, the magnets start their banging, and over the headphones comes Lionel Richie singing You Are My Destiny. I nearly burst out laughing.

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On the way back to work I walked through Green Park to get my head straight. I was so pleased with how I got through the MRI, but the adrenaline was still coursing through me.  It was cold, and the park looked wonderful.

 

D day

Today was Diagnosis Day. Today I learned what I feared, but what I expected. I have breast cancer. Typing that is hard, saying it is worse.

The clinic at The Whittington was much busier than before. There was also a flipping tube strike today, so appointments were running late. Friends and family had offered to join me, but I’d had nearly two weeks for the shock of 28th December to subside and I knew I’d prefer to go to the appointment on my own. I’ve done some research and had my notebook ready to take notes, and all my questions prepared. Professional Alison kicked in.

I entered a surreal new world. In the busy clinic, there were lots of women, many wearing  turbans, hats and wigs. The atmosphere was palpable. Anxiety. Fear. Panic. How many other women there were getting their results today?
Bargain Hunt played on the wall mounted television as I waited. Not much of a distraction, but suitably bland and uncontentious.

In between all of this it becomes clear I will miss a critical meeting at work. Fortunately, my amazing work colleagues are all set to pick up for me. I text and email. Life goes on.

I met my consultant, Professor Vaidya. He told me in a straightforward way that I have breast cancer. I didn’t need to write that down. I’d remember that.

Then he’s talking about radiotherapy, and a new clinical trial, and surgery, and I need another ultrasound to check my lymph nodes today. So off I go to Imaging to get my pizza bleeper and wait for another scan.

The doctor shows me on the screen what he can see – I’m not at all squeamish (comes from having a mum who was a nurse) and I like to see and understand what is going on in my body. He’s happy that my lymph nodes look clear. Phew. This matters, because if cancer spreads from the breast it goes to lymph nodes first.

So, back to the clinic and I met my breast care nurse, Elizabeth. She seems kind and well informed. She gave me a folder of information and pack of leaflets. Wow, I really am part of a process. I’m not unique, they’re telling women everyday that they have breast cancer and this is what happens. I take comfort from that. They know what they’re doing. I’m in good hands.

Then she says something that rocks me to my core. “I’ll be your nurse for the next five years”

The reality of my new normal hit me when she said that. I’m in a new tribe now. I have a new world view.

Then a moment that was funny and surreal – I think I’ll be grabbing on to these moments in the coming months. My professor asked if his medical students could examine me as apparently my breast cancer has presented in an unusual way. It feels like a benign lump, and there are no other symptoms, and it did not show on the initial mammogram. So, they file in to the room and they’re all encouraged to have a good look and feel of my boob.

Me, to the fresh faced, respectful students;  “It’s fine, please go ahead, have a feel, it will help your training”

One of the students; “Sorry if my hands are cold”

Professor to the students; “Now come on, you need to use both hands, right around there, to feel it. You see, many clinicians would not realise this was cancerous. No dimpling of the skin, no dents.”

Now I understand why my GP was so reassuring.

 

Finally I can leave the hospital. I phone my family. The hardest phone calls of my life. I text and email friends and work colleagues, friends text and call me. It’s overwhelming. It’s exhausting. But I’m also relieved. I’ve known since December 28th that I have cancer, I knew as I lay there looking at those ceiling tiles having that biopsy and the doctor made small talk. I’m relieved because now I know what I am dealing with. Now we can get on with it and get rid of those pesky cells that have gone crazy in my poor boob.

 

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