After a cancer diagnosis, dates take on new meanings. We call them ‘cancerversaries’. The day you were diagnosed. The day you finish chemo. The day you finish radiotherapy. My first cancerversary was 24 July, 2015, when at the age of 40, I was diagnosed with Stage 3 breast cancer.
I now have another one to add to the list – 23rd May 2018. The day I found out my breast cancer had come back.
Now before you all swear / gasp / cry – it’s not as bad as it sounds, honestly. I ‘only’ (she says….) have a local recurrence – in my chest wall. This means it’s treatable and potentially still curable. It could be a LOT worse.
This is not the blog I thought I’d be writing
I thought I’d be telling you all about the chronic pain I’m in due to radiotherapy causing a contraction of the capsule around my implant. About the operation I had last September to replace the implant and release the capsule, which worked for about two months before the contraction and pain came back.
I thought I might be telling you about my ongoing problems with shoulder stiffness and cording (yep, still getting it even 2 years after my operation), and how I had to have my frozen shoulder injected and still have a reduced range of movement.
I even thought I might be talking about the guilt I feel. Friends have recently been diagnosed with metastatic breast cancer, and it kills me inside. I feel guilty that they’re going through it and I’m not. How did I end up being the lucky one? It’s called ‘survivor guilt’.
How did I end up here?
To be honest, I really thought I had bone mets. After a cancer diagnosis you worry about every little ache and pain. I know patients who had to fight to get doctors to take their worries seriously, when their worries turned out to be mets. I was lucky in that regard.
I’ve been having left hip pain at night since Christmas, mainly when I lie on it at night.
“We all get that from time to time, it’s nothing to worry about….”
[Googles bone pain – worse at night]
Then I got a bit of sciatica in my right bum and thigh
“It’s because you’re sporty, don’t worry about it”
[Googles sciatica – could be mets in my spine]
Then I got some new rib pain below my scar, and after waiting for a good couple of months, I went to see my GP. She was fantastic, but thought it was probably all muscular, and ordered a host of blood tests – all normal.
Of course you don’t have bone mets…
I think it would be hard for anyone to realistically think I could have mets, especially as everyone has been telling me “You look really well” at the moment. Well, appearances can be deceiving.
Physically, I look great because I’ve just spent three weeks back to back in Mallorca and Lanzarote on a cycling camp, a triathlon camp for Danish cancer patients and then another women’s cycling camp (yet another blog I thought I’d be writing before this one). I’m toned and tanned and the picture of health.
Mentally, you learn to hide your worries from friends, family and colleagues. It’s hard for them to live with the fear of recurrence too, and you don’t want to bother them.
Off to see the surgeon
I had an appointment booked to see my lovely surgeon last week to talk about what to do with my implant and the constant pain. Thanks to radiotherapy, my pectoral muscle is scarred and pulling my nipple towards my shoulder, which then pulls my shoulder forward, and it’s quite frankly miserable. I’ve been on Amitriptyline and Gabapentin for the chronic pain, and I wanted to see if there was anything we could do to try and improve things.
I ended up blurting out that I was worried I might have mets, even though the blood tests were normal, and she ordered a ‘reassurance package’ of a CT and a bone scan for me. I now know that the mental fear of worrying about mets is horrific, and you just want someone to take your worries seriously – even if the chance of you actually having mets is tiny. I swear, the moment she said she would do the tests a huge weight was lifted off my shoulders. I may just be an overly anxious patient who knows too much, and of course my pains are muscular because I’ve just spent three weeks cycling up hills into headwinds, but having that validation, that my pains were worth investigating, meant so much to me.
We had decided to take the implant out and see if that would help with my pain. When she examined me, she looked at the knobbly area of scar tissue I have on the edge of my pectoral muscle below my armpit. It’s been there for over a year now. We both assumed it was just scar tissue secondary to all the surgery and the radiotherapy I’d had. But to be on the safe side, she asked for an ultrasound.
Here we go again
I was back in the USS room, trying to read the face of the lovely lady scanning my armpit. She found a nodule. It needed a biopsy.
I had my bone scan and CT a few days later – and got to relive the feeling of wetting yourself in public when the CT contrast gets injected. You get a funny metallic taste in your mouth, and then this warm rush of sensation in your groin. And you have to have a full bladder before the scan. I was desperate to put my hand down and check that I’d not just peed in front of the radiology staff. You’ll be relieved to hear that I managed to keep my legs crossed.
Waiting for the results
I can’t explain why, but I just had a sixth sense that something was up. The following few days at work were really hard. To keep on seeing cancer patients, breaking bad news, hearing patients with metastatic disease discussed in our weekly meetings – all the while thinking – will it be me next week? I’d let slip to a few of the people I work with that I’d be getting results in a few days. It was great to know that if I did have a wobble in clinic, at least someone would understand and give me a moment to recover before seeing the next patient. No-one really expected the results to be positive – I look so well…
Back in the waiting room
My husband Dermot was on-call, and the night before my appointment he’d been up all night – answering phone calls and then going in at 5am to operate. Neither of us got much sleep. The clinic was running late, and Dermot was still seeing patients on the ward. I sat in the room alone, surrounded by couples who were anxiously waiting to hear their own results. It brought back all those memories of the last time I got bad news. I kept my head down so I couldn’t make eye contact with the clinic staff. They all know me as I’ve worked with them, and they would have all been at the meeting earlier that day discussing the results. I didn’t want to find out in the waiting room just by seeing how they looked at me.
Just before I was called in, Dermot came – my hero. I had built myself up into a nervous wreck. I was almost sick in the car as I drove from my own outpatient clinic as a doctor to my results clinic as a patient. Scanxiety really is the most awful feeling in the world. I clung on to Dermot’s hand for dear life, and then we were called through.
I knew. Before they said anything, I knew. Both the breast care nurse and my surgeon had that look in their eyes. My CT and bone scan were clear but the biopsy was a recurrence. Same cancer as before.
That lightbulb flicked off in my head again and I went into survival mode. Denial mode. It was all happening to a patient, not to me. Everyone had tears in their eyes. Not me. I’d been expecting it.
The plan is to remove the implant and the recurrence on the 4th June. I might need more radiotherapy – it depends whether this area was caught in the field from last time. You cannot have radiotherapy twice sto the same area. I won’t need more chemo, as it didn’t work before. I will probably need to have my ovaries out so I can swap hormone tablets, as the cancer grew whilst I was taking Tamoxifen.
So how do I feel?
– guilty for having to let people down, as I was meant to give 2 key note lectures the week after my surgery
– guilty for ruining my parents’ holiday as I had to call them with the news whilst they were away
– guilty for letting work down and having to go off sick again leaving them to fill in the clinics and operating lists I won’t be doing
And just a little bit afraid for the future.