Operation Done: life in Lymph Node Limbo Land

And why happiness is a brie and cranberry sandwich

Hooray, my next treatment hurdle has been cleared! (If you fancy watching a video update instead, scroll down past the photo).

that first coffee after surgery - bliss!

Last Friday, I had my first operation since having my tonsils out aged 11: surgery to remove the cancer from my armpit. And it has been totally fine: massively relieved and pleasantly surprised by how little discomfort there’s been and hoping it continues that way.

My weird diagnosis

Compared to many people with a breast cancer diagnosis, my surgery has been quite straightforward - partly because of my thoroughly peculiar diagnosis (which is found in only around 1% of cases). They never found a lump in either breast, and had I not noticed the lump in my armpit myself, the cancer might have progressed a lot further before diagnosis.

There are three theories:

1. there is cancer in my breast, but too small to be detected (though I had a lot of scans).

2. OR my immune system somehow cleared the tumour from the breast, but it then set up home in the lymph node .

3. OR the tumour started growing the axillary (armpit) lymph node - medics find this less likely because it’s a bit of a cul-de-sac, really only leading to and from the breasts.

Image: Lymph node network: (Wikicommons / scientificanimations.com.

Lymph node love - my tribute!

The downside is that the lymph nodes that play such a vital part in our immune system so ideally you hang onto them. But needs must, and the operation removed all of them from that side, in three ‘blocks’, as far up as the area under my collarbone.

Before surgery, I couldn’t find much information about a ‘level 3 dissection’ or ‘clearance’ without lumpectomy, which added to my nerves but the lovely surgeon seems to have done a very careful and neat job.

I feel far less sore than expected and though the wound under my arm is quite long - he needed a good rummage around - it should heal well. I’m quite numb round my lower arm, because that area is rich in nerve endings and muscle: that might be permanent, or may improve.

Sacrificing all the nodes does increase my risk of swelling and infection for life. The old advice used to be to not overexercise the arm, always wear Margot-Leadbetter style gardening gloves - and a total ban on saunas (I LOVE saunas), or even embroidery! But that advice is outmoded. It seems it’s mostly the luck of the draw.

The three ‘blocks’ are now in a lab being tested to see if any of the other nodes show past or present sign of cancer, because they’re all linked together like a chain of beads so dodgy cells can move from one to another.

The most important result for me will be whether the chemotherapy killed all ‘active’ cells that were in the original node that gave me the most important message of my life… I think it’s about 50/50 but none of us are ‘average’.

If the cells are gone, I move onto radiotherapy to zap any tiny undetected traces in my breast. If there are still live cancer cells, I will be asked to consider 24 weeks of oral chemo to ‘mop them up’ - less disruptive than what I’ve gone through since December but still no picnic.

Living in lymph node limbo land.

I don’t even know yet how many nodes took out because we’re all different. Just before the op, I had a madly weird idea for a lymph lotto in aid of the tiny charity, Little Lifts. They send boxes full of goodies to help patients undergoing treatment and have sent over 30,000 in the UK.

Image: Little Lifts Chemotherapy care box

Lots of people have been generous and honestly, PLEASE don’t feel the need to get involved. I also want to make other patients aware what a lovely charity this is.

My Little Lifts box made me feel really nurtured at a tough time - there was skincare, food items, and an eye mask, all NHS approved as safe, And if you’re going through it too, you can ask them for one. Just add your details HERE if you’re having chemo, radiotherapy or surgery in the UK right now.

can do if you like and just guess how many lymph nodes the doctors will find (you don’t have to make a donation). The lotto is open till I get my results: I’ll send a lovely posy of Bloom & Wild flowers to whoever guesses closest.

Surgery ups and downs

The days since the op have been less painful but more emotional than I expected, to be honest. I’ve only needed paracetamol and hugs. I couldn’t sleep the night after the op because of steroids. I watched the lightning criss-cross the sky. I came home Saturday morning to big doggy licks.

Saturday - home again!

But as many patients find, surgery brings up all the emotions. The reality of all I’ve experienced over the last nine months hit home again, plus anaesthetics mess with your head. Sunday was not my proudest day in self-pity terms.

But it’s Monday now and I don’t ache too much.

When I found the lump, it was between 3 and 4cm, roughly the size of a Brussels Sprout. But when the surgeon took it out it was roughly a tenth of that, after treatment. It was peculiar knowing it stayed with me for eight months (oncologists prefer to leave it during chemo so we can judge how far the tumour responds - like being a human petri dish). And I am also grateful to that node for showing me there was a problem…

So here in limbo land, I’m super-thankful - for all your messages on social media, for the surgeon and medical team’s skill, for anaesthetics, and also for my diagnosis coming now, when there are so many more treatments available for triple-negative breast cancer than there were even a decade ago. I feel a sense of abundance and joy and I promise, this time it’s not all about the steroids.