A dear friend commented a little while ago that this blog was ‘sort of reminiscent of a war correspondent, even a travel writer, on a dangerous but important commission’. Like a travel writer, I’m not the first person to explore the Tropic of Cancer, and I have maps and guidebooks to help me navigate the rather rocky, hilly terrain and anticipate what to expect.
But this week I had one of those unfortunate travelling experiences where you think you’ve got the measure of the exotic location you’ve ended up in and then something rubbish happens to rub in just how much of an inexperienced tourist you really are.
Me and DH trooped along to our meeting with my surgeon, the lovely Tracey on Tuesday. I wasn’t looking forward to it – I had sobbed throughout our previous meeting, a few days after I was diagnosed – and I had prepared some questions to ask. I wanted to know what the risks were if we didn’t remove the pre-cancerous calcium deposits (ductal carcinoma in-situ, or DCIS), ditto more lymph nodes than the one that was actually enlarged. In other words, I wanted to know the minimum surgery we could get away with, especially since the ‘active’ tumours are responding so brilliantly to the chemo.
After my notes were finally retrieved from the depths of the oncology department, nearly two hours after our appointment time, she examined me, and then we started having a chat (with me still naked to the waist but with my boots on, which is rather a weird and disempowering position to be in while having a natter with anyone, let alone a surgeon who quite literally holds the future of your body in her hands).
Once I’d got my clothes back on, let’s just say my 16 years of National Insurance contributions may not have covered the cost of the tissues I got through. For the next hour, a series of little shocks were accompanied by tears, snot and a spontaneous nosebleed (my nose has bled every day since my first chemo). I’m going to do a list here, forgive me for going all PowerPoint presentation on you:
1. In answer to my question ‘what happens if we don’t remove the DCIS? What percentage does actually turn cancerous?’, Tracey took a deep breath and explained that while there was a lot of stuff in the media at the moment about over-treating DCIS (which doesn’t respond to chemo as it’s not cancer yet, so the only treatment is surgery), that was about low-grade DCIS. I don’t have low-grade DCIS. I have advanced DCIS that is probably only a burnt sausage away from turning into another tumour. I didn’t know this. I thought it was closer to benign than cancerous, and not terribly serious.
2. In answer to my question about how many lymph nodes she was planning on taking out, she said ‘all of them’. My entire lymph system under my right arm, around 20 nodes. Lymph whisks toxins away, drains excess fluid and is a crucial part of the immune system (those swollen glands on your neck you get when you’re unwell are lymph nodes too), so I’m not at all keen on this. I asked why she needed to remove all of it and she said because I had cancerous cells in one enlarged node, there was almost certainly cancer in many of the rest of them, and it was ‘standard treatment’ to whip the whole lot out. I did tackle her on this: just because something is ‘standard’ doesn’t mean it’s right for me, after all. She clarified this by saying according to all the evidence, the best way of ensuring that cancer that has already spread to the lymph doesn’t get carried around the rest of the body is to remove the whole kit and kaboodle. I didn’t know that.
3. I asked what my breast would look like after the reduction surgery, given that she needs to remove a margin of healthy tissue around the DCIS and also around the area where the tumours were. She explained that we were talking about a lot of breast tissue, and so we were looking at a B cup. That’s quite a drop down from a DD. For someone who’s been a curvy girl forever, that’s going to take some adjusting to. But OK, fine, I can keep my own nipple, so at least it will still essentially be my own boob, just a smaller, perter version. And the other one will be resized to match? Yes, but not for three months. Whaaaa? WHY??? Because you can’t get a good cosmetic result on the other size trying to match it with something that hasn’t settled down from the surgery yet (apparently the nipple starts off looking excessively pert like it’s going to poke your eye out, and then everything settles into its new position after 12 weeks or so). So when we go on holiday in June I will be quite dramatically lopsided and need one of those mastectomy swimsuits? Er, yes. I definitely didn’t know this.
4. And while we’re on the subject of mastectomies…When the sample of tissue around the DCIS comes back from the lab, it’s possible that the margin of healthy tissue will be a bit on the narrow side because you can’t see or feel it – the area will be mapped out with wires based on scans so effectively Tracey will be flying blind. If this is the case, we might have to convert to a full mastectomy and reconstruction. And the bionic boob still can’t be as big as the other one (because of the limits of the ‘skin pocket’ – too much technical detail for me so let’s not go there, this isn’t an episode of Holby you know). You’ve guessed it: didn’t know that either.
5. Oh, and then I’ll need radiotherapy. Nooo! Brand new information! Loads of targeted radiation at the hospital every other day for five weeks! Bloody hell. No-one had mentioned this to us previously, not once had it been mooted. So again, I didn’t know that.
Spot a pattern anywhere? It was just like a series of little explosions. It wasn’t an amazing view anyway, and the landmines didn’t exactly pretty it up. I don’t know what I was expecting, but it was something along the lines of one op, both sides at once, slightly smaller boobs, bish bash bosh, holiday to celebrate my cancer ‘experience’ being over. And that’s not what it’s going to be like.
I’ve always been a bit confused by the expression ‘the map is not the territory’, coined by Polish American philosopher and scientist Alfred Korzybski, known as the father of semantics. (It’s an expression that’s used a lot in life coaching, specifically NLP.) On Tuesday, I realised exactly what he meant. It doesn’t matter how much research you do, how many guidebooks you look through and how closely you try and follow the ‘map’ of your life. Things just are what they are. Wanting – or assuming or imagining – them to be otherwise doesn’t make them so. The only answer is to actually walk the territory, one step at a time. And try not to trip over and fall flat on your arse.
Right now, I have a sore metaphorical bottom, if you can imagine such a thing. But I’ve had a couple of days to adjust. I’m starting to process this new info and deal with it. And soon I’ll go from stubborn resistance to acceptance. Then at some point the next phases of my treatment will start to feel like my choice. So I’ll pick myself up, dust myself down, and get on with enjoying the kiddies, work, social stuff with friends and a couple of weeks of normal before chemo cinq on February 11th. Pass me that brochure, I need a holiday to look forward to…
Good analogy with the map is not the territory – something I’ve learnt whilst living the expatriate spouse life – the contract says, the timing said, the guide said, the agent said….it is what it is at this moment and its all news again for you. keep your chin up – the change cycle you know about and are getting so experienced at the ride! You’ll enjoy your holiday in June even if you’re lobsided! Big hugs xxx
What a great phrase “The map is not the territory” – and I’m so impressed with your positive attitude to all of these setbacks (and remember, they are just that – setbacks). I also think you are bang on the money with arranging a holiday – go and have a look at some new territories!
“I did tackle her on this: just because something is ‘standard’ doesn’t mean it’s right for me, after all.” <– YES! Bravo to you for pushing through with all those questions when you were being stunned with new information at every turn. That is not an easy feat. Sending hugs! x
Looking Surgery in the Eye – a bit like looking in the eye of the Tiger Majmaj – growl and roar back ‘cos you’re such a fantastic fighter!!!!!!!!!!!!!!!!! You’ll win. Our strong love is with you always …. now for that sunny holiday mmmmm xxxx
Hey…keep liiking on the breast cancer care forum….we are all having treatment, are a rowdy lot and can impart valuable knowledge about the ‘stuff they don’t tell you!’
Hey…keep looking on the breast cancer care forum….we are all having treatment, are a rowdy lot and can impart valuable knowledge about the ‘stuff they don’t tell you!’
Good for you for being questioning and understanding that their are different vehicles for this journey and for not letting this beat you. I am here if you ever need to chat. Fuck Cancer
Hey gorgeous, sorry to hear the road is bumpy this week. If it eases anxieties in some way Mum had all 20 odd of her lymph nodes out under one arm and apart from no driving was relatively back on form within a couple of weeks. She has just had her first week of radiotherapy with another two weeks to go and currently feels fine with no ill effects. Scary and shocking as I can only imagine it to be it is all a strong, focused obliteration of the enemy and you, my friend, have already proven to be the strongest and bravest of warriors.
Sending love and hugs and looking forward to seeing you soon.
Just to let you know that a patient of mine (well quite a few actually), has been through exactly the same thought processes.
I visited her one morning and she was making her own prosthesis, she had used wadding in various circles…getting smaller until she reached the size which made up to the size of her other boob, she then sewed it all together and put it into an old stocking(washed of course). She then put this into her bra/cossie and VOILA….she looked amazing, thing is not to be self conscious, no one else notices.You are who you are and you are amazing
hi, i have just learnt a huge amount of stuff much better than reading those womens mags!! you are handling all this so well and you are sooo strong and positive. AMAZING. book up a fabby holiday and good luck for the next lot of treatment. take care
I’m sorry there were so many surprises. But I love the map/territory explanation. It is so true. Keep putting those feet one in front of the other. Thinking of you x
Gosh. Sounds tough going. All I can really say is that a very good friend of mine had surgery for breast cancer. She is absolutely fine now. Hang on to that thought. xx