It’s a go

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Just returned from the ultrasound that my oncologist wanted to get to check the size of the lump. This would determine whether I would continue with the same chemo cocktail or stop chemo altogether if the lump was growing. Then they would have whipped me into surgery instead.

The radiologist had better bedside manner than the chief radiologist I had previously. The guy who had completely panicked when I started weeping whilst half naked. He’s not a bad person, just lacking in the whole talking/listening/keeping calm thang. Or perhaps the whole boobs and tears combo was just too confusing. ; p

Anyhoo, this kind lady even let me take a picture of my evil offspring and answered my myriad questions without consternation or befuddlement. On the spot she confirmed the lump wasn’t growing but couldn’t tell me straight away if she thought it had shrunk. I commented that I got the impression that interpreting these scans was more an art than a science to which she snorted in an agreeing fashion.

I got home to an answer phone message saying the chemo will go ahead as planned but no info on if they think it’s shrunk. They clearly didn’t get the hint that me wanting to photograph the scan was a sign that perhaps I would like LOTS of information. I’ll just take it as a positive for now and see if I can wheedle any more out of the hospital tomorrow.

I welcome humourous interpretations or deep psychological ones of the shape of the tumour. I’m thinking fat wolf..

Say what?

Language. I’ve been thinking about this for the past few days ever since I finally figured out what people typing DX at a breast cancer forum meant. Care to give it a try? I’ll give you a clue. It has to do with cancer and it’s something that everyone gets at the start. Dose of Ecstasy..Deluxe treatment..Dream Extraction? While the mind bending drugs would have been nice, it actually stands for diagnosis. When I joined the forum I felt nervous to say hello and live up to previous introductions, half of which I could not interpret. A typical one reads “I was DX in January with IDC and had a MX and ANC. Currently I am in TAX 3 with horrible SEs and gonna have rads and hormones.” So I didn’t bother and just lurked.

Two weeks into being a member I deciphered some of the code. TAX meant Docetaxel, my chemo drug, and MX was mastectomy. This felt like an initiation ritual passed, a hazing survived. I started to become more confident to write on the forum and began with gentle commenting. I have only resorted to googling ANC which is still a toss up between Absolute Neutrophil Count or Axillary Node Clearance. I’m learning towards the latter from the context I’ve read it mentioned in. It’s definitely wasn’t my first brain jump which leaned towards the African National Congress, the political party in power in South Africa. Strangely though there is some intersection in my mind between these two acronyms. When I did some climate change work in Soweto and was visiting with activists there, my local friend Dudu took me to a meeting in a house one day. There I sat mostly in bewildered isolation as the activists present spoke to each other in a mix of Afrikaans, English and Zulu. I understood one word in 5 if I was lucky. Dudu told me it was a coded language that made it possible to exclude oppressors from comprehension during apartheid.

When I was confronted with this coded language of a new group I was becoming part of, it brought this old memory to mind. Not that the two struggles can be compared and by no means are non-cancer types apartheid-style nasties. But I felt it was a similar dynamic of a group of people outside the mainstream creating a language that identified them as a group. At first it felt a little bit exclusive to me but because I already felt a part of this group by manner of my DX, I didn’t walk away. I worked hard to understand through context (and Google) and repetition. The same way we learn to use any language I suppose. Now I feel I earned my stripes. I feel confident and proud to say “I got my DX in January with IDC in one boob and lymph nodes. I’m on TAX 2 and the SEs aren’t too bad. Will be getting rads and hormones.”

*For the uninitiated (and hopefully you will always be so)

DX: diagnosis
TAX: Docetaxel
FEC: combo of chemo drugs fluorouracil, epirubicin and cyclophosphamide
ANC: Axillary Node Clearance
MX: Mastectomy
IDC: Invasive Ductal Carcinoma
SE: side effects
WBC: White Blood Cell
rads: Radiotherapy

Clean Bones

falafel burgerThis is my celebratory falafel burger. My bone scan came back clear. Remember a couple of weeks ago I was radioactive and couldn’t cuddle Lilah? Well that was a scan to check that the cancer hadn’t escaped the boob, tunnelled under the lymph nodes and made a break for my bones. It hasn’t. I had managed to stay fairly scanxiety-free for the two weeks since the scan but yesterday my tensions started to rise. I googled bone cancer. Noob mistake. Suddenly I was thrust into a huge sliding doors moment where my life could fork dramatically. If the scan was not clear we were in the realm of scary things like ‘bone cement‘, amputation and with secondary cancers we were talking palliative care. Here’s some painkillers, go home and get your affairs in order. I talked about acceptance being so important to coping with what’s happening but without a definite diagnosis, there is no acceptance. I was just in this state of limbo, between worlds. Would my life be one thing or another?

I did manage to get 5 hours sleep which I think is pretty decent for a night contemplating the abyss. Mum came with me to hold my hand and I did some serious deep breathing in the waiting room. When the doctor came to get us she immediately apologised and ushered us off down to a different room than usual. This was my worst fear, that we were be put in the dreaded comfy room once again. That could only mean one thing. Luckily she casually passed by the door to that room and swerved around to another office. I love the uncomfortable chairs of the office rooms. They mean INFORMATION and OFFICIAL COLD FACTS. The soft chairs of the comfy room mean bad, sad news. The doctor started gibbering on about chemo and how it was going and discussing this anti-emitic or that steroid. All I wanted to know was “Am I going to die?” So as calmly as I could manage I asked her for the bone scan results. Reassuringly she fumbled through her computer system in a very un-terminal news-like fashion. When she gave the good news, it was almost an anti-climax as Mum and I couldn’t whoop and holler. The doctor was way too cluelessly unconcerned about it all for us to react that way.

Anyway back to the breast cancer. So the doc copped another feel of my bad boob and declared the lump to be smaller. This was also delightful as I didn’t feel it was changing at all. She seems to think it’s gone down by at least 1cm but she does want me to get an ultrasound to check. Although last time they underestimated the damn thing by 4cm so my faith in their accuracy is limited. We won’t know for sure without an MRI and I REALLY don’t want another of those yet. Today however is about basking in the glow of good news. So come celebrate with me, my friends. We earned it.

Karma payback

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Finally made it to town for the first time since chemo day and was rewarded with these awesome shoes in the bargain bin for £5! I’m not really a shoe girl and shopping for footwear has always been a painful process. So this was doubly karmic, savings on pounds and emotional trauma. I did push a little bit too far by daring to walk a whole extra block to a cafe. For which I am paying in devastating tiredness. I can’t go to bed too early or I will be up with the seagulls. So I’m persevering until at least 11pm which feels like an age away. Keep me company?

Don’t Rage Against the Machine

sailboatI was surfing a breast cancer forum today and was a bit overwhelmed by the amount of people crying out in anger and frustration and not being able to express that to loved ones. It made me feel sad for them and a little confused. I guess I am pretty lucky  to have such awesome Bosomers like yourselves around to listen to my every rant but I also realised I haven’t felt those particular emotions that often. I remember clearly the day I got the diagnosis and coincidentally we had booked months before to go and visit our lovely friend Karen in Scotland. The flight left a few hours after I left the breast cancer clinic and the whole journey to the airport is a bit of a blur. Once we were on the plane though, the memories are sharper. There were two young women drinking champagne and giggling a few rows in front of me and I was shouting at them in my head “Don’t you know that stuff could KILL you?” On the other row of seats in front was an older man who dared to stretch his arms in a glib, bored fashion. Didn’t he know that serious and life-threatening things were afoot? How could he be so cavalier with his body movements? A week later on the flight home, Sleazyjet lined us all up in a very narrow corridor for 20 minutes before letting us on the plane. As the heat increased and my claustrophobia ratcheted up, I was a hair’s breath away from screaming at everyone, “GET ME OUT OF THIS CORRIDOR! I HAVE BREAST CANCER GODDAMMIT!”

So I’ve definitely felt that rage and sense of injustice, but it passed fairly quickly and I haven’t really seen a strong resurgence. Reflecting on why this is so and all I can think is that I accepted the diagnosis fairly early on. However, this is not a wisdom I gained from this particular life drama but from many others that have come before it. It was a lesson that was hard won. The psychological definition of acceptance “is a person’s assent to the reality of a situation, recognising a process or condition (often a negative or uncomfortable situation) without attempting to change it, protest.” I would differentiate acceptance from acquiescence which implies a more passive state or sense of giving up. I’m not talking about throwing in the towel. I’m talking about letting things that you can’t change be what they are. I don’t have all the science to back this up as there is this grey area between psychological theory and clinical studies so forgive my very subjective take on this.

There are studies to show that the opposite of this state of acceptance which I will say completely unscientifically here is the fight or flight response. This evolved as a way to get us to run very quickly away from creatures with sharp, pointy teeth that wanted to eat us. It works really well for short term problems but is not so great in the long run and can lead to heart disease, weight gain, depression etc. A cancer diagnosis can produce this response but it’s not good to hang onto it. Cancer is a long term threat to life so you need a more sustainable coping strategy. Legging it or punching cancer in the face ain’t gonna cut it. On a side note, just for reference, this is why telling someone they can ‘fight’ cancer isn’t the best statement to hear. Being in cortisol-fuelled emergency mode will do more harm than good. Also the whole reason I got cancer is because I can’t ‘fight’ it. My immune system is being very silly and thinks cancer is its mate. Cancer is the ultimate frenemy.

Connected to this is getting a good nights sleep. Not an easy feat I accept. There is evidence to show that people with depression don’t experience vital parts of the sleep cycle and this interferes with their ability to process information from the day’s events and incorporate it into their sense of self. I feel that it’s vital to my mental health that I make cancer part of my identity. I will live with it for the rest of my life, whatever that looks like. The tricky bit is to accept cancer without letting it subsume the whole. Much as the physical manifestation of the disease is attempting an aggressive takeover of my body, it is trying to do the same to my mind. Ignoring it or yelling at it (or random strangers on planes) won’t make it go away. Just as I had to accept my lumpy boob, so do I let cancer become a part of my self. A small, but profound part.

 

To be infected, or not to be infected

I had a near-miss with being admitted into hospital again yesterday. I was having flu-like symptoms which can be a side effect of the immune system booster GCSF injections I’ve been prescribed. I took paracetamol to deal with the shivery feelings and it made me feel short of breath so I wanted to get an alternative painkiller. The problem is that once you call the hospital for anything during this critical time when you could become neutropenic, the observer effect kicks in. As with atoms that start behaving differently depending on how you’re watching them, the nurse starts to make you neutropenic with her questions. The next step is admission into A&E and pumped full of antibiotics, no sleep, constant observation. The whole process then has the added observer effect of making you feel much worse than you would have been at home and then there’s the risk of getting an infection while in hospital itself. I understand why they act this way, the stakes are high. If I did have an infection, it could polish me off in 24 hours. It’s all a tricky balance of costs and benefits and having all the information you need to make an informed choice.

Ironically the whole thing was made blurry by the fact that the GCSF injections have the same side effects as the symptoms of an infection would have. It’s all down to an immune system response rather than the actual effects that a virus or bacteria has. The fevery, chills, aches, fatigue are ways that my body is showing that the GCSF injections are working. Like the stereotype of a stoic Londoner during the Blitz, even the most compromised immune system can at least muster up a wee fever. My bones ache in the pelvis and lower back because that’s where my bone marrow is busily creating white blood cells. It feels how I imagine an astronaut would if suddenly they came down from the Moon’s low gravity to Earth’s. If I get up too fast, my bones are still on the sofa and there’s this strange moment of readjustment. But with pain. So it is very difficult to make the judgement call of whether it’s an deadly infection or just my body doing its thing. This time we made the right call.

 

Christmas Cravings

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I woke in the middle of the night recently with an intense craving for Christmas. I could hear Bing Crosby crooning and taste the gravy slathered roast potatoes. All those childhood warm, fuzzy feelings I have tried so hard to repress in my adult life’s quest to rid myself of Catholic programming, failed me. I was maddeningly hankering after the whole package from the hanging of the stockings to the ritual gorging. I EVEN salivated at the mere thought of Brussels sprouts.

When I became semi-rational again, I realise part of this could be because this chemo cycle is going much better than the last one. The resultant feeling of well being is producing a kind of euphoric sense of good health. By extension, grabbing hold of life and celebration with friends and family is a time honoured way of embracing that. And nothing says enjoy life like a good old fashioned feast. Christmas being a much older amalgamation of various pagan festivities appeals to my need for ritual seizing the day.

The best fit though for my thirst for overdoing everything could be a festival Kat has been educating me, the Roman holiday of Saturnalia. Gift giving, naked carolling, role reversals, crazy overeating all sounds good to me. Well maybe not the naked carolling, especially in December. I wonder though if it is the real thing I want or just the idea of it.

Some studies suggest that people are happier planning a holiday than actually doing it. Perhaps my need for this is abstract and inspired by my social isolation. In reality organising and implementing a big ritual is stressful and never as good as in our imaginations where things go swimmingly. But maybe that’s about sharing the load, making it a truly community endeavour instead of a performance.

So who’s with me? Wanna put the Saturn back in Saturnalia..

So Far, So Good

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Hello world. I’m emerging from the worst of the nausea like my wee calendula seedlings groping for sunlight. I don’t want to jinx it by being too cocky but this cycle does feel completely different than the last one. It seems not taking the correct dose of steroids was about the silliest thing ever. A mistake I will never make again.

I’m constantly sucking on candies in order to control the ghost like nausea that’s left behind. I even managed a walk around the block today, albeit latched on the arm of the lovely Kat. This time last cycle, I was doubled over with stomach cramps but theres no sign of their return so far. I’m tentatively thinking things are going to go smoother this time.

Just wanted to let you all know how it all is and fingers crossed, will remain.

A little bit off the top?

shavingThe day of the big shave finally came yesterday and it’s all off now. We had a little fun doing it, starting with a New Romantics/Morrissey cut, moving to a Barcelona mullet and then an Mohawkian with a little added feminism.. coz why not. It was a team effort from Kat, Adam and Lilah with her awesome combing and cuddling skills.

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I felt pretty alright about it in the end and I realised that a lot of my anxiety was sourced in this sense of losing my identity to the illness, or rather the cure. At the beginning of this process when I was going alone to appointments and dealing with two or three medical types in the room with me, it was very easy to feel my sense of self slip away. When you’re vulnerable, made more pronounced by having your boobs on display, it’s very difficult to make your personality felt by others. Your humanity and theirs gets subsumed by the language and environment you’re all in. When Adam started coming with me, that changed quite a lot. Having him telling cheesy jokes and speaking up when I couldn’t really helped the doctors and nurses remember that we were all human beings and had other parts of our identities than just this narrow set of interactions.

Anyway now it’s time to incorporate this new look into my existing identity, which has much more to it than ‘Woman with Breast Cancer’. As Lilah said to me this morning, “Your bald head is cool and inside you’re still Mummy.”
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