Trouble in paradise

I’m pleased to say that I am in no physical pain my friends. This last surgery has lived up to its reputation as being easy and quicker to recover from. My troubles for this week have not been caused by someone slicing me open with a very sharp knife. That was a walk in the park compared to some serious emotional distress I’ve been exposed to in the past few days. I was bullied online in a breast cancer support group. Sharp intake of breath. A place where I had opened myself up to strangers in a way I haven’t ever done, turned into a very unsafe space very quickly. I’m not going to go into details because it’s very long and tedious, she said this, she said that. The context was organising for a Christmas gathering for the region which I had helped out with. A disgruntled group wanted a different kind of event and were very vocal until the event changed to their liking. When others wanted to be included they rounded on them aggressively and then seemingly gloated of their victory with in jokes and ridiculing statements. Eventually the admins stepped in and sorted it all out but it got very ugly for 24 hours. Things move so fast on the internet.

I decided to leave the group. Recovering from surgery and being terrified to check my phone were becoming mutually exclusive. I chose my health. But it has not left my mind for long which is why my friends, I find myself writing this out because my coping strategies aren’t cutting it so far. I’ve moved through lots of different reactions and emotions: fear, anger, guilt, rage, sadness, despair. I’ve tried thinking my way through it, could it have gone down differently? Could I have intervened earlier and with more skill? Was I the bad guy? So far none of this has stuck. I haven’t moved forward much at all.

Today I began to think well perhaps this is just the product of standing up to bullies. An unpleasant side effect for defending yourself or others. Something to be endured. I felt better for a little while, confident in my self righteousness. But it didn’t fit, like socks that slip down into your shoes and make you feel slightly uncomfortable all day. It has forced me to come at this in a very different way. What does Heidi the social scientist think of all this? I think the bullies felt like the oppressed group. At first they probably were. They weren’t getting what they wanted and they were fighting for it. They perceived themselves as powerless. They quickly formed an in-group of similarly perceived powerless people. Once there was an in-group, favouritism was inevitable. People in an in-group will see more similarities between the members of their in-group than the people they perceive to be outside the group. After that the dynamics were fixed and it would have been almost impossible to steer it differently. We became the out-group, other. Their self-identity as a group was also imbued with justice and righteousness so any criticism or attempt to include more people was treated as a threat.

However once they had achieved their goal. See I’m even doing it as a write. Seeing them as a out-group, a ‘they’. In actual fact ‘they’ were a group of individual women coming to this conflict with an entire narrative of their own, loosely thrown together by a fast moving and random sense of togetherness. I also suffered from the oh-so tempting action of forming an in-group when threatened. Anyway, at some point the event was changed and at this moment, power shifted to their advantage. Their self-identity changed without them consciously realising or acknowledging it. Their statements and comments became more overtly and clearly bullying.

When I drew attention to this behaviour, the commenters were defensive of the bullies. They made excuses for them. They explained that it was my interpretation of the comments that was the problem, not their intention. The in-group was still in full effect and becoming entrenched. I find this very interesting how a self-identity formed so quickly and got made rigid by perceived challenges to the group. But it made me feel depressed that this could happen in such a normally supportive space. But then humans are humans, even if they have a deadly disease. The self-identity of us all as breast cancer sufferers got splintered. The larger in-group shattered.

I do think this all could have played out differently though. If we had remembered we are all special little butterflies and not formed an identity as a group, then it would have been much easier to resolve potential conflict. Conflict is normal. Conflict can be sorted through if people show empathy, compassion then listen and compromise. Sadly, forming groups is normal too. It is one of humanity’s strengths but can sometimes be one of our deepest failings. The original conflict can become fixed into a story of justification for bad behaviour, its ‘heroes’ defended and canonised. I’m not saying folk songs will be written of the Battle for the Breast Cancer Xmas Party but remembering we’re all human beings with differing needs and wants is a better way than ‘us’ against ‘them’. Because there’s one big thing that makes us all one big in-group. We’re all going to die, some sooner than others. But our time is limited and I for one don’t want to waste another moment of it fighting some fake enemy for imaginary power. There it is. There’s that feeling I’ve been striving for all week. Peace.

One step closer to clear

Home. The last to leave..but leave I did. It all went smoothly and the day surgery unit felt more like a B&B than a hospital. My nurse Carol was arguably the shiniest, smiliest human I have ever encountered. The anaesthetist listened carefully to all my worries about shy veins and the subsequent destruction of them. He even had a bowl of hot water waiting in the anaesthetic suite to pop them out in a gentle fashion. Cannula in first time..than’ ya very much. And my wee family got to hang out with me almost the whole time. NHS at its awesome best.

boob arrow

When my surgeon drew this rather random arrow on me I was equal parts reassured the right boob was being operated on and completely thrown by being marked up like a tree for trimming. It turned out though that only half the original wound was sliced open again and extra tissue was only taken from one side. A pleasant surprise, we don’t get many of those. An added bonus is the surgeon snapped my stiff tendon back into action like one of those chemical glowsticks. I have almost full use of my arm again.

after op

This is the after shot. The op was about an hour and a lovely Spanish nurse called Nuria was there when I awoke. I regaled her with tales of my many adventures with Pimentos de Padrons. No singing though. I recovered really quickly with only a minor episode of “there’s blood everywhere” when a little build up popped out of the wound. One new gown and a bit of pressure on the wound and all was well. Hopefully that will be it but as my nurse says ‘better out than in’.

Off to bed with me now. I’ve got my array of drugs displayed before me for whatever comes next. I’m thinking it won’t be too bad. Biggest love to you all. We’re one step closer to clear.

Heidi the Warrior Princess laughs at mere flesh wounds

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Bring it!

Just a quick note that Heidi is just out of surgery and resting up. We’re hoping She’ll be able to be discharged in a couple of hours so we can take her home and spoil her.

The surgeon said that the op went well with no complications, no problems this time getting the cannula in.  Some pain is being managed at the moment the with good old morphine.

Heidi threatening the anaesthetist to not fuck up the cannula.

Heidi threatening the anaesthetist to make sure he doesn’t fuck up the cannula.

 

 

The second cut is the deepest..

Monday is the day. By 11:30am I shall be hungry, dehydrated and dressed in a thin unattractive hospital gown waiting to go under the knife once more. My re-excision surgery is imminent. Another centimetre of my flesh is going to be removed around the original site of the tumour. Apparently this kind of surgery is quite common and about 30-50% of people with my kind of breast cancer go through this. If that number seems very imprecise then that’s because there isn’t much data around and the variants are pretty big. I did find one small study that 23.8% of people who specifically had the kind of surgery I had, ended up having a re-excision. It’s also a pretty big must for me. Not to blind you with stats but it doubles my risk of the cancer returning if I don’t have clear margins.

It has been a rougher time emotionally lately and I’ve been contemplating why. I think chemo was so hard and gruelling that I hadn’t spent much time preparing for the impact of surgery. I was all la-la-la, nothing will be as bad as chemo. I can do this in my sleep. But surgery has brought its own challenges and they’re very different from chemo so my coping strategies didn’t help me. Walking on the beach and hanging out at the allotment were a no-go. I was too devastatingly tired and I couldn’t lift a shovel, no mind dig with one. Pain also makes meditating and mindfulness impossible. Being in the moment when they are overwhelmingly filled with agony is not somewhere you want to dwell. Body scans remind you that everything hurts. Pain also disconnects you from everyone around you. I was too scared to go out in case I got bumped. When your body is constantly stimulated internally (by pain), the sun seems too bright, the world too noisy. I had this feeling at the height of nausea but it passed quicker. Plus there’s no bear hugs. So the isolation gets intensely physical and emotional.

The medical aftercare was also poor and there didn’t seem a clear structure or point of contact for problems. During chemo I had the hospital, the cancer ward, my oncologist. This time it felt like all the carers couldn’t wait to hand me off to some other schmuck. Where the chemo care was careful and cautious, the surgical was quick, sharp and fast. Perhaps much like the treatments themselves. I’m sure there’s a PhD in there somewhere. The single biggest outside form of support I’ve had was from kind and generous internet strangers on the Facebook page for the Younger Breast Cancer Network (YBCN). User-led, all my fears and questions found an audience who could reassure me with their own experiences and make me feel less alone. I take solace in that.

I did have another Buffy-style fleeting moment. This time I was going through my nighttime routine of gingerly scooting my front-fastening bra off my shoulder. It’s a tricky business as it can be unpredictable at which angle my scars will start to protest. For instance, I was in a changing room today trying on a top that I had managed to squeeze into feet first but I realised getting it off was another matter. I stood there staring in the mirror, perplexed, shifting one shoulder one way and wriggling one arm another. I even considered leaving it on and simply going to the till, bending over the desk and asking them to scan it from there. Luckily I had the awesome Kat to come to the rescue and pull my arms out. Anyway, back to bedtime. As the strap dropped down and I sat there with boobs flopping, I felt this wave of irritation and wish for these sacks of flesh to just disappear. Poof, be gone. I wasn’t sad, I wasn’t scared. I didn’t feel emotionally attached to them. What I think this means is that I’m transitioning to a state where I see my boobs as the enemy. I’ve heard other women talk this way and I never got it. Until now. At the beginning of all this, my boobs were mine. They were fun, bouncy, part of my identity. They did cool things, they played a role in sex, in feeding my baby. They gave me lovely, beautiful cleavage that caught my food (I actually found a chip in there the other day, a whole chip).

But ever so gradually, those things have been replaced. My boobs have been on show to the public. They’ve been handled many times by strangers, stared at in a non-appreciative way, cut into. The surgery clinched it and pushed this forward more. My boobs are starting to take on new meanings that are eclipsing what they were before. They are bits of flesh, parts of my body with no purpose other than cosmetic. And they are trying to kill me. Maybe this is psychological prep work for any future mastectomy. Or maybe it’s a dangerous trick of my mind, disconnecting me from a part of my body that I need to reintegrate into my sense of self. I’m on the fence. Maybe both those things are true and I will exist in this state until the cancer decides for me. As usual, I live with uncertainty.

So now I am learning my lessons. I am preparing for what’s coming on Monday. Kat has cooked everything in sight and the freezer is full of frozen delights. My Brighton Buddy is coming over tomorrow and I will hand her the hoover as she walks in the door. Now I just have to pack my bag in case something goes awry and I end up in hospital overnight. There are many things I cannot control about all this. But some things I can. Here I go then, preparing as best I can.

 

 

Edgy Margins

So I’m not in the clear yet my friends. As much as I ever will be anyway. The pathology report is in and the surgeon isn’t happy that they could still find pre-cancerous cells a skant 0.5mm from the edge of the extra tissue (margin) they took around the tumour. Too close for comfort. This means they’re going back in from the nipple to take another centimetre of tissue. That will be looked at and if there are still cancerous cells too close to the edges, then mastectomy is back on the table again.

My lymph nodes are all gone. I had 16 of them and 5 were diseased. They’re happy with that side of things. Now we wait for a surgical date which will be as soon as possible. I will be under general anaesthetic again, so another opportunity for random bursts of song. But this time it’s day surgery and no drain. Although it’s certainly a huge drag, it’s not the worst it could be.

Weirdly I sort of knew this was going to happen. You remember that Buffy-style flash of thrill I got a while ago? I had a similar moment of deep knowing after the surgery that it wasn’t all gone. I’m not one for intuition or unprovable similar wooiness. But I had this type of solid, deep in my bones feeling before my diagnosis. I was torn last night between wanting to be right and to be able to trust myself and wanting to be wrong and not having another hurdle to overcome. Seems I’ll have to settle for feeling smug about crap.

So how am I feeling about it? Fed up, frustrated, things along that theme. I was hoping to be done with active treatment by my birthday. But that’s the petulant part of me. I can feel the adaptive human kicking in already. Time to buy more loose fitting clothing and tops that button up. Time to get more fibre in me if morphine is the drug of choice for the foreseeable. Time to accept the haul just got a bit longer. Time to stop pouting.

HAIR!

wpid-wp-1438520373097.jpegThe one upside to my Iranian otherness is that even chemo is no match for my my persistent and extreme hairiness. I would get the last laugh on my childhood bullies if they ever got cancer ; p

This is is the first day of feeling vaguely normal after surgery. My brain has defuzzed and I can move my arm around a little more. I was caught off guard by the impact of the operation. Who knew major surgery would be so.. major? I’ve pretty much been asleep for the past two weeks. I thought it was the morphine but I think my body literally put me in a semi-coma in order to fix itself. But I was awake for 8 hours yesterday before my bed called. I even managed to make a meal.

My wounds are looking amazing. I wish I could show you all my nipple. The scar is a non-event. The surgeon has mad skillz! I wish I could say the same about the district nurses. The first day they showed up they were flummoxed by my drain bag and had to call in another nurse to change it. OK fair enough for the first day. Except every single day for the following week the nurses claimed surprise and bemusement for every part of my care. They didn’t have the right dressings or drain bags. They were resistant to coming out even though I could barely make it out of bed. The merest whiff of me being able to make it to the GP surgery and they discharged me. Luckily I shouldn’t have to rely on them for care in future.

The next big date is next Thursday when I go to see my surgeon and get the news about whether they managed to get all the cancer. If not I could be in for more surgery. One day at a time though. Today I aim to stay awake until 7pm.