Act 2: Beginners Please

My attitude approaching surgery has been different from preparing for my chemotherapy, partly because surgery seems more comprehensible than the potions of the physician.  The surgeon is going to cut the cancer out.  We can all get our heads round that; no need for bewilderment at the technicalities of the chemicals that make up those black covered bags, the contents of which have been pumped into me.  Of course, the surgery is anything but simple, but the concepts are easy to grasp, and therefore the reactions post-surgery should be easier to deal with.  Maybe.

I went alone to my last outpatient appointment with my surgeon before admission to hospital.  My FLM was concerned about this, but I was certain this was to be a very private time.  I had had an MRI so the surgeon could see exactly how the tumour had responded and unfortunately it has not responded as well as was earlier believed.  Although there had been changes to the tumour, the footprint was unchanged.  This meant I could not have a lumpectomy as earlier planned, but had to decide between a therapeutic mammoplasty or a mastectomy.  If I chose the mastectomy, what sort of rebuild would I want? I was glad I was on my own, because there are issues that I don’t want to have to decide in front of people.  I don’t know whether this is because I do need the privacy or, after many years of being on my own, I can’t rely on other people to really have my best interests at heart.  I am aware this insults all the people reading this with love and care, and all the people who have so cared for me through all this, but the returning themes to this process are ones of trust and control.  When I woke up in recovery after my surgery all I was muttering were the phrases written by my ex-boyfriend in his exit email: that I had no moral fibre and no backbone.  What had he done to leave such damage in his wake?  I’m not sure, but it is certain he had known exactly how to hurt and, despite me being long past the time when I ever want to see him again, those phrases keep on hurting.  DN1 pointed out to me that I’m probably going to need professional help to deal with that trauma because I think it’s undeniable that I am brave and strong.  I’m not sure I’m exceptionally so, but I’m not on the weak end of the spectrum.

A therapeutic mammoplasty is a form of oncoplasty, a combination of oncology and plastic surgery, where the tumour is removed, the breast re-modelled to look ‘normal’ and the other breast reduced to match the first one.  It’s becoming more popular as an option for breast surgery but can only be offered to women with breasts large enough to be worth reducing in the first place.  I hadn’t heard of it until my appointment, believing the options to be lumpectomy or mastectomy.  I had been told that the plastic surgery at my hospital was very good, and that the rebuilds after mastectomy were life enhancing.  There are a number of ways you can rebuild breasts: the simplest involving implants; or using your own tissue, notably from the stomach.  I have to confess I seriously, I mean seriously, considered having the mastectomy just to get rid of my stomach.  Isn’t that an awfully lightweight thing to admit?  I have hated my body for a long time; I look and see the faults.  I know this isn’t unusual, in fact I believe most of the female population do the same thing, but this loathing has eaten into me, rotting my sense of self-worth.  In addition, my boobs were getting bigger.  Now they’ve always been on the generous side, but recently it was getting difficult.  At my thinnest, after my husband left, I went down to a 32G which meant that my ribcage was about 32-33 inches with my bust at 39 inches.  Prior to surgery my bra size was a 36H so that my bust was about 44-45 inches, with a ribcage of about 35-36 inches.  Finding clothes to fit was becoming more difficult and having permanently strained shoulders and back ache was just an everyday occurrence.  I am aware, and in the past was told, that I had ‘amazing boobs’ but with the passage of time, and the effect of gravity, such compliments were probably only thought whilst my formidably constructed bra was in place.

I have discussed the problem of ‘pride’ a number of times in my blog.  My upbringing inculcated a loathing of pride and being ‘above yourself’.  That fine line between vanity and self-esteem is a well trodden path for women of my generation, with most of us needing affirmation from others, when often ‘others’ have they own agendas. Mothers not wanting their daughters to be in danger, fathers not wanting their little girls to grow up, insecure boyfriends not wanting their girlfriend to realise how many men they could really choose from, girlfriends caught in a toxic wheel of self-loathing and projection all feed the woman who is primarily socialised to be grateful.  To be proud of yourself is to set yourself up to fail, because you deserve to fail for getting ‘above yourself’.  What a horrid toxic mess.  If only we could believe that liking ourselves does not have to mean we think we are better than anyone else.  For those of us blessed with children, it’s like the love you have for the father of your children and those children: there is never a competition; it’s just different love. Or it is if all the love is healthy.

I am aware it has taken me until my 50s and a potentially life threatening cancer to really think about these issues that have dogged me all my life.  That old chestnut:‘you don’t know what you’ve got till it’s gone’.  But, in my case this isn’t true.  My mother was diagnosed with breast cancer over 25 years ago.  I remember her anguish at her lumpectomy.  I remember how ill she was with chemo.  I remember her telling me it wasn’t really worth going for another mammogram as she’d had seven clear year. And then another tumour was found, her second primary.  I sat with my mother in the chemo ward after her cancer had spread, her third diagnosis, and had her tell me she wanted to die.  It was on her birthday in 2005 and they’d mucked up her chemo dose and she was so very ill she went into the hospice for respite care, which helped her recover and have a good holiday in the summer and a very happy Christmas.  I was with her in hospital 11 months after her birthday when she was throwing up her rotting insides at regular intervals days before died, alert and clear eyed.  ‘I’m dying,’ she said with frank honesty.  It took several days and I’d be lying to say she died pain free, although I missed that moment by two or three minutes.  Only the nurses and I saw her straight after death, and I have no illusions about what could happen to me.  I have tried not to, and unsurprisingly not entirely succeeded, get above myself.  Of course, I have had to displace those unacceptable feelings, like everybody else does, which I believe has left me with the toxic self-confidence issues that continue to this day.  Learning to trust my friends, and to let go of control of my life have been the abiding issues of my treatment.  They might yet be the best outcomes of the whole process, apart from surviving of course. 

The more I meet my surgeon, the more I have come to the opinion that he is a kind man.  Dangerous territory for a breast surgeon, but I’m sure he has his boundaries in place.  Without them a person would go very mad in that job.  He had to tell me that my options had changed and I had to choose.  I think he knew what he wanted to do for me, but such is the ethos these days, patients have agency over their treatment.  Again I was grateful I was on my own because I could puzzle the choices out by asking my own questions, and not feel any well-meaning pressure from anyone else.  How much sensitivity did I need in my reconstructed breasts?  Well, yes, it depends what I’m going to do with them, and if all they do is hold my clothes out, then not much really.  But if I really envisage a future where a man and I curl up naked together, might it be important?  My FLM is adamant that my dating times are not over, and though it seems to me about as likely as flying to the moon on golden wings, should I rule it out?  I hadn’t time to waffle and I really didn’t want to explain my beliefs to this well-meaning but rather busy surgeon.  On balance I went with the surgery that had the fewest risks, which was the therapeutic mammoplasty.  I wouldn’t lose my nipples, but I could lose sensitivity in both of them.  Oh yes, this would mean surgery on the healthy breast as well as the diseased one, as well as a lymph node removing for checking.  That was the downside: scars on both sides, along with losing some of the size of my breasts.  To be honest, the idea of having smaller breasts was a relief, but not something I’d admitted to myself.  Having to stop going to the gym meant they were sagging more than ever, and I had a tumour in one of them, quite a big tumour.  The thought of the change grew on me and became a real relief.  The disadvantage of this type of surgery was they have to cut the tumour out with a large margin around it and if they haven’t cut the whole thing out I might have to have more surgery, which isn’t ideal, but a risk worth taking.  On balance.  I decided. Finally. 

My surgeon warned me I was going to be drawn all over just before surgery, but actually that was a comfort.  I liked to think he wasn’t likely to make a mistake and cut into the wrong one first.  He measured me from collar bone to nipple and each under breast circumference, making notes on his pad.  He showed me his pad, which meant little to me, but meant I felt part of the process by being shown his workings.  So, off I went, to return for pre assessment a week later.  

Pre-assessment is when you meet a nurse who runs through everything, takes blood and performs an MRSA test.  I had tested positive for MRSA after my last chemo, so I was already scrubbed from head to foot in decontamination liquid (that really is the description after the product name) five times in a row, so I knew the drill.  I also met with a pharmacist and took in all my regular prescriptions.  She was grateful I’d been a tad over-organised and brought all the boxes in, so she could see exactly what I was prescribed.  I was given local anaesthetic cream and dressings to cover my nipple with an hour before I arrived at the hospital.  I was told they were going to inject into the nipple with the radioactive ion for the lymph node biopsy.  In fact, on the day they went into the skin just next to the nipple and it was almost painless.  That should have calmed me but by then very little would have made me feel better, except waking from my awfully vivid dream, which I couldn’t as it was awfully frightening real life.

My haemoglobin levels were also down, not disastrously so, but enough to explain why I was feeling so tired.  I can’t take supplements at the moment, so I thought a bit of diet manipulation would help.  A google search supported what I thought I knew: so orange juice came with breakfast, or meals that might have something that blocked iron uptake, and I had 85% cocoa chocolate, red meats and spinach.  It was amazing how fast those changes worked, because my energy levels were better in 24 hours.  I continued to cycle my ‘Challenge 24’, finishing on the Saturday before my surgery.  For those of you who are unaware, I decided to take on the Challenge for Pancreatic Cancer UK, cycling 24 miles after chemo and before surgery.  I asked for sponsorship and have been overwhelmed by the support I have received.  To date about £700 has been raised, and I have felt much recovered with my 2 and 3 mile cycle rides clocking up the challenge.

DN1 arrived on Sunday 18th ready to take me in for 07.15 on Monday 19th.  I didn’t sleep much on Sunday night, waking every hour or so.  DN2 was starting a new job as well, so it was more or less anxiety central early on Monday morning.  DN1 and I got to the waiting room, and waited.  And waited.  The room was full of grey faced people with small holdalls, and their ‘trying to be brave’ faced companions.  One or two people were on their own.  Did I want that?  No I didn’t, although I didn’t want to put pressure on DN1.  She did say she was glad she was there.  There is a feeling having your adult daughter beside you that is hard to put into words.  These are the edges of existence, the bits of life where the real person shows themselves, and boy, am I proud of my girls.

The room emptied slowly.  I had been to have my paperwork checked and have my surgical socks issued and put on.  The anaesthetist had been to see me and take me through all she would do for me.  My smiling surgeon and his registrar arrived to measure and draw all over my chest: I looked like a dress pattern for an unflattering pinny.  I went back to the waiting room.  There were only two of us left when I was called to go down for my injection.  Except I couldn’t have my injection yet; the radioactive substance had to come from Colchester and it hadn’t arrived so I sat in the nuclear medicine department trying to stay calm.  DN1 went and asked someone as she realised, without us speaking, that I was nearing cracking point.  If you’d seen me, you probably wouldn’t have noticed, but she did.  The staff were lovely, but we had to wait.  Finally, we had news that the stuff had arrived but was being signed for.  More waiting.  And then I was called into a treatment room and given a tiny injection that was, as I said, almost painless.

DN1 and I walked back to the Same Day Procedure Unit and it was all stations go: Into my gown, slippers and dressing gown, a hug with DN1 and taken off by a nurse in scrubs.  By the time I got to the anaesthetic room, the terror had overwhelmed and all I could do was cry terrified sobs.  The reality of having cancer, of having surgery, of losing part of myself, of having to trust all these people, it all just crashed around me.  They were very kind, but soon the cannula was in and blessed unconsciousness took over; I never saw the operating theatre, thank goodness. 

I woke groggily in the recovery room, muttering about backbones and fibre.  I was wrapped up and on oxygen.  I came to and was moved to a quieter part of the room where I was given a cup of tea.  The anaesthetist came to see me, explaining why I had two cannulas in my hand: apparently they needed a bigger vein to pump the stuff in faster to keep me under.  I’d been in theatre three and a half hours.  She also mentioned the tears continued to pour down my cheeks after I’d gone under.  She said she cleared them up and I stopped crying.  I was heartened by the news. 

It was strange looking at my chest through my gown for the first time.  It was smaller than I imagined.  I was a bit worried, but I’m not now.  Five days on from my surgery and I’m walking about.  I have to be careful not to do too much as my residual strength means I could pull the stitches out.  My surgeon is very pleased with my progress so far and I have full sensitivity, which he seems particularly pleased about. Moving two nipples up and their blood supplies is quite something.  When the registrar visited me in my room on the ward he assured me ‘you can move nipples up but never down again’.  Quite a thought for life.

Now, apart from recovering from this surgery, I have to wait for the histology results to see if all the cancer is out and whether it made it to the lymph nodes despite all that chemotherapy.  The curtain isn’t quite ready to fall on Act 2.   We shall all have to wait for the interval and that dash to the bar to refresh ourselves.  No fidgeting please, the actors are working.