Monday, 4 April 2016

What a boob....

After my third operation in 18 months, I now have no real breast tissue to speak of. I'm just like Angelina Jolie. Though without the beauty, fame, money and gorgeous husband. Obviously.

I'm not a BRCA mutation carrier like Ange, however based on my age and the fact I have already had breast cancer, the geneticist I saw in 2014 put my lifetime risk of a new breast cancer at 25%. This is twice that of the average women in the general population. Based on this, psychological (the constant at worry of finding new lumps and bumps) and aesthetic reasons, I argued my case for a preventative mastectomy. To be honest, my team are pretty good and I didn't have to argue too much - I think they know me too well now  - dog with a bone springs to mind. Or woman with a boob.

My risk of a new breast cancer has now been decreased to about 2% - lower than the average woman in the general population. However, it doesn't have any bearing on the one that I have already had. In other words, I still have as much chance of dying from that one than I did before this operation. Whatever that chance is I don't know - for once I'm preferring to live in ignorance (for however long that is) and have chosen not to discuss my prognosis with my team. I know some people find this a strange way of thinking, but prognoses are based on often outdated statistics and can have little relevance to individual situations. I'd rather not scare myself any more than is entirely necessary! 

The operation was delayed until this year, rather than being done at the same time as my first mastectomy because the priority then was to deal with the cancer that was there. My team understandably wanted to avoid risking extra surgery which could cause delays to my treatment.

I managed to enjoy an amazing six weeks travelling in Vietnam and Cambodia at the beginning of this year - which I'm going to write about on a separate blog - during which there were no hospital appointments or prodding and poking (well only in a good sense!). It was an incredible feeling to just be 'normal' for a while. To spend time on beaches and sightseeing rather than sat in hospital waiting rooms. The only time I had to get my boobs out was in a bikini. Bliss.

However, my return home was met with another hospital stamped letter informing me that my surgery had been booked for the end of February (leap day to be precise) and that my pre-op assessment was due the next day. Therefore, I dragged my jet lagged arse down to the hospital the day after I got back from my travels to spend over two hours having blood taken from my poor shriveled veins. Yes, I had to spend over two hours at the hospital whilst attempts were made to take blood from my arm, the back of my hand and finally from the inside of my wrist. Needless to say I would have much rather have been sleeping off my jet lag than being repeatedly jabbed with needles. 

As well as the quest to get blood from my wizened, chemo-ruined veins, the pre-op also consists of the taking of swabs to check for MRSA, which unfortunately in my case came back positive and led to my surgery being delayed. Here commenced five days of scrubbing with a corrosive pink shower gel and sticking stuff up my nose to try and rid my body of the little bugger. And also days of my head being up my arse and not knowing which way is up, waiting for yet more results. Luckily the re-swabs came back negative and my surgery was confirmed for the 14th of March. It seems so backwards to actually be excited and happy to have it confirmed you're going to be having another bit of your body cut off, but as I've learned, the strangest things are a cause for celebration in the breast cancer world. 

Apart from the usual 'what if i don't wake up?' panic and messaging my friends about what I want my funeral to be like, the morning of the operation was pretty uneventful. After the operation was pretty uneventful too, to be honest. Not a great deal of pain and sadly therefore no morphine drip. Dammit.

I even managed to take a selfie form my hospital bed.

 Ah, the calm before the storm. What followed was an entire night deprived of sleep (ironically hospitals are not the most conducive to restful sleep) - followed by a complete and utter meltdown the next morning, culminating in a very sympathetic Breast Care Nurse finding me in total and utter hysterics - I'm talking gulping-not-able-to-speak-or-breathe-properly crying - and hugging me until I managed to calm down. I think the complete lack of sleep played a huge factor, but it was almost as if the complete reality of what I had chosen to do to my body had sunk in all at once. However, a talk with the BCN, a move to a private room and good ol' temazepam helped the rest of the my hospital stay pass a little more uneventfully.

Because I only (!) had a mastectomy this time and not a node clearance as well this time, I only had two drains instead of three, one of which was removed before I left the hospital.

This photo was taken just before the nurse removed one of the drains - the important things first obviously! 

I've had the same kind of reconstruction as last time. A tissue expander which will be filled gradually over a period of weeks. The aim will be the replace both tissue expanders with permanent implants a few months down the line.You might just be able to see that the implant hasn't yet been filled. It currently resembles a party balloon that's still hanging on the wall two weeks later because no one can be bothered to take it down. It means I'm currently very lopsided and hibernating a lot of the time because most of my clothes look terrible and I can't currently wear my Spanx because the drain site hasn't healed. If I do go anywhere (usually to the hospital) I'm dressed like an aging Goth in baggy black clothes that hide my boobs (or lack of) and my menopause belly.

Because the veins in one arm have been annihilated by chemo, and the other arm is a no go because of my node clearance and risk of lymphoedema, I also had to have a cannula in my foot. This was thankfully was put in when I was under anesthetic and completely none the wiser:

They even cut a little hole in my sexy anti-embolism stockings to accommodate it.

The many attempts at cannulising me - both failed and successful - left me with some cracking bruises which haven't yet faded entirely three weeks later. Here they are in their glory when I returned home from hospital:

 I think the foot bruise definitely wins the prize.

Like last year, I came home from hospital with one drain, but unlike last year had a number of problems with it. The first came when I got up in the middle of the night to go to the bathroom and noticed that the pipe had become detached from the drain. Hence a 2 o'clock on a Sunday morning trip to A&E clutching a plastic bag full of drain bottle and drain bottle juice. I have to say that the staff at Birmingham City A&E were brilliant and I was in and out with a brand new drain bottle within an hour. The same can't be said for Rotherham A&E where I ended up on Good Friday evening after I noticed the vacuum had gone on the drain bottle whilst staying at my mum's. Basically, the drain bottle has to have a working vacuum on it to ensure that the fluid is drained from the operation site and in to the bottle.

After waiting for almost two hours without even being triaged, with a broken drain and fluid leaking out of the drain site and through my clothes, we were told there was nothing they could do at that hospital to help me and basically we should just sod off elsewhere. By this point I was crying very frustrated tears, so when a bystander chipped in with 'she needs t'calm 'er sen down' - he felt the force of my post-surgery-fed-up-with-cancer-and- hospitals-and-everything-else wrath. 

Over six hours later and a trip to Northern General Hospital in Sheffield, I was sorted out by a very thorough surgeon who basically glued the drain tube to my body and taped it up to create a seal to stop the vacuum on the bottle from failing again. 

Needless to say, I was not sorry to see the drain go when it removed (after much picking off of glue and tape) by my surgeon on Wednesday. Unfortunately, ever since then I've had quite a lot of fluid coming out of my drain site, meaning I'm constantly having to patch it up with dressings to stop it soaking through my clothes. Yeauch. Warning - gross photo of a dressing coming up:

Despite this, the rest of it seems to be healing OK (touch wood). Physically, I'm sleeping A LOT and still manage to feel completely knackered. My chemo brain seems to have inexplicably got worse since my op - the most recent example being me leaving my credit card in the chip and pin machine in the supermarket the other day.  And just to say - if you message me and I don't message back it's nothing personal (well depends who you are..;-)) - likelihood is I've just forgotten to reply - so please don't hold it against me! I really do appreciate people checking in and asking how I am.

Mentally, things perhaps aren't healing so well. I guess the assumption might be that because this time around it's something I've chosen to do, rather than the choice being forced upon me, it's easier. It really isn't. When there is cancer there, it's an easy choice to make - you just want the breast gone. When you've made a choice to remove what is at present healthy tissue with nothing wrong with it, the sense of loss is greater and more acute. I've spent a long time shedding tears and doubting myself and my decision. These feelings are even more pronounced when I look in the mirror and see what is left of my body. I can't tell you how much I wish that I had not had to go through this. But believe me, if I felt there was any other option that I could live comfortably with I would not have undergone this surgery. No one would put themselves through more pain, scarring, lack of sensation, risk of infection and countless hospital visits if they felt that there was another feasible option.

It's knocked my already fragile self confidence back down into the minus numbers. It's another loss of something that makes me female. Along with the fact I have to take medication that suppresses the production of the very hormone that makes us women, just to try and stay alive. I very regularly envy women with 'normal' reproductive systems - i.e. ones that aren't trying to kill them! 

Guilt is a very prevalent emotion right now too. I feel guilty for moaning about when lot when there are women who didn't even make it this far. I know I'm luckier than many of the women I've met over the last 18 months. I hate that I just can't be happy and thankful right now. Maybe those feelings will take over the negative ones the more time goes on.

I feel guilty for continuing to be a burden to my family. I feel guilty for still not having much to give to my friends, for not having 'got over this' yet - for still being the cancer bore. 

I feel guilty for slobbing around and sleeping a lot and basically not contributing anything useful to society. 

All this emotional turmoil and complete lack of confidence has lead to me being some what of a hermit at the moment. I'm more or less hibernating right now - like a tortoise. I definitely possess the energy and get up and go of one right now that's for sure! Someone wake me up when it's all over will you?


  1. Bless Your Mighty Heart, lil one.
    This, too, shall pass...
    and, then, dear,
    Upstairs you'll get a chest
    the size of Mount Rush-more.

    Hey, lil lady,
    I had a head injury at 15,
    losing a whopping 17%
    of my cranium with no speech
    and an insane walk
    (thus, exactly why
    I mountain bike everywhere).
    It aint like we go through
    our lifetime with no difficulties.
    We must OFFER that all2God.
    I did.

    God bless your indelible soul.
    I wanna see you
    in the Great Beyond, miss gorgeous.

    1. I had to #@!!☆ learn
      how to wok, tok, eat, sit-up,
      potty, even see
      (with my #@!!☆ eye going
      in the opposite direction
      early on).
      So we all got our crosses, lil one.
      Remember what I toll yoo, dear,
      and I'll see you Upstairs someday.
      Love you.
      I'll pray for your indelible soul.

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