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 I know some people find this a strange way of thinking, but prognoses are based on often outdated statistics and can have little relevance to individual situations.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?

Feeling the Fear (and other things)

NB: I wrote this post 2 or 3 weeks ago closer to my diagnosis so it may sound very bitter in places! Just putting that out there....

There are a whole lot of feelings and emotions after a cancer diagnosis. For want of a better description (yes, I’m falling back on clichés again) it’s a rollercoaster. Just not as fun. Although, considering my absolute fear of heights and strong aversion to rollercoasters, perhaps it’s slightly comparable. It’s also exhausting. Like a rollercoaster you have to peddle yourself. Despite having one of the most serious illnesses around, I don’t feel ill (although this will be very different once treatment starts!). I just feel exhausted. Mainly due to the insomnia and this sodding pedalo rollercoaster.

I’ve tried my best to expand on this rollercoaster below:

Fear

This is probably the overriding emotion right now – The Fear. It ranges from moments of total abject terror to an ever present level of anxiety. Let’s call this Canxiety (see what I did there??). I’ve always been an anxious person, only now I really have something to be anxious about! This Canxiety is ever present at varying levels and quite regularly stops me sleeping even though I’m bloody knackered what with pedalling this bloody rollercoaster.

The moments of total terror hit when they just feel like it really. The most recent one was in the middle of a restaurant when I burst in to tears and just kept thinking ‘I’m going to die aren’t I? This thing is going to kill me’.

They quite often also hit in the middle of the night, leaving me wide awake at three in the morning with my own mortality staring me in the face like some effing terrifying poltergeist.

The Fear is there constantly, all the time. It never ever goes away. I wake up in the morning and the first thing that enters my head is ‘I’ve got cancer. Sh*t. I‘ve got cancer’. It’s the last thing in my head before I got to sleep (although sleep is not that forthcoming right now!). It’s there all the time, ever present, with depressing and anxiety inducing thoughts running through my head like some demonic sodding hamster on its wheel (my brother used to have one of these – its eyes glowed red and made the most awful noise like an animal possessed.)

Every so often I’m also stopped short by the thought that this thing is still in my body. This unwelcome lumpy guest, this invader. My initial reaction was to fall at the consultant’s feet and beg for them to cut it out there and then. I wanted to take a knife and hack off my own boob. I still feel like that sometimes (cue the hiding of the kitchen knives).

I’ve started having panic attacks too. They hit when I least expect them. I won’t even really be thinking about it too much. Then my head starts swimming, I start panicking and I can’t breathe. I also get the shakes and look remarkably like Peter Barlow currently does on Coronation Street. They go off. Eventually. 

Everyone is going to die right? But it’s not something you dwell on every day, all the time, hanging over your shoulder like a rather possessive and clingy boyfriend (unless you’re a Goth, I guess). Unless you’ve been given a cancer diagnosis. Then its massive slap in the face, a huge screaming wake up call, it invades your thoughts all the sodding time. And as I said, it’s bloody exhausting.

 Guilt

I feel guilty. A lot. This diagnosis doesn’t just affect me, it affects everyone around me. I feel guilty that at least for a few months I’m probably going to be taking a lot more from my friends and people who care about me than I can possibly give back. I feel guilty that I am going to have to take people up on those offers of ‘if there is anything I can do please just let me know’. For someone who rarely reaches out to anyone for anything, this is going to be incredibly difficult. I feel guilty that I’m not going to be the same person I was before all this shit and worried that people around me are going to get fed up and walk away.

I feel guilty about what this is doing to my parents. How I can see my mum’s heart breaking and can’t do anything to make it better. At no point did I ever envisage this happening. My parents are old age pensioners, my dad's almost 70 years old for Christ’s sake. I should be the one looking after them at this stage in their lives. Yet here we are, with my mum driving up and down the M1 on a regular basis to ferry me to and from my plethora of hospital appointments. It’s not dignified having to have your mum shower you and wash your hair at 32 years old because you can’t move your arm as someone’s had a good old dig in there and pulled out some of your lymph nodes (more about this later). And that’s only the tip of the iceberg. There is a lot, lot more of this type of thing to come and letting go of the guilt is going to be very, very difficult.

 Anger

I used to be quite an angry person, although I‘ve mellowed a bit as I’ve got older. But cancer turns you in a massive green incredible hulk. I’m angry right now. You probably wouldn’t like me when I’m angry. But tough titty!

I’m angry about the injustice of it all. At the risk of sounding like Harry Enfield’s Kevin, it is SO UNFAIR!!

I’m 32 years old. I should be thinking about how I can climb that next rung on the career ladder, worrying about how I’m never, ever going to be able scrape the deposit together to buy a property by myself, ranting about the fact that so and so in the office never washes their own cups up, getting excited over the next date with someone a bit special, pondering over whether the outfit I’ve chosen for Friday is a little too over the top for our chosen venue or spying on my ex-boyfriends profiles on Facebook and wondering if that girl he’s just added is his new ‘love interest’ (this is all hypothetical, by the way). I should be having those moments of pondering the nature of existence in a first world problems kind of way – e.g. is this all there is to it? Should I pack it all in and do a belated backpack around the world thing? Or volunteer in some deprived country to help people worse off than myself? Blah, blah, blah. Instead, I’m facing months of gruelling treatment, illness, uncertainty, fear and essentially a fight for my life.  At 32 years old. And it’s so, so unfair.

I’m angry at people around me saying and doing the wrong things. I know this is harsh and irrational and cancer is not an everyday occurrence so no one knows really what to say or do when faced with it. I know I wouldn’t have if it was someone else close to me in the same position. But really, I don’t feel like I have the energy to deal with other people’s inadequacies right now. And people who know better than me. That’s really annoying. ‘Well, how do you know you’re going to lose your hair? So and so had chemotherapy and they didn’t lose their hair’. Trust me, I know. I’ve sat up hours and hours reading and talking to other people in the same position. I didn’t just get handed this diagnosis and skip off in to the sunset with the intention of staying in a state of blissful ignorance. Although, I am going to stick a caveat on this and say that I also have a lot of lovely people around me who have been just fabulous and supportive.

I’m angry at life just going on around me when I’m stuck coping with this shit. I’m angry at people who still have normal, cancer free lives. Angry at people posting on Facebook about what holiday they’ve just booked, or what a fabulous time they are having with their BFF at so-and-so’s wedding, or how many weights they’ve just managed to lift or how fucking tired they are. Yes, I know is more irrational, unfair anger but you know what? Life isn’t fair. If there was ever a time when I should be allowed to have stupid, nonsensical, being mad at things I shouldn’t be moments, then this is it.

I’m angry at the doctors who sent me away last year. I’m angry at myself for trusting them and not pushing to be sent for further tests. My consultant says she doesn’t think the lump has been there for a year as she would expect it to be bigger, but that really we won’t ever know. This bad boy doesn’t always do what you expect it to. According to my oncologist, tumours can be growing for up to 8 years before you actually feel them. Shiiiiiiiiiitttt!!

I’m angry at stupid bloody ‘breast cancer awareness’ games on sodding Facebook. Really? How is posting cryptic statuses about using your boobs getting you out of speeding tickets supposed to raise awareness of breast cancer? Maybe I should respond with ‘well at least one of yours isn’t trying to kill you’. What a load of effing toss. Donate to Cancer Research or spend 10 minutes checking your boobs whilst you’re laid in bed this evening and text your friends to remind them to do the same if you really care about breast cancer awareness. Don’t sit there using it as it gimmick to play silly, vacuous games with your mates on Facebook.

I’m angry about what this bastard disease has already taken away from me and what it may take away from me. My health, my fitness, relationships, friendships, possibly my fertility, my social life, my hair …… my future as I saw it.

Cancer is a bitch. Its sneaks in and f*cks everything up. It steals all your plans and the way you saw things panning out. It creeps up behind you and rugby tackles you to the ground. And then give you a well-aimed kick in the head for good measure. I’ve had many ‘why me?’ moments. ‘What did it do to deserve this?’ etc. etc. I haven’t always looked after my health the best I could have (I was a university student, come on! I lived off pints of snakebite and black and Super Noodles), but ironically my diagnosis has come at a time when I am the fittest I‘ve ever been. I stopped smoking and started running two years ago. I ran a number of races last year, including two half marathons. I recently smashed by PB for the 10k distance. I run about 5-6 times a week. I can’t remember the last time I had a cold. I have so much more energy than I used to. Cancer isn’t picky. It’s completely indiscriminate. It doesn’t care who you are, where you’re from or what you did. Bit like the Backstreet Boys, only considerably more lethal.