Enough

I'm fed up of being in pain.

I'm sick of hot flushes and being menopausal at 33 years old.

I'm tired of having a deformed body and hating my reflection in the mirror.

I'm sick of cancer taking my friends.

I've had enough of side effects.

I'm tired of aches and pains.

I'm sick of anxiety and worry.

I'm fed up of my friends getting bad news after bad news.

I'm tired of men treating me like a leper.

I'm sick of feeling unloveable.

I'm fed up of feeling fat and ugly.

I'm sick of  being told ' well does that really matter in the grand scheme of things?'

I'm tired of brain fog and memory issues.

I'm tired of being tired.

I've had enough of feeling lonely.

I'm sick of people's assumptions that 'it's all over now'.

I'm tired of being brave.

I've had enough of being a shadow of the person I used to be. 

FEC-ing hell! - Number 1

So my chemotherapy regimen is what is affectionately called FEC-T and will consist of three session of FEC and three session of Taxotere in 3 week cycles, providing all goes to plan. The plan is to shrink the tumour so that only part and not my entire breast need to be removed.

I had my first session of FEC on the 26^th of August and I can safely say I was terrified. I had a session with a chemotherapy nurse the week before, where I was read the chemo riot act – i.e. when to call the hotline, what is classed an emergency, what side effects to expect etc. However, she was really lovely and it sounds as though I was quite lucky. My friend’s chemo info session has consisted of a PowerPoint session in front of a group of people, smattered with the words ‘emergency’ ‘fatal’ and ‘life threatening’. Nice.

The nurse basically told me to carry on as normal. When I asked if I could still have a glass of wine (the important things!) she said ‘of course – you can even go for a night out down Broad Street if you want to’. Not sure what’s more terrifying – chemotherapy or a night on Broad Street!

The oncology waiting room was full due to the bank holiday the day before – those who would have had their session the previous day were all shoved to the Tuesday. Yes folks, whilst most people were enjoying their bank holiday, perhaps having a trip to the seaside or on all dayer down the pub I was crapping myself about having a toxic cocktail of chemicals pumped in to my veins.

As usual, my presence in the oncology waiting room brought down the mean age somewhat. We sat and waited. And waited. And waited. I had an appointment to see the oncologist before starting chemotherapy, mainly to ask about the results of my sentinel node biopsy. By the time we finally went in to the oncologist’s room I was once again doing my Peter Barlow impression. Cue very sweaty palms.

The waiting part, as most women in the same position as me, will attest is extremely difficult. At the moment, time just seems to be filled with endless hospital appointments, tests and waiting for results. It turns out there was a tiny bit of cancer in the first node they removed and none in the other three. Not exactly the news I wanted to hear – no node involvement would have been preferable. But the oncologist was unconcerned and told me it would just slightly alter the surgery they planned to do after the chemotherapy.

After giving me the go ahead to take some diazepam whilst I sat and did some more waiting, I downed two and sat in the waiting room eventually feeling a little calmer as they kicked in (yey for diazepam). Finally, after about four hours since arriving at the hospital, I was called through to the chemo unit to get the ball rolling (or the drugs flowing).

The chemo nurses are remarkably cheerful considering they spend the day injecting toxic drugs in to poorly sick people. I was given a lovely seat next to the window looking out on to the garden. After putting the cannula in one of the veins on my hand which had to be coaxed out using a heat pad, we set about drenching my hair in water and conditioner ready for the cold cap. I had my hair cut off in to a bob to reduce the weight on my follicles and tried slightly unsuccessfully to get it closer to its natural colour as in the event of my keeping my hair, you can't dye it whilst having chemotherapy and I wasn't looking forward to having dreadful roots on show. When you are using the cold cap, you have to sit for half an hour before they start injecting the epirubicin (the E out of FEC) which is the one that makes you lose your hair, during the time it's being administrated and for two hours after. So it extends the time you have to be at the chemo unit for but it's worth a shot. They strap on this very fetching pink cap that looks like you are about to jump on a horse for a gallop and then switch the machine on. I have heard it described as a prolonged brain freeze and the first 20 minutes are the hardest but to persevere.

Without wanting to put anyone off who is thinking of using the cold cap, the first half an hour was excruciating. I desperately tried to distract myself by playing a game on my I pad but all I could think about was shouting to the nurses to take the damn thing off my head! It took all my strength and the thought of a bald head not to. After about half an hour I began to get used the sensation although the rest of me became incredibly cold! I did take my slanket though. First time I’ve actually found a use for it! Next time I'm kitting myself out with scarf, gloves, socks the works!!

After the epirubicin comes the next two drugs – the fluorouracil and the cyclophosphamide. The remarkably cheerful chemo nurse explained to me every time the next toxic drug was about to be injected in to my veins. Due to our late admittance to the unit and the fact that I had at least an hour still to go with the cold cap once the drugs had finished being injected, we were the last ones there with the cleaner mopping up around us. It felt a bit like being a pub at closing time only without the massive meathead bouncer stomping round shouting 'finish your drinks folks'. Once the cold cap was done I had to sit for ten minutes to wait for my head to defrost (I'm not joking) then I ran for a pee. Although I had been warned that the epirubicin turns your wee pink for a little while it was still a bit of a shock to turn round and see rose wine coloured pee in the loo. It seems to be a regular occurrence at the minute to have pee looking like sickly alcoholic drinks. I'm gradually forming a list of booze I can never quite look at in huge same way again. Sigh.

So, I was sent home with a huge goody bag. Unfortunately it wasn’t filled with birthday cake and party hats, but various different anti-sickness medications, steroids and bottles of Difflam mouthwash (awesome stuff). In the same way I would to try and stave off a hangover, glugged a large amount of water over the next couple of hours as I'd heard this would help flush the drugs out and minimise any side effects. Apart from feeling quite nauseous over the evening I was ok - not vomiting yey! I cleaned the toilet though in advance just in case I would end up having my head down it.

Since then I’ve mostly just had this weird floaty feeling occasionally, a bit of a sore mouth, which was sorted by the Difflam, and feeling a bit tired. I’ve still been running but its felt a little more difficult. Oh, and I did get a stinker of a cold which led to me being in hospital for a night whilst they checked me out. The Canxiety has hit now and again but I’m trying to learn to control it with the help of my friend citalopram. Round about now is the time I’d expect my hair to start falling out if the cold cap hasn’t worked. But it’s still there so far although it feels like there are more hairs in my brush than normal. But FEC it! Bring on the next one!!

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.