Posts Tagged ‘cancer gold-card’

I’ve really struggled with writing this post. Not because I don’t have anything to say, but because I find it easier to write when I feel like crap. The emotionally charged, my world is ending, high-octane drama just pours out. When nothing is happening it’s much harder to come up with something newsworthy.

I realise I’ve been slacking so decided it was time to put pen to paper again. I’ve also realised that I miss writing. Apart from keeping family and friends in the loop, it’s very cathartic. It keeps me sane.

I had my third cycle of chemo last Friday and after a couple of days grace the nausea & fatigue have hit with full effect. I can’t decide if it’s getting worse or if of my brain conveniently erases all previous chemo memories. I really hope it’s the latter.

I talk about chemo assuming that you all know what it involves but I’m guessing most of you aren’t personally acquainted.

It goes like this. I sit in hospital once every 3 weeks for around 1.5 hours while I have 3 drugs, the FEC combo, pumped into me intravenously. I don’t feel much at the time although one drug makes your pee red and another gives you a nasty ice-cream headache. If a nurse is on hand, she’ll water it down with saline to soften the blow.

The nurses in the oncology unit are lovely and always makes me feel like this whole cancer thing isn’t such a big deal. Cancer brings out the darkest humour in people and there have been some comedy gold moments in the oncology ward. One nurse in particular, Nurse P, is very funny:

On being asked if I would be happy to take my GCSF injection home to inject myself:

Me: “mmmm, no I can’t even look at the needle when you’re doing it”

Nurse P: “neither can I, I just close my eyes and hope for the best!”

After 1.5 hours, I’m sent away with a cocktail of drugs to ease the worst of the symptoms. I usually feel a bit groggy afterwards, but the worst side effects don’t usually kick in until 3 or 4 days afterwards.

I can’t think of any other way to describe it, other than feeling like you’ve been poisoned. Your body feels toxic, you have an unquenchable thirst, you feel sick, you lose your appetite and did I mention your hair falls out!? Then there are the stomach upsets, constipation and blinding headaches. I also had hideous mouth ulcers on the first cycle but these have lessened since getting the GCSF injection. Think the worst hangover and you’re half way there.

Fatigue is one of the biggies and physical exertion is a big no. I tried doing a wee hill with my mum a few days after my last chemo session and I felt like I was going to collapse, which was pretty scary but found out this was probably due to anaemia (not enough red blood cells). So, no mountains while I’m having chemo.

Chemo does weird things to your brain as well as your body. As well as the general ‘chemo makes you feel like shitto’, there’s chemo-brain and chemo-glow. The brain-fug is slightly disconcerting. A few examples: trying to make a phone call on my make-up compact and trying to withdraw cash from an ATM using my Boots Advantage card. My speech becomes a bit dyslexic and words get all mixed up which does have its comedy value.

Another weird and wonderful side effect of chemotherapy is that it makes your skin look great. The week after chemo I wake up looking all sun-kissed and healthy in a Scottish kind of way: the infamous chemo-glow. My skin has never looked better and my eczema has pretty much cleared up too. Every cloud.

The delightful side effects usually dissipate after around a week, when your body starts to repair the damage done. I make it sound horrific, and it’s not great but I did expect it to be a lot worse. Considering every cell in your body gets annihilated, it’s no wonder your body reacts in the way it does.

I joke about the physical side effects of chemotherapy & the mental cloudiness that accompanies it, however I am anxious about my treatment and my prognosis. I’m half way through my chemotherapy but at this stage they can’t even tell me if it’s working and this won’t be confirmed until I’ve had another MRI scan in a month’s time. If it’s not working they will bring my surgery forward. It’s on my mind 24-7.

On the upside I got my new hair last week. I was really losing hope with wigs until I tried on Stevie (all the wigs have stupid celebrity names). She’s perfect, nearly the same colour as my hair and she looks pretty natural, at least I think so. It took my brother at least an hour to notice I had hair, even though he’d seen me bald the weekend before, so it must look pretty convincing. In other hair news, the tiny bit of baby hair remaining on my head is growing and my eyebrows, which I had threaded before starting chemotherapy, are still exactly the same shape. With any luck I may never have to get my eyebrows shaped ever again.

I’m now half way through chemotherapy and the end is in sight. Three down and only three to go.

 

My hair is nearly gone now but I’ve still got hair on the brain. I was seeking salvation in music and for some reason I got stuck on songs about hair so I started putting together a little farewell compilation, my coiffure concerto. More on that later.

Bad Hair Days

Since losing my hair I’ve realised it’s significance, or lack of it, is more than skin deep.

This really hit me with the headscarf experiment. I was reluctant to wear a headscarf, because for me they identify you as someone who is sick. You might as well have a big light on your head saying ‘I HAVE CANCER‘. My not very scientific research, which involved wearing a headscarf for around a week, verified this. People give you ‘the pity look’ and children eye you suspiciously. Women look odd with no hair and a headscarf does nothing to disguise this.

I should add that my brief dalliance with headscarves was heavily influenced by the fact that they just don’t suit me. I look like a sausage in a blanket.

Losing my hair has made me painfully aware how inextricably linked our hair is with our identity, in particular our femininity. From the moment we pop out, our fuzzy little heads are filled with myths, legends and fairy-tales of beautiful long-haired maidens overcoming adversity and inevitably being saved by a valiant prince: you never hear about short-haired princesses being rescued in fairy-tales. From lady Godiva & Rapunzel to modern-day hair royalty such as Jennifer Aniston and Sarah Jessica Parker, having good hair gets you places. They’d all be nothing without their glorious manes.

Historically a shaven head has always had meaning, and in the case of women this is largely negative. From biblical times head shaving has been used as a tool of female oppression and has been used in countless wars as a punishment against women in the form of humiliation and de-sexualisation. Women who choose to shave their heads, or who lose their hair through illness are often deemed as mad, bad or dangerous. Britney Spears, Sinead O’Connor and Gail Porter have all been labelled as such.

Whilst fairy-tales are full of long-haired maidens waiting to be rescued or saved, Ellen Ripley‘s character in Alien turns this on its shaven head. As well as being one of the coolest film characters of all  time she’s the ultimate feminist icon. She’s gutsy, strong and maternal and doesn’t rely on men to rescue or save her. She kicks ass, the perfect role model for women of all hair lengths.

Hair today, gone tomorrow

Baldness is something many men have to contend with in their lifetime but, when men go bald, they usually have a few years to get used to the idea: I had less than two weeks. I underestimated both the speed and impact hair loss would have on me. When doctors told me I would definitely lose my hair I didn’t believe them: what do they know? A lot more than me it would seem.

For women, head shaving or going short is viewed as symbolic and liberating. I definitely felt lighter after having my hair cropped but this was borne out of necessity and practicality rather than empowerment. I didn’t mind the crop and think it actually quite suited me, however the difference between having a crop and being bald is HUGE.

People try to make light of it. The common retort is ‘oh it’ll grow back’. Knowing this doesn’t make it any easier. Looking at yourself in the mirror and seeing a bald, patchy mess where once you had tumbling tresses isn’t easy. Having no hair makes you feel naked, vulnerable and unfeminine. My head gets cold now, so for both my sanity and comfort it’s always covered, even in bed. I’ve had to make peace with my head but I’m counting the days until my hair grows back.

My laissez-faire attitude to hair loss means I’ve had little time to sort out wigs and hats. I thought it’d be really easy to buy some cotton beanies but these were on the slow boat from China. I’m all beanied up now, however I still carry a scarf for emergencies & gold-card moments.

There are of course a few bonuses with hair loss. Not having to fork out for hairdressers & hair products means I will save money. Deforestation is also no longer part of my routine. Thankfully I still have my eyebrows and lashes, although washing my face has become a delicate operation. I’m waiting for the day when I look down and find my eyebrows staring back at me from the towel.

Back to music: I thought I would struggle to find any hair-loss-tunes, however there are surprisingly more than you’d expect. I was shocked to discover India Arie singing about Breast Cancer and Chemotherapy in ‘I Am Not My Hair‘. The last verse is a tribute to Melissa Etheridge who sang bald at the Grammies after treatment for breast cancer; surely the only time Breast Cancer and Chemotherapy have been name-checked in R & B, if not in music.

I’ve been on a nostalgia trip recently, listening to lots of stuff from my youth, probably something to do with living with my parents, so my swan song to split ends is Pavement’s ‘Cut Your Hair’. Like I said, I’ve got hair on the brain and this is just a great song about hair.

Here are a few more hair harmonies I discovered along the way.

PJ Harvey – Hair

Hank Ballard – How You Gonna Get Respect

India Arie – I Am Not My Hair

Gomo – Proud to Be Bald

The Beach Boys – She’s Goin Bald

Wishbone Ash – Blowin Free

The Lovin’ Spoonful – Baldheaded Lena

Rush – I’m Think I’m Going Bald

Lightnin Hopkins – Bald Headed Woman

Nina Simone – Four Women

I was waiting for something interesting to happen before I wrote my next post as I thought it could get pretty boring for everybody if my treatment was uneventful.  Fortunately, the past ten days have been anything but dull.

Since having my first chemotherapy cycle on the 22nd June I have: completed a wedding dress; been stuck on a train in ‘floodgate’; been admitted to A & E and moved to a different country. Let’s just call it really bad timing.

The first few days after chemo went pretty smoothly. I felt nauseous and lost my appetite but had some anti-emetics to stave off the worst. I wasn’t tired and I actually felt slightly giddy. I’ve since found out that this was probably due to the steroids I was taking. All of the pills I’ve been taking have side effects but somehow they forgot to tell you this. The Domperidone which they give you for nausea makes you constipated & the steroids mask the fatigue that your body would naturally feel after such a huge chemical onslaught. I chuckled when the nurse asked if I’d been taking my Domperidone. Say it quickly in a Scottish accent and you’ll see what I mean.

It wasn’t until 5 or 6 days after my first chemotherapy cycle that I started to feel the full effect. I had a technical issue with my Picc (IV) line and this really knocked me. I woke to find it was leaking. It was all contained, however it’s not pleasant watching your own blood leak from your arm. I ended up spending a few hours in hospital getting it fixed & felt pretty dreadful for the rest of the day. This was the first time I’ve felt really sorry for myself. Up until Wednesday I’d been doing really well, however the steady flow of chemicals; the Picc line in my arm; and the examinations & scans that weren’t part of my previous life, were a stark reminder that this is actually quite serious.

Loss of control is one of the biggest hurdles you have to contend with when you have cancer. You surrender yourself to medicine and hope they can make you better. The NHS – you are AMAZING!! – do a pretty good job and make everything as pleasant as possible but it’s still really tough being continually poked, prodded & examined by people you don’t know.

After black Wednesday, wedding dress complete, I headed back down to Manchester to say my final goodbyes and move out of my house. My 3.5 hour train journey was rudely interrupted by epic floods in the north of England. As they say ‘it never rains.’ The train stopped in Carlisle so I hopped on the only train going anywhere. Luckily for me this happened to be Leeds, so my journey wasn’t too traumatic, just a few hours later than planned.

I feel like an extra in Casualty at the moment as more medical drama was to follow. My trip to Manchester unfortunately coincided with my neutropenic – not necrophilic as I keep wanting to call it – phase. Chemotherapy kills lots of cells, including the good ones. Neutropenia happens when your white blood cell count drops and this lasts for around a week, meaning that you have little or no protection against infection.

I’d started with a sore throat on Friday night and woke up feeling out of sorts on Saturday. I had a fuzzy head and found my speech was getting all mixed up. In a previous life I’d have called this a hangover but on this occasion I knew this wasn’t the case. This was a totally new symptom for me, so after feeling lousy all day I eventually called the Oncology department at Ninewells & they advised me to go straight to A & E in Manchester. This sounds really melodramatic but a slight cold or infection during the neutropenic phase can be life threatening.

My cancer gold-card got me straight to the front of the queue at A & E and I was whisked straight through to my own wee room, away from all the saturday night crazies at MRI. After numerous blood tests, a chest x-ray and a 3 hour wait they told me I could go home. My white blood cell count was very low & I was anaemic but they’d found no signs of infection. The young doctor assured me I’d done the right thing & sent me away with a course of antibiotics to add to my growing collection, which of course I didn’t take.

Yesterday I enjoyed my first day back in Scotland doing absolutely nothing. No work, no sewing, no train journeys and no medical dramas. Freedom. Most symptoms seem to have subsided for now & I’ve got my appetite back. I’m finally getting used to my Picc line & I no longer feel like I have a wooden arm. I did try doing some yoga today but decided it’s just too risky. There’s not many positions that don’t involve stretching my arms so I’ll just stick to walking for now. I don’t mind though, it’s all temporary. I’m feeling okay and that’s good enough for now.

I was going to write a list of positives and negatives about being ill, but the negatives make grim reading, so in the spirit of positive thinking – because we all know that cures cancer – I’ll stick to the good ones:

1. My mum ironing my pants for me – she’s amazing, she irons everything! Pants aside, when you’re feeling lousy it’s nice having people to ferry you to appointments, look after you and cheer you up. My family & friends are pretty good at that.

2. Chicken soup. It’s so clichéd but on a bad day last week, my mum made chicken soup. Like the pants, it worked.

3. An appreciation and lust for life that I never had before. I was too busy. I want to live, it’s quite simple.

4. You get lots of presents & flowers. I’ve been on the receiving end of some pretty staggering acts of kindness recently. Folk have even offered me the hair from their head. People are good.

5. You get to jump to the front of most queues. Typical conversation:

Receptionist: “sorry we have nothing for the next week or so”

Me: “I have cancer”

Receptionist: ” Ok are you free now? We’ve had a cancellation”

Result! I call it ‘The Cancer gold-card’.

6. Catching up on all those box sets/films I’ve been meaning to watch. Bring on The Wire, Boardwalk Empire, Band of Brothers & Breaking Bad!

7. Indulging in some new hobbies. On my list so far:

-relearn the guitar. Previously I got to about 3 chords but never progressed beyond sore fingers

-improve my knitting skills beyond objects made of squares

-do some sewing just for fun as opposed to hard cash. That would be a novelty.

8. Having time to do some life admin. Investigate new filing systems, do some emotional housework & sort out that E-bay pile.

9. Taking a break from vanity. I’ll have to get used to looking at a very different me in a few months time. Apart from anything I’m going to save money on hair products.

10. Time out from life to simply contemplate and reflect. I’ve not had much time for that recently so I’m looking forward to whole year of daydreaming.

11. A late addition: listening to the Archers every day. I can’t tell you the names of any of the characters but, like beards, strangely reassuring.