Posts Tagged ‘cancer’

I hate Valentines day. Always have, always will. Here’s why. I’m not a fan of prescribed romance. Whether you’re hooked up or single, being told that you should be feeling love, lust or passion for someone on a certain day of the year is a recipe for disaster. Love doesn’t come in heart shaped box and my own experience of Valentines day isn’t exactly a bed of roses.

There are the ones who think that a Valentines meal is the perfect time to air all the grievances they have with your relationship – cue uncomfortable scene in restaurant; the ones who would rather be be buried alive than commit to any display of public affection; and those awkward ones you’ve just started seeing who suddenly become ‘unavailable’ on Valentines day lest it commits them to marriage, babies and a life in suburbia.

If you’re feeling sensitive about being single, Valentines Day is one of those dreaded annual events that reminds you of your non-conformity. Half of me strides haughtily down the fuschia-themed aisle in Sainsbury’s thinking ‘I’m glad I’m not part of that vomit-inducing consumer bullshit’, whilst the other half is being stabbed in the heart by a tear-stained rose. Sometimes I care, sometimes I don’t.

My favourite Valentines day ever, was one of those spontaneous nights that just kind of snowballed into something good. I went into Manchester with a friend to see Isobel Campbell at Night and Day. We hadn’t bought tickets, naively believing that we might get in. It had completely sold-out, so we went round the corner to Odd Bar. Here we encountered a pick-n-mix of after-work drinkers and misfits who had nothing better to do on a Tuesday night. Nobody copped off but there was a great cameraderie between people who were bonded by nothing more than the fact that they happened to be single on Valentines night. It ended up being a really great night.

Love definitely isn’t ‘in the air’ for me at the moment and my counsellor questioned me about relationships the other day. As you can imagine, having a relationship hasn’t been top of my priorities recently, and I have considered myself ‘off-the-market’ since my diagnosis in June 2012. Having cancer is a pretty legitimate excuse for being single. I’ve lost my hair (it has grown back), a breast (it won’t grow back but I’ve got a new one), my fertility (it won’t come back) and a lot more. Perhaps you’re worrying about being too fat or too thin but try throwing a mutilated body, infertility and a reduced life expectancy into the equation and suddenly that spare-tyre might not seem quite so important.

So how do you sell that one on Soulmates? At the moment I don’t care and my current priority is staying sane. I’ve only just come back to Manchester and I’ve been keeping myself busy with setting myself up with some cancer support. I thought I’d struggle to get support here, however the cancer support services in Manchester are really good. Along with my Macmillan support group, I’m also getting support from the Neil Cliffe centre at Wythenshawe hospital. Free massages on the NHS are one of the few perks of being a cancer patient.

I’m grateful for all the support the NHS has given me, however the one thing they can’t prescribe is a boyfriend. I was single before I had cancer so I can’t blame the disease for my marital status, however it does throw some interesting excuses into the mix. Aside from the scars and the asymmetry, I only have one nipple. On reflection this does seem like a daft excuse to take myself off the market. The nipple is next on my ‘to-do’ list.

I’ve never been a fluffy romantic however having cancer has turned me from a fantasist into a realist. I used to believe in unicorns and happy-ever-after, but the dreams I have now are firmly based in reality. Besides, life could be so much worse. I could be on a bad date in a crummy restaurant accepting a cheap rose from someone I never want to see again.

“I’m single because I was born that way.” – Mae West

The End…..nearly

Posted: January 25, 2013 in The Big C
Tags: , ,

I’ve had a severe case of writers cramp recently, hence the delay since my last post. I’ve started and not finished posts on various topics including – ‘My love/hate relationship with Facebook’ and ‘Magical Thinking & why having Cancer doesn’t make you  immune to house fires’. So, I’ll keep it brief.

Radio gaga

I’m in the final phase of treatment now – radiotherapy – and I’m sorry to report that it’s incredibly dull. There are no needles, blood, or medical emergencies. I’m told localised hair loss can occur, although I can safely say a hairy chest has never been a problem for me. Apart from the 2.5 hour round trip to hospital, my biggest grumble is that I look like a battery with all the + and – on my chest. I reckon I’m super-charged at the moment so if your car won’t start, do give me a call.

Where Now?

I feel like I’m in cancer limbo at the moment. I’m not sure whether to call myself a patient or a survivor. The cancer has gone, yet I’m still being treated for cancer. It’s a strange place to be in.

I’m battle worn and weary and in an ideal world I’d like to jet off to a sunny little island and quietly gather my thoughts. Currently that’s not an option, so the next best thing is a course at Maggie’s – ‘Where Now? –  designed for folk like me, nearing the end of treatment and pondering life after cancer.

The transition from cancer patient back to everyday life is a difficult one and the end of treatment can be a frightening time. Having lived through the nightmare of cancer treatment, survivors are often left feeling abandoned by the medical process.

Re-adjusting to life as it was before, can be problematic and many survivors struggle with mental health issues in the months and years post-treatment. Anxieties about recurrence are common, however there are often financial, emotional and physical issues to contend with.

These David Shrigley rabbits sum my up feelings about life since cancer

These David Shrigley rabbits know what they’re talking about

There’s pressure to fit back in and get ‘back to normal’ as soon’ as possible. You’ve survived, therefore you should be grateful, in fact you should be celebrating. There’s the added misconception that surviving cancer somehow makes you a better, stronger person (see Lance Armstrong before his fall from grace) and that you will return to everyday life with a renewed passion, screaming ‘I Will Survive‘ from the mountain-tops. When you don’t want or feel these things it’s hard not to feel like you’ve somehow let the side down.

There’s no doubt that having cancer changes you and if you’re lucky enough to survive, the best you can do is try and take something positive from the experience. I’ve lost so much but I’ve had time to work out what I do and don’t want from life . Health and happiness are top of my list.

When I wander out of my last radiotherapy session in a few weeks time, I will have had no less than 100 cancer related appointments since my diagnosis on the 1st of June last year. My role as cancer patient will come to an end and hopefully never be reprised. I’m not sure how I will feel when I walk out of that final appointment, but if I need it, I know that Maggie’s will be there with open arms.

The title for this post was something my friend Jenny said to me in a text & it pretty much sums up how I feel at the moment. Brian perfectly illustrates my current head-space in this clip from Spaced:

Brian and Art

Apparently I’m doing really well, at least so everyone keeps telling me.

Body

Physically I feel really good at the moment & I’m getting myself all geared up for chemo round 4 this Friday. I’m fasting today & like a marathon runner I’m hydrating before the event. I’m seriously contemplating wearing my Camelbak for the next week as I get so thirsty after chemotherapy that I need a constant supply of water. I’ve gone past caring what I look like, so a watering-hole attached to my derrière will only add to my ridiculous appearance.

A guy who works in the village shop asked if I was feeling okay when he noticed I was wearing a beanie on a sunny day. He was so nice I didn’t have the heart to say: “actually I’ve got cancer & I’m completely bald!” so I just said: ” yeah i’ve got a cold”. Nothing like cancer to stop a conversation.

I spent part of last weekend in Edinburgh catching up with friends and doing the festival thing. This was my first venture out into the big wide world since my diagnosis and I had a great time, although it was tainted. Does my wig look convincing and will people notice my PICC line? It was all just a bit too weird. I have many happy memories of going to the festival in my previous life so I found it difficult to relax.

On a lighter note, if you are going to the festival, I can totally recommend Nick Helm (mental, angry, hilarious but definitely don’t sit in the front row) and The Boy with Tape on his Face (silent but very clever & funny)!

Brain

Mentally I’m really struggling at the moment. The prospect of major surgery and uncertainty about whether the chemo is working have weighed on my mind for the last few weeks. The possibility that the chemotherapy might not be working didn’t concern me until the surgeon planted the seeds of doubt over a  month ago.

This might come as a shock to most of you, as it did to me, however chemotherapy doesn’t work for everyone. Everybody responds differently to the cocktail of drugs given during chemotherapy. If the FEC drug regime doesn’t work it’s likely they will bring my surgery forward. Changing to a different drug regime at this stage is too risky and will waste too much time.

I have to wait until next week, when I have another MRI scan, to confirm if the tumour is responding to the chemotherapy. I’m really worried because the lump in my breast doesn’t feel any smaller, so I have a meeting a with my consultant tomorrow to discuss some of my concerns.

image_1

There’s so much they don’t tell you when you’re first diagnosed with cancer. I realise now why they don’t. If they told you everything at once you’d probably just find the nearest bridge and jump. I have hormone receptive breast cancer and I’m pre-menopausal so there’s a 1 in 4 chance that my cancer will return. Not great odds.

This is the first time since my diagnosis that I’ve started to feel really angry. I just want my old life back: F**K CANCER by the way.

I watched Horizon’s Eat, Fast live Longer in earnest last week and it was not in vain. As someone living with cancer, I’m willing to give anything a try to increase my chances of survival. After watching Michael Mosley‘s fascinating documentary I’m pretty convinced that calorie restriction could be one of the answers.

Michael Mosley gave the low-down on fasting from an extreme 3.5 day, 50 calorie a day fast to alternate day fasting where you can literally eat what you want on non fast days. Both of these regimes seem quite extreme. The 3.5 day fast in particular is something only supermodels and masochists would attempt.  The alternate day fast again doesn’t seem very sensible. Pigging out on cheeseburgers then eating like a rabbit the following day can’t be good for you.

The 5:2 diet seems like a sensible solution. It involves eating whatever you want for five days and calorie restricting on the other two days. For women this means eating no more than around 500 calories and for men 600 calories.

My first attempt at calorie restriction today was surprisingly easy. A large bowl of porridge for breakfast & an apple filled me up for most of the day. I’d like to say the small portion of tofu & stir fried vegetables I ate this evening filled me up, however I actually felt more hungry after eating my evening meal than I felt all day. I would normally have snacked but satisfied my hunger with herbal tea instead.

The physical benefits seem to outweigh any of the difficulties endured when fasting. After 5 weeks of calorie restriction Michael Mosley lost over 1st in body weight, his body fat fell by 7% and circulating levels of IGF-1 reduced by 50%. His blood glucose also reduced to safe levels, as did his cholesterol.

The obvious benefit for me is a reduction in IGF-1 (Insulin Growth Factor).  IGF-1 is a hormone which we need when we are growing and levels are highest during periods of rapid growth however, a diet high in animal protein can increase levels of IGF-1 and research has demonstrated a causal link between an excess of this hormone and certain types of cancer.

The IGF-1 cancer-connection was familiar to me before watching this programme. Many with breast cancer will know of Jane Plant‘s work which examines the causal link between dairy products and cancers of the reproductive system. When her cancer returned for a fifth time, Jane looked to other cultures and realised that the majority of people of in the Far East where reproductive cancers are much less common, don’t eat dairy products. She made the connection between IGF-1 in dairy products and an excess in our diet, leading to cancers of the reproductive system.

Interestingly, Tamoxifen, the drug commonly given to pre-menopausal women after treatment for breast cancer also works by lowering circulating levels of IGF-1.

I’ve scoured the internet since watching this programme and found much evidence in support of fasting and cancer prevention. Genesis UK in Manchester studied the effects of intermittent fasting on women at risk of breast cancer, whilst trials in the US have looked at the benefits of fasting when combined with chemotherapy. Studies show that whilst fasting helps support healthy cells during chemotherapy, cancerous cells are still sensitive to the effects of the drugs. If something as simple as fasting can enhance the effects of chemotherapy, this is an area that definitely needs more research.

Since my diagnosis I’ve cut out most dairy products from my diet although I have a sneaky bit of goats cheese now and again. I’m on the way to becoming vegetarian but not yet cut out the Sunday roast. After watching this documentary it looks like I might also be converted to the 5:2 way of eating. For most, this diet is a preventive measure but for someone like me, already living with a life threatening disease, the outcome could be much more significant.

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