Wednesday, 27 April 2011

Survival of the Fittest

Let's talk private health insurance. For those of you who don't live in the UK and are used to having fights with tight-fisted insurance companies who are happy to take your money but then quibble over costs when you're actually ill, look away now. And apologies if this all sounds too much like Groundhog day.

For us residents of the British Isles, until fairly recently private health care was for those fortunate few who were probably too well-fed and too well-bred to ever need to use it. For most of us, we had no choice but to rely on the NHS - a national institution that is still perceived by the general public as a free service, even though it's exclusively funded using taxpayers' money. The NHS boasts world-renowned doctors and often attracts nurses and health professionals from around the world who come to work in its hospitals. It's a well-respected institution and has been around since 1948. But these days, due to mainly the actions of a Thatcherite government, it's under-resourced, underfunded and too bureaucratic. For the patient this has meant long waiting lists, overstretched and stressed out doctors and less than adequate standards of patient care. The media love to report stories about women who end up having to give birth in hospital toilets after being told there's no space on the labour ward and will tell of misdiagnosed cancer patients who spent months complaining about a headache, only to be sent home with a packet of paracetamol.  It's little wonder then to discover that more and more patients are opting to go private.

But this in itself has its own problems. Take a few weeks ago. My kind-hearted oncologist who could see that every so often, at the thought of not being around to take care of my virtually newborn babe, I would dissolve into a flood of tears, decided that I might benefit from the services of a psychologist. At this stage of the game, I am open to all suggestions. So far, I've dabbled in acupuncture, chinese medicine, hypnotherapy, reflexology, support groups, visualisation methods, meditation, massage, journaling and vitamin supplements and the list goes on. I figure that when the grim reaper finally rears his ugly head, at the very least I'll be able to say that I tried everything that was available on the market. So I agreed to see the psychologist, but unfortunately the experience was not a happy one - see In Defence of Denial post).

I put it down to an un-meeting of minds and thought no more about it. But a few weeks later, I receive an invoice from the psychologist in the post. I had worried whether my insurers would pay for the service since they had in no certain terms told me that I would only be receiving herceptin until the end of the year, but the psychologist thought that they probably would. In any case, I had to sign a letter to confirm that I would pay her in the event that they didn't. Which I did, as I felt too embarrassed not to sign. 

So when I received her invoice, naturally I assumed that the insurers had refused to pay and when I contacted them, they confirmed this. Even though they were very sympathetic about my current diagnosis (there's nothing like the mention of the C word to get the tone of people's voices to lower and act as if you already have a few weeks left to live), apparently if I'd read the terms and conditions I would have noticed that I should've been referred to a psychiatrist before seeing a psychologist. 

er, why ?

Those are the rules, apparently. Perhaps I have a too simplistic view of mental health. I always thought that psychiatrist = severe mental health disorders, that possibly need to be controlled by medication, psychologist = less severe emotional problems and a more touchy-feely approach all round. But I could be wrong. But still, it all seemed wrong. Here I was, struggling like any sane person would be, with an enormously devastating diagnosis and I couldn't even talk to a shrink about it without being fleeced for a £150 fee. So in typical fashion, and in light of my view that the pen is mightier than the sword, I wrote them a letter of complaint. In fact, I wrote three. I sent two to the most senior people who had decided that I should pay. I asked them how they would feel if they'd just been diagnosed with secondary breast cancer with a 15 month old baby to look after. I told them that on the NHS, I would never be asked to pay for the services of a psychologist, especially after a diagnosis of cancer. I then contacted my company's HR unit and wrote to them too. I sent my oncologist a text and asked if she could write a letter in my support and then I e-mailed the psychologist and asked if she'd ever heard of such a silly rule. 


After all of that, I felt written out. I didn't expect to win and began to make plans as to how I was going to pay for the fee. £150 was three pairs of summer sandals that I surely wouldn't be buying this summer.

But, surprise, surprise, win I did. I even received a personal phone-call from one of the insurer's staff who told me how very sorry she was to hear about my situation. As a gesture of goodwill, they would pay for the fee, but not for future sessions. It was a great result and I thanked them. But I somehow didn't feel elated. What if I hadn't bothered to write in ? I would've been £150 poorer at a time when I really can't afford to be. What if there's someone else out there who has been similarly asked to pay £150 but who is so busy struggling with a cancer diagnosis that they're unable to respond in a rational and assertive way ? It seems that even in the private world of healthcare (which should be all about customer care and compassion) only the fittest survive. I should campaign for a change in their policy, but to honest, I'm too busy dealing with my own day-to-day life to do so. And so, the nonsensical rule will stay and be enforced until another David turns up and decides to take on the mighty Goliath. But until then, I'll be steering well clear of psychologists for the time being.

Tuesday, 26 April 2011

Sometimes less is more... Ole !

Let's leave the frivolous world of fashion and beauty for a while and concentrate on more serious issues... This week I've mostly been visiting doctors. I had an appointment recently with the surgeon who will be removing my sternum. I'm told that the best way of erradicating the affected area is to remove it completely. Apparently it's uncommon for surgery to be offered for metastatic breast cancer, and of course there's no guarantee that the dreaded disease won't rear it's persistent head again. But at least, I still have this as an option. Even though the thought of parting company with a part of my body that I've barely given a second thought to is in itself, strange.

At first, I was aghast to hear this news. I found myself considering my sternum. I decided that I quite liked having a breastbone. It felt sturdy and comfortable, rather like a favourite old armchair that's always been around.  In the past I was told that in addition to the sternum, he'd also need to remove the surrounding fatty tissue and a small part of my lung. Now it seems that less is more and I'll only need to have sternum and brown fats removed - which apparently serve no real function at all. He'll also need to remove some more lymph nodes, but apparently there's no risk of lymphodema. The body just finds another way of draining fluids.

During my regular visits to Cancerland I'm constantly learning new weird and wonderful things. Like how many parts there are in my body that apparently don't do very much. Being the naturally curious (or some might argue, nosy) person that I am, I ask this simple question. If the fats are of no use to my body, then why the hell are they there ? Given, (according to my old biology books) that the parts of the body are so tightly packed inside us that they're constantly jostling for space. Why have items that are surplus to requirement ? The surgeon tells me that when we're babies, our bodies need more fats than humans to stop them from getting too cold, this carries on into infancy but by the time we get into adulthood we have no need for this tissue, so it just sits there. When I still look unconvinced he reminds me that there are plenty of people that have a lung or kidney removed and the body learns to adapt to these changes. So the bottom line is that the human body is a wonderfully adaptive machine, capable of still functioning even when more and more of its contents are taken away. I still find the thought of going under the knife daunting but the surgeon's confidence is so contagious that by the time I leave, you'd think I was only having a tooth pulled.

But there's also the issue of the liver. I need to squeeze this in if I'm to make a much needed holiday (er, I mean work trip) to Madrid at the end of the month. Obviously and boringly my health of course comes first. But what better way of getting over two reluctant hospital stays than the thought of later sipping Sangria under the Spanish sun ? A few days later I find myself sitting in front of an emminent liver specialist. He shows me a scan of my liver. It looks like any other scan I've seen; a few blobs here and there together with some light and dark bits. But he tells me that it looks like a liver that has had chemo.  I interpret this to mean that it looks like a liver that has seen better days. He recommends radio frequency ablation (RFA) for me - a relatively new procedure that uses targeted electrical currents to cook the tumours from the inside. Considering how nervous I am about going under the knife, I now find myself wishing that I was having part of my liver removed. Psychologically speaking, there's something more reassuring about knowing that the offended area has been taken away completely - even if there's no guarantee that it won't recur again. But he explains that surgery is best kept as a possible future weapon at a later date. For now, RFA is the way to go. So, my challenge is to figure out a way of squeezing in both surgeries so that I'm well enough by the end of the month to jet off to the land of the Toros. At the moment, given the two bank holidays (thanks Wills and Kate !) that we've had back to back, it seems like an impossible task. But, never say never...

Saturday, 9 April 2011

Roll up, roll up, all aboard for Cancerland...

The last fortnight has been a busy one. In between looking after baby A and catching up on some much-needed sleep, I've been spending a lot of time in Cancerland. Just exactly where is Cancerland you might ask ? To an alien from outer space, it might even sound like an appealing destination. Although they should not confuse it with Wonderland, where Alice had a lot of fun and which sounds like an altogether more pleasurable place to be. Cancerland is not just the hospital where you have your scans, nor is it the unit where you receive your treatment. Cancerland is the parallel universe that exists alongside your normal life. Sure, the docs and the nurses and the needles and the tests are all part of the virtual 'holiday' that you take when you're at the hospital but Cancerland is also a state of mind.

See, when you're there, it seems as if no-one cares about your lack of hair, or discoloured nails or browless face. You can relax and reveal all your current imperfections to the staff and other patients, convinced that they've probably seen it all, if not worse, so many times before. But more significantly, you can let your guard down for a while. You can talk freely about your diagnosis, without worrying about the possible reactions from your audience.

But when you're not in Cancerland, you often find yourself making a big effort to look and sound as 'normal' as possible. But sometimes you get caught in-between the two worlds.

Take today. London was sunny (a rare occurence for us northern hemisphere Brits) so the world and his wife (including me) were out in abundance. All made a beeline for the first available patch of grass they could find.

I headed for our local park playground to meet my boyfriend and baby A there. I bumped into a mum - someone I had met in my pre-diagnosis life while on maternity leave. Someone who reminded me of the innocent conversations we'd had about weaning and wet wipes before I made the journey to Cancerland once again. I was wearing my headwrap, but as I've noted before, I'm lucky to live in a multi-cultural area where turbans and headwraps are as common place as fringes and bobs. Nothing suspicious maybe (given my ethnicity) about me also wearing one. But it was the eyes that gave me away. I went over to say hello and and before I could ask how her baby was, I started to cry. Not emotionally-fuelled tears, but those of a chemical persuasion. The docetaxel that I had just finished taking was still giving me watery eyes. She naturally asked me what was wrong. I stuttered that I had an allergy and quickly tried to wipe the tears away. But they stubbornly wouldn't stop. I briefly considered telling her the truth, but how do you casually mention that you've just finished chemotherapy for breast cancer without potentially scaring another woman who, like you, has recently had a baby ? The tears kept coming and I smiled and laughed through them. I went to wipe them again but realised that my nails, with their cracked, yellowy and purplish hues looked so unsightly that they wouldn't have looked out of place in a horror movie.

So I let the tears run down my face. She scanned my face again. Maybe this time she also noted the lack of eyebrows, and the dark shadows under my eyes. Perhaps she looked again at the edges of my headwrap and saw hair follicles where there should have been hair. She suddenly started to look really concerned. 'Are you alright ?' she asked me. Her look made me feel scrutinised. 'I'm fine,' I volunteered again, this time a little less convincingly. 'It's just an allergy'

On my way to the hospital for an ultrasound scan, I thought again about that meeting. If I'd just had a stroke or a heart attack or any other major illness, would I still have taken such big steps to conceal it from an acquaintance ? Why is it that the chasm between the real world and cancerland seems so wide ? If at some point in their lives, one in three people will be diagnosed with cancer, why is it still such a taboo subject ?

Wednesday, 6 April 2011

What could possibly be scarier than cancer ?

A mouse, that's what.

Even though I've recently been diagnosed with metastatic breast cancer that has spread to my sternum and liver, I'm still scared of mice. How can this be ? I thought I'd have nerves of steel by now. Friends and family often waste no time in telling me how 'brave' and 'strong' I am in dealing with such a devastating diagnosis. But I've realised that these are character traits that have been bestowed upon me with little or no prior knowledge of my past neuroses. For a start, I'm afraid of cockroaches, rats, bats and mice - roughly in that order. I'm also afraid of heights, deep water, and driving when there are other cars on the road. Yes, really I am.

I'm afraid of crabs because they walk sideways. I'm afraid of dogs that bark too loudly. I'm afraid of strong ocean currents, pitch black darkness and making a fool of myself in public. That's quite a long list. For this I blame my mother, who told me recently that she's afraid of so many things that it's far easier to just admit that she's afraid of life. At the time I found this revelation kind of sad. If you're afraid of life, then surely you're also afraid of living ?

But back to my four-legged friend. It has been months since he first set up residence in our kitchen. First of all we tried the softly, softly approach. A few humane mousetraps that trap but don't actually kill. When this didn't work, we tried the real mccoy - mousetraps that killed with one fatal blow. Still no joy. We worked our way through peanut butter, chocolate and cheese. In the morning we'd often find half of the bait already eaten. After another sighting of our grey, scraggy-haired friend gingerly moving along the kitchen worktop, we tried sticky traps - the kind that would keep him stuck in one position until we awoke, discovered him and then worked out how to dispose of him. Instead we awoke to clean, spotless sticky sheets. We caught him once, not dead but clanging away while I entered the kitchen to feed baby A. He'd got stuck in a trap and wasn't dead but obviously desperate to get away. When my boyfriend tried to release him in the back garden, he escaped and wasted no time in sneaking through the outside brickwork and back into our flat. We were back to where we started.

We've now just bought some poison and have tried to scatter this at the entry route outside. I'm not sure how we got from humane traps to toxic, life-threatening substances in just a few months, but it goes to show that sometimes you don't continue as you started. In an odd, ironic way the persistence of the mouse makes me think of the persistence of cancer. You discover them both by chance one day, you try killing them, they come back, you try killing them again in another way, they come back again, you use another technique, so do they. If there was ever a disease that felt more like an adversary than cancer, I'd love to know its name.

But, its not all doom and gloom. The mouse is still alive and so are we. At the moment he's residing in our bathroom while we're cosily watching TV in the lounge. Perhaps like this mouse, there's a way in which we can live with cancer even though both have entered our lives as unwanted guests. Perhaps with metastatic cancer, the solution is perhaps not to try to kill it, but just to keep it at bay so much that after a while you don't even notice that it's there. Or alternatively, you let it take up residence, give it a false sense of security and when it least expects it, you blast it with a secret weapon. Of course not being a scientist, I have no idea what this secret weapon might be. But when it comes to trapping mice, I think I've used up all my ammunition. If anyone else knows how to get rid of a determined rodent, I'd love to hear from you.

Monday, 4 April 2011

The Beauty of Hindsight...

Wigs. Why bother ? I'm so over them right now. If I knew that it was going to be this difficult to find a decent one I'd have made it my mission to get one before the treatment started. At least then, I'd feel a lot more confident about trying the wig on in any shop and I wouldn't be so tired and teary (side effect from chemo and therefore chemically induced; not me turning into an emotional wreck every time I look at my follically-challenged scalp). Today I received a call from the 'biggie' hairstylist. This guy does shoots and films and celebs et al. He charges £50 for a cut - which I know may sound reasonable in the world of real hair, but I'm now actually three wigs down and have realised that I've spent almost £100 on synthetic hair. And I'm nowhere nearer to getting my 'desired' look.

My sick pay will soon be cut in half so I now have to budget real hard. I haven't had the time nor energy to buy more fabric and therefore branch out on some new headwrap/turban styles. Baby A is almost walking and definitely crawling - at top speed I have to add. So I've had zero time to actually do more research into cutting and styling. I guess the real problem is that I'm stubborn. I love curly hair and I especially love afro hair at a time in fashion and beauty history when straight hair is all the rage. If I just wanted a straight or wavy wig I'd have a whole collection by now.

Speaking of which, I now have a long, straight jet-black wig. This was kindly donated to me by my friend M who thought it would be a good idea for us and another friend to have dinner at the Oxo tower in our wigs - a very kind treat to me to celebrate the end of chemo. I told her that I currently didn't have a suitable one. Just a very big Diana Ross meets Brian May mane that would probably either get me picked up for soliciting or maybe sectioned if I began to act anything other than 'normal' while wearing it. So she offered to bring me one. I wasn't so keen on wearing a straight wig but decided to break with tradition for one night only and see how it looked. I ended up trying it on in the toilet of a nearby pub before entering the restaurant. I looked at my reflection. What looked back at me was a woman with no eyebrows, dark shadows around her eyes and and dry, patchy skin wearing a wig designed for someone twenty years younger.  The unnaturally black colour and sheen of the wig seemed to highlight all my imperfections (both natural and chemically-induced). I started to yearn for my boring but neat afro hair again. What is it that they say ? You never miss something until it's gone ?

M offered me her mascara and some lipstick and after a few attempts, I once again had eyebrows and crimson coloured lips. I wore the wig all night in the end, sometimes sashaying along as if I were on a catwalk. I told them that I felt like a poor man's Naomi Campbell. They reassured me that I looked great. No-one even glanced at me - such is the current fashion to attempt to look like an R & B singer. Not even when my scalp grew very hot and I scratched it so hard that the fringe flew forwards and stray hairs found their way into my wasabi mackerel dish. The wig looked fine I guess, but it didn't feel like me. I always thought before buying a wig that if I wore one, I'd want it to be fun and fabulous and make me look like a bigger, brassier, beautiful version of myself. But I've come to realise that all I want is to look like me again - not some attempt to look like a supermodel or celebrity. Just plain, boring old me.

I wonder how it would feel to be transported back to my pre-metastatic life when all I had to complain about was lack of sleep and the loss of my pre-baby friends. If I could return to that time knowing what I know now ? I think I'd be the happiest insomniac loner in the whole of London.
This is the beauty of hindsight.

Sunday, 3 April 2011

Scanxiety - my new word of the day...

I love my new word. But, I have to admit with the utmost honesty and bare-faced cheek that I nicked it from some other blog. Whose ? I can't remember. I seem to spend far too much time these days surfing the net looking for blogs on oligometastases, breast cancer survivors and afro wigs - (always in that order) that it's hard to remember where I've left my footprint.

What exactly is Scanxiety ? Well, I think the marriage of the two words says it all. That feeling of absolute terror that you feel just before you're about to see your oncologist to get the results of your latest scan. You start to think about savouring the last moments of happiness and ignorance before your life possibly slides into the world of the 'last stages'. You scrutinise every ache and pain (real or psychosomatically imagined) and wonder if alarm bells should be ringing. You know that blissful moment just before you slide from the world of the conscious to the soporific state of slumber and surreal dreams ? Well, it's no longer filled with bliss. You start to dread that moment when your mind races off on its own journey just before you fall asleep. You start to resent having an imagination.

I felt exactly like this only a few days ago, just before the results of my latest CT scan. I had little reason to worry. My previous scan results had been good. They'd shown that the tumours were shrinking. Things were moving in the right direction. Only this time, I'd requested a brain scan - just in case there was something lurking there that shouldn't be. I felt fairly confident that everything would be okay,  but as the time for my appointment with the oncologist approached, I began to feel more anxious. Supposing I was wrong and they did find something ? Would chemo work this time round ? Would I need radiotherapy ? Could I still have my operation ? Would my prognosis suddenly take a nosedive ?

As it happened, I was lucky. My scan results were good. My tumour has shrunk by almost 90% of its original size. There are no brain mets, and the rest of my body looks fine.
Sitting in my oncologist's office, I sigh with relief and she looks puzzled. She can't understand why I should be so worried, since my last scans were ok. I tell her that I always am. Since being diagnosed with secondary breast cancer, fear seems to have become a very good friend of mine. When I leave her office I feel happy, but in a guarded way. Having cancer the second time around has made me all too aware of how quickly the tide can turn.