Sunday, 28 August 2011

Question Time...

While I'm in catch-up mode, I thought it was about time I kept you up to speed with what's happening in my currently not-so-fast-moving medical world. After my recent 'exploration' (where my surgeon no doubt prodded and poked about inside me with his scalpel), I am now the proud owner of a newer, neater looking scar. The wound still contains stitches or 'sutures' as they're more commonly known as, which I look at in semi-horror every time I need to change the dressings (which is currently every four days). Seeing live stitches still in my body does nothing but serve to remind me that someone out there has really has taken a needle and thread to my flesh and left behind the evidence for all to see. And as much as I hold anyone in high esteem who can cut open a human being, have a good old rummage around and remove a substantial part of their body without at some point keeling over out of sheer nervousness, stitches on skin only makes me think of one thing - Bride of Frankenstein.

So, at the moment it's thankfully all covered up and out of sight and I'm just relieved that I'll never have to leave the house wearing a colostomy bag stuck to my chest ever again. There are only so many smock tops that you can choose from which conceal this minor detail - believe me.

The other day though, I took a well deserved break from my usual routine of clearing up after Baby A's tornado-like movements through the house to pay a visit to yet another consultant who runs a private practice in Harley Street. I'd first met her all those years ago when I was being treated on the NHS. Back in those days time was always at a premium. I'd wait for a couple of hours to see her, only to get a ten minute chat, a quick feel of my reconstructed breast and I'd then be turfed out again, back into the real world. I remember how tough those check-ups used to be and how I'd dread having to relive all the gory details of my diagnosis. Even though it's been ten months since this recurrence, I still find myself welling up sometimes when I'm having to recount all the facts and figures. Since I'm now 'Appled up' as my partner likes to put it, and by this he means that with the acquisition of my I-Pad I now have the hat-trick of Apple products starting with my I-phone and ending with my laptop, I took my brand new purchase along to show her not only the second report that I'd sent to my other doctors, but also a long list of questions about my prognosis in general - most of which had been swiped from 'abstracts' on the net.

For those of you who aren't familiar with abstracts.... these are the nuggets of information that cyber-obsessed 'e-patients' like me scan through on a regular basis. What are we hoping to find ? God only knows - hopefully some eminent professor stating that a cure for metastatic breast cancer is just around the corner and if we could only hang on and stay alive for a few years longer, then we'll all be saved and able to wear the pink 'survivor' t-shirts like the primary girls do. But even though I often don't understand half of the text, I would say that it's probably an understatement to say that I'm addicted. Along with the encyclopaedia of the human body, it is fast becoming my evening reading matter of choice. This is not a revelation that I can admit to being proud of, but I guess you could argue that it beats reading Heat magazine any day.

So a few days ago, I casually strolled along Harley Street marvelling at the size and grandeur of the buildings and wondering how on earth I could ever find a way (short of winning the lottery) of residing at a W1 postcode. I found the waiting room a little disappointing in its blandness since I was almost expecting to be served tea and sandwiches in quaint ye olde english crockery, but was soon signed in and waiting to see the consultant. I'd been referred to her to see if there was a way in which I might need radiotherapy. I figured the answer might well be no since I'd had such extensive surgery and the chemo had worked really well. But since I don't like to leave anything uncovered, my oncologist had agreed to refer me, probably more to put my mind at rest than anything else.

Isn't it amazing how much more relaxed consultants look when they're in their private rooms away from the frenzy of the full-to-the-brim waiting rooms and the stressed-out looking NHS nurses ? And so it was for this consultant. She remembered me from before, asked me to recount my recurrence and everything that had gone on since then and then promptly told me that she didn't think I'd need radiotherapy. Agreed, perhaps this could have been a quickie phone-call received in the comfort of my own home instead of a traipse into town during midday, but since I was there, I seized the opportunity to cross-examine her about my condition, just in case there might be any difference in opinion to the one given to me by my usual onc. I showed her the second opinion report from the eminent US prof and she smiled when she read it and said that she thought I'd made the right decision having the op - despite him saying that it would only have limited benefit. Her reasoning ? I'm unusual (as usual) in that I shouldn't really have had a recurrence - statistically speaking. And because of this there aren't really any statistics for someone like me who was probably always HER2 positive from the outset but only had a recurrence seven years later. I've also got oligometastatic disease (low burden disease) which is another unusual thing and the chemo blew the tumour on my sternum clean away - which is also unusual. All in all, this combination should be a good thing but as I told her in between my 'Question Time' style cross-examining, I sometimes found it hard to be optimistic. One look at baby A was all it took to fast forward myself into the future where I sometimes found it even harder to see myself there too. She was sympathetic and said all the right things but I guess at the end of the day (to use a much-loved, over-used football-manager's cliche) no doctor can ever give you that 'all-clear' that we all hope for one day. Still, I made the most of my day in town, although it was strange how I went shopping for some pre-holiday dresses and came back with only a potty.

Strange how motherhood creeps up on you, ain't it ??

Friday, 26 August 2011

A Stitch In Time...

Well, two posts down, only countless dozens to go. I really must be on a roll. What can I attribute this frenzied return to blogging to ?  It can't be the mid-afternoon fatigue that I often feel around this time when the thought of doing anything other than being tucked up in bed and surfing the net fills me with well, more thoughts of tiredness. Nor can it be down to the end-of-the-summer-that-never-happened-blues that I feel when I look out of the window and see that it's raining. Again. I sometimes think that had I been a smarter, more adventurous type of gal when I was in my twenties or even thirties, I might now be sashaying along some sun-kissed Mediterranean malecon at this time of day, before retiring for a siesta in my villa overlooking the sea. Instead of this, I'm living in an overpopulated city, often battling with the wind and the rain with an umbrella that refuses to open. But enough of daydreams. I chose London for my sins and in doing so, I also opted for the Great British Weather.

Anyway, time for a catch-up.

Like I said in a recent post, a lot of things have happened since I last spoke to you. Firstly, my stoma bag (or colostomy bag, depending on which part of the body you've decided to wear it on) is gone, and hopefully gone forever. My surgeon, having returned from his holiday, called a few shots and before I knew it, I was out of drainage and into dressings again. I have to admit that after being passed from pillar to post during his absence, I've never been so happy to welcome the return of a doctor. On his return he examined my wound, after giving it an extra week in case it felt like draining some more. When it didn't, he told me that he'd have to re-do the lower part of the wound to make it look better and get rid of some of the bulging bits that had formed during drainage. Formally it's called an exploratory-something or ever (apologies for the lack of detail but I tend to zone out sometimes when I hear words that contain more than four syllables...). I would be back in hospital and back in the operating theatre but this time for only an hour at most. I'd be given a local anaesthetic which might make me feel a bit woozy but beyond that I'd be up and about in no time.


Ever since my sternectomy, I've been trying not to feel too bad about the scar that runs right down the centre of my chest. And I guess it makes sense not to. After all, if there were a competition that judged beauty on the number of war wounds a woman can possess in her lifetime, I think there would really be no contest. I would be a clear winner, hands down. Not content with having a mastectomy scar as well as a scar on my back where the muscle was taken for my latissimus dorsi reconstruction, I have the recent acquisition of a caesarean scar and now the macho addition of a scar that begins in between my breasts and ends just above my stomach (yes, it feels very macho to me - forgive me if I'm wrong but isn't it always the tough guy in the movies who seems to undergo major heart surgery ?). When I look at myself in the mirror I can honestly say that I don't know which one to look at first. With my mind being the eternal daydreamer that it is, I often wonder what would happen if me and my partner split up ?  If I suddenly found myself back on the dating circuit ? How would I handle having to take off my clothes for the first time in front of a perfect stranger ? And what would the outcome be ? Would the gentleman in question stick around long enough to hear a full-blown account of my medical history or would I find myself stammering a confession over dinner while trying to reassure him that I still look kind of okay in a bikini, depending on the hour of the day - preferably after the sun sets.

But back to the matter in hand. On the day of my exploration, I felt so self-assured that I turned down the offer made by my mother to accompany me to the hospital. I kissed my partner goodbye and told him not to bother picking me up, I'd jump on the train after having a spot of dinner there. My mother thought that I was mad. A few stitches was all I was having, I breezily informed her. And with that I skipped off to the station.

How wrong was I ?

Firstly, when I arrived at the hospital, on the same ward that I had been originally put for the sternectomy, no-one had seemed to tell the nurses that I was back in for a 'minor' procedure. So they imagined, I guess, that I'd had a recurrence. They looked at me with sympathy in their eyes. 'No, it's just a minor procedure,' I corrected them in between confident smiles. I wanted to show them how well I looked, how fit I was, but it's hard to achieve this when you're wearing nothing but a blue felt hospital gown and terry towelling slippers. Then in came my physiotherapist.

'Hi there, don't forget to do the exercises after surgery', she warned me. 'Remember to take deep breaths to inflate the lungs.'

Eh ?  Deep breaths ? Lungs ? Did she know something that I didn't ?

By the time my surgeon appeared, I was on the edge of my bed. I'd signed consenting forms and had my wristbands put on me and I was about to go down to theatre. There didn't seem to be anything minor about this operation at all.

I asked him about the anaesthetic. 'It will make you sleepy, but you'll still be able to hear my voice. But if it feels uncomfortable for you, then we'll have to give you a general anaesthetic'.

By now, I was beginning to feel more worried about the local than the general. What if it was really painful ? I remembered the tugging feeling that I'd felt when I had had my caesarean which had been under a local epidural. I'd been terrified about feeling pain and the feeling of discomfort still sticks in my mind. Soon, a porter came for me and we took the lift down to the operating theatre where the team were waiting. I went through the all-too-familiar procedure of having the canula inserted, confirming my name and date of birth, and checks to make sure that I wasn't allergic to anything. I was wheeled into the room where I saw my surgeon again. The familiarity of his friendly face was reassuring. The anaesthetist told me that he was about to give me the local, soon I'd feel sleepy but awake. I was given an oxygen mask. I'd also feel a stinging pain in my arm after the anaesthetic went in. The pain was again all-too-familiar, that burning sensation that I couldn't ignore. At times it felt unbearable and I turned my head to the side away from the surgeon.

When I opened my eyes, there was nurse sitting at my side.

'Hi, You've just woken up. We had to give you a general anaesthetic as you wouldn't stop moving around. Then your blood pressure fell and your heart rate slowed down. But you're okay now'.

I didn't feel ok. I felt like I'd just done a few rounds with Mike Tyson.

I was wheeled back to my room where I drank water and slept. When I woke up there was a knock on my door. It was my surgeon.

'What happened ?' I asked him.

We couldn't keep you on the local as you kept kicking your legs and moving around. I kept asking you if you were okay and you'd say yes, then start kicking again. So we gave you a general.'

'But my blood pressure was low, wasn't it ?'  I remembered the words of the nurse.

'You're very sensitive to opiates.' he explained 'But I knew this from before. As soon as we gave you a general, your blood pressure plummeted. But you're fine now. Is anyone coming to pick you up ? I think  you should call someone.'

So, after a late, late lunch (nil by mouth since midnight), I was picked up by my family and soon at home with further dressings. Nothing as dramatic as in previous posts but at least things are now moving in the right direction. Once the dressings are off and the stitches removed, we can hopefully book a holiday to that place that I've been dreaming about. The one that has a beach, long, hot summery days and a room with a view. Oh and maybe a complimentary full-time nanny. But failing that, an all-day creche will do for now.

The Post-Chemo Cut

Okay, let's talk about hair. Namely my own (tee-hee). One of the beauties of having your own blog is that it can unashamedly be all about you - no sub-editors to slash your over-indulgent sentences and no critics lurking in the background telling you to get over yourself. So, the last time I mentioned my hair on this blog, I was about to pay a visit to a non-black hairdresser to get my wavy-straight post-chemo hair cut into shape. Well, this took place exactly three weeks ago and while the experience was interesting while it lasted, my hair now looks entirely different. My waves are fast curling over; the blacks are now fighting for space amongst the post-chemo silver-greys. My hair, while still straightish, is growing outwards and I am beginning to resemble my old pre-chemo self once more. The look is less cutting-edge, more college professor. In other words, there ain't no real style to play with. I know that if I get it cut again, it will look better. But if I try to grow it longer, there's a chance that I might get my old Afro back sooner rather than later. What to do? Who really knows? But while I'm still deciding, let's take a trip down memory lane...

So my post-chemo haircut was such an eventful day for me that I decided to invite the whole family. Not only did baby A and my partner accompany me on this historic day, but my mother who had been installed in the house on and off ever since I first had my first chemo hit, was dragged along for the ride too. My partner had phoned ahead to explain my predicament and so when I walked into the empty salon and met the two male Thai hairdressers whose own hair textures had absolutely no resemblance to my own, they didn't stop dead in their tracks or point me in the direction of the local Afro-Caribbean barbershop. As soon as I walked in, I explained my story. I told them about the chemo, my hair loss and the change in texture that had occurred since the regrowth. One of the hairdressers, a petite-looking Thai man with a shaved head looked at my hair in wonder. 'So it's come back straight now?' he asked. 

‘Not really straight’, I explained. ‘There are curls breaking through.’ 

'Well, it's not really curls,’ he explained, on closer examination. ‘It's more wavy. It looks more like mixed-race hair.’ 

He beckoned me to sit down and put a gown around me. I stared into the mirror and saw someone unrecognisable staring back at me. My hair was truly wavier and greyer than it had ever been. Even though I had not set foot into a salon for the last five years, I remembered the feeling of tension that I often felt when I sat in the hairdresser's chair and tried to explain to the stylist want I wanted. I was so used to styling my own hair, it was often hard to let go. I was always convinced that no one else would give my hair the tender loving care that I did - and I was often right in thinking so. 

The Thai hairdresser continued to look at my hair in wonder. 

'Yes, I can cut this', he said to me after a while. ‘Anyway, short hair suits you. You have a good head shape' - he pointed to the rounded shape at the back of my head. 'My head shape is flat at the back - see?' 

I noticed that the back of his head was much less curved than mine, and that he was bald on top - hence the shaved head. 'It's not so good for me'

He took a fine comb and a pair of petite looking scissors from a stand to the right of me. I asked him whether he had ever cut Afro hair before.

‘No!' he said emphatically. 'I can't cut Afro hair. Afro hair is special hair. You need experience and a different technique. Lots of black people come into this salon and ask me to cut their hair but I tell them I can’t. I don’t have the skills. Even when you use clippers on Afro hair, you have to hold them in a different way.'

I nodded. It made sense to me and at least he was honest. Although I was always taught that the only real difference between Afro hair and Caucasian hair is the amount of curl or ‘kink’ in the hair. Afro hair follicles are shaped differently, that is true – but this only affects the texture of the hair, which in turn affects its porosity (how much moisture each strand can absorb – afro hair tends to be much more porous than Caucasian hair and more fragile to breakage because of its irregular curl pattern.

‘You know once’ he confided in me, 'someone asked me to wash Afro hair. I tried but the water just ran off the hair, I couldn't believe it !’ 
I smiled. His remark reminded me of some of the questions that my white school friends used to ask me about my hair, ‘How do you wash it? How do you dry it? Is it true that it shrinks? I always found these questions strange. To me, my hair was as normal as they come. It was everyone else’s hair that was weird to me.

‘Anyway’, he said smiling as he began to comb and clip the ends of my hair. ‘Why don’t you keep your hair like this? Now you have hair that everyone can cut!’

This time I laughed. I explained that my current hair was only temporary. I was expecting to welcome my Afro back some time soon in the future. In the meantime I was just trying to get to grips with my new hair.

He continued talking and cutting, combing and cutting, often pausing to check the length and evenness on each side. We chatted away about living in London, life in Thailand, current trends in hair in Asia – (apparently Japanese youth love ‘distressed’ hair) and post-chemo hair. I was surprised that my hair wasn’t shampooed and blow-dried beforehand, as it is always done in an Afro hair salon. He warned me that post-chemo hair is very delicate. I shouldn’t do anything drastic to it for a long while. When I mentioned the fact that I was thinking of dyeing it soon, he looked at me in horror. 

‘No! It’s too fragile! Anyway, why? Grey hair suits you. There are lots of people who would pay good money to get this type of shade’.

Ok. So now I was flattered, now I would tip and now I would almost definitely come back for another cut. What a great hairdresser I’d found! But that’s cynical me talking. I’m sure he was for real. By the time he’d finished, I was back to my post-chemo pixie self. I looked tidy again. He’d given me a damn good cut. Even my mum (who is often my biggest critic – in the way only mothers can be) was impressed. We took a few pictures for good measure and left the salon. I realized that this was the first time that I’d had my hair cut dry and with a pair of scissors and without the use of clippers, gels, sprays or oils. It had been a brand new experience and one that I’ll probably never experience again.

Who says that life doesn’t begin at 40?

p.s. just in case you're wondering about the link between the girls in the picture and this post ? - well, there isn't one. I just really like the painting. And the girl's hair on the right reminds me of my last wig. The painting's a finalist in the National Portrait Gallery's current competition. Think I'll check it out the exhibition next week... 

Thursday, 25 August 2011

The latest Apple of my eye...

One of the things that no-one ever tells you when you first start your own blog is how often you should post. With so many opinions, thoughts, whinges and questions flying through my busy mind on a daily basis, I truly believe that I should be submitting a post at least three times a day. But alas, with the day-to-day juggling of not only my current hospital visits, but also having to deal with baby A's current vogue of refusing most meals that I care to conjure up, time is often against me. Not only am I a procrastinator, I often receive my bolts of inspiration in the least inspiring and most inappropriate of places. Often, when I discover that a current preoccupation of mine would make a really interesting post and have already formulated the first paragraph,  I'm either on the bus with neither pen nor pencil to hand, or am waiting impatiently in a slow-moving queue at the supermarket. By the time I get back home and find a break in the day to sit down and start assembling my thoughts... well, what d'ya know ? they've already run out of patience and deserted me.

And then there's the guilt of non-blogging. Most cancer survivors can relate to the fear of recurrence being like a sword of Damocles slowly hovering over your head, but I bet you didn't realise that not having updated your blog in not one but two weeks can feel a bit like that too ? Ok, perhaps I'm being a bit overly dramatic here... perhaps it feels more like the guilt that you feel about that thank you card that you never got around to sending to your long lost uncle who kindly posted you that nice, fat cheque last summer for your birthday. The longer you leave it, the harder it is to send and the worse you feel for it. I realise that in terms of catch-ups, I'm running way behind. My haircut - once so slick after having been tamed a few weeks ago is now looking like a completely different beast altogether. I'm no longer wearing a stoma bag, have had a minor operation, am now back on herceptin and today paid a visit to yet another doctor to discuss the possibility of me having radiotherapy. Phew, I know. A hell of a lot to catch up with. What have I done to remedy this ?  I've treated myself of course... to a brand new Ipad. Now I can blog anytime, anyplace and anywhere. Did I really need it ? Probably not. But since I'm currently so over my search for afro wigs at the moment and not really fully healed enough to go on a clothes shopping spree, I think that a leap into the world of gadgets and gizzmos is the closest thing I'll get to retail therapy for a while...

So bear with me if you please. I will try my hardest to bring this blog back up to speed in the most painless way that I see fit. But if things start to sound a bit random or worse still repetitive, then please understand. It might not be me doing the talking, it might well be the chemo...

Wednesday, 10 August 2011

Another Brick in the Wall...

I have written many posts since I last posted on this blog, since a lot has happened since I last visited, but I have had neither had the time nor the energy to complete them. I would love to tell you what happened with my new haircut, or how my newly-suntanned surgeon is now back from his travels abroad, or how I recently bumped into an ex-best friend of mine who just hadn't been there for me at my lowest moment and the strong emotions that I felt after this encounter. But nothing and I mean nothing seems relevant or important enough after experiencing the night that Londoners experienced two nights ago. For the first time in the twenty years that I have lived in this complex, sophisticated, sometimes frustrating city, I sat in my home and felt too scared to leave. And this was at six o'clock in the evening. While the news of rioting and looting seemed to get closer and closer to my own home, I found myself checking my back door wondering what I'd do if I suddenly found my property, or worse still my family under threat.

Yesterday, as I sat in my lounge about to get ready to attend yet another hospital appointment, I wondered what kind of descriptions the media would use to describe the violence and looting that took place in virtually every area of inner-city London over the last three days. Will it be described as an aggressive cancer that quickly spread through the capital, seeding its malignancy from shopping centre to high street ? or a race riot that erupted after one man was unlawfully killed by police ? or more simply a kind of Clockwork Orange opportunistic style of anarchic behaviour by a group of underclass kids too disconnected and dispossessed to know any better ?

The morning after the riots I walked through my area and observed the broken glass, the boarded up shops and the look of complete disbelief and shock on the faces of the many residents who like me are just ordinary people. None are rich, even fewer have businesses. The riots have forced me to think about what I've been through in the past eight months and the marathon treatment of chemo, surgery and herceptin that I've worked my way through. What has been the motivation for my efforts ? To stay alive for as long as possible of course. To be there for my son. But when I listen to the voices of the lost and immature out-of-control teenage rioters who will one day be London's next generation, I feel worried. My greatest fear ? Not that I won't make it, but that my son's voice might one day be among them.