Sunday 8 August 2010

Simply red ...

I love the thought of giving hope to you
Just a little ray of light shining through

Mick Hucknall ~ Fairground ~ 1995

My mother died 14 years ago, aged 53, of ovarian cancer. She had been diagnosed five years before ... but to be truthful the cancer had probably been there since her early forties, when she was a similar age to me. For a year or two they had said she was peri-menopausal and by the time they realised the real problem, and operated, the tumour was the size of a melon.

I wore a pillar box red jacket to my mother’s funeral. I wasn’t being disrespectful. My mother didn’t like black. I don’t recall her ever wearing anything black. Black doesn’t suit me ... and it probably didn’t suit her. She liked red ... she liked the red jacket ... so I wore that.

I remember the cortege pulling up outside the crematorium, and as I opened the car door and climbed out I heard someone say “There’s Sylvie”. It was an odd thing for me to hear. Sylvia was my mother. Obviously, they weren’t talking about her ... they were referring to me... and how much I looked like her.

I must admit I did inherit a number of her features and as I mature, steadily edging closer to the age she was when she died, it is probably now even more noticeable. She was also shortish and curvyish, with high cheek bones, and fine brown hair. When she was alive mine was shoulder length and wavyish and which I would straighten ... whereas she wore hers short and would curl it.

My mother was pretty low maintenance. She used to wear a dash of mascara and little bit of lipstick. However, her big thing was her hair. She liked to go to the hairdressers and have it permed and styled. The chemo she had didn’t make her hair drop out until right near the end. When it did she got a really good wig and lots of people didn’t realise it wasn’t her hair ... but she did. It hit her hard.

Until twelve months ago the only cancer that really appeared on my radar was ovarian. If I saw something about it in a magazine, or on TV, then it would get my attention. Not breast cancer. And ... when I went for my very first appointment at the Breast Care Unit, a year ago this week, Dr Jordan looked at my family history and said he wasn’t too concerned. “The lump is probably a cyst that will need draining.”  Of course once they had scanned it and taken biopsies we all knew that it sadly wasn’t “just a cyst”.

A few weeks ago I returned to the hospital to have Perky checked out after the four weeks of rads. I saw Dr Gillies, the oncologist, and she said it was looking pretty fine ... that there might still be a little fluid there and that I need to keep slapping the aqueous cream on and massaging it ... and that they will take another peek at Perky again next month.

Whilst I was there I decided to ask her a couple of questions. I wanted to know why they hadn’t done any genetic testing ... why they hadn’t tested to see if I have either of the faulty BRCA genes and whether my chances of another incidence of breast cancer, or my chances of getting ovarian cancer, were significant. She said that as I didn’t appear to have a noteworthy number of breast or/and ovarian cancer cases in my family then that isn’t something they would normally do. I explained that my mother had no sisters and no aunts ... however, my grandfather had died of cancer ... as did all of his five or six brothers. She said it wasn’t something that the health profession was sure about ... but if I wanted genetic counselling to talk about it then she could arrange it.

I knew the answer ... I had thought long and hard about this ... and the answer was “no”.

Is that right? I don’t know? I may have the opportunity to discuss what my risks are of another incidence of breast cancer ... or getting ovarian cancer ... but I am not taking up the option.

I explained to Dr Gillies that I have survived this last year ... but my head is not in a place to consider the implications of testing and recommendations ... which I guess may mean being advised to have both my breasts removed ... along with my ovaries. Perhaps I am being silly ... or naive ... or stupid ... especially as I am Triple Negative and there is no medication to keep the cancer at bay. But, for the moment least, I am happy to protect my ignorance ... and live on a ray of hope ...

I went back to the hospital again last week. Let’s think ... on Monday. Oh ... and Tuesday. And probably Wednesday. Thinking about it ... Thursday too. And Friday ... definitely Friday.

Don’t worry ... I am OK ... I didn’t have any appointments. No. I was at the hospital because I now work there. Yes ... my hospital. What I have not had chance to tell you about yet is that when I came back from holiday in June my job changed. Not totally. I am still working with those old colleagues including Mr Campbell, Peaches, Miss Sweaty Jockstrap, Cornish Cous et al. But my different role means I now have some new colleagues ... including Chemo Nurses A to H, Dr Jordan and the luv-ver-ly Dr O ....

Now ... I know it sounds odd ... but you would think that each time I go to the hospital I would think about what has happened there before. My mother’s cancer ... her death... as well as my own diagnosis and treatment ... especially as that really wasn’t very long ago.  But I don’t. OK ... so when I walk past the breast care unit ... or radiotherapy building it might fleetingly cross my mind ... but generally I consider it just to be one of the places that I work.

I say “generally” as last Friday was a little different ... it was a year to the day that I attended the Breast Care Unit for the very first time.

On Friday I went over to the hospital to do a charity donation photo shoot. It went well and once it was done I left the hospital feeling all warm and fuzzy.  That was until I drove down the drive .... and I looked at the clock and it said ten to two ... about the time of my appointment exactly a year ago ... and it got me thinking. I had a flashback of me and Nit Nat getting into her little black car and setting off to the hospital to get my lump checked out. I remembered feeling nervous ... and a little scared ... but certainly no idea of what was about to knock me for six ...

As I drove along, the memories from my initial visit the previous year caused tears to well up in my eyes and warm salty drops toppled down my cheeks. I thought back to the comment made by the actress Lynne Redgrave when she heard her diagnosis. She said: “I have my moments of such sadness. They hit me quite suddenly. My loss of innocence. The innocence that made me feel that cancer couldn't happen to me.

And that is what happened to me at that moment as I was driving along. I got cancer... I got treated ... and hopefully it has gone away ... and I am truly grateful for that. But ... I will never be the same person who walked into that Breast Care Unit a year ago. I want to continue to live a healthy, happy and fulfilling life ... but I know that even if I go hours ... or maybe days ... and perhaps one day even weeks without thinking about cancer ... that it will always be in my life. Not necessarily physically but definitely mentally. There will always be something in the back of mind ... I will never have that innocence ever again ... I will always live with a silent shadow ... a tiny grim reaper sitting on my shoulder whispering in my ear and reminding me that the cancer could reappear ... in my breasts ... my ovaries ... anywhere ...

I got back to the office and pulled into the car park and checked my face ... grabbed a tissue to wipe away the smudged make up. And, as I did so, I caught sight of my hair ... and let out a little chuckle. Yes ... my hair ... my hair that used to be fine and shoulder length but ain’t no more. Following the chemo it has grown back thick and curly ... not even wavy ... but curly. Honestly, my mum would love it. She would be so envious of it ... along with them infamous red shoes of mine ...

I can’t remember who made that comment as I got out of the car at her funeral ... I am not even sure if they are still alive ... but I do know that if they thought I looked like my mother back then ... then they certainly would now.

Fingers crossed hey, that it is just our looks ~ and our passion for red ~ to remain the things she and I have in common.

Monday 2 August 2010

You are one in a million ...

Well, actually I am not one in a million ... I am one in 28 million. What I am not sure about is whether that makes me more ... or less ... special ....?

Last weekend saw the end of the Tour de France. Yes, I know what you are saying. “Tour de France?! What is she on?"

That it is up there with my admission about my fondness for fishing?

OK – your thought processes? Well let me guess ...

 “Tour de France? No!

Oh ... but hang on there ... Tour de France ... men ... fit men ... fit men in lycra ... perhaps it is to be expected of her ..."

Oh you guys ... do you really think I am that shallow? Honestly!

Let me explain ...

Well ... annually I do dip in and out of the Tour de France ... as I did this year. Why? Well, as an imposed-Francophile I like to check out the bits of France that I’ve been to ... and the ones I haven’t. I must admit there aren’t many. As I joked with a colleague at work a couple of weeks ago ... I am often tempted to buy one of those ‘departmental’ maps of the country and fill in the places that I have been to ... painting by numbers style ... and I don’t think there would be too many white ones ...

And then there is Lance. I must admit I have a bit of an obsession with Lance.  Yes ... Lance Armstrong. Now ... I don’t want you to worry ... I have not become some kind of celebrity stalker ... he has not had any need to take a court injunction out on me ... honestly. Maybe 'obsession' is too strong ... perhaps I should say 'admiration' and since my diagnosis 'fascination'.

"Why?"

Well firstly, I muse over how on earth back in 1996, when he was the world no 1 ranking cyclist and member of the Olympic team, did Lance get cancer. Nope ... not only did this extremely fit top sportsman get cancer, but he got bad bad cancer. It started as testicular cancer – but that wasn’t it in a nutshell. No. No, that definitely wasn't it.  It roamed ... and roamed lots ... it spread to his lungs and his brain. It was so severe that in fact he was given a less than 50-50 chance of survival.

Secondly, I want to know how someone who was so poorly manage to kick that cancer in the balls and come back and not only complete the arduous Tour de France the following year ... but an unbelievable further six occasions after that.  Hollywood could base a film on these incredible highs and lows ...

And thirdly, as an aside, how on earth did he and singer Sheryl I-just-want-to-have-some-fun Crowe get it together? I guess it takes all sorts, everyone to their own ... and all that ...

So this year? Well .... Lance didn’t make it an eighth time ... but he certainly didn't let me down. If he ain't conquering cancer one way ... then he is successfully doing it another ...

I don't think Lance really thought he was going to win this time round.  And at the end he was 40 minutes off pace. 40 minutes ... about the time it takes me to do a bit of shopping, or make some supper or run a bath and have decent soak. But 40 minutes is a long time in the sporting world.

"So this race was a meek and mild affair then?"

Err no ... this is Lance ... who is renowned for not just being yellow-shirty ...

First of all there was that run-in with the pedestrian who made the mistake of getting in his way.

But ... even more amusingly there was that ending ... when Tour officials noticed Lance’s Team RadioShack were wearing unauthorised jerseys for last Saturday's final stage, they halted proceedings and made them put their official kit back on.

The disgraced shirts were emblazoned with the number 28 - to signify the 28 million people suffering from cancer worldwide. They were billboards for Livestrong, the charity Lance set up in 1997, a year after he was told he had a less than a 40% chance of beating his cancer. The successful charitable foundation vows to 'unite and fight cancer'.

Lance and Radioshack had already been told by Tour officials that they weren’t going to permit the unauthorised sweaters. And, if the intended message was that nobody is bigger than the Tour, then it didn’t happen. Lance and the guys still put the shirts on ... and Tour officials insisted they be removed.  Farcical scenes ensued as the team changed by the side of the road, safety-pinning race numbers to their old shirts, while the rest of the riders wondered what was going on. The officials had stuck to their guns but ironically headstrong Lance still got his photo opportunity and publicity. The world’s media watching and talking about what he is doing to raise awareness of cancer for 15 minutes ... absolutely and totally priceless. I have to hand it to him ... a true example on how to take others for a ride ...

"So talking about France how was that holiday back in June?"

Yeah, nice. It was warm and sunny. I got do the things I said I would do. Resting and relaxing .... reading my books and poodling around on my bike. But to be truthful it feels like quite a long time ago now ... it was after all two months back. I’m actually looking forward to my next holiday ... to France ... in a week.

Yes, I know, I know. Another holiday. But nobody can begrudge me of this one. This is the holiday I was due to go on last August. But didn’t ... as I was diagnosed the day before my scheduled departure. So I am going this year ... on my actual first year 'cancerversary'. I will be taking the ferry to Calais and going right down the middle of France ... all the way to the Spanish border, nestling in the foothills of the Pyrenees, beside the sea. Oh don’t worry, I will have my bike with me, but I won’t be cycling there. Gosh, no. What takes Lance three weeks and 40 minutes would take me at least three years ... honest. No, I will be travelling down more conventionally by car. The Tom Tom says it will take about 10 hours ... 10 hours for me to watch the French countryside fly by ... and quietly reflect on the last year.

Now, for those of you who have been with me since the beginning you may remember the Cogs story ... when I described how the months ahead of me felt long and never ending. That how I wondered whether I would ever look back at that diagnosis and treatment time... and it would feel like a distant memory. Well, for those of you that are just starting off on a similar journey ... I can say it does. Only three months since I returned to work ... and two months since I finished treatment ... those nine months of hell really do feel like a blur.

So what will I be thinking about as I am heading down to the sunny south? Well, I will be looking forward to that long-awaited break ahead of me. How I will be enjoying my usual favourites walking, cycling, exploring, taking photos ... soaking up the sunny atmosphere ... swimming ... and boarding. Yep ... boarding.  That raised a few titters in the office this week. Instead of the delivery of the expected and accepted shoe box shaped parcel ... this week it was body board shaped ... and what most of my colleagues failed to realise was they had paid for the accompanying wetsuit. Uhhh ....??

Well, about six months ago, Mr Campbell said to me that he still had some money left over from my gift collection. He asked if I would like him to buy something or would I like the money ... did I have something in mind I would like to purchase. And I told him that funny enough I did.

Back in September, after my treatment started, I spent a day on the beach with my family and friends. Now, I have done a bit of body boarding ... borrowing a wetsuit and board as required ... but I have never been too bothered. I was just as happy sitting quietly on the blanket with a magazine or book. But back last summer it was different ... it was the classic thing of I wanted to do something ... because I couldn’t... I wasn't allowed in the water because of my low immunity due to the chemo.  It was a bit like wanting a particular food if you go on some wacko diet which doesn’t allow you to have certain things to eat. Life is like that ... as  soon as you are told you can't have something you want it makes you want it even more.  So, I vowed there and then ... that once I was able to ... then I would grab the opportunity. Which I am ... and every time I put on my wetsuit I will picture my lovely kind and generous colleagues. I am just thankful that they won't be able to see me ...

Before I sign off I want to mention my friend Johnny Boy ... Johnny Boy who will be jumping on his bike soon and cycling from Honiton to Teignmouth to raise money for prostate cancer – the number one cancer for men. Now, if you know and work with Johnny then put your hands in your pockets and throw him some loose change ...  And for those of you who don’t ... well ... when someone you do know does something similar then I ask you to do the same for them. Honestly, every little bit counts.  There are 28 million of us out there you know ...

I am going to sponsor Johnny Boy ... but I am not sure how much yet ... I need to check out whether he is prepared to put on the lycra ...