Thursday, 31 December 2009

Move over Dorothy

YES! Yes, yes,yes, yes. YES! YES! YES! (Does a little Michael-Flatley-tiptoey-dance and punches the sky) Yes! I have only ruddy gone and done it. I even have a signed certificate from BBC’s Record Breaker’s Norris McWhirter to prove it.

"Done what exactly?"

Well, you know a little while ago I got a Golden Gong – or rather a Beige Bong – for “2009 – Crappiest Year Ever”. Well, I knew I was in with a good chance of winning that one. Come on, let’s face it, the year I was told that I had a 6cm-stage3-grade3 breast tumour ... out of the blue ... it was pretty much a sure thing. Though the judges did admit to me afterwards that the fact I was diagnosed the day before my three week hols down in the south of France really tipped it for me.

Anyway .... I have now been an awarded a second Beige Bong. Yes, I am the proud owner of not one ... no sireee ... but TWO Bongs! Yes, two. I have just got my second Bong for .... drum roll please .... “2009 – Crappiest Christmas Ever”. They look cracking. My Bongs, that is. They are now sitting here beautifully symmetrical on my mantelpiece. A fine, stunning imposing pair. Here’s hoping that Dr Jordan, my breast surgeon, can do an equally impressive job on my boobs in a six or so week’s time...

So ... back to Christmas ... I had my number two Killer Chemo exactly two weeks ago. As before, the achy joint and muscle pain kicked in over the weekend. It wasn’t too bad ... on the Sunday we had a little bit of snow and I managed to go up on to the moors and take some pics. The next day or two I felt alright, other than the horrid cardboard mouth which I hate, but then I started to dip a bit. And a bit more. Then it hit. Right on Christmas day. I woke with a cold, a hacking cough ... and a very very sore throat ... with left me with no voice ... absolutely nothing ...

I spent the morning in bed and got dressed to have some Christmas dinner. Now, I don’t want to over egg this or anything ... I am not going for the sympathy vote here ... honest ... but I felt terrible and looked pretty bad. I think this is backed up by the fact that I walked into the kitchen and two rellies, who admittedly I haven’t seen for a little while, took one look at me and both burst into tears. Merry Christmas ... here help yourself to one of these Piggy-in-Blanket-Thingies ... oh, and a Kleenex ...

I made it to Sunday. Sunday at 8am. Then I knew I had to take action. I wasn’t getting any better. Now, I have this thing about NHS services ... ‘cos part of my job is to encourage people to access services appropriately. Now, before this BC thing I wouldn’t see my GP from one year to the next .... those were the days my friends ... And so I had a bit of an issue calling the out-of-hours GP ... on a Sunday ... a Bank Holiday Sunday. Then realised how stupid this was .... I’d just had my sixth chemo ... my throat was so sore I could hardly eat or drink .... I was whizzing on painkillers ... and barking like an orphaned sea lion ...

Yes, I would really like to see you,” he said over the phone. Oh good. “You may need some antibiotics”. Just what I thought. “But if that is the case then I can’t prescribe them. You will need to go in to hospital for them to have them administered there.” Not, what I thought .... I hadn’t bargained on that.

I rummaged through the magazines whilst I was waiting to see the doctor. There was a supplement from a Saturday newspaper so I flicked through that. Aaah ... Lori Reid ... “Britain’s Best Astrologer” ... mmm ... so what has Britain’s Best Astrologer got to say about my future .... Pisces ...

With all the hard work you’ve been doing lately, you’re physically in great shape. You love parties and you’re ready to let you hair down on New Year’s Eve! Call my starline to hear which is the best day to hit the sales.

Err ... I have never been in such a worse shape. I have no hair to let down. And the last bit is the most ridiculous ... every day is the best day to hit the sales ... obviously ... doh ...

Dr H was really nice actually. Young charming chap. If my usual GP was like that then I probably would have gone to see him a lot more often ;) He had called the hospital prior to my visit so that he could find out more about my medical history and the treatment I have been receiving. He was very patient as I whispered my symptoms and my concern that I might have an infection. He checked my chest and my throat and said no, there was no infection. Basically, I had internal burns ... chemical burns from the chemo. There was nothing that he could prescribe, I just needed to keep taking the cough medicine, painkillers and Strepsils. Which I have.

So a week on how am I? OK. Better. I still have the hacking cough but thankfully the sore throat has now gone. Unfortunately, the hideous rash which I got last month, which I thought was as a consequence of an allergic reaction to the eyedrops, wasn’t. And, once again, I have chemical burn on the outside too, with my face and chest covered in severe itchy and inflamed hive-y bumps.

The good news - for everyone else that is - I still have no voice - so I won't be joining in on Band Hero or singing Auld Lang Syne tonight. 

I bought myself a camera for Christmas. I know, I already have a camera. But the camera I have is big and bulky ... in your face ... so I decided to purchase a little cutie which I can pop in to my back pocket. And it is pink! Yes, how girlie. Now, I am usually very practical with these things. Normally I would buy one in black ... or silver ... with view to the fact that once I have outgrown it then I can pass it on to one of my boys ... they are both broad minded and level headed but they don’t ‘do’ pink . But I didn’t this time. I just thought sod it. I want pink. I am having pink.

So far I have taken one picture with my new pinkie camera. Yep, just the one. Of what? Of me. Yes, rather surprisingly of me. Me, who hates having my pic taken at the best of times ... and this definitely ain’t the best of times. Now, don’t worry I am not gonna post it anywhere. Not yet anyway. I think the description above probably gives you a pretty good idea of what I look like at the moment. Perhaps the word ‘pretty’ isn’t the most appropriate word to use ...

You know the last week has been really tough. The worst in terms of feeling physically poorly. I won’t lie ... there have been tears. But not that many really. Yeah, I got cheesed off ‘cos I wanted to enjoy Christmas Day. I didn’t want my children to wake up on their special day and see their mum looking and feeling so God damn awful. And all the nice things I had planned ... meeting up with my friends for brisk walks and leisurely lunches ... a Christmas party with colleagues ... have all been knocked on the head ... I was really disappointed about that. But mentally I could have been worse ... and am not quite sure why I wasn't ... why I haven’t dissolved in the middle of the kitchen floor. And the only thing I can put it down to is that I have felt so physically poorly that I couldn’t slip mentally ... ‘cos my mind and body would not be able to cope with both. Or perhaps when you feel so so bad that you know that the only way is up ... I dunno. So what has kept me going? Next Christmas. Yeah, I know, it sounds a bit odd. Especially from me ... who doesn’t really ‘do’ Christmas.

You know I mentioned that red silk dress of mine ... the one that I wore to the Christmas party last year. The one where my Little Friend said that I looked like Jessica Rabbit. Well, I have been thinking about that. Thinking about it a lot. And I have made a promise to myself ... that next Christmas I am going to be back in that dress ... and I ain’t going look like I did for Christmas 08 ... no, that is because for Christmas 2010 I am going look even better.

I am going to have the little pixie crop, just like I had done a week before my hair dropped out, and which everyone loved. My brows will be back ... and hopefully my beautiful long black lashes ... Oooh ... and as a treat ... I think I might buy some new cracking killer heels ... red of course. Then I will take a second photo with my little pinkie camera.  And I will be able to say ... that was last Christmas ... poorly, blotchy and hairless ... but I made it ... just look at me now. I am back ...

The future is bright you know. It ain’t orange ... ‘cos I don’t do orange. It ain't black. Nor grey. But it might be pink. It could be red.

The future is bright. And it is mine all mine.

Somewhere over the rainbow
Skies are blue,
And the dreams that you dare to dream
Really do come true.

Someday I'll wish upon a star
And wake up where the clouds are far
Behind me.
Where troubles melt like lemon drops
Away above the chimney tops
That's where you'll find me.

Somewhere over the rainbow
Bluebirds fly.
Birds fly over the rainbow.
Why then, oh why can't I?

Thursday, 24 December 2009

The Bad, the Ugly ... and the Good

I like to think that I am a modern, up-to-date, finger-on-the-ball kind of girl ...


Mmm ... I guess that is one of my problems ... at the ripe old age of 41, I still consider myself to be a ‘girl’. Note to oneself – New Year’s Resolution to find and adopt new and appropriate description ... mmm ... babe ... chick ... err ... maybe not ...

I love IT. No, not it .... I.T. Information Technology. It never ceases to amaze me that as a child, armed with my two penny pieces, I would have to run along the road to the smelly public telephone box to make a phone call. That we only had one TV in the house ...with three TV channels ... which didn’t broadcast all day, everyday. That the highlight of my week was watching Top of the Pops on a Thursday evening ... and trying to record the weekly number one on the Hit Parade. You know, pressing the play and record simultaneously ... and being desperately annoyed when Bruno Brookes spoke over the beginning or end of the song.

I embrace everything to do with new technology.  Texting ... instant messaging ... e-mailing ... surfing the net. Google!  I just lu-u-r-ve Google - the answer to everything. I have two ... no three ... no four websites ... two photography sites, Facebook and this blog. Photoshop, Pagemaker and Powerpoint, I adore them all. Internet shopping ... isn’t it wonderful? iTunes will never cease to amaze me ... you can find, pay and download an album in two and half minutes ... sod ruddy Bruno Brookes ... what happened to him anyway?

But ... there is just one little diddy thing that I have yet to adopt ... that I resist ... an electronic calendar ...

I can do it. I have the means to do it. I have the skills. I have a laptop. A mobile. An iPod. All those things would keep an electronic diary ... and to be frank if I used one of those then I wouldn’t have forgotten the wedding anniversaries of two close family couples this year ... I can’t even blame my turmoil for that, as they were both BBC ... formal apologies to those guys. But the thing is, I love my diary ... and that is OK ... after all ... who has heard of Bridget Jone's Blackberry ... or Raspberry as my former Chief Executive use to call hers ....

I don’t actually have a diary. It is a filofax. It is a lovely rich chocolately brown. And it is leather. Each time I get it out of my bag, before unpopping it, I surreptitiously raise it to my nose and take a discreet little sniff. Now ... you have got to admit I would pretty darn stupid sitting in a meeting doing that with an electronic device? Not only that, but my filofax is comfy and friendly. It is jammed with bits of paper, notes, things to do, photos, vouchers. It just kind of represents me ...

At the end of the year, before putting in the new, freshly laundered cotton-white clean pages for the next fifty two weeks, I enjoy opening my filofax and flicking through my diary just gone. A time for remembering and reflecting on the year of birthdays, celebrations, events, meetings, appointments. Though of course it was a bit different this year. It started off OK. Just fine. Then I got to July ... and it said Dr’s appointment. Then there were a couple of hospital appointments. Then it went rather quiet. With pretty much only bloods, oncologist and chemo scheduled every three weeks.

But then, on the other hand, I discovered a new game this year. Honestly, I did. It is called WOW. Yes ... WOW! WOW stands for “When O’ When?”. It is a bit like Patience or Solitaire ... it ain’t a team game. In fact it is a pretty exclusive game. Pretty exclusive to me that is. My starting block is the beginning of my diary and involves me going through the pages and wondering when exactly the Yukky Lump came in to my life ...

So when did the breast tumour appear? Was I sat at the Christmas table last year ... champagne in one hand ... a cracker in the other ... and the Yukky Lump in my breast ...? Was it bouncing up and down with me to Auld Lang Syne ... mocking me for little realising what the year was going to bring? Was it laughing at me as I tried to ski down that Alpine mountain in March? Was it lying there in my breast enjoying the warmth of the sunshine as I relaxed on the lounger and cycled the coastal paths in Royan in May? Of course the ‘game’ never ends ... as these are questions that I will never be able to answer. I still sit here and ponder how a 6cm tumour could flourish in my breast without me having even a little inkling. It just seemed to appear overnight. I only can only ‘comfort’ myself that I took action straightaway ... and ... although my health practitioners didn’t think that it was anything “suspicious” they took it seriously ... and the rest ... as they say ... is history ...

So does that summarise 2009 for me? "How was 2009?" Oh, I got breast cancer ... that is about it actually ... Well, no, that isn’t it. Yes, I did jump and down at a New Year’s Party last year ... happy ... a bit merry ... little knowing what horrific, life changing news would hit me within a few months. But I didn’t know something else either ... that I would get through it with the love, care and support from an army of people ... some I personally know ... others I don’t ...

Breast cancer is hell of an experience ... hell being the operative word. You really really wouldn’t wish it on anybody. There is of course the painful and scary parts ... the news, the treatments, the side effects. The slog of attending appointments ... being pricked and poked about ... powerful chemical cocktails that make you feel terrible ... both mentally and physically. Then there is the worry ... the unknown aspects about lots of things ... for this week, next month, next year ...

And I would have found all this totally impossible without an amazing mass of people who have supported me in so many ways. I have had friends and family who have sent me good wishes – regularly via text messages, e-mails, cards, telephone calls, comments on my blog. There are those who provided practical help - they have shopped, cooked and taxied me to and from hospital appointments. And then those that have whisked the children away for the weekend; who have picked me up and have emptied my head of worry and filled my lungs with fresh air by taking me to the moors or the beach; others that have organised jolly soirees and held lovely Sunday lunches, where I have chatted and laughed and forgotten my troubles. There are very special people who take my hysterical calls in the wee hours of the morning and still manage to sound as if they are pleased to be rudely awoken by my howling. And then there have been gifts ... flowers, chocolates, cakes, fruit boxes, wine, spa days, books and magazines, angels, stones, keyrings, DVD box sets, bundles of Fingers of Fudge ... the list is endless.

And there is more. There are still the people that don’t even know me. Comrades that I have not even met. Those who have been through this journey ahead of me. Who ring me regularly and tell me that I will be OK. Tell me that what I am feeling is normal. And those ... like me ... who weren’t expecting to be on this journey ... but sadly are too. Who offer me reassurance and comfort even during what is an incredibly worrying and stressful time for them.

OK – so this time last year the diary didn’t say that 2009 would bring me breast cancer. But it didn’t tell me other things that I have learnt too. That good can come out of bad.

To all of you ... my husband, my children, my family, friends and colleagues ... I want to wish you a very Merry Christmas and safe, healthy and happy New Year ... and show my appreciation by saying a huge thank you and sending you a big big festive hug!

Here’s to 2010! Px

PS - I think the festive celebrations may have started a little early.  I sat down to watch a film last night.  It was called Bridget Jones - The Edge of Reason.  For some unknown reason a number of my buddies sent me a text to say that they were watching it too and thinking of me.  Now ... don't get me wrong ... Bridget seems like a lovely 'girl'.  But she can't ski; swears like a trooper; gets stoned and stands in the sea; has legs 'only up to here' and will 'always be a little bit fat'; opens her mouth before her brain cranks in to gear; wears big knickers ... and definitely can't sing.  I suspect a bit too much mulled wine may have been consumed by my friends.... cos I can't for the life of me understand why I came to mind ...

"Like a W...iii...r...g ...i...n ...  Like a W...iii...r...g ...i...n ... touched for the very first time ...."

Friday, 18 December 2009

Can’t get used to losing you

Can’t get used to losing you,  no matter what I try to do, gonna live my whole life through .. loving you. Jerome "Doc" Pomus and Mort Shuman - 1963

It was Sunday supper. I decided to talk a little bit about the progress of my treatment to the boys. They don’t ask many questions and don’t talk about it too much so I try to subtly drop tidbits into day to day conversations. “This week I am going to the hospital to have some more medicine. And then it will be Christmas and then New Year, and then I will only have to two lots of medicine and hopefully that will be it. That’s good isn’t it?” I looked at them for agreement and there were little nods. “Hopefully it means that I my hair will grow back properly so that by the summer I won’t need to keep wearing my hats and scarves.” My little Harry-Potter-looka-likey stared at me intently. “I don’t think of you with hair now, I have got used to you not having any hair.” I smiled at him gratefully – then poked my Brussels sprouts around my plate – I wasn’t sure whether to laugh or cry. I couldn’t work out whether he was saying that to make me feel better – he is very thoughtful for someone of such a tender age. If he really doesn’t mind, if he doesn’t find it worrying, scary or embarrassing, then I am pleased. But I felt slightly mortified that if I was to be hit by a bus tomorrow his lasting memories would be that of me going to my grave resembling Shooting Star's George Dawes, not how I have looked for the previous ten years of his life. He has managed to get used to me losing my hair – better than I have.

Now, don’t get me wrong, if you don’t actually know me then I ain’t going to pretend that I am an oil painting – and if you really do know me then you will certainly know that I am not. But, with a bit of time and a lot of energy I was previously able to scrub up OK. Now, if Susan Boyle scores a one and Martine McCutcheon a ten in the looks department, then on a good day I could possibly push a four, or even sometimes a five. Obviously if we were talking about our singing skills then the balls would be reshuffled with Subo on a ten, Teens on a five and me on a one – I will say that before someone else kindly points it out.

I didn’t cry at Sunday supper but I am going to admit to you that there have been lots of tears over the last two weeks. Not sad little tears welling in my eyes and slowly and deliberately toppling over my cheeks and down my face. No, this crying has left me lying hysterically on the kitchen floor ... and cowering in the corner of my bathroom like an injured animal. My world has felt deep and dark. Why? Lots of reasons – none of which I can blame on the steroids on this occasion.

It started about a week after my first session of Killer Chemo. Killer Chemo was not too bad – I got aches and pains for about four or days, but they were manageable with some pain killers. I think the thing that got me more was a horrid swollen tongue and throat which lasted for about ten days. But after these side effects wore off I got a cold ... and swollen glands ... and a tickly cough which turned into a hacking chesty cough. It got so bad that at one point I lost my voice - the kids thought it was great. On a bad day I sounded like Whisper in the Bond films ... on better days I acquired at Demi Moore rasp. Two weeks on I still haven’t managed to totally shake all the symptoms off.

Now nobody likes being poorly but in my mind I started getting anxious about two things. One, that my white blood count must be dipping so low that my next chemo was bound to be postponed for at least week – and with three more sessions to go that means my treatment pathway could actually get extended by three weeks. In fact my chemo might not be done and dusted by the end of January, but flow well into February. Secondly, as someone who is prone to chest infections I was becoming paranoid that I could end up with bronchitis, or even worse pneumonia, that would result in me being admitted to hospital, which again mean delays in my treatment. I was so sure it would happen I took myself off to Marksies so that I could prepare an emergency overnight bag. Now, I might have been ill but I couldn’t consider going in to hospital without new matching nighties, dressing gown and slippers. I call it my After Eight Collection. Nah .. not because it is risqué ... but because of the mint and chocolate colourway ... so this season dahling.

Then on top of all my grotty cold and cough symptoms I then developed a really itchy red hive-y rash across my chest – very fetching – not. I wasn’t sure if this was a late side effect from the chemo, as the steroids had worn off, or whether I was allergic to the eye drops I was taking for the conjunctivitis ... yep, I had an eye infection too. Oh, and on top of all that, my swine flu jab decided to double the size of my arm ... and hurt. Oh, and top of that ... and on top of that ... my fingernail pads started to feel sensitive and I was conviced that the chemo was going to leave me nail-less and unable to type my pleading e-mails and texts to my wonderful army of supportees which are helping me get through this.

Then, in addition to this vast number of physical ailments I then got mentally low too. As my mind was coming to terms that my chemo could finish in about six weeks, it then started to consider the next step – surgery. Now, I am going to be very honest with you and tell you that I like my boobs. No, that is an understatement – in fact I love my boobs. In the past I have read articles of women who have had to have a mastectomy – some even choosing to have double-mastectomy proactively due to a strong history of family breast cancer – and I have recoiled at these stories. It could never happen to me – I could never imagine life without my boobs.  I can't bear the thought of them scarred, frazzled, disfigured or ... removed.

Some women say "Why on earth do you want to hold on to a breast that is trying to kill you?"  But my response is that it is the tumour - the horrid Yucky Lump - the thing that was certainly not invited into my body - that is trying to kill me - not my beloved boob.

Last year I went to a Christmas party ... aah ... those halcyon days. My little friend – the one who has one glass of wine and is suddenly no longer backward in coming forward in saying what she has on her mind – walked into the room and said “It is a shame it is not fancy dress, you look like Jessica Rabbit.” I looked at her quizzically and realised she was glaring at my heaving bosom in my red silk dress. I laughed. Even my late mother, who was also rather well endowed, but also quite conservative (with lower and upper case Cs) used to say “if you have got it flaunt it”.

And I am not the only one to admit that my boobs are part of my character. A few months ago a former colleague and old friend – who will remain nameless - rang me and we had a long discussion about my diagnosis. First of all we talked about the practical stuff – no longer being able to go to work – going for treatment – my hair falling out – then we moved on to the mental stuff. Missing the social contact – the lack of daily routine – my long term outlook – my boobs. “The problem is my boobs are so me,” I complained. “Paula ... the dark one ... big brown eyes ... curvy with boobs.” “I hear what you are saying”, he replied diplomatically. “Having sat beside you for a number of years I wouldn’t say your boobs are the very first of your characteristics that I recollect ... but I will admit they do come to mind.”

He is back in my life!! I thought after I made the flippant remark about turning up for my next appointment in my red and black lacey corset that he was refusing to come out from behind his desk. I thought I had lost him. Yes, I am talking about Dr O ... the oh-so-luv-ver-ly Dr O ... my Oncologist.  I went to see him Wednesday. He kept me waiting again ... at least an hour ... but ... don’t tell him ... I would have waited two or even three hours to see him. Cos he is so luv-ver-ly. Now this was just a checkup appointment and as I waited to see him I wondered if I would be whooshed through to make up time - but I needn’t have worried. Cheeko has Cheeko Time – Dr O has Dr Oh-so-luv-ver-ly Time – you walk in to that consulting room and all his attention on you. Making sure that you are receiving the right treatment, that you are not suffering from horrid side effects, that the medication is working. He listens, reassures and cares.

He first asked me about the Killer Chemo and the side effects I had endured. I explained and said they were bearable. I could live with the joint pain if it lasted only three or four days. I said that it was my sore throat and swollen tongue which I found the most distressing and most uncomfortable. He said that he could prescribe some mouth washes to help with those which was cheering. He then went on to say that Dr Gillies had noted in my file from at my previous appointment that the lump had appeared to have shrunk dramatically. I explained that this had happened early on – between chemos number two and three. “That sounds really encouraging. I think we might look to cancel your eighth and final chemo.” I could have hugged him – but he suggested that he take a look – so I stripped and jumped on the chaise instead. “Yes, that looks really positive,” he said. I then decided it was moment to go through the mental list of questions that I wanted answers to. I knew I had probably established the answers to many but I had built up the courage to hear the details from the expert. In hindsight, my timing was not ideal. I ended up having an intense conversation, lying half naked on my back, with a man I had only met on two previous occasions. After ten minutes I decided that I should get up and get dressed ... but that was probably not a good move ... I didn’t feel any more comfortable doing that. But hey, Dr O’s job is boobs ... in his mind boobs are probably two a penny ... though quite frankly you don’t get too many of mine to the lb.

“So, what percentage of neoadjuvant chemotherapy treatments result in lumpectomy instead of mastectomy?” Quite a few”, he replied. So I pushed “But does it depend on how the lump shrinks? I can’t imagine that they all shrink in the same way?”. He replied “No, they don’t. With you we may have to go for the mastectomy because your lump has shrunk so much that we may not be able to find where it was. If we can find dead cells or calcium particles then we could possibly go for the lumpectomy, if we can’t then we will have to go for the mastectomy.” I didn’t have to tell him I was crestfallen ... or chest fallen ... he could actually witness that. They may have lost my lump  ... but that might mean a mastectomy ... just what I didn't want! “The thing is, there are many benefits for giving chemo before surgery. For me, as an Oncologist, my priority was to get the chemo in there to stop your large and aggressive tumour from growing, and hopefully make it shrink. By not doing the surgery first then we can see what progress we are making, we can hopefully see that it is reducing. It also means that if it is having an impact on a 6cm tumour like yours, then we also know that it blasting any lose cells which are floating around the rest of the body. For me, if we can offer the lumpectomy that is good but the priority will always be to get rid of the tumour.”

"Very, very occasionally we don't do surgery or radiotherapy but in your case I am sure we will.  Because you are Triple Negative (a type of cancer I have) this is it - there is no further treatment or medication for you - we need to throw everything at you now to make sure that it is gone and to stop anything coming back."

I knew what he was saying ... and of course he was totally right ... though in fairness my concerns about having surgery, but particularly a mastectomy where all of my breast removed, rather than part of it is not purely cosmetic, I know that the more drastic the surgery the greater the risk of infection, extended recovery time and possible longer term complications.

You know, I have been kicking around this parallel-cancer-universe for some time and am not complacent. I know that in comparison to many many others I am ‘lucky’. I know that there are women out there on the same or similar aggressive chemo regimes who are not seeing the same dramatic results that appear to have happened for me. I know that there are women who are not seeing their lumps shrink and that for a few the lump continues to grow. There are also those who are experiencing horrific side effects from the chemo, who end up in bed for nearly the three weeks of their cycles, or become poorly through severe reactions and end up at A&E, or become chronically ill with life threatening conditions and end up in hospital. There are also people who have fought cancer to see it return, people with secondary cancers, people with terminal conditions who will not live to see this Christmas, let alone next Christmas. There are people who have every right in the world to turn around and say to me “You are a totally ungrateful vain cow. You have had treatment and it has appeared to have worked well. That is what matters. Yes, they may have to remove your boob but you could be cancer-free. You may have a pretty good chance of going away and leading a long and healthy life. I have a brain tumour – there is no option for me to have my head chopped off.

“So what about my bloods?” I asked Dr O.  He nodded positively. “They are absolutely fine. You can have your chemo tomorrow no problems.” For the second time I resisted giving him a big hug, but instead I gave him a beaming smile as I walked out of the door.

Chemo went fine. My veins decided to behave and we didn’t have the bursting problem that I had to endure before. “Right", said Chemo Nurse G - yes a different nurse again - “all done, you can move into the lounge.” Oooh, I wasn’t sure about that. Up to now I had enjoyed sitting in my little private consultation room. As I walked out to the main area I felt like a ‘real cancer’ patient ... hat on my head and pushing the large drip stand. I stood in the entrance and I quickly tried work out the best place to sit. Being attached to the wheelie drip meant I couldn’t move quickly and inconspicuously. I took at seat against the back wall and looked around. This was ‘professional cancer’ land. What you imagine when you think of chemo treatment. Very poorly people who have moved in for the day or even days. They come prepared with books and magazines, iPods and packed lunches and teas.

I looked across at the chap opposite me. He was sleeping. I was surprised. Not that it was particularly noisy in the lounge but it seemed out of place. Then I realised that he was indeed in a bad way. There were four drip bags on his stand, which were going through to some kind of port attached to his nose, one of them was morphine. A girl came along and woke him by saying “Morning Bob.” Bob grunted. You couldn’t blame him – after all who is cheerful when they are rudely awoken. She was a dietician. “How is the eating going Bob?” He turned away from her and went in to his bag. I watched nosily. What was he doing? He got a large crumpled writing pad out ... and started to write his response. It then dawned on me. Bob couldn’t speak. Sadly he had lost his voice through something like cancer of the mouth, throat or oesophagus.

I believe in coincidences. I am not weird or wacky or alternative. But I believe in fate. That some things are meant to be. Accidentally bumping into old friends ... making a new friend with  a stranger on a bus ... whether you get that job or new house. And yesterday, I think that it was my fate to sit next to Bob. Bob, who due to his awful illness could no longer communicate verbally. Can you imagine what that is like? You can’t talk to your friends, you can’t call anyone on the phone, you can’t even reply to the offer of “tea or coffee?” What would be like for me to permanently lose my voice? My job has ‘communication’ in the title. I speak to lots of people all of the time. By phone, in person, in meetings, presentations at conferences. What about my home life? How wouldn’t be able to ask the boys what kind of day they have had, cheer them on at a football match ... or shout at them for leaving bags, boots or clubs at the kitchen door. What about my girlie chats ... about lovely girlie things. How would I order a meal ... or a drink ...? No more singing or witty jokes.  What means would I have to ask where they have moved the toilet rolls for the sixth time in six weeks at Sainsbury’s? How would I tell the ones that I love ... that ... well ... I love them. The list is endless ... bringing a whole new meaning to whispering sweet nothings.

Fate? On Thursday morning there was my wakeup call ... sitting right in front of me.

Bob or no boob? If you need to ask me the question then you have lost it.

Friday, 11 December 2009

An A to Z of ABC

"Well ... that was like attending a Help the Aged Christmas party", I declared, as I stomped into my doctor’s consulting room. He gave a wry smile, but said nothing. I am sure he was thinking “Oh thank God we don’t have too many like Paula".

Of course, if it had all gone to plan then it would have gone well. But of course, things don’t. It was Tuesday morning of my third week and I was due to have my bloods and flu jabs. The flu clinic happened to coincide with my bloods appointment and I worked it out that I should have been in and out in about half an hour .... Yeah right, two hours later ....

I turned up at my doctors’ surgery at 10.15 and asked to see the doctor. “Well, open surgery closed 15 minutes ago.” I know I shouldn’t but sometimes people just annoy me and I have to play my trump card. "Due to my cancer and chemotherapy I have a low immunity so I try to come as late as I can so that I am not around too many people", I said smugly. Unfortunately I didn’t know that she hadn’t yet played her trump card that morning and she responded with “You are out of luck today” and pointed to the waiting room. I spun round and the place was filled with elderly people who were waiting for their flu jabs. Lots and lots of them. I sat there for about ten minutes observing and listening to their conversations. Honestly, it was like being at geriatric kindergarten. If I had a pound for every time I heard one of them say “There’s no spare chairs, you’ll have to come and sit on my lap.” or, even worse, "Everyone else is having their jab in the arm, I've told the nurse to do yours in your arse." After ten minutes I returned to the receptionist. "I’ll stand outside", I said. Honestly, I want to get through this cancer crap. I want to grow old. But I really don’t want to be old.

I got my winter flu jab and the first of my two swine flu jabs about twenty minutes later but had to wait another hour to see the GP for my bloods. Once I got there I sat down with a bump and he said “How is it going?"Oooo ... Kkkkk ...", I said, not very convincingly. “Fed up with going round the system?” "You’ve nailed it", I replied.

Now I like talking. OK, perhaps that statement is a little broad and I was probably asking for a bit ribbing on that one. Let’s start again ... I like communicating and dispelling myths. When I was at work at it was part of my job, now I do it talking about cancer and the treatment to my family and friends, and through this blog. There are probably three questions that I am asked the most. Where people sidle up to me and say “Psssst ... tell me ....” I call them the A, B, C Questions. A = Alcohol? B =Bare? C = Chemotherapy.

The first question is: “So, can you drink when you have chemotherapy?” Now, there are some things that I can’t have. I can’t eat shellfish, soft cheese, uncooked egg or live yoghurt, because of my lowered immunity these things could make me poorly, but I can drink. I guess the chemo chemicals are so poisonous that a glass or two of wine is no great shakes.

The second question is “Do you really lose your hair everywhere?” The simple answer is yes. With some people the hair drops out absolutely everywhere and they are as smooth as a baby until the chemo treatment stops. Then there are others, like me, where it drops out in stages and you have hair growing back whilst other areas are still losing it. My head hair dropped out a few weeks after the first chemo and is trying to grow back again but is struggling against the lethal cocktail that keeps getting pumped in to my body. I still need to ‘do’ my legs, but not as regularly as usual. And ... I now have to very reluctantly admit that my brows and beautiful long black lashes are just stubble.

And finally, the last question. “What actually happens with chemotherapy?” Well ... until a few months ago I had no idea. Like most people my image was of patients sitting there for hours on end looking really poorly. And, I suppose, at some point it was probably like that for a lot of people, and even now for a few, but my experience has been quite different.

My chemo takes place every three weeks, on a Thursday. On the Tuesday before I have to go to my GP and have my bloods taken. My bloods are then sent over to the hospital to check that they have returned to normal since my previous chemo three weeks before. All being well ... which touch wood has been the case so far ... I then attend the cancer/chemo unit on the Thursday morning.

Now I don’t know if you are aware of this but there are in fact 200 different types of cancer ... and over 50 chemotherapy drugs to try and kill them. Research shows that women with breast cancer may benefit from chemotherapy but its effectiveness depends on the type of breast cancer; the size of the tumour (in my case it was 6 cm); the stage of the cancer – the extent of spread (stage 3 out of 3 for me); the grade of the cancer - potential to spread (grade 3 of 3 in my case). Yep, the Yucky Lump was pretty big and aggressive so it is good news that the chemo seems to have already had a pretty positive effect on it.

Chemotherapy can be used before surgery to reduce the size of the breast tumour to make surgury less severe. It can make the difference between taking off the whole breast (mastectomy) or just removing the lump (breast-conserving surgery) which is hopefully what will happen for me. Chemo is also given after surgery to reduce the chance of breast cancer coming back or to reduce the chance that breast cancer will grow somewhere else.

Chemotherapy may be given in different ways, depending on the type of cancer and the chemotherapy drugs used. Most often chemotherapy is given by injection into a vein (intravenously) - which is what I have – but it can also be given as tablets or capsules or injected into a muscle or into particular body areas. Chemotherapy creams are also used for some cancers of the skin.

When I go to the hospital I go into a little consulting room and the Chemo Nurse (CN) puts a short, thin tube called a cannula into a vein in the back of my hand. A clear bag of fluid (a drip) is then attached to the cannula by a tube. When I was having my first chemotherapy drugs, EC, these were given manually by injection into a rubber bung in the tubing of the drip. What got me with the EC is that the drugs were in these huge syringes and I would sit there politely looking the other way, but because due to governance reasons, the nurses would wave these ruddy great syringes in front of my face saying “And this is your name, and this is your date of birth, and this is your hospital number and this is the expiry date ....” Thankfully with my new chemo, Tax, it is given directly from drip bag and with my first time the nurse even put a little cover over it so I didn’t have to watch it being administered.

Now, I have been through my fair share of Chemo Nurses. If the first one was “A”, then the last one I saw was “F”. I have never seen the same Chemo Nurse twice. The first one ... aah ... you never forget your first one ... Chemo Nurse A was very gentle ... just the sort of nurse you need when you are crying hysterically in the middle of the waiting room. She had just returned from her holiday cave home in Spain. Chemo Nurse B ... oh she also lives in Funky Town and we talked about the pros, cons and expense of that. Chemo Nurse C ... she had responded to the NHS’s international recruitment drive about ten years ago and we talked about returning to India ... oh, and holidaying in Scotland. Chemo Nurse D .... errr .. oh yes ... the perils of raising teenagers ... and gig racing.

The last time I went for chemo I met CN E. "I am starting to get a complex", I said, as we walked in to the little consulting room. "Oh yes", she said, "why is that?" "Well this is my 5th chemo and I haven’t seen the same Chemo Nurse twice. Perhaps I have earned myself a bad reputation?" "Well", she said, "I can assure you there isn’t a big sign up in the restroom saying Patient Paula Alert" "Oh ... well I do get a bit emotional", I explained ...

Like all the nurses she was very nice. Actually, she didn’t talk very much ... instead she asked me about me. Not just about the chemo treatment and the side effects ... but the mental stuff ... about my world ... my cogs. I told her that I had been OK on the EC but was scared about the Tax. About the side effects. That I get depressed on the steroids and vent my anger and frustration on doing the housework – going to war with the Hoover and mop. She empathised with what I had to say. She also wondered whether I might like to talk to the Clinical Psychologist. She wasn’t the first. Both Chemo Nurses A and B had suggested the same. I said I didn’t have a problem with talking to a CP and that I was still considering it. But to be truthful I am wondering if she could handle me. I think it might be only fair to forward her details of my blog – then, once she has read it – she can let me know whether she feels strong enough to take me on.

It was after that conversation that the fun started. CN E tried to put the cannula in so that the chemo could be administered. She put the first needle into my arm – pop! "OOOw!" I said, "that hurt". "I’m sorry, your vein popped", she said, "I will try again". "OOOw!" Yes, once again it exploded and again it really hurt. "I am usually really good at this", she said, "I am sorry". I knew it wasn’t anything to do with her competence. So she tried again ... and once more, it was my veins just saying no, no, no ... they just were not having it. "Look", I said, "in the last couple of days I have had bloods, two lots of flu jabs and my body is protesting at having a new chemo". "I can’t try again, three times is enough" she said. "I am off to get reinforcements". I looked out of the window ... through tear filled eyes.

“I hear you are playing hard to get?” I swung around as CN F walked into the room. Now, I have now made it to season 3 of Sex and the City and I think Samantha might be having a bad influence on me. My response just popped out without me thinking. “Well ... now they have sent a chap in, I might just change my mind.” Thankfully, CN F got the cannula in and I finally got my chemo. After he walked out, CN E was obviously a bit miffed. "He had the same problem", she said, "but he obviously wasn’t as compassionate as me". "Typical man. Wham bam thank you mam", I assured her.

I am now well and truly in the middle of my treatment. Depending on when you ask me depends on how I view my progress down my treatment pathway. On a good day I am celebrating the fact that my final chemo could take place in six weeks and six days. On a bad day, when I push my treatment timescale to the ultimate limit, I wonder if I will be absent from work for every day of the six month sick note that my GP has just issued. My white blood count has taken a battering and they had to ask Dr Gillies for the go ahead with the chemo last time. If my white blood count doesn't rise sufficiently then they will delay the treatment for a week - which means the chemo could go well into February rather than being done and dusted by the end of January.  It will also be postponed if I become poorly ... and sadly one of the consequences of a low white blood count is that you are much more prone to infection or illness.

If the start of this BC journey was like a mad rollercoaster ride then I can now tell you that it now feels like I am sitting on the Magic Roundabout 

“Time for Bed” said Zebedee. “Oh good idea” replied Samantha.

Friday, 4 December 2009

The train now leaving platform 5….

At times like this, continuing with one's life seems impossible... and eating the entire contents of one's fridge seems inevitable. I have two choices: to give up and accept permanent state of spinsterhood and eventually be eaten by Alsatians... or not, and this time I choose not. I will not be defeated by a bad man and an American stick insect! Instead, I choose vodka. And Chaka Khan.

I had a party to go to this week. No, not one of my exclusive cocktail parties ... that was last week. This was a real party. You know the type - one with other people – guys in dickies, chicks in pretty frocks. There was a bit of food, some drink, celebrations and dancing. Not only that, it was in London! A party and the chance to get away for a couple of days. I’ll explain …

It all started back in July. What feels like eons ago for me. BBC (Before Breast Cancer) time … when I was still enjoying my tick-along-life … little knowing that the Yukky Lump had unsuspectingly started squatting in my warm and welcoming boob. In fact, by then it was probably so comfy I can imagine it was laid out in a gently swinging hammock, legs crossed, sun hat on and chewing on a grassy straw.

My organisation had been invited to nominate itself for a prestigious national award. I had been meaning to fill in the application for weeks but it was quite lengthy and it kept slipping to the bottom of my ‘to do’ pile. It got to 5 o’clock on the day of the deadline – the Friday afternoon of a long week. I wanted to go home and put my feet up with a glass a wine, but I had promised myself, and others, that I would give it a go. In the end I spent the evening glued to the computer and eventually submitted my application at half eleven – 30 minutes before the midnight deadline.

I received the call to say that we had been shortlisted during the horrid grey and gloomy ‘no man’s land’ between my Dr’s appointment and my diagnostic visit to the Breast Care Unit. It was probably the only occasion during that awful period to bring a smile to my face and a cheer to my voice.

A couple of months ago my director wrote me a letter to say that there were a handful of places at the actual award ceremony and that he had nominated me to go as I had made the original submission. I was delighted ... and touched ... but had to send him an e-mail to say that there was no possible way that I could attend. For starters it was only a few days on from the first cycle of Killer Chemo, just as the side effects were due to kick in. But that was only the beginning. If I was to go then I would have to get the train up to London – sitting with a hundred or so possibly infectious people – plus more coming and going along the carriage. Then, once in London, I would have to get on the underground. At rush hour. A definite no no. And then, once I had struggled up and down the escalators with my luggage I would need to get from the station to my hotel. In reality if I made it to Marble Arch then the chances are I would be found lying on my back asleep with commuters throwing their spare change at me, making comments that I would make more money if I adopted a dog or played an instrument.

If ...  if I did miraculously make it to the hotel ... then I would for sure be asleep before the hors d'œuvre were served. However .... with the steroids I have been on ... I would be awake at 3am just as everyone else was sloping off to bed. I have this image of me going downstairs after my nap, and with renewed vigour, forcing the tired DJ who thought he was about to go home, to commence a little private disco. Me standing there isolation in my pinky jim jams, BJ style, singing “All by myself”

So of course I didn’t go. Mr Campbell went in my place – here he is letting his hair down. Beforehand I was quite benevolent ... I sent him a text saying “I accept I can’t be there so I hope you and the gang enjoy yourselves.”

Well ... that was until I found James Nesbitt was there. Yes! James Nesbitt. Cold Feet’s James Nesbitt! Now, I luuurr..vv..e JN.  No … not in that kind of way … but he is such a cheeky chappy .. with an Irish accent to boot. Though … in hindsight … it is probably just as well I didn't go. Knowing me, I would have got tiddly on a glass or two or champagne and told him how much I cried when Rachel died and asked him to put a rose, or any kind of foliage to hand, between his “cheeks” …

So instead I remained at home waiting for my side effects from Killer Chemo to kick in. What one of my BC chemo cyber friends described as “a 125 hitting me”. And yes, my train arrived on Saturday night ... joint and muscle pain gripping my body. I had backache, then earache, tummy ache, then pains in knees and so on.  In fact pains where you just can't imagine ... well,  places that you are fortunate to know exist ... if you know they do ... As well as a sore throat, sensitive gums and cardboard mouth ... which I still have even now ... so food is tasteless and I can’t eat bread or pasta ... not even pizza.

I am gutted I couldn’t make it to the bash, but, like Bridget, I am adamant that I won’t be defeated. I think in the next day or two I might put my party frock on, pour a little vodka, put some music on and dance around my bedroom. Cos let’s face it ... it doesn't matter what I currently look like or feel like ... I am sure you will agree ... I'm every woman ... I'm every woman ...