The Mean Reds Part 4

In the film Breakfast at Tiffany's Holly Golightly describes having the 'Mean Reds'. Worse than the blues, to quote Audrey Hepburn from the film she dismisses the blues as being those days when you are getting fat or it's been raining too much, you're just sad that's all, but the mean reds...well they are in a league of their own.

"Suddenly you are afraid and you don't know what you are afraid of" is how she describes them..

I went to the surgery to see one of the doctors about my leg, an infection I had from an old horse riding wound needed checking on as it wasn't healing. I'm not keen on this particular GP, he messed up something for me a few years ago and I have avoided him ever since. However I was told that he is good with infections so I parked my real feelings about him to check up on my leg. The appointment didn't take long and I was ready to leave after only a few minutes. He however had something on his mind he wanted to discuss with me.

"I have noticed from your notes that you have breast cancer, I'm very sorry to see that" he said.

He then went on to mention how interesting it was because my levels of CA125 had been quite high back in May. Of course I already knew about this, CA125 can be a marker for cancer, it is something to do with the level of a particular enzyme, the normal level is around 35, anything higher and they start to worry. Mine was at 100.

"It's fine" I said really not wishing to enter into a discussion with him.

"That was all put down to my abdominal fibroid, they did think it was ovarian cancer and although it was pretty scary at the time in the end it was decided the levels were elevated due to the fibroid". I said, done with my explanation.

I made to get up and leave but he hadn't finished with me yet.

"Well that is what is terribly interesting" he continued, "There must be a link between ovarian cancer and breast cancer, especially with any family history of either cancer".

He looked at me half smiling as he relayed this news, there was an element of discovery in his tone as he continued telling me about a patient of his with the same thing, turned out she too had breast cancer, and her levels of CA125 were also higher than usual. He found this nugget of information fascinating, it pleased him no end that there was this potential medical breakthrough which had not been confirmed but which he had deduced by looking at my notes and comparing it with his own case. Clever man.  He was certainly quite happy to be sharing it with me. I felt sick as I took in what he was telling me.

"Does this mean they could have found this back in May? Four months ago?" I asked, in disbelief.

I watched as, metaphorically speaking, he climbed onto a fence as he could see me registering the impact of his conclusion. He refused to admit anything all the while mumbling something about 'it being highly unusual to link the two' and there was 'no definite link just a possibility' but 'wasn't it interesting?' Not for me it wasn't, it was frightening, although quite what I was scared of I wasn't yet sure.

Catching something like this early is important, it is hammered home to girls and women of all ages how we should check ourselves again and again because the earlier it is caught the sooner they can treat it. Was he saying that they should have / could have checked and then insisted on a mammogram just to rule things out? Should it have been caught before, maybe, before it started hurting. If there was a teeny tiny chance that it may have been linked then should I have been screened? It's confusing enough at times in my head but at that point it was bedlam.

I'd had enough and stood up to leave.

"Your leg is making good progress" he said, I was nearly at the door.

"Of course the chemotherapy will set that back" he said.

Even my consultant wouldn't confirm what my treatment would be until after my operation, yet this GP with the limited knowledge of my case set out on a screen in front of him felt he was perfectly able to blithely pass on this terrifying piece of information with all the compassion of Genghis Khan.

I walked out before I lamped him.

I did write a letter of complaint and they have assured me there will be an investigation,  I have asked that even if there is a glimmer of a link then anyone with high levels of this enzyme need to be offered a mammogram. It isn't enough to dismiss it as a theory, the procedures need to be changed.  I have no idea what is ahead for me, I won't know a thing until I'm given the results after my operation and that is a few weeks away. One step at a time.

I'm almost looking forward to the operation, it won't be pretty but I certainly need to know what I'm up against. That's the thing with the Mean Reds, once you know what the frightening thing is, it's not quite as frightening.

One lump or two? Part 3

It would appear I am bang on trend, October is the flagship month for cancer, It's on television, in the papers and the radio and even Davina McCall is involved so it must be popular.

Every magazine, newspaper and radio station is discussing how brave people everywhere are battling or surviving it. I don't feel brave at all, given the option I would rather pass and run for the hills and I'm sure yellow would suit me better than pink. But there are no options available to run away or to decide not to have this, I don't have any choice and that does not make me brave, actually it makes me very irritable.


To begin with I read every article I could find on the subject, I wanted to know how others were dealing with it, the young and the old, the famous and the not so famous, now that we shared this common thread I really needed to know how to cope and I wanted them to be able to provide me with all the answers. Fat chance. There is no right or wrong here although fascinatingly there are Dummies Guides to breast cancer, chemotherapy and radiotherapy, Christmas presents? Sorry, I'm digressing, I want to say that everyone owns their cancer differently, reactions and experiences may be similar but ultimately it belongs to who has it and their character and personality will dictate how they manage it.


The stories I read were very inspiring, but they also made me feel as if I should be doing more, I don't mean they were preachy, quite the opposite, the women I read about (mainly women because we do like to talk about it) were amazing and dynamic and all those other positive adjectives, but the trouble was I didn't feel quite as brilliant. I felt I should be out there like they were...somewhere, dancing, climbing mountains, saving the world, starting a charity, something, anything... cancer it seemed was a bit like Bodyform, you could be and do whatever you wanted. Trouble was I wasn't at that stage yet I wasn't even close. I was still having difficulty believing this was real let alone the right time of the month for skydiving.


More levels of inadequacy were developed one Saturday while doing the supermarket shop. The boyfriend attempted to veer me away from the joints of meat I was looking at and towards the fish counter at the supermarket. His reason that he simply didn't want to eat meat until the winter didn't ring true, it was very disconcerting, despite a planned out menu and shopping list I could not change his mind, I didn't want to cook fish at all but he looked so fed up at the prospect of meat I just couldn't understand why and then it clicked - In his desperate need to be useful and make everything better he had researched and found out that when faced with this sort of diagnosis there are good and bad foods, fish is very definitely on the 'good list' and pork shoulder is not. I understood, I knew he was coming from a really good place and meant well...nonetheless the reality of it was shocking so I had a bit of an unexpected meltdown in the bread section. This thing that I could not yet accept was even having an impact on our grocery shop, holding onto the trolley and with tears pouring down my face I tried to explain that I hated that I had no control over what was going on in my body, but I could see, looking at him that I wasn't the only one having trouble.

We had salmon for dinner.

It didn't stop at fish, we now have a fridge full of probiotic yoghurt, every morning I drink freshly squeezed lemon juice with hot water and freshly squeezed orange juice, I am stuffed full of fresh green veg and if I'm out I am given little tupperware boxes of dried fruit, brazil nuts and walnuts. I have clear skin, shiny hair and the irony is I could not look healthier. It's fine, he's happy and I am still allowed red wine...

Back in to the hospital for the results of the last MRI and it turned out they hadn't finished with me yet, another lump had shown up on the other breast which was obviously feeling neglected, my lymph nodes needed sampling too so it was back to impersonating a pin cushion in the dark radiology room and then home again to wait for more results.

This was a really low point, I thought the MRI was the key to letting us know what was going on and where it was going on, as it happened it just threw up more questions. Hundreds of photos taken for the purpose of mapping me out for my operation, who knew there was so much to take in while at the same time not learning anything new. The clever Macmillan people had put on their website that you will know nothing about what you are dealing with until after the lumpectomy. They were right and I wished I had checked their site sooner. It doesn't matter how many needles you are popped with, how many scans you go through or photographs are taken, until that 14mm ball of mucky cells is removed from me in two weeks time and then analysed I really don't know very much at all.

I wish I could feel more excited about the progress in modern medicine but it definitely feels less appealing when it's actually happening to your own body and not just part of some random discussion group. The lymph node sample came back inconclusive, so the plan is to biopsy them during the operation, they can do that now, remove a part of you, test it while you sleep and make a decision based on the results. Amazingly important, the lymph node system is a bit like a fast tracking courier company within our bodies, they pass things all around and their network makes the London Underground look like child's play. Great for all the good stuff which needs to work it's way around your system, not so great when cancer cells have a ticket to ride around your body causing havoc.

There is good news, really excellent news, the other lump was nothing to worry about, just trying to muscle in on the act. I should have been delighted, I was delighted, when it sinks in I will be very happy indeed. Just two weeks to wait for an operation which I am busy pretending will be an absolute breeze. My plan is to become very relaxed and zen like so I will be totally prepared and be up and about in no time.

Best laid plans and all that.....

Fine Lines - Part 2

Results day...

There is a fine line between pretending nothing is wrong while admitting to a small part of yourself that you are in fact absolutely bricking it.

Driving down to the hospital the boyfriend and I were very quiet. Arriving at the hospital I asked him to wait in the car as I figured I'd be out pretty quickly, no point in going to the hassle of parking, I was confident I'd be out in 20 minutes. Half an hour later having worn out the pages of the magazine I wasn't reading I walked in to see my consultant smiling at me.



"You are certainly walking better than last week"


"Yes" I replied, I'm feeling much better thank you.


"You have breast cancer"


"No I haven't"


"You have breast cancer"


Right. Quite shocking that when you've been in denial for the best part of a week or is that a month? The boyfriend needed to be fetched, I can't remember what they said they needed to do next, more needles, a sample of my lymph nodes, nothing was going in, nothing. Was I with anyone? Yes, the boyfriend, but I needed to go to him, I couldn't let the nurse try and find him, not with this news. They carried on talking but I was sort of listening and sort of not, procedures and details and scans I needed were discussed but the conversation just stayed in that room, hanging in the atmosphere. I did not know what was the right thing to do, I was worried about taking it too seriously in case it wasn't, and I was worried about laughing it off in case it was. No information was going in. The sympathetic expressions on the nurse and the consultant made me cry but not because I felt like crying I just seemed to have no control over it.

I went outside and saw the boyfriend leaning against the car enjoying the warmth and the sunshine, he hadn't seen me and as I walked towards him I willed him not to look at me, I walked slowly and quietly wanting him to enjoy the moment before I wrecked his head and heart with my news. He just held me, almost too tightly and I let him, I pretended not to notice his tears and off he went to park the car being a practical sort of bloke.

Sitting with the consultant and the nurse and the boyfriend going through all the different procedures and possible treatments I started to feel a bit removed from everything, surreal, unreal, it didn't feel as if it was about me at all. The turning point came when I was told that during my lumpectomy I would be injected with a blue dye, the consultant was very serious as he told us this. We needed to be prepared for the fact that I would be a sort of blue / grey colour for about a week. Nothing to worry about just better to know in advance. It was inappropriate to laugh but I wanted to, I wanted to laugh loudly in the face of it all... Would I suit being grey? After all it's one of my favourite colours to wear, I've my own version of fifty shades of it in my wardrobe. Would anyone notice or would they just assume I was 'off colour'? In that moment, as the shock wrapped itself around me so did the blackest sense of humour. Cancer? I was having none of it.


I spent the next few days being either very bad indeed (black humour which didn't go down well with everyone) or being terribly reassuring and grown up about it all. Often my reaction depended on the people I told... Telling someone close to you that you have cancer is difficult, for them to know what to say back is just as tough, another of those fine lines to be treaded carefully. I listened to all the stories of those who had a friend or knew of a friend of a friend who made a full recovery, I was told countless times that the success rate was remarkable, one in eight women have breast cancer apparently, frankly I began to feel like those who didn't have it were missing out if you were going to have cancer then this was the one to have. I made jokes about it safe in the super absorbent layer of shock I was wearing, enjoying the effect the darkest sense of humour had on my friends and family. The boyfriend struggled with even saying the word until I became angry and yelled at him that we would not be frightened by this thing, it was just a word, it would not take over everything to the extent that we could not even say it's name.

My third visit to the hospital that week was for another MRI, this time I'd be lying on my front. Egghead again, I cracked a joke about being back in because I loved it so much, he looked at me and apologised for not recognising me but he really was having the week from hell. I figured it wasn't a competition and as he didn't ask me about my week I kept quiet. Another needle and another unflattering gown. No Irish this time but they did turn the volume up this time, this was much worse, I had to lie still listening to really bad pop music and with no way of turning it off the loud bangs from the machine came as a blessed relief.

Four days after the diagnosis and the shock finally wore off and the reality hit me, it wasn't pleasant. It doesn't matter how you dress it up, it is what it is. I know that there is a high recovery rate, I know that everyone knows someone who is absolutely fine, but every aspect about this damned thing is serious, painful and uncomfortable; from the constant puncture of the needles as you take test after test or have scan after scan, to the contraptions you have to shove yourself into. I'm not complaining, not yet, just making the point that I am here and a full recovery is all the way over there, and for now that is taking up a lot of room in my head.

It's not supposed to hurt...Part 1

Cancer is painful, that was a shocker.

I regularly sleep on my front and the sharp pain had woken me up. Several times. After a week of this I had a feel around, not even sure what I was looking for but there it was, the lump, just above my left breasticle heading towards my armpit. And it really hurt especially if I pressed it, "stop bloody pressing it" said the boyfriend. No, it's okay I said, that's good, they always say that cancer doesn't hurt. They lied.

The straight talking Spanish doctor at the local surgery told me she didn't think it was a cyst and wanted me in for a scan asap and still I wasn't worried, she even mentioned the word biopsy,and still I wasn't worried, if anything I felt weirdly important and busy I felt far too busy for this, I was off to France for a week and I didn't have time for a lump of any sort. And they had been wrong before, back in May they had terrified me then skirting around the actual word but putting heavy emphasis on any benign options. At that stage I'd been in with a huge lump in my abdomen and having been rushed through all sorts of blood tests and scans I spent a sunny weekend planning my funeral. It hadn't been cancer back then, despite high levels of some enzyme, it was just a fibroid, it still needed to be removed but I could put the funeral plans back in the drawer.


As I said I had a lot going on, a holiday in France and a proposal from the boyfriend to accept, I did not have time to worry too much about a scan which was bound to be fine, even if they had talked about a biopsy. However, like one of those 80's stress relief ball clicker things, I could feel the slow knock knock knock of a gentle but persistent reminder in the back of my mind telling me that this was a little bit more serious and it was painful, definitely painful even if I had stopped pressing it. It was the sort of pain that makes it presence known every so often, an unpleasant reminder of something not quite right. I decided to completely ignore it and I celebrated my engagement with wine and happiness and shellfish, and instead I allowed the tension I was really feeling to sink into the small of my back.


Back from France and back to earth, I had one afternoon of teaching to do and then the scan / biopsy / get out of hospital free card the following morning. Unfortunately one phone call and one wrong move and all the tension which had been building locked my back, I couldn't stand, I couldn't sit and I definitely couldn't teach, I was in so much pain I could barely stand. It certainly took my mind off the lump.

A biopsy is a medical procedure that involves taking a small sample of tissue so that it can be examined under a microscope.

That sounded straightforward enough, they just needed to take a closer look, rule out all the frightening possibilities and allow me to carry on. I met with the consultant first, he saw me walking towards him like an upright crab and recommended I go back to to my GP about morphine for my back, I figured then that him and I were going to get along just fine. He talked me through the biopsy and that I would need to be back in the following week for the results. It all seemed a lot of fuss about nothing to me but I nodded and pretended I was concerned.

The radiologist was far more business like, very business like in fact as if my role as the patient was only secondary to her VIP position as someone who knows. She took little notice of my hobbling in with invisible crutches, I eased myself onto the bed and struggled to stretch out on my back. Meanwhile she busied herself with important looking instruments in the darkened room and started looking around for the lump with some gel and something I imagine would feel like the smooth end of a vibrator. Whilst checking the monitor she asked the nurse to adjust the height level of the bed, when a few jolts didn't adjust it enough (although it nearly finished me off) she told the nurse to leave it till later and sighing she said "I was just trying to save my back".

Now that we were firm friends she stuck a couple of needles into me and I followed the surreal progress on the monitor. She then did another one, just to be on the safe side, of course, why stick at one needle when you can have two?

I can't remember much in the days following the biopsy, I can't remember if I was worried or not, I don't think I was particularly. I remember after the biopsy having a lovely day gingerly walking around Goodwood Revival with my Dad and the boyfriend, off my head on Diazepan and the odd glass of wine, but the rest of that week is a bit of a blur...until results day on the 17th and then everything comes back into focus.

I was due for surgery in September, for the fibroid they had found back in May, so I had an MRI booked in for that area on the 15th September. Back into the hospital and this time I was willing Dr. House or a lookalike to appear but instead a quite personable man arrived bearing more resemblance to an egg than Hugh Laurie, he took me through some locked doors and the room with the giant scanner tube thing in. I wasn't scared, probably because I didn't know what to expect, I lay on the bed and was given headphones and told that the music would start, only they forgot to turn the volume up. I closed my eyes and tried to be as still as possible, which frankly is the first time I've done as I've been told in a long time. An MRI is really loud, every time the machine takes a photo it is like being next to a road drill, without any headphones. I kept comparing it to noises while I was lying there, it was as if a train was passing two inches away, or a huge door slammed shut over and over.

When my time was up the egg man came in to the room and released me, he had a delicious looking Irish man with him this time who asked me if I was okay and then told me I had been in there for half an hour. Me, lying that still for thirty minutes seemed incredible, he did say well done but I bet he says that to all the girls.

Two more sleeps and then it's results day, not that I'm thinking about it much or counting anything or worrying at all. Nope.