Thursday 11 December 2014

Not mushroom in here... Part 7




Glass half full or half empty? I'm both and neither, depends on the week, the day, the weather, the treatment.

Reasons to be cheerful:

People: Friends, Romans and cousins. As if I hadn't been through enough... those pesky kids plot and scheme behind my back, sending a surprise fancy dancy state of the art immune enhancing juicy nutritional machine thing. Perfect strangers colluding, liaising and organising to make sure I have enough good stuff in my immune system to cope with 6 treatments of chemotherapy and one month of radiotherapy. There are no words for this, the snivelling photos of me, reduced to tears, trying to open the box are bad enough and the thought alone may set me off again. It didn't stop there either, cards and gifts and even a grocery voucher have arrived in the last couple of weeks making me feel incredibly loved, healthy and pretty special, but more importantly ready to tackle the chemo head on.

Haircut:  I decided a while back while reading leaflets about the fall out - pun totally intended - of chemotherapy that I would have my hair shorn if that was going to be my treatment. As I know all the right people (see above) I have an exceptional hair chopper on speed dial, well I have his wife which is just as good. Unlike Samson this amazing haircut seems to have given me strength and energy and as an added bonus it makes me look very pretty in dresses.

Very good reasons to be both cheerful and happy.

Of course no pleasure without pain, and there has been some of that too. After my last appointment with the wheelie good consultant I was referred for two scans, a bone and a CT scan. 'Nothing at all to worry about' I was told, 'just a precaution' they said, 'we aren't expecting to find anything'. I'm not quite sure how that works, how do you stop yourself worrying that this buggar might be lurking somewhere else in your system? Even the words bone and CT scan sound scary but I decided to ignore it all until the results were due...no point working myself up needlessly.  Instead I concentrated on making lots of 'clean food' to make myself into a virtual superhero,  no amount of cancer killing toxins were going to mess up my immune system, I would make myself invincible.

True to form I messed that up spectacularly, by giving myself food poisoning. Twice.

Yes, I know.

Something else which didn't feel quite right was the egg, this had increased and decreased on a regular basis since being drained, all part of the post op recovery, but now my left breast resembled something Katie Price would have had reduced. When I mentioned this to my nurse she recommended coming in, I was in the hospital anyway for another scan on some other part of my body so I could pop in and let them take a quick look and put my mind at rest. I did as she said and I saw my original consultant, the one who had performed my operation.

That sounds very odd...'performed my operation' did he stand there before he started, taking a bow and raising his scalpels in a flourish? Sorry, this week my imagination really is running away with me and most of the medical staff I have encountered have taken on all sorts of personas.

Anyway, he was back from leave and pleased to check up on my progress. I had been feeling a bit sick with stomach pains but nothing too worrying, I mentioned it whilst being examined. I had thought it could be down to a curry I had eaten the night before as I wasn't used to rich foods anymore. I wasn't terribly concerned but he immediately wrote out a prescription 'something for the pain and something for nausea' he said, which didn't worry me and in fact made me feel as if I was in pretty safe hands. He said he knew I would have plenty of nausea in the coming months and therefore it was a good idea to start taking the anti nausea tablets. We took the prescription down to the hospital pharmacy and patiently waited for my medication.

I'm no expert but five bottles of liquid morphine seems somewhat excessive as a painkiller. Unless for palliative care...maybe he knows something I don't. I went home and wrote everything down and what time I should be taking it and when. I'm nothing if not obedient and despite my faith in the medical profession having been tested somewhat in the last seven months I was still playing nicely with them.

That evening I unwittingly ate some more toxic mushrooms and lentils, I wanted to make sure I had eaten something reasonably healthy with all the meds I was on, shame then that I chose the one dish in the fridge which had already given me mild stomach cramps and should have been binned days before. In my defence I did not realise it was that which had been causing the problems otherwise I wouldn't have touched anymore, honestly. To describe the next nine hours as difficult would be a teeny tiny understatement, with the morphine acting as a stopper for one end and the anti nausea tablets plugging up the other, I was in absolute agony, with no idea why.

I didn't make the connection until the following day, the relief that I had poisoned myself rather than the onset of anything more sinister had me up and both the boyfriend and I practically dancing around the flat. It took about a week for the cramps to subside, I haven't touched the morphine since and I'm off mushrooms for life.

Meanwhile I had my meeting with my oncologist lined up, the results of my scans were due in and hopefully I would have any questions / fears answered about chemotherapy and we could just get on with everything.

No such luck.

I went down to Portsmouth with my Dad, first of all we had the explanation as to why I was being offered chemotherapy...yes offered.

'A dose of chemo Madam?'
'Oooohhh I don't mind if I do'.

Sarcasm may be the lowest form of wit but it's working for me right now.

Apparently my cancer is triple negative, it has no hormone receptors attached to it, this means it doesn't respond to any hormone treatments, a tough little cookie this one, only not quite so sweet. I also found out that this type of cancer normally occurs in women under 40... like I said I do have my glass half full moments.

The rest of the appointment came as a surprise and not in a good way. My ever increasing left breast was examined and she spoke of her fears that it was not liquid and that in fact the cancer may have returned to my breast. I was shocked beyond belief.

"Returned?" I asked, "I didn't know it could return there, it was removed".

Well I was wrong, a rogue cell could have escaped and started it all off again. While we were reeling from this new piece of information there was something else, she was concerned about the mass in my abdomen, 'Was there cancer cells in it? Had it been checked out? Had I had a biopsy on it?' Although I explained it was a fibroid and definitely non-malignant she wasn't convinced and wanted it checked out, properly and as soon as possible. That and the swelling, all needed double checking.

She didn't exactly shove us out of the door but the urgency was clear. It was back home to wait for a call from the local hospital so we could go back in to have everything double checked. We kept looking at the positive in all of this, the oncologist was being very thorough, ruling out any possibility that anything may have been missed, and while that possibility was very frightening it was good to know it was being dealt with. That sounds very brave doesn't it? The truth is both my Dad and I were in shock, we couldn't quite believe this was happening, and for me personally the idea of more surgery was appalling.

We were called into the local hospital where I expected to undergo all sorts of tests, be needled and analaysed. I really should stop with the expectations as they never quite pan out.

Remember those horror films where everyone looks normal and the main character is being pointed at and laughed at as he or she tries to make sense of something?  Everyone is slightly distorted and fairground music is playing in the background? A cross between Rosemary's Baby and A Clockwork Orange. That is what I felt like in the subsequent appointment with the nurses and the Wheelie Consultant.

"Definitely just a fibroid Martina" They smiled kindly.

"You know it's fluid in your breast, we told you that already" The consultant grinned. "And I aspirated you the last time you were here, you were very lucky I did that," He inclined his head as if he had indulged me and expected me to break into spontaneous applause at his goodwill gesture.

"No need for anything else, no biopsy, no scan, nothing, you are absolutely fine."

His tone was breezy, loose and familiar. I was being looked at as if I was the one who needed to be reassured, as if I had stirred this all up. I had all the information, what a silly woman I was going back in when I knew what was wrong with me. I looked from one to the other and could not make sense of anything they were saying, it was hard to get a word in edgeways, but eventually I did.

"Why then have we been told by the oncologist to come back here to have all of this checked again?" I asked, utterly bewildered by the Hall of Mirrors scene unfolding.

"Why would she tell us that there were all these risks and chances of things being even worse than we had thought if everything is actually fine?" I asked this because I was genuinely confused.

The consultant wheeled his chair forward, nice and close and smiled and finally explained that the scan had been checked by an inexperienced radiologist who had not checked my previous notes at all and had sent the scan results to the oncologist with what he perceived were problems he noted on the scan. A bit like an administrative error only much worse. I wasn't scared anymore, I wasn't even relieved, I was just really angry, but faced with so many 'concerned' and smiling faces it was hard to keep a grip on reality.

"And the fibroid, that is definitely fine too? No need to do anything else?" I asked, although I could feel any vestige of confidence slipping away. I already felt faintly ridiculous for being there.

As if to hammer home his response, the consultant immediately started dictating a letter to the fibroid consultant asking her to confirm what had already been stated. He wheeled back and forth while completing his dictation loudly, enunciating every word very carefully and looking at me pointedly during this so I was fully aware that everything was being done that should be.

I very much felt like I was caught in the middle of lots of points of being made. It wasn't terribly comfortable.

At the end of that particular day, although having been subjected to a rollercoaster of emotions we did feel that at least the oncologist was very thorough, it was good to know that someone was very much looking out for us. The following week I called to find out if the results of the fibroid had been confirmed and when my chemotherapy would be starting. Her secretary knew nothing at all, had been left with no instructions but did let me know that my oncologist is apparently away on leave for ten days.

Even Pollyanna would have had a hard time being positive through all of this.












Thursday 27 November 2014

Eggsactly Part 6




After the operation I was quite disappointed to find out that I was not the colour of Papa Smurf, in fact I didn't really turn blue...not entirely, I was more of a pale china grey, very fashionable in the Farrow & Ball selection of paints, more than a hint of griege with a barely affordable price attached. My left breast wasn't quite so fussy and looked entirely like a fully fledged member of the smurf party. Aside from hosting a rainbow assortment of colours across the left hand side of my body I felt pretty much okay to begin with. Then again that is the beauty of a general anaeasthetic, you feel just fine until you try to do anything...like walk.

Gradually the extreme painkillers wore off and although I looked a bit of a mess I wasn't in major pain except for one thing, I felt as if my left upper arm had been badly burned. This severe discomfort was exacerbated if it rubbed against any material, making wearing clothes difficult and wearing a bra virtually impossible. I couldn't understand how a part of my arm they hadn't actually touched felt so weirdly sore, like the worst sunburn in a really delicate area. I was given an emergency appointment to see a GP but I really wasn't holding out much hope that they would enlighten me, a hangover reaction from previous visits. How wrong could I have been?

I saw the senior partner in the surgery, I have never seen him before nor complained about him or even written him a letter but I'm sure he knows all about my complicated history, general attitude and inability to stay quiet when I'm not happy, which has been fairly often in the last six months. He was very very quiet, he diagnosed the problem quickly and efficiently and gave me a prescription to help with it. He didn't engage with me or enter into any discussion apart from what I was there for which made a pleasant change.
My 'sunburned arm' was a nerve problem he explained, apparently during the operation they had dug around in my lymph glands and disturbed the nerves and that was why my arm was all over the place, it didn't know what to feel, so it was all at odds with what the brain was telling it do. So it seems like my arm and I have more than just attachment issues in common... I was prescribed a whole bunch of epileptic tablets which would help calm down the burning and teach my brain which nerves were which. Fascinating stuff, I could not wait for it to actually start working.

The calming effect started quickly, I spent most of the first few days floating around in a cloudy dream, talking to people was especially funny, to me. I kept pausing mid conversation which looked like what I was taking great care over my response, in actual fact I kept forgetting where I was.

In the meantime I had another physical issue, apart from the obvious. I was growing an ever inflating lump in my armpit about the size of a boiled egg. Apparently, in the event of any damage your body sends liquid to the afflicted site to cushion it, I am not going to bang on about how amazing bodies are, frankly I feel a bit let down by mine although I will begrudgingly give it some credit for this. The egg continued to grow in size until it was so uncomfortable and I was sufficiently alarmed enough to mention it to the nurse who assured me that it was all perfectly normal, however if the consultant felt the need to 'aspirate' or drain it then he would when he next saw me, on the day of the results.

(I will jump forward now to say that yes I did indeed have the 'egg' drained and it was the most amazing feeling ever, they aren't keen on doing this because of the risk of infection, and the chances are it will return, but in that moment it felt truly marvellous. I had 80ml of liquid drained, the quantity of which I am absurdly proud and it has been the one and only time I was happy to see a needle.) 


My Dad came with me to the appointment, everyone says their own Dad is the best, probably true for them. I have mine and he is definitely the best for me, I'm very lucky. He's a total gentleman with an unrivalled sense of fairness, a wicked sense of humour and an air of calm. Just what you need at a time like this, but he's not available to anyone else because I am selfishly claiming all of his time and probably most of his head space.

Before the appointment we had lunch out and talked about my options, neither of us being particularly keen on the concept of an elephant in the room we bet each other a tenner on the possible treatment we thought I might be facing. Back at the hospital and it was busy, and seemed darker although that could just be me trying to add literal atmosphere. Fifty minutes later and with anxiety levels going through the roof we were called in and sat facing a consultant who definitely hadn't operated on me. This one was very different, old boys school, he was certainly one of the surgeons, just not mine, mine was apparently on leave, which was fine until I was told that they hadn't wanted me to wait any longer for my results. This created another spike in my anxiety levels as the consultant rolled forward with 'the news'.

Yes I did write that correctly he rolled forward, he had a disconcerting habit of moving around on his wheeled office chair, it felt slightly incongruous in such a serious setting. Well that and his beaming smile all made it feel a little surreal.

"The good news is we have removed the tumour and it hasn't spread into your lymph glands" he said loudly, while my heart sank, I've mentioned already that I'm picking up on the fact that so far, good news tends to be a precursor for bad.

"We have removed it all from the breast" He grinned, but I wasn't fooled.

"The bad news is..." Told you. "The bad news is that it has now moved up to a stage three cancer."

Even he had the grace to look slightly less animated at this information. What followed were explanations about what might have been if it had been a different type of tumour, what options weren't open to me because of that, which medicines wouldn't work etc. I cut him short as the suspense was no longer killing me.

"It's chemotherapy then?" I said, as matter of fact as I could, it wasn't really a question. They nodded and I looked at my Dad.

"You owe me a tenner." I said, willing him not to look upset.

It's hard to maintain a sense of humour in this situation but I did my level best. I asked about hair loss and when that would happen and the consultant explained about the gel cap which meant that I wouldn't necessarily lose it.

"There are options" he explained "to be able to keep your hair from falling out, but the downside is that a gel cap can be very cold so not great if you suffer from a cold head in the winter"

Thinking that a cold head would be the least of my worries I leaned forward this time, and asked very seriously,

"So, I would have a hairy head but a bald face?"

He wasn't really sure what the correct answer was, don't think he really knew how to take me, I've a feeling he was normally in charge of the jokes. I had been pretty sure all along that it would be chemotherapy, that thing which shall not be spoken, a bit like Voldermort, or Beetlejuice don't name it, or avoid saying it three times in case it appears. I guess that's why I bet my Dad £10  I sort of knew, not fair really, but then I'm finding out so much about this is not fair.

Such as the fact that this treatment will wipe out once and for all any chance I may have had at having a baby. Deluded I may have been at my age thinking that I stood a chance but as Journey once sang I really never did stop believin' until the moment I was told categorically at that appointment that chemotherapy doesn't just wipe out cancer cells. I cried then, same as I'm crying now, trying to find a way of writing this which won't sound too brutal or self delusional.

Me having a baby simply wasn't meant to be. Anyway, I would have probably left it in Sainsburys.










Monday 10 November 2014

One Flew Pretty Close...Part 5




I have never really been sick. No broken bones, never been seriously ill and I can count lifetime visits to casualty on one hand. The worst accident I have had was falling through the garage roof when I was about 6 years old, everyone thought I had broken my back, I was just sitting on the floor waiting to be rescued with not a scratch on me. The lack of drama was almost disappointing.

I didn't think I was particularly lucky, I was just never ill and as a result of being stupidly healthy I had very little time or patience with those who were ill, especially vegetarians. I was especially impatient with them... I just couldn't understand how those who followed a super nutritious diet of almost exclusively vegetables had continuously pallid unhealthy complexions and suffered cold / fever / infections almost constantly. My muttered advice to 'eat a bacon sandwich' was not welcomed, and it was clear that nursing would never be a career option.

Hoisted by my own petard? Maybe. Certainly the irony of what is happening now is not lost on me.

This week I'm thinking about renting a room at the hospital I'm in and out of there more often than I'm at home and I am familiar with the different parts; I know what a nightmare the car park can be in the morning, as drivers of all ages ignore or feign ignorance of any and all road signs to brazenly inch their way into the few spaces which offer a short walking distance to the hospital. I know where the best coffee is, naturally, and when not to bring something to read because they already have good magazines. For someone who has barely been inside a hospital most of her life I could offer walking tours in this one.

One day to go before the operation and one last appointment, this time with  nuclear medicine which wasn't as dangerous as it sounds, more mapping out to be done for the operation so they could see exactly where the lymph nodes are positioned, this was the bit where they injected me with radioactive stuff and tried to distract me from the pain as it whooshed into my veins, by screening a soothing video of Swiss mountains and waterfalls. I really think they need to change their idea of what constitutes distraction, old Top of The Pops footage would have been better and then at Christmas time how about excerpts from Elf to cheer people up?  I have a feeling they don't have a suggestion box...

I'm rubbish at packing, I never know what to take. For this hospital visit I was told to bring a dressing gown and slippers, I bought a slip of a nightie and chunky socks. Told you I was bad. We were only allowed one person in with us and I brought two, this last thing went down very badly with the person checking me in. She was not happy, in fact she summed up the expression 'po faced' perfectly. Next time I need to remember not to bring in one gorgeous Irish friend and one good looking concerned Italian boyfriend, Ms Po Faced was not impressed by my colourful guests and skillfully managed to tell all of us off in various different ways without ever bothering to look in our direction. That is quite an achievement and scary to be at the non receiving end of it. If you see what I mean.

The thing with being in hospital makes someone like me turn into a major people pleaser,  they are amazing these nurses and doctors, in fact the whole NHS is wonderful, so you want to be on your best behaviour for them, or at least I do, smiling, cracking jokes, anything to show them that I am indeed the model patient. Perhaps in the back of my mind I hoped I'd be pushed to the front of the queue and the surgeon, all fresh from a decent nights sleep would be on fine form and all ready for his star patient to be the first up on the trolley. Happy and willing and ready to cut me up beautifully as he knew I would be nervous and hungry from all that nil by mouth beeswax.  First up? In my dreams.

When the sparkly eyed anaesthetist came in to tell me the news that I would be the last of the day I figured that Ms. Po Faced had far reaching powers or friends in high places, I was looking at 19 hours total with no food, no more liquids and still about six hours till the operation, she was good I'll give her that, I sent my guests home, unwilling to cause any other problems. In the meantime I answered all the questions on the anaesthetist's form as he lounged on the bed I'd been told to get off of.

"You aren't allowed on there" I said in a low voice.

"Oh" he replied smiling at me "Really?"

"I've already been told off" I said.

"I'm sorry to hear that, I'm going to risk it" he said, carrying on ticking boxes on his form.

You're a braver man than me I thought, thankful the curtains on my little cubicle were closed and she was unable to see this flagrant breaching of the rules.

I had several visitors in the run up to the operation, not chosen by me but entertaining nonetheless. My wonderful cancer nurse came to see me, I can't believe I am writing that I have my own cancer nurse, but I do and fortunately she has the patience of a saint, she understands my need for straight talking and isn't offended by my sometimes slightly gallows style sense of humour. She also has great skin, my Irish friend pointed that out, she does indeed, it sort of glows. In fact she glows, she's calm and articulate and every time I see her I want to hug her, there is something about her which makes me feel everything will be alright. I have her number if it isn't.

Hospitals are strange places, reassuring and scary at the same time. A bit like the people who work there... Waiting to be called I felt as if I was hiding, trapped in a cubicle on an uncomfortable chair wishing the time to pass by while at the same time hoping it would stand still. I did go on a brief sojourn to have a blood test, oh yes even on this big day they weren't letting me off at least one extra puncture wound. It helped pass the time and on my way there a fleeting thought that I could make a break for it did cross my mind but I wasn't sure where to go, and then what? Back again to face the wrath of Po Faced? No thanks. I was accompanied for this trip out by a he/she person I say this because quite honestly it could have happily been either.  Sitting waiting for the test the very ambiguous being next to me asked (in a squeaky voice) what I did for a living, I felt as if I was back in a hair salon, 'Going anywhere nice for yer holidays?' Fortunately I was saved from having to respond by the call of the needle.

Next up was my stylist...kidding, just kidding, it was a hospital nurse? Orderly? I'm really not sure but the comedy circuit is missing a trick with this lot, I have a feeling that under their uniforms they are wearing t.shirts and badges with various sayings about needing to be mad to work here or 'I'm Crazeee me'. Indeed they are. I was given paper gowns to wear, two on account of me not having brought a dressing gown and a bottle green pair of surgical  socks with the toes out, I wasn't looking my best but the main aim was not to pull, I kept telling myself.

Interestingly patients are now walked into theatre instead of being knocked out on a bed and then rolled in, apparently, psychologically it helps patients recover quicker, although I am not yet convinced, I'm still hoping I will be sent a feedback form...

Friendly check in upon arrival = Nil point
Walking into theatre = Nil point
Theatre Fashion = Nil Point

Being walked into a pristine large operating room, looking like Steptoe's aunt in my odd looking get up and faced with several groups of very professional looking people who all pause, smile at you benignly (how ironic) say hello and then go back to their tasks, was frankly terrifying in a way that only Jack Nicholson would understand when faced with Nurse Ratched and her team. Helped up onto the bed, worried that my bits would fall out and trying to arrange myself in a dignified manner was tough, soothing talk from the various nurses as they 'arranged' me on the bed about impending weddings was difficult to concentrate on. There was no gentle drift off as the anaesthetic took hold, one moment I was panicking as the needle in my back of my hand drip fed in the medication far too slowly for everyone's liking, the next I was out cold.

Coming round from the operation, any operation in fact, I am always slightly bewildered as to why they choose that particular moment to tell you what has been done to you. It's hard to take instruction or listen to information when you are a dribbling paranoid mess. I also had the dubious honour of extra morphine being syringed directly into my mouth as soon as I woke up. Not as pleasurable as you may think.

"Have your cup of tea and eat some toast and go to the toilet, then we can call your lift" said the definitely male nurse with bobbed hair after administering the drug.

Yeah, right.

I have a theory about this. I think they have us on camera somewhere, scoring points over the 'drunkest' looking patient, seeing how they walk and where they walk, how long in the toilet, how long to get dressed. Remember that game you'd play as kids when you would turn someone around until they were dizzy then give them a push and start them walking? Hysterical until it was your turn. Well I think that is what this lot are up to, and to be fair I'd do the same given half the chance.

The consultant came round, full of good cheer, and great news. It looked like the cancer hadn't spread through my lymph nodes, so that is good, it was all removed, more good news, but they did have to make two incisions, not so good. I am learning though, they always follow the good news with a bit of bad.

Like the opposite of the icing on the cake.






Friday 31 October 2014

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.











Wednesday 22 October 2014

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.....










Thursday 9 October 2014

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.





















Sunday 5 October 2014

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.