Tuesday, 18 August 2015

The End?

Am I tempting fate with the title 'The End'? I wasn't sure if it was right or even appropriate to make that call but it is the end now and any fears or doubts I have about the future aren't dependent on the words I use.

My treatment is all over and I have disappearing physical reminders of what I've been through. My thumb nails, which were fashionably dark blue / black are now a tobacco yellow across the tips as my body literally grows out of the chemo. My big toe nails which I almost lost but determinedly stuck back down with nail varnish are now also growing back properly.

Things are about as normal as they ever going to be. I have hair now rather than fluff, it's not quite how it was and I definitely can't tie it in an elastic band but it is very soft and smooth like an animal pelt and I am fascinated by the colour, a bit like a brillo pad without the pink. I'm leaving it as it is, it's enough of a surprise to see it on my head each morning without messing about with hair dyes. Using shampoo and conditioner still feels novel and seeing those two bottles back in the bathroom makes me smile.

Radiotherapy was nothing to write home about so for ages I didn't. No needles, no injections, no sickness or pain, well, no pain to start with. The only thing this treatment had in common with chemo was the level of care I received, wonderful staff who did everything they could to make me feel comfortable. I practically danced in and out of hospital every day, every day for five weeks. It felt so good not to be carrying on down the corridor to the chemo ward and stopping instead in the huge waiting hall, waving at the lovely receptionists who smiled and waved back, their acknowledgement at our arrival meaning we didn't have to queue and could sit straight down. Radiotherapy felt like I had graduated, at least it did in the beginning. It did take it's toll like all treatments, five weeks up and down the A3 every single days was tiring, and eventually the radiation did start to burn. However, like chemo it's only fair that I demystify this treatment as well.

The objective of radiotherapy is to zap you with rays which deter anything bad (cancer) from returning to base camp. You walk through a series of corridors which have reinforced steel walls to keep the rays contained - powerful and dangerous stuff - to then arrive in the room with this huge machine which is waiting for you, and a team of two radiographers. Then you have to lie half naked on a metal bed as still as you can while everyone leaves the room to avoid being.....well contaminated I guess. Reassuring eh? I soon learnt to wear a vest top with no bra every visit, this meant I could walk from the corner of the room to the table in the centre, clothed and with my dignity briefly intact. Then I needed to lie down on the bed where I would shimmy the vest down to waist level exposing my top half. If I was in the mood and depending on who was there I would sing the theme tune to The Stripper while releasing my breasticles, it helped release the tension too, a bit of humour goes a long way.

The machine was a huge half polo shaped metal head on a mechanical arm which rotated above and around my left side as I was radiated. It usually took several minutes and I spent the time staring at the picture projected onto the ceiling which was there to relax or distract,  praying the itch on my nose or the cramp in my raised left arm would disappear.

On one occasion I was left for a worryingly long time, and nothing happened, the machine moved slightly and then stopped. Eventually the Aussie Radiologist came in, adjusted the controls and told me that sometimes the machine sticks and they had had a few problems with it. Right... I must have looked a bit shocked, and she immediately said:  'Oh no worries, it's never actually fallen on anyone' then she paused briefly, looked at me and said 'Only the once, a coupla' years back but we managed to lift it off, so no harm done'. Then off she went while a tonnage of metal moved in and out and over me zapping me with it's usefully lethal rays. The Aussie lass must have realised that maybe she hadn't chosen her moment very well because when she came back in to release me a few minutes later she was very apologetic, 'I didn't mean to scare you, I'm so so sorry' she said, 'Not a problem' I said, smiling at her 'But your timing was ever so slightly off'.

Like I said, I liked them all in that place, top people.

So it would seem this is it, the good and the bad, the rough and the smooth, almost one year since my diagnosis and I'm done. Having been a patient for the best part of nearly ten months it seems the one thing having cancer has done is make me more patient. When talking to some people I have heard comments such as 'You're over it now though aren't you? It's all done isn't it?' I smile happily and put to the back of my mind the appointments I have ahead of me and will have over the next ten years. When I'm told how lucky I am that a) It was breast cancer I had or b) I should be grateful to cancer because it made me slow down and re-evaluate my life or c) That I didn't die...yes someone actually said that, I nod in agreement because I now understand that you cannot change what people say but you can change how you react.

In reality then they are the ones who should be grateful to cancer otherwise my reaction could have been considerably more violent.

There is a really bright spot in all of this, following on from a published article in the Huffington Post http://www.huffingtonpost.co.uk/martina-gruppo/cancer-patient_b_7948824.html I have also been asked to write an article for the gorgeous glossy magazine http://www.sussexstyle.co.uk/ for their breast cancer issue in October and they have shown huge faith in me by asking me to join them as a potential monthly columnist as their magazine grows from a free publication to a paid for one available from September.

Something other than cancer to write about? How refreshing... how very dream come true.

Thursday, 28 May 2015

You're An Embarrassment...

Today was a long time coming and it felt amazing, fifty nine days since my final chemotherapy, five days since my last treatment of radiotherapy and five months since I last felt comfortable out in public.

Today we spent the day in Camden Town in London and I felt like a normal human being, or as close as I could ever be considered normal. I want to say it was the best feeling in the world but it wasn't just about happiness it was better than that, it was like being allowed back in.

Going through the last eight months has been pretty tough, but nothing could have prepared me for the reaction of the general public towards me and my lack of hair, actually let's not dress this up, I was for all intents and purposes bald. It's not a look many of us go into the hairdressers and request, but it was one I was temporarily stuck with. I'm not saying I was expecting an open armed welcome when I went into town or to the supermarket but I wasn't prepared for the blatant looks and stares I received, some just curious others were obviously horrified that I had been let out.

How very dare I? Out and about making people feel uncomfortable, I should be hidden away or if I needed to be out then at least have had the decency to cover myself up. Too warm for a beanie? Then why wasn't I wearing a scarf or a wig? In effect a head covering gives you a label, and more to the point it saves people having to look directly at the head and face of a bald woman which is, apparently, intrinsically wrong and not something they should have to deal with. Scarves and wigs hide nothing when they have nothing to hide (if you see what I mean)  and are very uncomfortable, but who cares about that? Their purpose is to make it easier for others, make it more comfortable for them to instantly identify you and what is wrong with you.  Honestly, I could have saved myself a lot of grief if I had just put other people and their feelings first and shoved an itchy scratchy wig on my head.

You think I'm exaggerating? Sadly not.

To The Boyfriend and to my friends and family every growing hair was a milestone, they were all supportive and encouraging and my self confidence grew with my hair. I was topical too, at Easter I looked like an Easter chick with soft down on my head, and when the sun came out I grew a line of freckles exactly above my eyebrow line which looked almost as good as the real thing and lent me an air of permanent surprise. I felt as if I was on the other side of a nightmare and I couldn't wait to start living again. Unfortunately I hadn't factored in Joe Public and their abject horror of anyone who didn't fit in. Me, I didn't fit in.

Chemotherapy may have messed me up physically and I was definitely on the road to recovery but mentally I was in for a shocking time.

It's a difficult one to describe, just how awful it is being looked at so much, different people had different ways of doing it. Some, when caught staring, pretended to be very interested in the area above my head, making me feel stupid as well as freakish. Some openly gawped not trying to hide anything, after all I was bald and out so why not stare?  Rubber necking was another, once you passed them they would crane their necks for another look. I've had them all and I can confirm that for the most part it is very distressing. Some days you can handle it better than others, but like bad hair days I had bad bald days... Gradually my self confidence started to erode and I could not bear the idea of going out. If you are finding all of this hard to believe, if you think I was being paranoid and over-sensitive I promise you I was not, even The Boyfriend, the most placid easy-going individual there is had to be held back on more than a couple of occasions.

Shopping became an exercise in speed, I saved a fortune by using just a basket instead of a trolley and was able to pick up only what I needed and nothing more, all the while not looking at people who were pretending not to look at me. Unfortunately even I needed to walk from the car into the supermarket and I remember watching as a bloke in a 4x4 nearly crashed into the back of someone else as he craned his neck to stare at me in disbelief... I would have liked to see him explain that one to his insurance company.
Another car park incident in a multi storey where I was in the car sorting out change and I looked up to see a man in his thirties (certainly old enough to know better) staring at me and then looking away, he waited for his girlfriend to come back and when she did, he told her about me, sitting in the car. The problem was, because it was quite dark the light bounced off the windscreens so she couldn't see me, couldn't find the weird thing she had been told to have a look at, so instead she looked around in all directions asking 'Where? Where?'

I may as well have been sitting in a cage.

When I finished chemotherapy one of the first things I did was to book a flight to Ireland, I wanted to see the wonderful Oirish friend and her family for the weekend. I was itching to go somewhere as I had been in for eight long months and having been buoyed up with support from my friends and family I felt brave (stupid) enough to travel on my own. I couldn't wait.

I thought I looked okay, I was wearing grey as opposed to looking grey, I felt confident and I was happy. That bravery melted away at the airport, people soon let me know in less than subtle ways of looking and not looking that I should not be out without some sort of head covering. It was awful, in the end I sat down in a seat so I was less obvious but if anyone came past me I was pointedly ignored, as if I was invisible, it was...I don't know, as if I had something you could catch. The air around my head became a focal point...like that makes a difference, I can still see you looking, especially if you are staring at me behind sunglasses...wearing sunglasses indoors and you think I look odd? Anyway, I digress, my flight was called and I walked down the main staircase next to the escalator, a man was walking slightly ahead of me, three quarters of the way down I realised he was being called by two people on the escalator, they were yelling out 'Dad Dad' and his name. It was only at the bottom that I realised they were calling out to him to turn around and look at me, yes me, the bald woman walking behind him. It was my turn to be horrified, I walked off with my (bald) head held high, but I was shaking and there were tears stinging my eyes.

Someone was watching over me in that moment I am absolutely convinced of it, because shortly afterwards I was sent a guardian angel to look after me.

Before I boarded I sat with everyone else and kept my head down, I didn't want to be noticed by anyone anymore. Sat in front of me there was a woman busy chatting on her phone. Everyone else stood up and walked towards the boarding queue, I waited and this lovely woman unafraid of anything looked up suddenly and asked me which seats they had called. She was smiling and chatty and just being normal towards me, it was the whoosh of normality I desperately needed.  It turned out her seat was next to mine, unbelievable. She had no idea but I clung to her from that moment, metaphorically speaking, as if it was my first day at school. We didn't stop chatting and exchanging life histories for the entire flight, and we are still very much in contact, I want her to know how much she lifted me up that day and carried me all the way.

Ireland, I will remember it for the great laugh I had, the wonderful Guinness and my lovely Oirish friend whom I adore, I will also remember vividly wanting to disappear into a hole in the ground when I was pointed at in the street by a group of women when we were out for a walk. Pointed at.
My self confidence well and truly depleted I returned home, determined not to go anywhere unaccompanied until I looked like a human being again.

I spent a long time reading up on the best foods to eat, fortunately it was stuff I ate anyway, avocadoes, pineapples, brazil nuts and I put applications of daily coconut oil and argan oil on my head whispering 'grow grow' at it every day... It worked for Prince Charles and his plants but I'm not convinced that you can speed up the growing process anymore than you can slow down the ageing one. Nature has it's own pace and my hair was no different, gradually it was coming, and I wasn't quite so scared of looking in the mirror.

Staying in certainly  made it easier but I still saw people, my postman popped by with something for me to sign one morning and said,
 "Oooohhh check you out, it's growing isn't it?" I smiled back nodding happily.
"You look just like the blokes down at the sorting office"
"Really?" I said through gritted teeth, "Thanks ever so much".
"No honestly, you really do" he said looking slightly bemused that I didn't seem that thrilled, and I smiled and tried to find a grateful expression.

Someone else I see around the place where I live saw me and stopped for a chat,
"It really suits you" she said,  "If I had cheekbones like that I'd chop my hair all off" so far so good.....when I went on to say that it was a shame not everyone thought the same way she responded with "You should get yourself down to Gay Pride love, you'd fit right in there, you'd be ever so popular". And off she went shrieking with laughter.

People...dontcha' just love em'?

Thursday, 14 May 2015

Ours is not to reason why....Part 15

You can do it / Only one more to go / You've done so well, keep going / It will soon be over.

All true well meaning comments from friends and family as I approached the final chemotherapy at the end of March. End of March...even writing that date from this distance doesn't stop it feeling like a nightmare time in soft focus...not soft enough for my liking. I would like those sessions and the aftermath to be obliterated from my mind but I have a feeling it will be some time before that happens.

Everything you imagine about chemotherapy is true, it really is that bad, it does feel worse with each treatment and I am not surprised there is very little detail out there about what it is really like. If there was I'm not sure many would turn up. I am not trying to scare anyone by writing about such a taboo subject but I cannot dress this up, aside from the outstanding care I received there is nothing pretty about it, but that is my personal experience. there may be others out there who had a ball, I just haven't met them yet.

 After my fifth chemotherapy I was barely able to move from the bed to the sofa. I couldn't sleep at night and the chemo was really going to work on drying out my entire body, inside and out. Hand cream was used liberally all the time, less of a beauty ritual and more to stop my hands crisping up. Going to the toilet wasn't just unpleasant, it was like something from a horror film, I would wake up early, already panicking about needing to go. The trouble is your body doesn't stop working, it carries on with its daily functions regardless of the screaming pain it may cause. One particularly appalling morning I remember The poor Boyfriend... rushing around every local shop trying to find something, anything that might make things a bit easier, and coming back clutching a bottle of syrup of figs assuring me the disgusting mixture would work. I could only imagine him standing in the local pharmacy desperately trying to describe what was happening at home and looking for a cure.

I guess that's the magic and mystery gone from our relationship.

Why was there six treatments? This was a question we were starting to ask each other over and over. I was really scared of the last one, The Boyfriend could not bear the idea of me going through it all again, the fact it's the final treatment doesn't really make any difference, all you keep thinking about is the blow it will deal physically from the moment the stuff is injected.  It hasn't helped either that more than one consultant has given me the option of bowing out. That doesn't just sow a seed, that plants an allotment of doubt in your head, it's the lifeline you have been waiting for and you want to grab it with both hands and throw caution to the wind. The idea of not having another treatment, not doing that awful thing again and not dealing with the days and nights of sickness which follow it is so so tempting. Until you remember your friends and family.

I chose very carefully who I spoke to about this, whose advice I sought. Knowing those too close would think I was an idiot to stop at five and not continue with one more, certifiable even, but they weren't there in the weeks following chemo, and it's much easier to know what to do from a safe distance. Then I heard from a very good friend who knew someone who had been through this twice (I am wincing as I write that) and this particularly brave soul had very sagely said; 'You do the last treatments for those closest to you, because they need to see you complete it'. How true that is, but I still hadn't made up my mind.

In the meantime I was still questioning how they had arrived at six sessions, what is it dependent on? Who decides and how? I had an appointment to see the main man Radiotherapist as my Radiotherapy treatment was looming once the chemo was done and dusted. Apparently they needed to draw on my breasticles so they could zap me accurately. Forty six and a half years old and I have managed without a tattoo and now I have what looks like a makeshift prison one, a blue pen dot marks the spot, just in case I forget. Yeah right.

In that relatively short appointment I found out a whole heap of stuff I didn't expect to.

Firstly, apparently chemotherapy for breast cancer was introduced in the early 1970's and the poor women who were put on it at the time had to do twelve,.. yes twelve sessions. Unable to cope terribly well (no sh**) the medical profession cut the dose in half and women were then given six instead of twelve, and guess what the results showed? That there was no difference, none at all. Unimaginable.

So I asked the obvious, to me, question, well why stop at six? Why not cut it to four? See what the results throw up then. They like questions they can answer these consultants, what they don't like is a smartarse. Although I really wasn't trying to be one, it was a genuine enquiry.  Apparently you would need to test thousands of women to see if that made any difference and they simply don't have the resources or the time. In fact, he went on to tell me, many of his patients had stopped after treatment four or five.

Crikey. I had heard nothing so far that made me feel even slightly convinced that I should be continuing with anymore treatments, so I asked about my prognosis.

"Haven't you spoken to your oncologist about that?" He asked.
"Which one?" I replied, unable to mask the sarcasm. Okay, so now I was being a smartarse.

And down the shutters came, they do like to close ranks these consultants. He did give me a sort of prognosis, and then another bit of information I wasn't expecting.

"Well" He said, shuffling through my paperwork  "On the one hand your tumour was only 8mm, which is very small, but on the other hand it was triple negative so no receptors, they took it all out which was good but it was only 1mm away from your chest wall...not so good" He said.

He continued about how the operation was a success and blah blah blahed on about how the chemo is like a 'mopping up' solution and how the radiotherapy would be the ultimate zap it all away method, but I had already stopped listening.

'but it was only 1mm away from your chest wall'

This was the first time I had heard it was that close to my chest, I had been dealing with it as part of breast cancer, you know, the one that everyone tells you that if you are going to have any cancer then this should be it. No one had mentioned anything about my chest wall, and they have had plenty of opportunity, and there have been any number of consultants who could have mentioned it. At any time. But they didn't. Maybe it just wasn't that important...maybe they forgot.

Funnily enough after this fairly startling piece of news I decided to go ahead with no.6. There was no stopping me now, I wanted it, all of it. I also wanted whatever radiotherapy they could throw at me, clinical trial? Yes please. Extra booster week? Where do I sign? I went to see the original oncologist too, I needed to hear from her directly what my prognosis was. Brilliant apparently, no problem at all, she was very positive. I mentioned the chest wall thing but she reassured me they could not have dug any deeper, there was only muscle. Great, I think.

Somehow the chemotherapy managed to have the last laugh. The day before the treatment my blood levels were showing as low, possibly anaemic meaning a real possibility of delaying everything, unacceptable as far as I was concerned, I hadn't reached this far only to have it put off for a week. I actually prayed to have it, prayed I would be well enough, the irony (sorry) of that is not lost on me. My prayers were answered and my levels were thought to be strong enough to take one last hit.

I don't want to describe any of it, suffice to say it was grim. I want only to remember the two gorgeous Portuguese nurses, my favourites, who hugged me as I left, all of us in tears because it's strange to miss people whom you hope you will never have to see again.

Thursday, 30 April 2015

Carry On Nursing Part 14

I love nurses, absolutely love them.

They aren't the backbone of the NHS they are the NHS as far as I'm concerned. Most of them anyway because life always allows for exceptions but this post is mainly about the good ones, the funny ones, the ones with a glint in their eyes, best sense of humour and no nonsense attitude, the ones who put up with so much and keep smiling, keep caring, keep nursing. This is especially for the ones who for me personally, have made this whole ordeal more than bearable.

Until seven months ago I had very little contact with nurses, my dealings with the medical profession were a few consultants and my own doctor. Nurses didn't really feature for me, I mean I knew they did a good job, I read about the fact they were underpaid, I knew they wore uniforms and had a sexy reputation (unfounded as far as I know) in lots of 1970's films. I also knew that it was a career / vocation I could never contemplate because I am just not made that way, but thank heavens they are.

Fast forward to today and frankly if I don't have some sort of daily contact with one I feel almost bereft. I have met a variety pack, young and old, those starting out and those with almost too much experience. Yes there are nurses who wear with pride the been there seen it all done it all t.shirts, I had the dubious pleasure of meeting a Frank Carson style male nurse who proudly told me he should have retired a year ago but would miss it too much, set firmly in his ways he wasn't going to follow 'new fangled' ideas and as long as he made his patients laugh he was staying where he was. My heart went out to his bosses...

Despite some really awful times when I just couldn't cope they have been insightful, practical and humorous but above all else they cared, really cared and that shines brighter than any PHD in medical science, especially when all you want and need is reassurance and a twinkly eye.

I had heard about the MacMillan nurses, I knew how good they were but I hadn't realise that from your first appointment for a biopsy / scan you are 'given' a dedicated nurse. I struck lucky, my cancer nurse and I hit it off from the word go, I must admit I found it quite uncomfortable to say the words 'my cancer nurse' but in effect that was what she was, and she has been there for me the whole time. From the first appointment, she understood I didn't want or need flannel, I just wanted to be told the truth. She also realised I needed a healthy dose of black humour or I would not be able to cope with what was happening and she provided buckets of it. From the first consultation, she held my hand (metaphorically speaking as I don't go for that kind of gushy stuff although I make exceptions for a hug) and when she saw how lost I was by consultant speak she would throw me a wink or give me a knowing smile and then follow it up with a phone call or an email to make sure I knew what was going on.

She was there at the operation for the lumpectomy, making me laugh before I went in and reassuring me, always always reassuring me. She was like a guardian angel, if angels have lovely skin which I'm sure they do. She certainly does. When I was admitted for Neutropenic shock at Christmas she paid me an unexpected visit. Popping her head round the door she looked at me lying in the hospital bed and very sternly said "Just what do you think you are doing in here?" her eyes betraying her humour. I was so touched that she had come to see me and very much in need of some sort of maternal hug that in that particular moment when all my hair was falling out and I was feeling so let down by my body and ill I just cried. She sat with me while I snivelled out an apology for crying and being pathetic and I let her hold my hand while she talked practicalities and made me laugh again. Her timing once again was impeccable, showing up exactly when I needed her, doing exactly what I needed to make me feel better without me even realising it. Throughout my chemotherapy she would either call or email me depending on when she believed I was feeling better. She always always seemed to know when I would be too ill to talk or be just about able to respond to an email. A priceless skill as far as I'm concerned.

They don't tell you about that when discussing the NHS and it's failings.

I have different sets of nurses I come into regular contact with, there were the nurses I saw on a weekly basis to change the dressing and flush out my detested Picc line. When I was too sick to move they came to see me, no questions asked just part of their job to include me on their already busy rounds. Most of the time I managed to visit their clinic and one appointment I particularly remember there was a lovely Spanish nurse on duty. I was having a bad day, a really bad day, I didn't realise at the time that I was anaemic, I felt washed out, tired and depressed and annoyed with myself for not coping better. I was desperately waiting for the 'good days' to start after chemotherapy. Within thirty seconds of walking in to her clinic and being asked how I was I started crying, it certainly took me by surprise but it didn't faze Miss Spain who sat me down, didn't take my tears personally and gently told me off for not being kinder to myself. Spending time talking through stuff and making me laugh she did so much more than just change a dressing that day and it's a small measure of how wonderful she was that I hugged her as I left.

They had a lot to put up with at that tiny little seaside clinic as they received lots of flack from those at the big hospital...not face to face obviously, office politics are alive and thriving even in the nursing profession. No, this was done in a snide manner huffing and puffing to patients in for blood tests that the picc lines weren't correct according to the photographs in the manuals. Well I for one am eternally grateful to those lovely nurses who did it slightly differently because when all you want to do is tear out the tap attached to your arm they did their best to position it comfortably, and Moon Face and his associates can take a running jump with their 'how to' manuals.

Talking of Moon Face, there was a nurse (male) who worked alongside him in the chemo unit, I wasn't quite so sure of this one, from the very first time I met him he was like the song from Sesame Street, 'One of these nurses is not like the others, one of these nurses is not quite the same' I think he was a part of the picc line team and he may have been more senior than some of the other wonderful chemo nurses who went about their business quietly and kindly, but I'm not convinced. He had less of an air of authority and more an air of superiority, not quite the same thing, more David Brent than Florence Nightingale... he did unknowingly add a certain unexpected comedic value to chemo but I made it clear I was distinctly unimpressed when he tried to disparage the community nurses from my area, and not finding an ally he kept his distance.

Community nurses are terrific unsung heroines, pootling around the countryside like industrious bees they spend time with their patients who need them more than we would like to admit. I have my favourite, I'm not ashamed to admit it, right from the moment she walked up the stairs to our flat I adored Sparkly Mc.Gee, the affection seemed to be mutual and pretty much instantaneous as was a wicked sense of humour and a dirty laugh. She was good, she was very good, I plied her with home made brownies and banana cake because she made me feel better just by being here. In exchange she taught me how to do my own daily stomach injections and cured the ulcer on the inside of my leg with her magic plasters and no nonsense advice.So much for what that doctor told me about chemotherapy stopping it from healing, he obviously underestimated the power of nurses....And whereas the others I have come across will always be wonderful and colourful characters in a play where I was a just a passing protaganist, Sparkly will become a good friend because I now have her number and if she doesn't keep in touch then I will hunt her down.

Every cloud and all that.

Finally the unqualified nurses, the ones who came and sat with me during chemo, bringing mints and magazines and holding my sweaty hands and drooping head as I went through the general misery that is that treatment. They kept me sane, put up with my incoherent ramblings and increasingly grey face, they made me feel less of a burden and just plain loved. 

Lucky me.

Sunday, 22 March 2015

Who Loves Ya Baby? Part 13

If I go out I spend my time staring at the cracks in the pavement, I tend to keep my head down...it's easier, because people either stare at me or they pretend they haven't, if I look down then I can't see them noticing there is something different.

I'm not sure who I feel sorrier for, me or them...

I've now lost my eyelashes, not strictly true, I haven't lost them, I wouldn't be quite that careless. They have gradually fallen out, the realisation hit me one day when attempting to put mascara on the wand kept hitting my eye-lid instead, what a muppet. It took several goes before I came to the conclusion the reason I was making such a mess was not due to my bad eyesight, it was because there was no longer anything to put mascara on. That item of make up  has now been relegated to the box of useless-for-the-moment-items together with my shampoo, conditioner, straighteners, grips and hairbands.

My eyebrows are practically non-existent although I can pencil those in, trouble is I don't always do it very well and there's a dilemma, because once bodged I can't then scrub off the offending brows, just in case I rub off the remaining hairs. Life has become very complicated. The real problem I have now is that I have that look...the 'cancer' look. You know it, you've seen it a hundred times and when faced with it you didn't know where to look either, now I have it and aside from a few very close friends and my family who can still see the real me despite my anonymous face, I avoid people and don't tend to venture very far unless I absolutely have to.

I have been out, needs must and all that, and sometimes I do feel brave enough to deal with the looks and the stares. In the car I whip off my beanie if it's too warm and watch the reactions of those driving past, sitting in traffic has been a real test which sometimes I can do and more often than not I can't. People can't help staring, I must look quite odd, I was in the hospital car park recently, hatless, driving slowly around looking for a space and I watched as people did a double take and then studied the space above my head. It makes me feel like the biggest freak in the world and I try not to let it get me down but sometimes it just does.

I have friends who tell me I should care less and I do wish I could, I'm just not very good at it. I don't like not wanting to go out, I don't want to hide away, I would like to feel confident about who I am and what I'm going through but it is quite hard to do when it's just me, or so it seems, which brings me on to something which has really puzzled me. Just where are the rest of them? Where are all the women who are going through chemotherapy? Are they all hiding at home because it's easier than dealing with the discomfort felt by others? Should I start an out and proud group for baldy females so they / we feel a bit more relaxed about being in public. If this awful disease is so common and loads of poor women are going through the same treatment, then surely there needs to be an advice manual given to the public of what to do and how to react when they have a baldy in their midst.

I have been very lucky, it's been really cold so I have managed to keep my head covered with a beanie. I'm rubbish at wearing head scarves and they are a bit obvious, wrap a scarf around your head and you may think you are channeling a film star from the forties but you are kidding yourself, that look screams cancer /treatment and chemo all at once. My wig was fine to start although it was so itchy I gave up on it, now I've lost all facial hair it looks terrible, like a bloke wearing the wrong colour toupee, so my choices are somewhat limited, and with the onset of warmer weather I can feel a totally reclusive moment coming on, 'I vont to be alone' only I don't...not really.

I have been to restaurants and coffee shops with friends and buoyed up with their words of love and encouragement I have even felt courageous enough to take my beanie off, it is shocking to see and I really am sorry if I made anyone feel uncomfortable. Kids stared, and that was fine and expected, they stopped after fierce stares from their parents. It was liberating for me and once I had stopped blushing, it felt great. I am not unsympathetic though, I have wondered how I reacted, before all of this and the fact is it is very difficult, knowing what to do for the best.
I was in a supermarket with The Boyfriend a couple of weeks ago and he nudged me and pointed out this lady who had walked past us, "Like you" he whispered and smiled at me. I whipped round and saw her, she was wearing a turban hat and had painted eyebrows, I cannot explain how I felt when I saw her but it was sort of lovely, I didn't feel quite so alone, there was another one just like me and for a split second I really wanted to rush past all the regular shoppers and go up and hug her. Deciding that she would probably call security I left it, but I definitely felt better for having seen her out.

If you would like to know what I think you should do when you see someone who you believe may be going through chemotherapy I can only say what I would like. Go ahead and look at me,  and then smile at me please, because your smile will make me feel a million times better and in that split second I will pretend that all is normal and you can see me, just me.

Friday, 13 March 2015

Fizzlesticks Part 12

This chapter was going to be called 'Rude Awakenings' all about how I had become very positive and virtually spiritual about what was happening to me, I was tired of feeling sick and weak and I was ready to tackle each treatment head on and not allow it to bring me down, or beat me or even stop me from living as normal a life as possible. Not only was I going to beat this I was going to do it singing dancing and laughing.

Then I had treatment number four and any notion of a new life affirming attitude was kicked into touch.

Back in December when I was last in the school where I teach the children had been told in assembly that I would not be taking their classes for a while and why. Later that day one of the children from my class who is 13 going on 28 came up to me to tell me that if I ever needed someone to talk to she would be there for me. It turns out that Little Miss Wisebeyondheryears had herself gone through cancer at an appallingly young age, as a result she was blind in one eye and knew all about hair loss, sickness and indeed chemotherapy. She was a treasure, a straight talking empathetic treasure. This conversation was the week before my first chemo and I remember asking her if she thought I would be able to make it into the school fair the Saturday after. She shook her head emphatically 'No way!' she said, 'not a chance'.

Feeling that here was someone who would tell it like it is I asked if I really was going to feel that bad. She looked at me quizzically (probably weighing up whether or not I was strong enough to hear the truth) and said unequivocally:

"Yeah, it's pretty bad, but nowhere near as bad as how you are going to feel at the last one" and she smiled her beautiful smile and went on her way. Out of the mouths of babes...

In a world of highbrow medical professionals who seemingly prefer their neutral non-committal vantage point from the proverbial fence, this child's blunt opinionated words were like a breath of fresh air. I quickly became used to the fact that it was rare for anyone to say for definite what the effects would be, or even how long they would last but to hear someone answer a question clearly and be straight down the line about it, well it didn't just make a refreshing change to hear, it also helped me to prepare for what was coming. I shall tell her as much when I next see her in the classroom.

She was right too, absolutely spot on, it does become progressively worse, the symptoms, the physical effects, the psychological impact, everything. What doesn't break you makes you stronger right? Wrong...it actually makes you very upset and angry. Anger isn't good for my condition...apparently I should be calm and zen like, well in that case they need to pass that message on to the oncologists. I have oncologist envy, anyone who says they travel miles to see their specialist because they have so much trust and respect for them is met with a speechless stare from me. I have seen three so far, three very different ones, all very lovely in their own ways I'm sure...maybe... but all of them managing to deplete me of any sort of faith in a system which should know who I am pretty much inside out from my medical history and what I have already been through. Or am I asking too much?

Two days before each chemotherapy I have an appointment to see the oncologist, I also have my blood tests and my picc line flushed and changed. Honestly, never a dull moment. After the fourth one The Boyfriend and I were more concerned than usual because I hadn't had a good week, in fact I had barely had any good days. Normally the week before chemo I feel stronger, not quite normal as I can't remember that feeling but near enough. The symptoms this time had been abysmal, so together we made a list, I figured the more details the oncologist had about what I was going through the better he / she would be equipped to help.

I should have added seriously delusional...

The general consensus is that chemo leaves you feeling sick and tired, it does indeed, but as your body slowly breaks down (at least that is what it feels like) it offers up a whole host of other side effects, that in itself is a misnomer, side effects, they aren't on the side at all, they are served up as all encompassing main dishes. You have the ones you expect, or the ones you are told about such as the sickness, sheer exhaustion, your skin drying out, actually everything starts to dry out but you might be eating your tea so we won't go there. They also warn you that you may experience mouth ulcers, or as I know them tiny blisters on the roof of my mouth which grow overnight. However, some of the effects came as completely horrible surprises, and it was these I had on the list in my dry little hands as I waited to see the oncologist.

Enter centre stage Pretty Boy. Yes that is what I shall call him, early thirties, tall, mixed race, good looking, same hair as me, or lack of it, eyelashes I would kill for, a high bum, floral fitted shirt and bad slip on shoes. Well, something had to give. He thought he was something else, charm personified, he greeted me with a smooth 'Hello Martina, we have met before please sit down, how are you?'.

Indeed we had, the last time I was here, surprised I was meeting yet another oncologist I had found his 'charm' slightly nauseating  (and let's face it I am a bit of an expert on nausea at the moment) but I gave him the benefit of the doubt and he gave me sick pills with a sedative which helped me sleep. I thought he'd be impressed with my list, I felt like I had done my homework.

I started to read through the list, explain about the breathlessness:

"I have to literally stop for about 10 seconds mid conversation before I can speak, it's quite scary" I told him.

Not a word, he just looked at me.

"You know" I continued "Not able to talk, a bit like Gareth Gates syndrome" I said, trying to make a feeble joke.

Nb, do not joke with the medical profession, and certainly not about a former Pop Idol with a stammer, he probably wasn't even born then. No response, cue tumbleweed. He just kept looking at me, as if I had the answer, or I needed to say more.

"You do want to know about these don't you?" I asked, feeling slightly stupid with my postcard of maladies "I thought it would help if I made a list."

He smiled at me and nodded, and wrote something down but I wasn't convinced. He then suggested we listen to my chest, which we did. He checked my blood test results on his computer and it transpired I was anaemic, dangerously so. Right, that would explain the shortness of breath, chemo taking out all of my red blood cells like an almighty kung fu kick and the oxygen then struggling to move around my body, no wonder I couldn't breathe, oxygen being relatively vital to do that. I love a scientific explanation. No problem...

"I'll grab a fillet steak on the way" I said. Somewhat naively.
"No, that won't make any difference, you need a blood transfusion" He said making more notes.
"I can't, I have chemotherapy the day after tomorrow, fifth round, I am not delaying that"
"Oh" He said, raising his eyebrows (lucky bastard) "You still want to go ahead"


With that simple little question he sowed seeds of doubt in my head which were to rear up again and again.

"Why would I not go ahead?" I asked, utterly gobsmacked.
"Due to the severity of the symptoms you are experiencing I thought you may have second thoughts" he said, "In light of the fact that you would like to continue I will see about a blood transfusion"

It's hard to explain this, I have managed to do four lots of chemo, my brain and willpower have been entirely focused on getting through all six, it is getting worse, without a doubt, but it's something I have to do, at least I thought I did. I'm going to park that for now, let's go back to the list.

Fizzing...I hate this one.You know that sensation when you were younger and dive bombed into the pool and the water shot up your nasal passage and gave you bad sinus pains? Imagine that but with chemicals instead of water. That's fizzing, I explained all this to Pretty Boy who managed to say this:

"That's funny, I have never heard of that one"

Funny? Funny? What part of that is ..... funny?? Insert your own swear words, I can't because my Dad reads this.

He then looked at the MacMillan cancer website to see if he could find any notes on fizzing there, it beggared belief, I pressed on, I couldn't bear much more of this but I had a list dammit.

"I've been feeling very down, teary, almost depressed" I said, "I'm not really like that and it's worrying just how low I've been feeling" I carried on through the pause before the tumbleweed hit me

"I'm guessing that's another side effect though".

Brace yourselves....

"Are you self harming?" he asked.

Really? Seriously? Self Harming? I wish I had the presence of mind to have given him a smart answer back, such as 'I think the NHS has that covered' which a lovely friend said to me later that day adding a few choice words of her own, but then it would have gone over his tick boxing head anyway. The only other thing I could tell him about were the spikes in temperature I had been experiencing, suddenly becoming very hot indeed. He leaned back in his chair and had a brief look at my notes on screen.

"That'll be the onset of the menopause" he said, "Chemo does that, brings it on, and you're the right age".

Never mind self harming, if I hadn't been so breathless I would have taken him by the scruff of his floral shirt and lifted him right out of his bad shoes.

Sunday, 1 March 2015

You taking the Picc? Part 11

These are my new best food friends following each chemotherapy treatment:

Calippo ice lollies - Genius for taking away the metallic taste.
Carrs Crackers with butter and salt - When nothing else appeals.
Ginger Lemon and Tumeric Tea - It does good, tumeric is brilliant for infections apparently, and it tastes great and makes a change from water.
Roast Chicken with everything - I have to control myself over this, I'd eat it every day if I could. Was never a fan before all of this - weird.

I have also taken to rubbing ice cubes across my face every morning, I read it in a Sunday supplement magazine, some supermodel recommended it as a technique for keeping your skin young and I will freely admit to being taken in by any beauty tip which costs nothing and is fairly painless, the irony of those keen on youth through botox is not lost on me...inject yourself with poison to look better. Seriously?
I'm not saying the ice cubes are helping much but I have to say that much to my surprise I am, four treatments later, still with my eyebrows clinging on and pretty fresh looking skin. Even my oncologist said so, not that I trust her particularly but a compliment is a compliment. Mind you, I am now worried that because I have actually published this bit about the eyebrows I have jinxed it and they will start to fall out, I hope not, my eyelashes have all but disappeared so my eyebrows are all that's keeping me looking vaguely feminine.

I am digressing, I need to go back a bit, to when they told me I would need a picc line fitted. As you may remember me mentioning that my veins had all dried up after the first chemo, and not even a giant ice cube would bring them back to life, so as I had been advised at my first treatment I should really have a picc line fitted. 'It will make your life so much easier' they said. 'No more needles' they said. 'Very easy to do and maintain' they said, 'like a tap in your arm' although to be honest they had me at 'no more needles'...

In between an amazing Christmas (never been spoilt like it) and looking forward to a quiet new year before all the treatments started up again, I was booked in for an appointment to have this thing done. It did not even occur to me that it would be anything more complicated than the equivalent of having a blood test. You really would think that by now I would look these things up so I was fully versed in what was going to happen, but I much prefer the idea of burying my head in the sand as a good avoidance tactic until faced with the inevitable medical drama. That cold December day I dragged a Swedish friend along for the ride confident we would be in and out within the hour, convincing both of us that it would be easy and straightforward. So imagine my surprise when we walked into the room and we were shown a room and I was told to lie on the bed.

"Really? On the bed?" I asked, "Could I not just sit on the chair?"

The lovely nurse with her hair in Heidi plaits seemed quite sure I would need to lie down, for the local anaesthetic.

"I need an anaesthetic?" I asked incredulously. I do like to test everyone in the NHS, I'm sure they must think I'm a total pain in the backside but each time I am faced with some sort of new intrusive medical procedure I feel I should just check that it is definitely necessary.

"Yes", she replied, "When they told you about this did they not give you a manual describing what would happen?"

"Well yes, yes they did" I said, feeling my face burning up, regressing to a ten year old version of myself facing a teacher with missing homework. "I may not have read it, is all" I mumbled and climbed onto the bed.

"Well, what we are doing today is cutting a hole in your arm and the picc line is then inserted, the tube follows a track across your chest and hangs above your heart, making it much easier to administer the chemo." She explained smiling at me...."Then you will have an x ray to make sure it is in the right place and then we will give you a dressing and more instructions on how to look after it as it will need to be flushed out every week."


Here we go again, I had so much stuff given to me after the last session such as meds, prescriptions, Heat Card, pamphlets and so many instructions on what to do and where to go and who to call, that when they told me having a Pic Line put in would be easy, I believed them. I didn't for one second think I should study the booklet. Turns out I was wrong, I should have taken an extra curricular exam on Pic Lines, their insertion and their sodding maintenance because life was, quite simply, not going to be quite the same again for several months.

I have wondered about telling you this because people are beginning to think I am having an exceptionally rough ride, I'm not at all, okay there have been a few occasions things haven't gone swimmingly but I'm alright really, I just happen to be writing it all down and half the time it's my own lack of research or paying attention which leads me into these situations. I should know better but it's a huge learning curve and hopefully if anyone else is unfortunate enough to have to go through something similar they are at least prepared from my experiences, or at least they know to gen up on it.

You're welcome.

There I am, on the bed while Heidi covers everything up on my right arm with a sheet so I can't see what's happening (probably better) and then tries to find a vein... yeah, good luck with that. Meanwhile my Swedish friend, who I thought looked close to tears at my suffering and pain, actually stands up and moves closer to have a better look at proceedings.

"It's quite full on, isn't it?" I say to the nurse, "Not quite as run of the mill as I had thought, more of a mini-operation" I said, although I am hoping she is going to correct me and tell me it is a walk in the park.

"Yes" she replied, "Pretty full on and after this you need to go up to have an x ray to make sure it's in the right place and then we need to put your dressing on" and then she added, "but it IS going to make things so much easier for you".

I nodded obediently but I wanted to scream 'WHEN? and HOW?' Then there followed lots of digging around, and I could feel a liquid sensation, so I asked her:

"Gosh" I said, "It's bleeding quite a lot isn't it?"

"Can you feel something?" She asked looking around quite panicked, "You shouldn't be able to feel anything".

"I can't feel any pain but something is definitely pooling in my armpit, I'm taking an educated guess that it's blood" I said.

"All completely normal" she said, in a voice slightly higher than normal, even my lovely Swedish friend sat back down in her chair.

The x-ray showed up the fact that it had gone in a little too far so it needed to be pulled back between 4-6cm. It's a bit like when the string from a bikini top disappears into the lining after a spin in the washing machine and it then has to be dragged back out using a safety pin or something similar. Not quite the same technique but the same problem... It's easier using metaphors like that because then I can pretend it's not happening somewhere inside my chest.

It was realigned by someone I shall always refer to as Moonface, a large fellow with a very large and very round face, I know this because he worked on my arm and was very very close to me so I was able to appreciate the size of it. He was definitely a picc line expert, he took his work very very seriously (which is good) but his face to face interaction with a patient less so (not so good) so I was treated to degree level technical information about peripherally inserted central catheter (Piccs) while he did the dressing and bearing in mind he was inches from my face he did not once look directly at me but spoke directly to my upper right arm.

My picc line will have to be flushed once a week by community nurses in a place which is about a 40 minute drive from me,  and the dressing will need to be changed. I have a red booklet for the nurses down there which Moonface made a big song and dance about keeping it up to date, but at the time I was being a good patient and regardless of whether he bothered to look at me he was taking it all very seriously. There would be trouble ahead in the upkeep of my Picc line and I would be very much caught up in the middle of it, a bit like office politics or a medical version of he said / she said, but I had no idea then, that was all to come. Never a dull moment.

I went back home absolutely wiped out by the whole day. It didn't exactly hurt but it did ache, I could feel it that first night, a new foreign body sitting across my chest. It is staying there for at least three months, I can put up with most stuff and I accept what is happening to me, I know it is not the worse thing in the world, I know in fact it could be much worse but this thing, this bandaged up tap on my right arm, this thing I really hate. I can feel it all the time, it affects the way I dress, the way I shower (I need to wear a rubber sleeve) and sleeping is a worry. I know all the good it does, but I am not making friends with it and I am counting the days till it is removed...currently at the time of writing this I have about forty days left.

Definitely something to smile about.