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.

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"

What???

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.

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."

Crikey.

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.