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'?

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.