How Was It For You?

Chemotherapy is a highly individual medicine.  It is made for the patient in the hospital pharmacy, once all the patient’s details have been given.  True, the processes within the body are broadly similar, but the body’s response to those chemicals can vary widely.  This makes the next part of my ‘journey’ quite difficult (oh, how I hate that term, but find myself using it and berating myself simultaneously).  While there are commonalities between people having chemotherapy, nobody can tell you how it will affect you.  Those of us who read the ‘side effects’ lists on drugs will know that there is a tendency for drug companies to cover themselves and put all manner of ‘side effects’ as potentials.  These days the companies helpfully categorise side effects so you have an idea of what is common and what is not, but facing something so fear-inducing as chemotherapy, my usual way of dealing with things by trying to understand what is coming is rendered useless, partly through my own fear.  Cutting off my hair, which I don’t like even if it does make me look so much younger, was something I could choose to do to mitigate the effects of what was coming.  However, I have always been aware that to some extent I must surrender.   This I have found tricky, because to surrender I have to trust, and life has taught me that is a bad idea. 

Knowing things is a good way of protecting yourself from others.  People can’t have power over you if you really know something that they don’t, or only know partially.  One of the things I relish about my job is how much I understand of what I do.  There is a flow, a process, working on several levels at the same time, and to get into that flow is to lose a sense of time.  It is profoundly satisfying to learn some new research and slot it into the structures in my mind, to see how it influences and changes what I already know.  So how does such an academic deal with a cancer diagnosis?  By knowing that it isn’t good to know everything, that this journey, (yes, there it is again) is not about knowing and predicting, but experiential learning, empiricism at work.  This makes me very vulnerable because I have to trust those who do know, have my best interests at heart.  Well, of course they do, I hear you cry, the doctors and nurses want the best for you, why wouldn’t they?  Yes, of course, but those doctors and nurses have to deal with lots and lots of people, some a great deal sicker than me, and some who won’t get better whatever happens.  They are not my personal staff, and I have to bend to be part of the system.  To accept and let go.  And know it’s going to hurt, and that nobody would do to me that if they could possibly avoid it. 

In the days running up to the first chemotherapy treatment I was in a daze.  I checked the lump aka tumour every so often, fearful that the cancer might have spread out of the breast.  It hadn’t seem to, but it did appear firm and almost perky to the touch.  Alcohol was calming me, but not changing me into a raving drunk.  I had my ‘last bike ride’, ‘my last workout’ my last everything before journeying, as my mother put it, ‘to the other side of the mountain’.  It was a phrase she used to explain how it felt to have cancer.  A one-way ticket.  An experience so life changing you could never return to how you were before the cancer.  I knew this was what was going to happen to me, and so gently you probably wouldn’t have noticed the change, but I knew.  I knew from the moment I took my place in the comfortable chair in the chemo ward I was never going back.

The ward was light and bright with comfortable chairs in their own area with a companion’s chair beside it.  Each area had the potential to be curtained off, and each chair had a pump on wheels next to it.  I arrived at 8.30 with FLM relieved that the awful receptionist had been replaced by a kinder person.  My nurse for the day was there to collect me and offer me a choice of chairs: I chose the one in the corner.  I was the only occupant of a comfy chair with hair, so I knew I was the new girl today.  People with lines implanted in their upper chests and arms walked casually past. There were a array of hideous headscarves worn by those in comfy seats, people greeting the staff as old friends with a hug, people handing in sharps boxes with assured practice, a variety of uniforms to indicate status of staff, a man in a scarlet waistcoat bustling with a biscuit basket; all the signs of my new world, that other side of the mountain.

It was a relief to finally sit in the comfy chair.  I had brought a shoulder bag with a book, my tablet, my phone, mobile chargers and cables for both and my folder of information.  I was as prepared as I could be.  The nursing staff were kind.  People always say that about nurses, but I don’t think we should ever underestimate the power of kindness.  They explained what they were going to do, although several days after this process, I just remember a lot of bags going up on my pump.  My cannula went in, after a first failure, of course, at about 8.50.  It was taken out at about 4.50.  Not all of that time were drugs being pumped into me, but they needed a decent gap between each of the drugs when saline went in, about an hour, to make sure any side effects could be identified at the time.  I was fine, and not in pain.  The only time I felt uncomfortable was whilst the steroids were being dripped in for about 15 minutes, when my legs had pains in them, and I went to sleep.

My nurse explained about what would happen to me after the treatment had finished.  The key fact I took from this was that everybody responds differently.  Some people have severe symptoms, although an antiemetic infusion was given to prevent me being sick, some less severe. The number of symptoms varied, but I had to be very careful with taking my temperature because of the risk of infection and what it might do to my immune compromised body.  I left feeling fine, and quite heartened by the experience.  My only fear is that the drugs won’t work on me, but I have been told time and again they work extremely well.  They cost a great deal, so I reason they wouldn’t use them unless it is believed they would work, and I am immensely grateful to have access to them.

So how did they affect me? For the first two days hardly at all.  I was told the steroids would cushion me, and that they did, and from them on it’s been like having flu.  When I get flu (which I haven’t had for years as I’ve avoided the flu jab) I get deep bone aches.  I have this again.  My taste has distorted, I’ve gone off alcohol and, to some extent, coffee.  My drink of preference is ginger beer.  I haven’t had the diarrhoea, which is very common, but probably because I’ve had to take paracetamol and codeine to deal with the pain.  So, some benefit then, I tell myself.  I have started looking on the internet for British sites on cancer treatment because I know what I’m having now and it’s interesting to read about what I’ve had.  I’m not looking up success rates because that won’t help me now.  I have to inject myself every morning for the next few days to counter act the drop in my white blood cells.  I’ve managed that, much to my relief, and it’s virtually painless and easy.  My morning 5 minute yoga routine, my weights routine to try and make sure my bingo wings at least try and stay away, are more important parts of my day rather than worrying about what might happen.  I have to live in the moment because I don’t know how I’m going to feel next.  I can’t predict anything about myself.  Except I know I’m going to lose my hair.  Today I went to choose a wig.  Next, it’s getting over my anathema with scarves and hats for the hairless.  I’m going to do this my way, but in their hands.