Monday, 7 October 2013

Try before you buy

So after the embarrassing trauma of having to locate and swab my perineum I return very sheepishly to my induction - all eyes upon me. A nurse with the longest and thickest dreadlocks I have ever seen in the medical profession (actually I believe the only dreadlocks I have ever seen in the medical profession) begins our induction. She introduces herself and gives a five minute potted talk on what we can expect from the chemotherapy process. She concludes her chat with stressing to us all the importance of being able to identify neutropenic sepsis which can occur during chemotherapy as the patient's immunity system is weakened. However she can't stress enough that we must be aware of any changes that could be the first sign of neutropenic sepsis as left untreated it could be fatal.

She then talks us through some of the side effects of treatment - nausea, mouth sores, flu like symptoms, tiredness, fatigue, constipation... And the list goes on and on. She's not only really not selling this to me she's also confusing me somewhat. Not that that's unusual or a difficult thing to do to me at the best of times but I am now fixated on knowing if I have netropenic sepsis. I thought I got it (well not actually got it as that would have been very misfortunate as I hadn't even ystarted!) but understood what signs I was looking for. However the more she talked the more symptoms and side effects started to merge together and I found my anxiety levels rising and my ability to maintain calm slowly ebbing away. 

She then left us to watch a DVD about neutropenic sepsis. I was optimistic that it would enlighten me somewhat and help dissipate the anxiety but my optimism was quite quickly dashed. After five minutes I wanted to scream at the screen, "How the fuck do I distinguish side-effects from chemo from this fucking potentially fatal thing you keep banging on about. Can someone please put me out of my misery???!!!" I hang back from vocalising because nobody else seems that perturbed. They stare ahead looking blankly at the TV screen seeming to hardly blink. Just absorbing it all in like sponges. And yet I can't. My desire to know more - to get this right (whatever I imagine 'right' to be in such circumstances) is overwhelming and yet I can't even discern a flicker of concern from my fellow inductees. They just take it all in without question. I suddenly feel like I am in a herd or probably more appropriately a flock as all I can think about is the phrase 'lambs to slaughter' - a phrase that keeps springing to mind time and time again throughout treatment.

However I now know it's not because they didn't care or possess the same anxieties as me. Far from it. I am sure they all cared and were as anxious as me, but another lesson I have learned from the world of cancer is how we all deal with things differently and react differently. I am sure they were just as scared deep down but felt, as I did, this overwhelming sense of inevitability. Also unlike me all of them were going straight into their first chemotherapy session after this induction. I, on the other hand, was undergoing what I have come to refer to as my 'Try before you buy' session. I had a week before I was starting proper, but these guys were having to process all this information then dive in head first into the unknown - real hardcore. So really what was the point of stressing. It's not like we were being offered any alternatives. It was this or...well not this. I don't want to be an alarmist and appear overly dramatic and say death, but I suppose that was the only other alternative so the likelihood of a bit of neutropenic sepsis or the inevitable shitty side effects must seem like a small price to pay for being given the opportunity to live! I sometimes think I should have started then too. Maybe I would have forged strong friendships with these people. I often wondered what happen to the only male amongst the group who had throat cancer. He was so upbeat and just wanting to get started so things could go back to normal. His treatment regime sounded so harsh. Mornings of chemo and afternoons of radiotherapy every day for an intensive period of time. At that time I couldn't really take the enormity of it all in, but it seemed a lot for one person over a one day period. Nearly two years on I am fully aware of what it must have involved and hope that it was successful and positive and that indeed life has gone back to as normal as it can after everything this disease throws at you. 

Being none the wiser as to how I would distinguish between whether it was side effects or neutropenic sepsis and getting withering looks for the nurse with my constant inane questions I felt it was time to go. She had given us all a DVD to take home and watch at our leisure. I started giggling at the thought of watching this whilst listening to the CD of my diagnosis - god the NHS know how to cheer a person up! I believe the DVD is tucked away with that CD gathering dust somewhere never to be re-visited I hope. 

I stand up to leave and say goodbye, wishing everyone good luck. For the first time my fellow inductees are looking animated. One of them asks me where I am going and I say that I wasn't that impressed with my 'try before you buy' session so have decided not to go through with it. I see a look of astonishment and puzzlement on a number of faces. I quickly remember that as much as I may think it amusing these people are not here to be amused with my flippant nonsense, but about to embark upon a life changing experience. I quickly backtrack and explain that they were just fitting me in, but my treatment is scheduled to start next week. There is an audible collective sigh of relief though the man with throat cancer says to me, "I was just thinking good on you, what a brave girl..." 

As I leave I think about that word. Brave. They're the brave ones going straight into this. I have a week to process what I've been told and mentally prepare myself whereas they are putting their hands into warm water trying to make the veins rise to the surface to make it easier to insert a cannula. They are the one being pumped by syringe or intravenously over a period of hours with drugs that will feel like nothing else in this world and even though I don't know all this right now in the weeks and months to come I think how wonderfully brave they were like foot soldiers going over the trenches into the First World War into the unknown, but determined to do it. 

I however am not feeling that brave today. That will be me next week and I will try to be the bestest bravest soldier ever, but right now I am going to be a little more cautious and a bit less brave and spend the next week preparing myself and contemplating what's ahead of me. 

My friend snaps me out of my revery. "Do you think you could extend this try before you buy to the pub? We can see if we can get a few glasses of wine on the house. What do you think?", says my friend. Unlike the last hour I have no problem understanding this and the only anxiety I have is how far away the nearest pub is. 

No further persuasion is needed as we head to the pub to try our luck. 


  1. well done love, it sounds like a nightmare session for you and I can only imagine how you must feel there at the coal face.You have a huge strength and a walloping wonderful sense of humour and both of those together will get you through. I know I'm not great at keeping in touch but am sending you all the very best from down under here in NZ. lots of love and hugs, Chich xxx

    1. Thank you lovely and so happy to hear from you. Means so much you responding from so far away. Hope you are all well and that we can catch up on the phone soon. Lots and lots of love to all of you from all of us xxx

  2. Soraya, so much to take in reading your blog, even having gone through some of the same experiences. Say some, as I escaped the chemo bit, but I know my heart rate rises as always when I follow your progress. Thank God I met you & the girls at the support group. Reading through twice, am still unsure what neutropenic sepsis is, but
    do remember being given swabs & asked if I knew where my perineum was, I lied & said "yes" then locked myself in the loo until the word came back to me thro, the mists of time! Your humour & brilliant writing always leaves me thinking you should get this published, hope you do someday, In great admiration, Love INDIA xxx

    1. Hi lovely lady. It always means so much to me that you take the time to read my posts (this time twice!) and you always give me such full and positive feedback so thank you honey. I too am glad we all met. It has meant so much to me and made what could have been a terribly dark time just that much brighter. And just for the record I still no wiser as to what neutropenic sepsis was or is. Thankfully I will never have to know again. Lots of love to you xxx