Cancer and Me

Introduction

I was first diagnosed with cancer in January 2010.  At the time I’d only ventured tentatively into blogging[1], and publishing a book was far from my mind. My illness was what kick-started my writing, as it is for many people.

At first it just gave me the time to write, so I wrote whatever I thought of writing (normally theological). Then late in 2012 I was reading a fellow-lymphoma-sufferer’s blog, and I found it really helpful. Primarily it confirmed to me that there are other people out there going through the same things, having the same worries, uncertainties and difficulties. And it struck me that to that point I hadn’t really written fully about what had happened to me and how I felt. So I started a ‘cancer and me’ section of my blog to recount the particulars of my experience so that I could help others in a similar position. More recently I’ve also found these other blogs useful to prepare me for what a stem cell transplant is really like. So I realise there are many reasons why the simple recounting of my story may help other people.

One of the things I didn’t expect was how much those blog entries would be appreciated by my family and friends as well, and by others too, it has to be said, especially during my stay in Southampton hospital for the stem transplant in December 2015. And their responses to it via comments on the blog itself and via Facebook were a real source of encouragement for both Heidi and me. So for anyone else facing this type of trial, I would definitely encourage you to try to find a way of providing this kind of update for friends and family. You will find it very uplifting and worth the effort.

However, one thing that is difficult about a blog after a while is that it gets quite hard for the new reader to locate earlier entries to trace the start of the story or particular events. Newer entries come at the top and there’s no clue how many entries you have to track back through to get to the start. A blog is much more suited to capturing and presenting the blogger’s current thoughts, with older thoughts rapidly declining in relevance.

So after almost seven years, and more than sixty blog entries, it is time to make my story easier to read.

This account is primarily for those who come after me having been diagnosed with cancer, who want to find someone who has been through something similar. No two people are alike, and so my thoughts and feelings will probably be different to others in the same situation. But, for what it’s worth, if these memories are helpful then I will be pleased.

You will notice changes in style throughout. When I started writing ‘cancer and me’ entries for my blog I had a bit of catching up to do, so the parts up to the beginning of 2013 have the benefit of hindsight and an extended period to reflect back on, and are written in the past tense. Between 2013 and 2015 the entries are quite spaced out, but feel more like a journal, and the reflections are more immediate and raw. And there were so many twists and turns in my second relapse in 2015 that you will find my experience described in quite a lot of detail and with a fair degree of emotion. Finally, for the stem cell transplant in December 2015 I changed to writing daily, and slowed down again for the recovery afterwards.

For this book I’ve just lifted the entries from the blog with only minimal editing, taking the view that the biggest advantage of this book is the ability to read about my experience chronologically. However, in order to locate experiences that may be more relevant to you, I’ve also grouped the chapters into the main aspects of my story: Being diagnosed and having chemotherapy for the first time; recovering after the first experience of chemo; the first relapse; the stem cell harvest; the second relapse and chemo; autologous stem cell transplant and recovery.

I’ve tried to give all the basic facts about the things that have happened to me, the steps of diagnosis and treatment, but also then reflected on the many things that have struck me as a cancer sufferer. I’ve also tried to give some detail of what’s involved in some of the things that are mysterious to those who haven’t had to go through them – things like CT scans, Hickman lines, bone marrow biopsies, endoscopies, NG tubes, etc. etc. If you ever find yourself being told you need any of these things, hopefully you will find my descriptions helpful, coming from someone who has actually been through them, to go alongside the factual information you’ll be given by the hospital.

Please understand I’m not trained in medicine, so my descriptions of medical procedures are as a lay person. If you’re a medical professional who wants to pick up some inaccuracies in my recollection of some of the medical procedures or terminology, please feel free to correct me. If you’re a fellow cancer patient, please let me know whether you find any of this helpful and feel free to ask questions. You can contact me via my website at www.andyburrows.me.

Finally, I am a Christian and have written faith-based reflections on my experience with cancer both on my blog and in another book I’m writing, Facing Cancer with Faith. That book will interweave my story (though told quite differently) with my personal, spiritual reflections on the experiences, to show how my faith affects the way that I have dealt with hardships. If you are interested in that aspect, then I hope you’ll consider reading it. In fact, personally I’d rather you read that book, because I think the Christian faith has worthwhile things to say about the way that we face hardship and suffering, even for those who don’t currently believe. However, I wrote my ‘cancer and me’ blog entries with a view to being accessible and helpful to those who are not interested, for whatever reason, in the Christian faith. That said, I haven’t expunged faith-based reflection completely from this book, but I hope this will come across as appropriate where it appears.

May God bless you through this book, whatever your reasons for reading it.

Part One - Finding Out I Have Cancer

22 December 2009 – One Snowy Day

This phase of my life all started in December 2009. I was (and still am at the time of writing in 2013) a self-employed Interim Manager, specialising in business financial management, and I had been out of work since the beginning of April, had maxed the credit cards, borrowed money from my business (that I needed to pay the tax bill) and sold the better of our two family cars. Right at the end of the November, having reached a point of near desperation, I agreed to take an interim role further afield than I would normally consider, and at a lower pay rate. So in December 2009 I was relishing the opportunity to work and get paid again, but I was nervous about having to stay away from home two or three nights a week.

Physically I felt fine initially, but as the month progressed I became increasingly aware of discomfort just below my ribs. On one or two occasions that discomfort became pain that took my breath away, like an awful stitch in my side.

By Monday December 21st I had decided it was bad enough to make an appointment with my doctor. That was significant for me, because, like most males, I don’t normally like to bother the GP with anything. I was in the office – it was a Monday – and I had to own up to my boss that I wasn’t feeling great. The reason I felt I had to own up was that I’d nodded off in an in-house Financial Reporting course that our auditors had specially prepared for the qualified accountants in the business. I know that at least one or two people had noticed, but I hadn’t admitted to anyone that it was because I tended to get lightheaded when my stomach was feeling particularly bad.

There was talk of heavy snow, and I had the day off the next day, so given my distance from home I was encouraged to leave the office early. Then the train was delayed and I stood on the platform at Watford as it started to snow heavily. I couldn’t see much outside the trains in the dark, but there didn’t look to be much snow as I passed through Farnborough and Fleet nearly two hours after leaving the office. But by the time the train reached Basingstoke it was evident that the snow was very deep and still falling hard.

My stomach was still hurting, but as I trudged from the station to my car I realized that I wasn’t going to be able to drive home. I saw a number of stranded cars, and there were traffic jams on each major junction I walked past on my way to the car. So I decided to walk home. It took me over two hours and it was well past 9pm when I got through the door. I was fine though. I can’t say I was freezing, and my aching stomach wasn’t that bad.

My appointment with the GP was the next day, the Tuesday, as I had the day off anyway for my daughter’s 7th birthday. Given that most of the roads were blocked with snow, I walked over to the surgery, making my way through the crisp snow - in my wellies rather than work shoes this time – but it only took about half an hour or so to get there.

The doctor told me that I had ‘excess acid’ in my stomach, probably caused by the stress of starting a new job after the stress of unemployment, etc. He prescribed me some Omeprazole pills and said I would feel noticeably better well within a week. I admit I was sceptical, because it didn’t feel like it could be that simple. But I didn’t have any reason to argue, so I thought I’d give the pills a try.

Well, within two days, going back to work in Watford and staying there overnight on the Wednesday, it was clear to me that the pills were doing nothing whatsoever. I did some late night Christmas shopping on one of the evenings and had to find a bench to sit down on, feeling faint and in a lot of pain. I went home early in the afternoon on Christmas Eve trying to put a brave face on, so as not to spoil Christmas.

25 December 2009 – A Memorable Christmas Day

I’m afraid I only remember parts of Christmas Day 2009, and the overriding memory is feeling ill. I don’t remember the kids opening their presents in the morning. But I do remember not feeling particularly well at the time.

We went to church at 10am as we always do on Christmas Day. And afterwards, as we stood drinking tea in the hall, Heidi turned to me suddenly and pointed out that I’d turned yellow! She asked other people their opinion, and it was decided that, yes, I was looking pretty yellow, even in the whites of my eyes. A medic in the church strongly suggested that I should go to the out-of-hours clinic as soon as possible to get myself checked out.

I phoned HantsDoc, the out-of-hours service, as soon as I got home, and spoke to a nurse. When the doctor called back he said to come and see him at the hospital surgery whenever I could. Not wanting to let down my lovely mother-in-law, who had cooked a fantastic Christmas Dinner, I said that I would come after lunch! It was a lovely meal, but, boy, I regretted eating it later!

So I went up to the hospital as soon as politely possible after dinner. The doctor took some blood, and advised me not to eat anything. I said, ‘too late!’ He took our phone number and said he would phone back later when the results had come through.

By that stage I was feeling so rotten that we had to go back to our house, and I went to bed. I knew I had toys to unpack and build for the kids, but I just couldn’t. All I could do was lie very still in bed feeling rubbish.

And then Heidi came up and said the doctor had just phoned back. I was being admitted to hospital with suspected pancreatitis and jaundice.

I ought not to make it sound too simple. Being admitted to hospital is a process. One does not just go and make oneself comfortable in a hospital bed! So we had to turn up at the Emergency Department, where the HantsDoc GP had already alerted them I would be arriving. Even so, I still had to be booked in by the ED triage nurse for some reason. And then I was booked in again by the nurses up in ward-C3 an hour later, answering pretty much all the same questions.

And throughout that time I was feeling worse and worse, to the point where I could hardly talk to answer the booking in questions. And in C3, in the middle of booking in, I had to run for the toilet and bring up all that lovely Christmas Dinner! Should have gone to see the doctor before lunch!!

I was shown to my bed in a side room – quite a luxury, I came to understand! They set up the drip – my first experience of a cannula, something I have come to hate. For those fortunate enough not to have experienced this, a cannula is the valve that they have to insert into a vein in order to deliver intravenous fluids. It involves the nurse having to find a suitable vein in one’s hand, wrist or arm, and then jabbing it with a large needle with a tube and valve on the end of it. It is more painful than having a blood test.

Anyway, since they couldn’t do much investigation straight away, they set me up on intravenous fluids straight away to stop me getting dehydrated due to being sick.

As Heidi left me to return home, the nurse started to add to the saline some penicillin and some anti-sickness drugs (cyclizine). I think that was supposed to be standard precautionary measures. I was being sick, so anti-sickness drugs seemed sensible, and antibiotics should kill off any other bacteria hanging around waiting to complicate things.

But within a couple of minutes I started feeling hot, and my hands and arms started to swell up. I could see a rash appear on my chest, and then my face started to swell. My lips felt like I’d had a bad dose of Botox! The nurse was about to turn the light off for the night and leave the fluids going in, but I pointed out what was happening and she looked concerned and went off to get the junior doctor on the ward. The young junior doctor came in and saw how things were going and immediately bleeped her registrar.

I have to say that at the time I found the whole thing mildly amusing. I can remember laughing to myself to see the doctors and nurses suddenly rushing around. But I’ve had flashbacks of that time and I assess it a little differently with the benefit of playing through the memories slowly. I was having an allergic reaction to the penicillin, so they told me later. I remember being told to keep an oxygen mask over my face while they injected me with antihistamine. I remember the rash and swelling reducing. But at the same time, only as I look back, I remember drifting in and out of consciousness – all within this quite stupid amused feeling, not quite appreciating the seriousness of my predicament. I remember the faces of the lovely young female doctors – both the junior doctor and the registrar –