TIMELINE: IN WORDS

I was diagnosed with stage 3b bowel cancer in August 2016. I had a tumour in my lower colon, and two abnormal lymph nodes. I’ve had radio/chemotherapy, surgery and six months of chemo. I’m now in remission, waiting for the final surgery to reverse my ileostomy.

My tumour was discovered after 6 months of changed bowel output. Early tests didn’t show anything, until I was finally booked for a colonoscopy. I thought this would just be routine, and went with a friend who lives near the hospital. So my family found out I had cancer by text.

After my scans, I waited a week to meet the consultant. This was probably the hardest time of all.  When you meet with the team for the first time, you won’t remember important details, so you need to give that job to someone else. You’re waiting to hear how bad things are – will you survive or not, and what are your chances of survival? The details will get lost in your emotions. Everything may make sense at the time, but you’re bound to forget shortly after, as you’re still processing. 

The team meets to decide on the best course of treatment, and for me, that meant a last-minute change of plan. No surgery (4 days before I was due to go in), but radiotherapy with chemo instead. And a wait of 2 months, because there’d been a surge of patients needing treatment. Cuts or kismet? I was never sure.

Many consultants use medical jargon – that’s the world they live in. If you’re going through this now, check out the MacMillan and NHS websites before your meeting if you can. 

Telling others is never easy.I found it the hardest thing to pick up the phone and tell my family I have cancer. I couldn’t do it straight away, so I sent them all a text, knowing I’d have a bit of time to prepare myself for the follow-up calls. To some, this might seem cold. But for me, it was the only way to stay in control (more on that later!).

I found out about my cancer the week before going back to work after the summer break. What to do? Wear a badge, maybe? I told a few friends, but stuck to the usual script for everyone else. I was expecting the call for surgery within days, so it was difficult to face my students and explain what was going on. I leaked the truth in stages.

Some people were supportive when dealing with my new circumstances. They said how sorry they were, and listened when needed. Top marks to them. 

Some were fine but well-meaning, and did that thing where you tell someone a story about a relative/friend who had cancer and survived. That’s OK, but doesn’t really help. It’s a cliché, but everyone is different, and this is happening to you. You alone. You’re probably still processing, and maybe don’t know whether you’ll survive.

Others just avoided the subject. Not a major problem, but not helpful either.

Cancer smashes plans and expectations. It rips apart the old you, and creates one or more new versions of yourself. This new self has to face up to major physical and emotional changes, often more than once over the period of treatment. I’m now married, I’ve made a will, and put things in order. 

I’ve had to give up control of major parts of me – my body most obviously, but the self that thought it could be independent and self-reliant. I’ve said goodbye to cycling 16 miles a day on my daily commute, as I’ve retired early from my job as a college lecturer.

I’m a middle-aged man who holds things back by default. In the early days of diagnosis and treatment, this was especially true. I felt a duty to keep a tight rein on my emotions, and to reassure my family and friends that things were OK.

After a cancer diagnosis, there is no right way for you to feel. It’s difficult for you, and people close to you, to deal with your emotions. A common reaction is to mask your true feelings. 

My drawing project became one way to open up to people, because I had to keep so much inside. A big part of the blog I created is about sharing coping strategies, through drawing as much as through words.

My blog is about living with cancer: not how to fight it, but how to deal with it. How it feels, and how to cope with those feelings. 

A lot of the time, you’ll feel like you’re on your own. Only you have the cancer., but you need others to get you through. You lose control: in the past, you might have been self-reliant. Now you have to give up control, and that’s not easy.

So many people judged me by how I looked on the outside – my personal front, while the effects of cancer are often on the inside. Inside, my body had been bombarded by radiation, giving me diarrhoea. OK at first, but it steadily got worse. The chemo made my nose and mouth bleed, and gave me mouth ulcers. I had regular throat convulsions in the night for up to five hours. My feet and hands were burning, and sensitive to the cold (neuropathy). My skin was hyper-sensitive to the sun. Part of my colon has been removed, and I have an ileostomy bag instead. 

MY TREATMENT

I had radiotherapy with adjuvant chemotherapy for 6 weeks. 

I then had surgery to remove the part of my bowel where the tumour was sited, plus the two lymph nodes attached. 

I lost the tumour and gained an ileostomy, which means I have a bag on my belly for my waste matter. 

After a month’s rest and recovery, I began 6 months of chemotherapy, which finished in September 2017. 

I am now waiting for the final surgery to reverse the ileostomy.

ROUND #1 {RADIOTHERAPY}
You get tattooed before it all starts. Just three pricks – one on my abdomen, and one on each hip. This is to line you up for the machine. I also had to drink a jug of water each morning, so my bowel was the same shape each time. 

I had appointments 5 days a week before work, so I could carry on as normal – or as close as it gets. I took capecitabine tablets every day. They’re so toxic I had to wear gloves before popping them in my mouth. The first time, I took 30 minutes to get my head around swallowing them. Not appealing.

The capecitabine gave my face and upper body a skin peel. A lot of sun damage scabbed over and sloughed off over the 6 weeks.

I would cycle to St Thomas’s, cycle to work, then cycle home – about 18 miles. I saw a few cyclists in the treatment area.

There were no major effects to begin with, but serious runs every weekend for the latter stages. That, and tiredness.

ROUND #2 {SURGERY}
I had my tumour surgically removed after my radiotherapy treatment. You’re fast-tracked through the treatment, so there’s not much time to process at each stage. As Jeremy Hunt is Minister for Health, I named my tumour after him. Jeremy has been cut from my body and donated to science. The surgery was meant to be keyhole (or laparoscopic), but I ended up with a sweeping scar (below my bikini line).

I have an ileostomy. When the surgeon removed the damaged part of my colon, he had to leave it to heal for a while. The ileostomy bypasses the affected area. 

It took 8 days before I could eat again, and 10 days before I was discharged. Hospital food isn’t the most appealing, but the first taste of dry white bread and marmalade was sensational. My digestion has changed hugely since – to begin with, I couldn’t tolerate high fibre. I avoid rich food even now. 

Life with a bag is OK. I have to empty it regularly, sometimes 8 or 10 times a day. It leaves a bulge on my waistline, and it sometimes peeks out when it’s curious. I’ve had to change my diet since the start of treatment. I also have to eat more, because I don’t absorb everything at present.

I have to protect the stoma, which is the little stump of colon that sticks out, from being hurt from things like when I squat while gardening. I haven’t done much, so it’s not been a major problem. The seatbelt in the car can irritate the stoma, so I protect it with a jumper.

ROUND #3 {CHEMOTHERAPY}
I had the Folfox cocktail through a PICC line. I would start with blood tests in the Welcome Village (yes, really), then move up to Chemo. Once admitted, I’d be plugged in and fed my steroids and assorted meds. Then the skull and crossbones would arrive on a sleeve to cover the poison. And the dripfeed would begin. All told, around four hours. 

To finish, I’d be hooked up to my chemo bottle, to feed into my body over the next 48 hours. In tribute to Philip Pullman, I called it my chemo daemon, as it never left my side. I had to bathe and sleep with it attached to me. No showers because of the PICC line. Finally, I’d return to a ward at the hospital as an outpatient, to be unplugged. 

You spend most of your day taking on your chemo. In the early rounds, you’re more lively, so you need to have something to keep you occupied. A spare friend or family member, book or magazine, tablet or phone will do the trick. Be warned, you’ll end up waiting, sometimes for hours, for consultations and treatment. Staff are stretched and resources are scarce.

Later on, you might fancy a snooze. This is when friends and family need to know it’s OK to leave you to rest. Really, it is.

Some people dress up for chemo, some dress in loose and baggy clothes. I wore short-sleeved tops so the nurses could get to my PICC line. Later on, some wear gloves, hats and scarves because you become hypersensitive to the cold. I ended up wearing just one pair of forgiving trainers, because of the side-effects.

You have your weight and bloods tested before each cycle. You need to be prepared to be refused treatment at some point – your bloods may drop below the minimum threshold.

Many of us struggle at some point during their chemo cycle. I suffered after cycle #5: I couldn’t get my temperature under control, phoned the helpline, and was admitted to A and E for 5 hours. It’s a shock when it happens to you – I felt really vulnerable for the first time. After my dip, my Folfox dose was slightly reduced for the remainder of my treatment.

To begin with, chemotherapy didn’t seem so bad. I took steroids for 4 days in each cycle, and at first I felt pretty strong – I managed to make a shelving system after my first cycle. But as soon as I went without the steroids, it felt like falling off a cliff. And the effects of your chemo are cumulative.

To start with, you may feel OK, apart from a few minor side-effects. Once you’ve had a few cycles of chemo, you probably won’t feel like doing exercise. Really not feel like it. But it’s important to try. I walked to the shops most days, or walked very slowly around the park with a friend and Mojo the dog. Both were very forgiving. 

FEET
My feet started to feel uncomfortable, like pins and needles. Later on, I felt like I had electric shocks passing through them. They became numb, so it was hard to avoid tripping on the ground. Plus, they became really sensitive to the cold. It took a while to build my tolerance up again.

EYES
Chemo makes some people’s eyes dry.  I ended up with streaming eyes.

NOSE
I had nose bleeds early on. I also got thick scabs inside my nostrils for a few months.

MOUTH
I had mouth ulcers for quite a while. At first, they weren’t too bad, but eventually  they became intensely painful for several days in each cycle. 

TASTE
At the worst points of each cycle, I couldn’t taste the food in my mouth, and it felt like chewing on grit. I also lost the taste for chocolate and many other fine things. Wine gums and fizzy shapes became a big part of my five a day.

SKIN
My skin became really dry, and the skin on my fingertips and toes cracked. 

BOWELS
I got diarrhoea quite a lot. Early on, I didn’t need to take any medication for this. But the runs crept up on me, and at times I wondered what I could eat that wouldn’t set me off. The truth is, pretty much anything would. So the moral of that story is, just take the meds, and keep eating if you can.

HAIR
Some of my hair fell out, especially in intimate places.

The steroids are designed to help you through the worst of the side-effects. They taste horrible, though. In the worst of the chemo, most normal food and drink tastes bad. The good news is that there is an answer at the local confectioners: fruity chews, fizzy sweets, fruit shapes, wine gums, snakes and pigs all worked for me.

Each fortnight throughout the chemo treatment you’ll see a change. For the first few days, You # 1 will have to deal with the immediate side-effects. Later, You #2 will have to get used to doing very little: eating, sleeping and minor exercise, mostly. Over the chemo period, you’ll be able to do less and less.

POST-TREATMENT
After treatment is over, there are regular checks (biopsies, scans and scopes). The best result you can hope for is being in remission. 

After that? The future is uncertain.

I’ve written this as a way of sharing and remembering. Sharing with those that know me, and with others going through something similar. Remembering, because it’s hard to keep track of all the changes that have taken place, and difficult to get your head round the fact that you really have been through every procedure, and it wasn’t just a bad dream. 

And a reminder, if one is needed, that we can’t expect life just to carry on as normal. There will be surprises, and not all of them welcome.