I worked four hours from home this morning and then I made myself lunch.
I watched some TV, and now here I am, sitting on my couch, tapping away on my laptop. Last night in bed, I laid on my front for a little while.
That may all sound boring and mundane and like no way to start a compelling blog post. But four months ago I wasn’t working, not even a little from home. I couldn’t make myself lunch or even get myself a drink without it being an exhausting mission.
Every move required careful thought and a lot of self-motivation before I could move.
I wasn’t well enough to be left alone in my own home to look after myself. I’m usually on my laptop all the time, but writing or surfing the web or even replying to my friends’ messages was too tiring. Sitting on my couch wasn’t comfortable – I had to sit in the armchair, with the seat reclined and the footrest adjusted just so. I practically tied myself in knots getting into a position I could nap in. A walk around the block was practically unthinkable. And don’t even get me started on sitting up to eat, or sleeping in my own bed.
To say I’m feeling grateful these days would be an understatement.
When I received not one but two cancer diagnoses in 2018, I thought I knew what to expect. I’d had cancer before, in 2010 when I was 22. A visit to A&E, an operation to have a polyp removed, and a colonoscopy all eventually led me to my bowel cancer diagnosis in May of that year. I had my bowel removed in July, and had a colostomy bag for five months until my internal pouch was formed in January 2011. After my bowel removal, I was away from my part-time job in a local supermarket for three months while I recuperated. I remember those early days each felt the same. My mum helping me change my colostomy bag in the morning, going downstairs, watching a little television, maybe venturing out for a very short walk around the shops, then back to bed in the evening to repeat the whole thing again tomorrow.
My world was suddenly very small.
When I did have the colostomy reversed and we packed up all of my unused bags to take them back to the hospital, the whole episode already felt like it had happened about twenty years ago. It was all over.
But as many cancer survivors would tell you, it wasn’t over, really.
It never is. Between 2010 and 2018 I had health anxiety, fear of recurrence, and after a lot of deliberation, a few sessions with a counsellor. I had annual check-ups with my consultant to make sure the cancer hadn’t come back. We’d meet every October to see how things were going and he’d send me off for a CT scan, a flexible sigmoidoscopy (a camera to check on my internal pouch, like a colonoscopy), and a gastroscopy (a camera down the throat into the stomach). Every appointment filled me with fear that they would find something. I also had a scare when a routine smear test found some abnormal cells that had to be removed. And then in 2018 my fears finally came true.
Once again in May (it must be the month for it), I was diagnosed with duodenal cancer after my annual gastroscopy.
The duodenum is a small part of the small bowel, and it’s quite
I was in disbelief that all of this was happening at once.
That summer consisted of a series of tests and appointments, and a lot of waiting around while the medical professionals discussed me and decided what to do. I became quite famous in their meetings because I was a rare case. My partner and I decided that out of all our options, the best thing to do was for me to have my womb and ovaries removed – despite us not yet having any children. The plan was eventually formed for me to have this operation in September, and after I’d healed from that I would have a Whipple procedure in November. The Whipple operation involved removing the duodenum, the head of the pancreas (which is about a third of it), the gallbladder and the bile duct – if I remember correctly. I can’t keep track of which organs I still have and which I don’t.
I was in hospital for about three days having my hysterectomy, and recovery was difficult.
Many organs in that area are quite close together, so I had a few digestive problems to add to the general pain in my abdomen. I was tired of being sick and having wind problems and acid reflux. But that was easy compared to recovering from the Whipple. I was in
My appetite was all over the place – I could hardly eat anything in a single sitting, then I’d be hungry again soon after I’d finished.
And then there was a phase when I wanted to eat everything in sight.
I was simultaneously worried about putting too much weight on, or not putting weight back on because my body wasn’t absorbing nutrients properly, or getting diabetes because I’d had part of my pancreas removed. Add to that, my wound from the Whipple became infected and I had to go on antibiotics. It felt like there was no light at the end of the tunnel. I was so worried that I would never go back to normal, that I would never feel okay again, that I wouldn’t be able to do all the things I did before.
Yet here I am four months later – tapping away on my laptop, in my own usual seat, eating as much as I want, phasing back into work, driving myself around, walking to the pub, drinking, and spending time with friends as usual.
And although I’ve been very unlucky, I feel incredibly lucky.
There are so many people who have problems after Whipple – diabetes, digestive problems, malnutrition, and various other things that require regular medication. I don’t take anything except some meds for my bones due to the effects of the menopause – which have also been minimal so far.
I could have been in a much worse state than I am now,
I am definitely one of the lucky ones. I can still hurt my stomach by
Things have gotten better when just a few months ago I was afraid they never would.
It didn’t happen overnight, and it wasn’t a linear progression – there were ups and downs and there still will be. But there is a light at the end of the cancer tunnel. I know because I am here, standing underneath it. It is warm, and it feels good. I am going to try to keep myself here for as long as possible. For as long as I can I’m going to try to keep hold of this positive attitude.
As Aerosmith once said:
Remember: the light at the end of the tunnel may be you”.
Sam Rose is a poet, writer, editor and three times cancer survivor. She lives in England with her partner and in her spare time she enjoys listening to music and eating too much chocolate.