Sophie Umhofer, Warwickshire

I was diagnosed with stage 4 bowel cancer in June 2018, when I was just 36.

I didn’t have any of the typical bowel cancer symptoms. Around August 2017, I started vomiting for no apparent reason which persisted every few days for a few months before any bowel issues started. After a couple of weeks, I went to my GP and we discovered that I was severely anaemic. Although I felt tired, I put this down to my non-sleeping two year old as well as having a five year old.

I started getting bouts of diarrhoea every now and then along with stomach pain in January, but in February I had a bad spell when we were in France. I was really gassy and couldn’t eat properly. I had to go to the toilet urgently and when I looked at my poo, it looked red, not bloody or bright red, just redder than normal.

I knew things weren’t normal and went to see my doctor straight away. I have fortunately got a fantastic GP who wanted to get to the bottom of what was wrong. She was very willing to see me every week and to try another option or test. In the end I was referred to an inflammatory bowel disease clinic but I didn’t see them until April. I then had to wait for a colonoscopy and an MRI scan – this wasn’t until June. I thought they were going to diagnose me with Crohn’s disease, but the tumour in my bowel was so large they couldn’t pass the camera through it.

But the doctor just told me I had a lesion which was impassable. When I got home I Googled it and it came up with bowel cancer. I dismissed that instantly – it couldn’t possibly be that.

A few days later I had an MRI scan and the following day I got a call saying I needed a CT scan before meeting with the doctor on Thursday. On Tuesday and Wednesday I was throwing up constantly and couldn’t keep anything down so quite honestly, I didn’t have much time to really think about it. In fact the vomiting led me to believe it was definitely Crohn’s disease.

At the doctor’s meeting on Thursday we were brought into a room at the end of the corridor, which I remember thinking for a split second it was odd as I’d seen him in a side room before. They hadn’t told me to bring my husband, but fortunately because I’d been so ill for the past couple of days I asked him to take the day off work to come and help me.

The world literally went quiet when the doctor hit us with the news. He went straight in for it too, no proper warning or for us to get settled as this obviously wasn’t his area of knowledge. My husband was sitting behind me and I couldn’t bring myself to look at him, I knew he was crying and felt if I didn’t look at him, this wouldn’t be real.

I was in proper shock, I couldn’t really say anything and felt numb. We were told the multi-disciplinary team were meeting on Monday afternoon about me so I would hear the day after about what will happen next. We had a long wait of not really knowing anything.

I figured out the stage of my cancer myself, as the doctor didn't even tell me that.

The nurse escorted us out the back entrance, and then it clicked why we were in this end room, so we could have a private exit. Me and my husband were photographing a wedding the next day, so we decided to try and forget about it until after that was over, which was pretty impossible as I was in a lot of pain still.

Ten days later I was having surgery (right hemicolectomy).

I was terrified I wouldn’t wake up from the surgery, so going in I was an absolute nervous wreck and had a panic attack while they were doing the spinal tap. But all was well and it was successful.

Going into it, the surgeon wasn’t sure what he was going to find or what he would be able to do. They marked me up ready for a stoma, but amazingly I woke up without one! I was told that my tumour was very messy, it had wrapped itself around blood vessels and was near my spine, so he couldn’t get all of it. But he did remove the main tumour, resected my bowel, and had to remove some of my stomach as it had adhered to that. He got rid of as much as he could of the abdominal spread.

Recovery was fairly straight forward, they tried to get me out of bed the next day and by the third day, up and walking. I didn’t want to at all as I was weak, in a lot of pain, and tubes sticking out of me but I knew I had to go recover.

I begged the doctor to remove the nasogastric (ng) tube too as it was scratching my throat and I couldn’t drink because of it. I was out of hospital a week later. But was back in again a week later as I’d got an infection, which was cleared up right away again thankfully.

A month after surgery, I had a port fitted and then started chemotherapy.

I could write a book about my side effects of chemotherapy. It was awful. I was constantly vomiting and had diarrhoea, had unreal fatigue and would sleep 12-16 hours a day. I got neuropathy in my hands and throat, which was really painful and debilitating as it was winter. My hair thinned but I didn’t go bald, I lost a lot of weight, I walked like an 80 year old as I was so weak and got stiff muscles in the winter air, I lost my taste buds completely by the end and my appetite disappeared. I lost muscle sensation in my bladder too, so ended up a bit incontinent.

Chemo brain was ridiculous, to the point where I would forget what I was saying mid-sentence, I ended up not talking much because I didn’t see the point. I still have chemo brain now to be honest, but it's not as bad as it was. My heart weakened a lot too, my resting heart rate dropped dramatically and I would often panic how slow it was when I was sleeping (32 was the lowest I saw). I also had weird muscle spasms in my face where I felt like I was gurning, or my hands would cramp up and I couldn’t use my fingers.

After eight cycles of FOLFOXIRI, it was clear that it wasn’t effective.

I have BRAF and MSI, which meant that I could be referred to have immunotherapy on compassionate use. I started with Nivolumab and Ipilimumab for four cucles, and then down to a single dose of Nivolumab. I have been on that since March 2019 and have recently found out that I am able to continue the treatment indefinitely.

With immunotherapy the main concern is auto immune diseases developing. When I started the treatment I was still had absolutely no appetite from the chemo. I would be nauseous and have fatigue with the first immuno cycles.

As I had an intense double dose for the first four cycles. I had a 40% chance of getting one or more auto immune disease and after the fourth cycle, I ended up in hospital with an adrenal crisis. I had developed adrenal insufficiency, or Addison’s disease. It is very rare and few people have heard of it. I no longer produce cortisol and that has been my biggest battle this past year, adjusting to this new body. I take steroids throughout the day to maintain it. But the upside of this is that it helps with the nausea and fatigue so I really don’t get much in the way of side effects from the immunotherapy directly now!

I still get fatigue the day or two after a cycle, but I manage that by telling myself that it’s my rest day and I’m allowed to do nothing. The comparison between chemo and immunotherapy side effects for me is like night and day, and I actually can have a life on immunotherapy thankfully.

Since my diagnosis, all aspects of my life has changed. I was told I had two to three years to live, IF the chemo worked. If not, only months as BRAF is so aggressive.

When I was on chemo I felt like such a useless mum, I would push myself so hard to try and do the things I could before, as my kids were so young and didn’t understand, but eventually, I just wasn’t able to. Reluctantly, I asked for help and fortunately my sister in law stepped up and was an absolute diamond. As my husband was self-employed, he couldn’t really afford to take any time off and had a long commute so wasn’t really home much. So she would come by in the morning on my bad days, give the kids breakfast and take them to school so I could sleep. When I was with the kids alone, I would just try and be with them, even if it meant laying on the settee while they watched tv. Again, I felt like I was failing as I wasn’t doing fun stuff, cooking them healthy meals or even able to do homework with them. I was just existing, and I also didn’t want them to see how ill I was. One time my daughter caught me being sick in the toilet and she rubbed my back to help me feel better. That for me was a major low, she shouldn’t be doing that at six years old.

The hardest thing for me has been dealing with the future. Any reference to my children’s future is a bit of a stab in the heart for me, as I probably won’t be there for it. I’ve had it in the back of my brain this whole time that I need to write them letters, make videos and do things in preparation for their future. I feel it would be irresponsible of me not to.

I couldn’t bring myself to do it though until lockdown happened this year. That's when I felt motivated and healthy enough, to be able to do it. I’ve started creating a box of things to leave for them, I have made videos and even did a life story voice recording with the local hospice for them to have. I have all their birthday cards done up until the age of 18. It has been really tough to think about their futures and what to write in letters for them. To imagine what they will be like at certain ages. But I do feel a weight off my shoulders now I have done it and to know that if the worst does happen, they may know a little bit more about me and won’t forget me.

Since being on immunotherapy, thankfully my side effects haven’t affected my ability to look after them as much. Plus my scans have been stable for the past year, so it’s giving me a bit more hope that I have longer than my initial prognosis. Also the bonus is that I am only at the hospital for a couple of hours at a time now for treatment, so normally can get it done while they are in school and am able to pick them up. Even if I can't and need to get someone to watch the kids for me now, I am not leaving them for long. I definitely get the mum guilt of having someone else looking after my children though, so try my best to get it in during school hours and make it through the evening to bed time and crash.

One thing I have thought about is how intensely hard it is to be a mum and coping with cancer and treatment, mentally and physically. I felt such pain for my children and their future, like actual anguish.

It's so hard to rest when you have little people depending on you. You don’t get to lay about all day and rest, when the kids need you to get up, or feeding or entertaining, you have to do it. But then if I didn’t have them, would I have had the motivation to stay alive? Maybe I would have felt sorry for myself and ended up getting really down about things and moped about all day. All I know is, they are the reason I am trying everything I can to stay alive. I am determined to be here as long as I possibly can for them.

I live life day to day now, not thinking too far into the future and that is a really hard adjustment. I was also planning to go back to work last year when my son started school, but cancer messed up that too as it was hard to find anything to work around my appointments and schools.

My whole life seems to be about cancer now, whether it’s what I’m eating or doing, or what I’m thinking about or planning life around. But I will say that it has changed me in a better way too, it’s given me perspective on what’s important, it’s made me go out and do things I wouldn’t have done before and made appreciate things I took for granted before.

Follow Sophie on Instagram: instagram.com/unbowelievable

But we’re leading change

Never Too Young is leading change for younger bowel cancer patients. Every year 2,500 younger people are diagnosed with bowel cancer in the UK. Our research has shown that younger bowel cancer patients have a very different experience of diagnosis, treatment and care.

What are we calling for?

• Improved clinical guidance and practice on bowel cancer in younger people

• Improved identification of people with genetic conditions and access to surveillance screening

• Improved information for younger people on bowel cancer symptoms