Roger (38) & Charlotte (36) White from Llanelli
In early 2016, I spotted that I was more gassy than usual, had stomach problems and was bloated. It doesn’t help that as I work in IT, I sit down for a lot of the day. I tried to change my lifestyle and diet but eventually went to the GP.
Fast forward to April / May 2017, I noticed blood in my stools and when I went running I could hardly hold my bowels. Again I tried to change my lifestyle habits, but this can’t be done overnight, so I waited two - three months before going to see the GP. It was only when I was out running on two occasions that I couldn’t hold on to my bowels that I went to see my GP.
I saw a different GP from the one I saw a year earlier. They thought it was haemorrhoids and so did an examination but couldn’t see any evidence of piles, but they still prescribed me a cream for haemorrhoids. I refused it because I didn’t think my symptoms would be treated with a cream.
By the end of May my symptoms had not disappeared - I was more tired than usual and had to stop running as I was unable to trust my bowels, so I decided to go back to the GP. This GP referred me to hospital but it wasn’t until mid-July that I saw a consultant. My GP and the consultants all dismissed bowel cancer because I was too young. They put me on the waiting list for a colonoscopy, which took place on 9 August.
During the colonoscopy it was clear that there was a growth of some kind and they took biopsies to further investigate. Even though there was no confirmed diagnosis, I was immediately put into what could be said as the 'cancer bubble!' I was given appointments straight away for further tests. Everything was all a blur as it all happened so quick. Upon telling my wife, she immediately thought it must be cancer. However, I look at things differently and am more optimistic so believed it could be something else.
Following the colonoscopy, I had an MRI and CT scan. The scans revealed that the tumour was cancerous, was 6cm long and the treatment plan was to have an operation to remove the tumour and have a temporary ileostomy. At this point, I still didn’t know the stage of the cancer.
To me, having a stoma was harder to come to terms with than being told I had cancer.
I really didn’t like the idea of having a stoma as my aim in life was not to be a burden on others. Ultimately by being diagnosed with cancer and having a stoma, our lives could be hindered. To me, having a stoma was harder to come to terms with than being told I had cancer.
A few days later, I was back in the hospital for further examinations. Initially I was told that the operation would just remove the tumour but now I was being told that I would have my whole colon removed. This was a massive shock to me.
I wanted a second opinion and was referred to a senior consultant which led to a different approach. In the end they removed the tumour which was near my rectum and this resulted in a temporary ileostomy. It was ten days after my operation that I found out I was diagnosed at stage three cancer. It was found to be in one out of thirty-three of my lymph nodes and was in my blood vessels, which meant that chemotherapy was inevitable. I also found out that the tumour was 4cm long not 6cm.
Chemotherapy options were discussed along with pros and cons of each. We were sent home with information for us to decide which option to elect for. As we are a busy family, with four children, two dogs and two cats, I was not keen to have a picc line fitted so I elected for IV and tablet (Zelox) form. This meant six cycles, one every three weeks.
I am lucky to be able to have my chemo at home. The side effects so far (being only on cycle two) and are tracking/burning of the veins, nausea, increased sensitivity to the cold and shallow breathing on colder days.
Since 31 August, when I was diagnosed, our children have been kept informed of everything. At first it appeared to hit the older two more so then the younger two. Throughout this whole situation, the aim was to limit the impact to my family and more so, to the kids. This meant liaising with the children’s schools to ensure that adequate support was available.
Throughout this situation I have recorded and uploaded videos to social media to help others and to raise awareness. I also use my videos to cope with my bowel cancer diagnosis.
It was only when I was out running on two occasions that I couldn’t hold on to my bowels that I went to see my GP.
I knew Roger was unwell as he has been awake during the early hours with stomach problems, rushing to the toilet and unable to complete a full day of work. Roger had spent a few months (of what I knew) keeping this to himself, being a 'typical male' I suppose. Roger used to be in the military, so we’re a family that like routine and our usual activities like going to the cinema, taking the boys to football and going out would soon be impacted more so than previously.
The colonoscopy result came as a surprise to me, but then I knew it was cancer. Roger on the other hand looked as this differently, having an optimistic view. We spent many hours discussing, arguing and making up; my emotions were all over the place.
On Roger’s arrival from the hospital on 31 August I knew from Roger’s dominie that the result was not good. He lead me into the kitchen where he told me. I cried with sorrow and anger and asked: “Why is this happening to me, to us? What has Roger done to deserve this? What about the kids?”. We decided to tell the kids immediately, whom for some reason appeared to respond to my call without any additional requests. The eldest two took the news like I did - immediately broke down with tears whilst the younger two just cuddled their siblings, but the next few weeks with returning to school a few melt downs occurred. Both schools were informed on their return from the holidays, with some support being provided especially as the eldest has Asperger's and is going through Sixth Form, doing her A-Levels.
I feel like a single mum at times, along with being a carer.
During this whole journey most people would ask how Roger is. Whilst I understand Roger is the one who has/had the cancer, what about the person/s who are providing immediate care? I can probably count on one hand the amount times I have been asked: “How are you Charlotte? How are the kids?”
I feel like a single mum at times, along with being a carer. When Roger was in hospital, I had to get the kids to school, take them to after school activities, make dinner, get them to sleep – it was so hard and by the weekend I was physically and emotionally exhausted and I was near breaking point.
We do have close friends that have had a cancer diagnosis; I often talk to them as they understand and I also have a blog to write about my thoughts and experiences. The blog can be quite open and honest but I believe this is the best, as so many hide their cancer journey. On the initial diagnosis, we contacted Macmillan and some other support groups. Overall, I am disappointed with their support and maybe this is down to us not knowing what we needed help with - but then why would we know what help we need? We are a family who get on with things and don’t ask for help unless we really, really have to.
I started a blog a few years ago about being a mum whilst Roger was in the Army and we often followed him overseas. Whilst this sounds good at a glance, my life changed to becoming a 'stay at home mum' and my career and skill set changed too. In 2012, Roger left the Army and we settled in west Wales. This allowed me to start looking for work but due to having taken time off to give birth, being a mum and living abroad, finding a job became difficult. I then started a blog to help others like me but now it’s turned into one about cancer as well. The blog helps as I write down my feelings, some family and friends don’t like this honesty and they also don’t like Roger’s YouTube videos, but I think it’s really important to share our experience to help raise awareness and help others. Cancer shouldn’t be a secret.
I do get really angry sometimes, but all I want to do is take the cancer away from Roger. It's not nice seeing someone you love going through this journey. The chemo treatment is probably the hardest, knowing what it does to your body and how Roger reacts to it, whilst trying to reassure the children their dad is getting better. Strangely enough, this is making us stronger as a family, as individuals and as husband and wife. I do talk to a few others that have been through similar things as well as my mum and sister. I’ve cried loads, especially in the beginning as I felt I wasn’t in control; this is changing and we are planning for the future.
I can see Roger getting better, he’s getting closer to the Roger I knew before cancer.
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
Together we can stop bowel cancer
Throughout this whole situation the impact to the family and more so the kids aim is not to be impacted.