April is bowel cancer awareness month. Young, old, male or female – it can affect us all. Most people are diagnosed with bowel cancer when they are over 50 years old. But more than 2400 people under 50 are diagnosed in the UK per year.
I am one of them.
I was 37 when I was diagnosed. And my story is like many others; I didn’t show the warning signs of bowel cancer and I was treated for other problems first.
I was diagnosed with stage 3/4 bowel cancer in May 2016. I have three beautiful boys and work full time as a Teaching assistant.
I didn’t feel unwell, but looking back I can see when some of the symptoms started showing. I had suffered with extreme tiredness the previous year, but I had put that down to working, ruining a household and being a mother to three very energetic boys ( the youngest being 4). To be honest, I can’t remember a time when I haven’t completely felt tired. I didn’t show any signs in different bowel habits nor did I have a loss of blood from my bowel.
I was struggling in my job and I was having problems in my personal life. Something that I feel had a massive impact on my health. I had previously suffered from piles from when I first gave birth to my eldest boy, who is now 16. It was about November 2015 – 5 months before my diagnosis – that I first felt a lump on my anus. A small nodule that really didn’t bother me, there was no pain but it bled slightly after motions and was only a small amount – nothing that bothered me too much. I treated myself with cream, which seemed to help. The tiredness didn’t ease though and I cried most days. I was struggling to get through the day without losing energy.
I didn’t lose weight but do feel that I actually gained lbs. I was walking daily and doing regular exercise sessions at home, nothing that wasn’t too strenuous. But, to be fair, I have never really needed to do much. Running around after three boys, going from one club to another and working on my feet every day, was enough to keep me trim. I could have been fitter but I was happy with my self. I had noticed that my thighs had put on a little weight so I began doing some exercises at home and after a few weeks I noticed that there wasn’t any change.
By Christmas 2015, I just didn’t feel myself. I knew something was wrong with my health.
I spoke to my sister who told me to get an appointment at the doctors. I mentioned to her about the small lump that I had found and that apart from feeling tired I had no other symptoms.
I tried for weeks to get an appointment. It’s not easy where I live. I was calling at 8 in the morning but having to hold on in the cold queue for half hour at a time, eventually giving up as I didn’t seem to be moving on in the queue and I had to start work.
When I finally got an appointment, I changed it over for my eldest to take as he was suffering with sebaceous cysts on his neck. So it was back to phoning in the mornings and holding in the queue to be told that there were no more bookable appointments available.
Eventually I got an appointment and at my first appointment, the doctor prescribed treatment for piles. I was to try the cream for a few weeks and then make another appointment for an update on the problem. I carried on with my life, a little worried as it felt like the lump was getting bigger.
Lo and behold at my next appointment the doctor confirmed that, she too, thought that it was getting bigger and referred me to the hospital.
At this point, deep down inside , I knew! I knew that this wasn’t just piles I was dealing with.
I waited 2 weeks for my referral to the hospital. Those 2 weeks were spent googling symptoms. Something, I would not advise anybody to do(I have had many sleepless nights because of this). I couldn’t sleep or think straight but i just kept telling everyone that I was ok.
On 21st April I attended the hospital and the consultant wasn’t happy with what he felt so asked me to stay the night for an emergency biopsy the next day. I didn’t want to stay, I wanted to be at home with my family. So, I promised that I would be back the next day. I was booked in for 7am the next day but I waited around most of the day in a small poky room waiting to be called. I was trying to feel positive about it all, telling family and friends that the doctors thought it was just an abscess and that they would probably just drain it away. Maybe I was trying to convince myself that that was the case. I kept pushing the thought of cancer to the back of my mind and tried to be positive about it all. Even when after surgery and the surgeon came to visit me at the hospital bed and introduced me to a colorectal nurse I still tried to be optimistic about it all; telling family that it was probably offered to everyone.
I sat and stared at the business card the nurse gave me for days after. The surgeon and nurse had told me that I would hear within 2 weeks about the results but in the meantime they wanted me to have a CT and MRI scan.
It was at this point that my Mum started to become a little worried and wanted to attend the appointments with me.
Up until this point, I still had no symptoms- even the spotting had stopped. But, I could still feel the lump. It wasn’t a hard lump, I couldn’t move it and it wasn’t painful.
But, I was so tired all of the time. Exhausted from everything.
I remember coming home from work one day and the house phone ringing. We never normally get house calls so i had that feeling that is was going to be the hospital. My nurse invited me along for an appointment the following day. I recall her asking if I was going to be attending alone or with family and thinking ‘why would she ask that?’
May 11th was the day that shook my life upside down. It was the start of a very rocky battle with my health and emotions. As I sat in the hospital room, in the middle of my Mum and partner, I looked over at the surgeon and from the look of his face we knew it was good news. I mean, I wouldn’t be sitting in a room with a surgeon and a nurse if it was going to be good news, would I!
As the surgeon began to tell me that it was bowel cancer, I felt my hand that my Mum was holding get tight. My Mum was trying not to cry, trying to take in what she had just heard about her daughter. I told her to go and wait outside with my sister. I wanted to protect her from hearing all of the details of my diagnosis. Sat there, hand in hand with my partner, we listened and asked questions about what was going to happen next. I didn’t feel anything. I didn’t cry. I now know that I was in shock. I was expecting those words but I never knew how I would deal with it.
I had to remain calm, there was so much information to gather I am just glad that my partner was there to take it all in too. He was my rock in that room. He didn’t cry. He just held my hand and asked the questions.
Driving home from the hospital, I remember being numb and still not able to cry. My first thought was ‘How am I going to tell my children?’
Back home we sat down in the living room and discussed between us all about what how I was feeling. It was soon time for the children to come home from school.
It wasn’t until that evening that everything began to sink in. I didn’t deal with it very well.
I was devastated, numb, afraid, angry, guilty, overwhelmed, sad and in shock. I had boarded the roller coaster and was going on a journey. A journey of ups and downs. A journey that was going so fast that I just wanted to get off. Feelings of fear and uncertainty setting in.
I felt that I had to be strong and protect my family but I struggled with holding it in. I wasn’t holding up very well. I was heartbroken.
There were days when all I did was cry and days where I felt no emotion at all. One minute I could be positive and the next depressed. I couldn’t sleep at night as I suddenly feared not waking the next day.
That one word changed my life in an instance.
I began to resent myself and felt guilty of taking a Mum away from my boys. I pushed them away from me. Stupidly thinking that if they spent less time away from me they would get used to not having me around. Silly eh! I hate myself for doing this but at the time I thought I was doing good. I felt like I was a bad person as I must have done something wrong to cause the cancer to grow and fester in my body.
I turned to concentrating on something that I could control – eating a healthy diet. Researching particular foods that would help my immune system become stronger, nutrients that the body needed to recover from the grueling treatment that I was about to forego.
Exactly three weeks after my diagnosis my treatment began. But before it did I had to have a handful of more tests to check that the cancer hadn’t spread to other parts in my body. I was lucky, everything came back fine. I met my oncologist and the radiotherapy team and was tattooed up ready for the radio to start.
My cancer was a rare form. Mucinous adenocarcinoma – often diagnosed at the late stage and associated with a long-standing anal fistula. I was the first patient in the hospital to have been diagnosed with this type of cancer.
My oncologist prescribed a concoction of chemo tablets to take for 5 and a half weeks and radiotherapy for 28 days – with a rest at weekends. It was tiring. I went for my radio sessions in the morning and spent the rest of the day sleeping. The treatment was knocking me out, draining my energy. The last week of my treatment was the worst. I could barely walk. The radiotherapy had burnt my skin to the point that it was red, blistered and bled. I laid all day and night flat on the bed.
Treatment ended on 8th July. I had the summer to spend with my family and to get strong again before I was booked into having an APR – Abdomino Perineal Resection. As the tumour was on the Sphincter muscle that controlled the bowel habit it had to fully removed. The radiotherapy had also burnt a hole in the sphincter muscle causing me to develop an abscess and resulted me in staying in hospital for 8 days to treat the infection.
As part of this surgery I needed to have a colostomy, which is an opening on my tummy called a stoma where the end of my bowel is stitched to the opening. I wear a bag over the stoma to collect any faeces.
I had many complications with my treatment, even more with the surgery and had to endure a further major operation from the result of the first operation . No one ever warned me of what was to come with my treatment, I didn’t get any help from the hospital or nurses.
Cancer is a lonely place and makes you feel secluded from the world around you. Your life seems to be on a go slow. Always waiting for the next appointment, living with depression and anxiety. You rely on the support from around you to get through it. A good support is the key to positivity.
I relied on the internet to help me. Googling answers to what I didn’t receive from the hospital. There isn’t much information on my cancer on the internet and I am still learning lots about it. My nurse even asked me if I could support another lady who was diagnosed not long after me with the same cancer. We have become good friends and supported each other through our journeys. We could talk about our fears and emotions and understood each other.
I have recently heard of many more women being diagnosed with bowel cancer. Bowel cancer, any cancer is definitely not pink. It is not fluffy nor fashionable. You can’t walk all over cancer. You can’t fight it.
Cancer is real. It’s hard. It’s lonely.
Having cancer has taught me to look after myself, to become healthier and be more positive about life. I am thankful for every day that I get to spend it with my family. I look back on my journey as a life lesson. I am grateful for what I have now and cherish each day.
I am lucky to have this blog as a platform to share with you all about my cancer experience. But what we really need is:
- 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
- Encourage good bowel health
So to everyone reading this, If you have a change in your bowel habits or are feeling exhausted for no apparent reason please seek further investigation.