Bowel Cancer – Never Too Young #thisisbowelcancer

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.

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My Personal Experience of Radiotherapy

Back in 2016 I was diagnosed with a rare form of Bowel Cancer, there were only 2 cases of it at the hospital where I was under. My Oncologist explained all the details about the diagnosis but I think I found out more by doing my own research. As a part of my treatment I was offered chemo-radiation, this is a treatment that means I was to have radiotherapy alongside taking chemotherapy tablets.

Radiotherapy is the use of controlled, high – energy radiation. It is offered alongside chemotherapy as it makes the cancerous cells more sensitive to the radiation.

I was told that I would have radiotherapy first to try to shrink the tumour before surgery, as this would make it easier for the surgeon to remove it. My tumor measured at 3 cms and was close to my rectum, sitting on the sphincter muscle – which controlled the movement of the bowel. The tumor was very close to the skin, so close that it could be felt from the outside.

From receiving my diagnosis til the first day of my radiotherapy it took two weeks. Those two weeks were the longest and slowest ever. Just think, You have been told that you have cancer and then you have to wait a few weeks until you can start you r treatment. All I kept thinking was, that it was more time for it to grow and worsen my diagnosis. Within that time I had a colonoscopy, an ultra sound on the local lymph and I had to be measured up to the radiotherapy machine.

Meeting Linac 

A Linear accelerator machine used to treat all parts of the body by delivering high energy beams/electrons to the region of the tumour. It has several built-in safety measures to ensure that it does not deliver a higher dose and is routinely checked by a medical physicist to ensure that it working properly. Everyone has their own personal treatment plan that has been decided by the doctors on how to deliver the prescribed dosage and calculated time that you will be under the machine.

Tattoo for life Before meeting LINAC I had to be measured up in a CT Scanner. This is when i received a tattoo, which was marked on my body by a small pen. This tattoo never fades and is a sign of what you have been through. A mark that will never let you forget. These marks were where the beams would be directed and used to take measurements for the plan of treatment. I was given three little dots on my skin; one above my pelvis, and one either side of my pelvis. The radiographer used red laser beams to measure them up. I laid down on a couch that had a scanner around it. This would be the position that I would be laying in for all of my treatments. I was under the machine for about 3o minutes. I didn’t feel anything, just heard the sound of the machine.

For my treatment I had to have 25 sessions of radiotherapy. That was every day, monday to friday, for five weeks. I had the weekends to rest up.

Before my first radiotherapy appointment I was able to sit down with someone from the radiographer team and discuss what time of the day would suit me for my daily treatments. I was given a leaflet which told me about the process, what to expect and what side effects I could get. I asked for early morning sessions as then it would be easier for me to get some rest before the children came home from school.

As my tumour was in a very sensitive area, I was told to expect some very severe soreness after week 3. A mould was made to place over the skin to protect it. This was made up for me.

I was given my time-table with all the dates and times printed on it and what LINAC I would be on. The hospital had a few.

I had to drink 750ml of water 45 minutes before going in the machine. I had to hold this in my bladder until the session had finished. This was so that I kept my body hydrated and so the scanner could create detailed images of inside my body. When I turned up to my appointment I was told when to drink by the radiographer. This I found easy for the first few weeks, it then started to become harder as the time went on. I was struggling to hold my bladder as the radiotherapy was burning away my insides.

My first session felt like it went on forever. I remember laying in the machine and counting how many times it went round me and guessing in what direction it would take next. I was in the machine for about 15-20 minutes, It took a while to make sure that I was in the correct position so the whole process could take up to 30 minutes.

My family decided between them that I wasn’t to attend my sessions alone, so there was always someone waiting for me outside in the waiting room. Ready to have a normal conversation with or just be there for me.

I remember talking to the machine as it went round me. Telling it how I just wanted more time with my family, how I hoped that It wouldn’t miss a cell and to make sure that they all went. As I laid there I began to think it was answering me back. Listening to me. I remember the sound of it going round and round. I could hear music in the background. I told the machine to be nice to me and I would sing to it. Silly eh! How can a machine listen to you. It felt like it was the only place I could talk about my feelings without being judged or told to stop being silly. I had to lay there as still as I could, which is hard when you have to think about it. You always get an itch somewhere or feel a twitch in your leg.

Everyone was so nice and welcoming. The staff was helpful and friendly and always smiling. The other patients in the waiting room made conversation, even if it was talking about what brand of coffee they were drinking, it was small talk and just what everyone wanted. There was a sense of calm in the oncology department, quiet at times when you needed it. I almost felt like I belonged in there. People around me who I could relate to, who could understand what I was going through. It was as if I could see them walking around with a big question mark hovering over their heads. We all had the same thoughts, thoughts that we didn’t share with close family and friends but what we transmitted through our eyes. Sadness and hope.

I had lost hope in my body, I had lost my way in life. It was like the waiting room was my refuge. I needed to find strength from the people around me, the strangers in the waiting room and from within.

Hours quickly fell into days and the days into weeks. Not long and I had been going for a month. It seemed normal to get up and make my way to the hospital. The oncology department was at the back of the hospital, away from the busy part, almost a different building. It was like we were being hidden away from everyone. Kept to one side away from normality.

Side effects  The side effects were harsh. The last week I laid in bed crying and only got out for the appointments and to got to the toilet. I didn’t want to drink as it burned when i passed urine and walking became impossible with pain. My skin was so sore that it was blistering and peeling. I was given a cream to apply to the area, but that was only because a friend advised me on what to ask for. I was told that my skin would become red like it would do from sunburn, but I didn’t expect it to literally burn away. The only ease i got was when I let air to it and applied the cream. I gave up on wearing underwear and only wore loose clothing. I had to take imodium tablets as it was playing havoc on my bowels. I was so tired all of the time and some days slept for hours. I could be having a conversation one minute and then asleep the next. I welcomed the weekends as it came me respite from the treatment and by sunday evening I was becoming to feel normal again, only to go back to treatment the next morning.

I had to drink as much as I could in order to stay hydrated, I tried to drink at least 2 litres a day.

Long term effects  My bladder became weak and I could no longer hold in my urine, It felt full all of the time making leaving the house hard. I can no longer have children as my tubes have been burned away and I suffer from hot flushes. I have weaker bone structures and have had physio to build it back.

Two months after treatment finished I spent 10 days in hospital due to having an Abscess due to the effects of radiation. I lost all possible feeling to go to the toilet and was in severe pain. This resulted in my operation to remove the tumor forward by Two months.

It’s been 18 months since the last day of radiotherapy and I am now nearly back to full health. I know I can no longer produce eggs to have more children, but I already have three wonderful boys, so that’s not a problem for me. I still suffer from hot flushes but they say that I may be going through my menopause early due to radiotherapy.  I often get tired, but I just remember to take it easy and rest. I drink at least 2 litres of water a day and eat a healthy balanced diet (although I stay away from processed meats and pre prepared meals). It’s hard to look back and reflect. I need  to share my experience, not only for myself but for others too.

 Please feel free to contact me if you want support.
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2017 Please Be Kind To Me

Dear 2017,

Last year was not a very good year to many people, me included. 2016 was pretty shit, to put it lightly.

Many people lost their lives through illnesses or disasters in 2016. To be honest I didn’t spend much time watching the news or reading the papers about what was going on around me as I was in my own little nightmare.

This year I would like you to be kinder to me and my family, please.

We have been through so much and deserve just a little break.

2016 saw me being diagnosed with Bowel Cancer, adeno carcinoma, an unusual cancer for a young woman of my age to get. In fact it is rare and there are only two of us diagnosed with such cancer in the hospital that I received my treatment at.

Last year I under went 5 and a half weeks of radiotherapy and taking chemotherapy tablets.

Last year I spent 8 days in hospital with an internal infection due to the radiotherapy harming my bladder and bowel.

Last year I had my tumour taken away (well what was left of it).

On top of everything that I went through in the space of 5 months, you decided that you would throw a little more at me.

After my first surgery, I had complications and just 2 weeks later I had to have an emergency operation on my small bowel.

You see 2016, I am stronger than what you think I am.

In 7 months I went through hell and back, physically and emotionally. Not only did I suffer but it effected family and friends.

So this year, 2017, I would like you to take into account on what I went through last year and take pity on an underweight Mummy who just wants to be here for her children.

I would like to laugh again. A real good belly laugh.

I would like to be fear free.

I would like to spend precious time with my boys without thinking about time.

2017, I would like to be left alone please. Let me be. Allow me to be who I want to be.

I want to have tears of happiness. I want the tears to roll down my face and onto a smile

I don’t want any more sadness or bad news. I want to be hopeful.

Dear 2017, please be kind to me.

Much Love

A very tired, but hopeful Angela

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