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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I am Scarred, I am Here, This Is Me!

For the past year and a half I have been living with a Colostomy due to treatment for Bowel Cancer.

I have never been a very confident person and will often hide behind my children when it comes to being social.

I shy away from confrontation and hide my body behind clothes that are not figure hugging.

Learning to live with my stoma has been hard. Learning to accept how my body has become has been a journey. I am still not fully confident with myself, but I took the first big step a few days ago. That was, to share a picture of me in a bikini (not a high-waisted one) on a couple of my social media outlets.

I was worried that people would reject me and call me hideous but I needed to do it for myself.

Recently, the blogging community had been shocked with the sudden death of a highly respected blogger. Her main motto was to live for the day, her approach to life was honest and carefree. She was bold, caring and funny. I didn’t know the Kate but I had seen her at events that I had been to and followed her on Twitter, where I got to read about her dating exploits. This week, a huge following of bloggers shared photos of themselves, on social media, in their bikinis. Kate’s tips on getting your body bikini ready was to simply just wear one!

My facebook and Instagram feed quickly became full of beautiful ladies of all ages sharing their bikini bodies. I became inspired to share mine.

If everyone else could, then why couldn’t I?

I first shared the picture on the blogs facebook page and then on Instagram. I was worried about receiving negative comments, but in fact I received some lovely comments of support and encouragement.

You see, I see my body as hideous. Ugly. Gross. A monster hidden beneath the clothes.

I want to be accepted, even though I am different.

I want people to know but I don’t want to be ridiculed.

I don’t want people to stare at my tummy, scanning over my clothes looking for where my stoma is.

I am quite anxious talking about my stoma and letting new friends know about it. I don’t want to be treated differently.

But, I shouldn’t be feeling like this. I should be proud that I am still here. Still alive.

Beauty isn’t just about having a perfect body with no imperfections or having a pretty face. It’s about having a pretty soul, a good heart and a strong mind.

So with Kates ‘this is me- take it or leave it’ attitude I share with you all now how I look today

This is my F**K You Cancer Jump

Never stop believing in yourself!

 

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Damn, I’ve forgotten why I came in here! Chemo Brain

For the past couple of years,I have had problems with short term memory loss and finding it hard to concentrate. It has been particularly bad since I had treatment for Cancer.

Have you ever heard of chemo brain? Very similar to baby brain. It is a common term that is used by cancer survivors to describe thinking and memory problems. It’s not clear what causes the signs and symptoms of memory loss in cancer survivors, it could be the stress of the diagnosis or the effect of the chemicals in the treatment.

I was told that the side effects from the treatment would take up to 6 months to get out the bodies system, although it doesn’t seem to be the case with me.

I would like to think that I am not losing my memory and that I am just letting go of my past. But, it’s short term that I am struggling with. Those simple tasks that we take for granted.

I find myself walking into a room and forgetting what I went in there for. I can stand there for a while trying to remember what It is that I am meant to be doing, but it doesn’t help.

I find that words don’t flow from my mouth anymore and I get struck for the choice of words I am looking for. I get tongue-tied, I know what I want to say but it doesn’t come.

I write myself notes and set the calendar on my phone to remind myself of what I am doing. But it is mostly those moments where you decide to do something at that moment; those on the spur moments, that I forget. Like going upstairs to grab a top but coming back downstairs with nothing as I couldn’t remember what it was that I wanted. Or, whilst cooking the dinner, I may look in the cupboard for an ingredient and forget what it is I am looking for.

I sometimes find myself confused and feeling of mental fogginess. I used to love to read a book but I find it hard to concentrate on the words, they seem to be covered in a fog within my head and I forget what I have read.

Those moments do come back to me, But I have to trace back to the moment I thought of something for it to come back.

Last year, I started a college course and I am normally organised with work loads. But, I have been finding it hard to learn the new skills. I forget what I am writing half way through the sentence. The course is taking longer to get through but I am managing it, essays are taking double the time and I have to re-read every sentence a few time for it to make sense.

Maybe I am just getting old, maybe it has nothing to do with the treatment. I think I would like to think the latter.

 

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I Am Not a Survivor But I Am Thankful: Life after Cancer

It’s been two years since I received the news that I had Cancer. The past two years have been a roller-coaster journey with emotions and life.

The first year was hard, I didn’t know what the outcome of my treatment would be. I lived for the day, scared to make plans for my future. Scared for every appointment I had with my surgeon and oncologist.

It was hard to take it all at first, I had so many thoughts and feelings. Shock, anger, sadness, guilt, fear, anxiety and alone. My emotions caused confusion and mood swings. These emotions were all a part of me coming to terms with my illness and how I was going to cope. In that first week, I experienced every emotion possible that someone can go through.

You hear so many sad stories about Cancer that is it hard to stay positive. But I tried for the sake of my family and my own sanity.

Having Cancer can quickly take over your life and I didn’t want that the happen. There were days where I cried from morning to night, days where I didn’t talk and days where that’s all I wanted to do. I was afraid that I had not control over my body and what i wanted it to do. At first it was hard to talk about, I was ashamed of myself, my mind was trying to process what was happening and I just couldn’t get my head around it. My mind was telling me that I was going to die but my heart was saying something else. As the shock wore off it became easier and I became stronger with my emotions.

Everyday I woke to another day I was grateful and thankful.

For the first 6 months the treatment and illness quickly took over my life. I spent weeks having tests prior to 6 weeks of daily chemo/radiotherapy. The hospital became my second home. I was admitted three times into hospital, totalling 9 weeks in a hospital bed, one being a planned admission for surgery. I remember visiting a friend 2 months after I was discharged and bumping into a member of staff in the corridor. She gave me a friendly smile and said nice to see you back. I smiled back at her and she said ‘you used to work here didn’t you?’ I laughed.

As time has gone on it’s got easier to deal with but that doesn’t mean that I still have my moments. I still cry. I am still anxious about it returning. It is easier to talk about now, but I am still shameful. I still blame myself.

Anxiety is hard to deal with. Those moments are particularly harder when it comes to oncology appointments and scans. I receive 4 scans a year; 1 full body scan and 3 MRI. The week running up to the appointment is worrying and the weeks following the scan can be an anxious time. All you want to hear is that the Cancer has not returned. Sitting there in the patients chair in the oncologists room, looking, scanning over your oncologists face for any sign that you can read before the words come from their mouth. Looking into their eyes for sign of good news. And the emotion of a sudden relief when it comes back as positive news.

It was two years since my diagnosis last week and I received news from a recent scan that I am still in the clear of any return of tumours or any inflamed lymph nodes. RELIEF. I can suddenly breathe normally again and allow all those negative thoughts and feelings out into the air. Until next time…

Again I am grateful and thankful to be here surrounded by loved ones; family and friends.

I don’t see myself as a survivor as Cancer will remain with me for the rest fo my life, I have to live with the anxiety of it possibly returning. I have to live with the change that it has caused to my emotional well-being. I am constantly reminded of my Cancer journey with the disfigurement it has left on my body, with the aches and pains that the treatment has caused and with the scars that surgery has left behind. I have to live with having a permanent colostomy which has caused problems with my confidence. And I have to live with seeing the pain in my loved ones eyes when they remember what we have all been through. Cancer didn’t just affect me but to all those around me.

I am not a survivor but I am thankful.

 

 

 

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What a Difference A Year Makes

The past two years have been hard on the family,  I have had many hurdles to get over and many life changing decisions to make. The Year before was fighting emotional barriers, the past year have been trying to gain weight and muscle back from my nightmare hospital stay.

I lost a lot of weight during my hospital stay after the operations and was discharged on the 28th December 2016, weighing under 5 stone. My weight before I fell ill was always between 7 and a half to 8 stone.

A few days after my first operation
A few days after my first operation

During my time in hospital I had days where I didn’t eat or drink, I was told I was Nil by Mouth by a doctor over the weekend and then my doctor would come back on shift and tell me to eat. Eventually, eating and drinking became a chore and I struggled to even take sips of water. A dietician ordered for me to have a TPN fitted; a Total Parental Nutrition. It was administered into a PICC line, through a main vein, as a way of giving my body the essential nutrients needed to stay healthy.

I quickly became weak after my second operation and the weight began to drop
I quickly became weak after my second operation and the weight began to drop

I suffered quite significant changes to my physical and emotional health. I was inactive for over 2 months, just laying in a hospital bed and I could only manage a few trips around the ward. My strength was weak and I struggled to walk without help. Most of the time I used my drip stand for support, other times I was helped by a member of the family. I needed the nutrition to aid the recovery after surgery but also to gain strength. My muscles became weak and my joints stiff.

Christmas Day in hospital
Christmas Day in hospital

When family or friends visited, I covered myself up in my dressing gown to hide away how I looked.

It was hard to recover from my critical illness and 2 serious operations, the process was difficult and slow. Whilst I was in hospital I must have vomited every day. Family and staff believed I was doing it to myself, but it was hard to explain that my body was rejecting it. I could no longer swallow a glass of water, only managing a few sips every hour or so. Every time I ate; I was sick. I was given nutrition drinks called Fortisip but they were too sweet and they didn’t stay down too long before they was being brought back up. I lost my appetite, although I yearned to eat good food. I could no longer taste food.

My bones poked through my skin and hurt. This was just before Christmas day
My bones poked through my skin and hurt. This was just before Christmas day

Nutrition was the key to building back up my body strength and natural defences. I needed to build strength, boost my immune system, gain weight and restore my overall health and well-being. I was losing faith in myself and the doctors didn’t have the answers as to why my body was refusing food/drink. It was down to me. I couldn’t look in the mirror without crying, seeing a stranger looking back at me looking frail and withdrawn

My pain was being managed by 1/2 paracetamol four times a day. I wasn’t allowed anything stronger due to me weight.

A few days after Christmas my surgeon asked me if I wanted to go home. Of coarse I said yes. He signed my discharge papers and I was allowed home. He said that I needed to be home to recover.

Once at home my journey began.

I couldn’t walk up the stairs without being carried up. I had to sleep on the sofa downstairs as the bed was too hard for my skin. I slept on two soft filled toppers plus cushions.

With the help of my family being around me all day long, I began to take regular sips of water. Slowly my intake increased.

I had a choice of my own food, when i wanted it.

I ate every so often.

I wanted to gain weight but didn’t want to eat junk food to do it. I ate five/six small meals a day. Drank smoothies and weight gaining shakes. Ate yoghurt and snacked on fruit.

Gradually with the help of my family, I started to gain weight. It was weird as it was New Year and everyone else was dieting and I was trying my hardest to gain weight. My social media time lines were full of dieting and slimming clubs, where i was doing the opposite and eating high calorie foods to put the weight on. I downloaded an app that counted up the intake of my meals, it gave me a daily run down of calorie and protein.

22 days being home
22 days being home

Now my weight was slowly increasing I had to look at my  strength. I began to integrate exercise into my daily routines. My first was A short walk down the road, just a few hundred metres with the help of my son. It wasn’t long and I was taking longer walks. Even though I could walk, I needed help to sit down and stand up. My joints stiffened after a few seconds. I couldn’t bend down without being assisted. I began to see a physiotherapist who helped with building back my muscles. I was given  exercises to do and after 6 weeks was shown how to use gym equipment to help.

A year after the first operation
A year after the first operation

It has taken some time but I now feel like I am getting there. I still have work on the muscles in my legs, specifically around the knees but it’s a gradual process.

I now attend the gym a couple of times a year. Something I have never done before and I enjoy it. I don’t stand on the scales to weigh myself, It’s not needed. I only have to look at myself to know that my weight is fine.

I am happy with where I am today. I am proud of my development. But, I wouldn’t be where I am without the perseverance and help that I received from my family and friends.

Me now
Me now

The past year has been one hell of a journey.

I wonder what this year will bring?

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