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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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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When your body doesn’t work like it used to before…

It has been 11 months since my last chemo/radiotherapy session and 6 months since I came out of hospital after having 2 major operations.

I would like to say that recovery is going well although it has been slow. With a very active family It has been hard keeping up with them.

To think of where I was 6 months ago and to where I am now – I am very proud of myself. When I was discharged from hospital I couldn’t even walk up the stairs, I had to be carried and I couldn’t stand for longer than a minute without my legs giving up on me and collapsing. I thought I would never get to where I am now, but with the help and support of my family and friends I wasn’t allowed to give up.

I lost a lot of weight when I was in hospital and although I have managed to gained the weight back on, it has left me with many problems. Not just losing the weight but the treatment has too.

A few weeks ago I attended an appointment at my Doctors surgery as I was struggling with stiffness and weakness in my legs and pelvis area. I had been told previously from my Nurse that It was probably just my body getting used to being used again after so long resting in a bed. I was a little worried, understandably, after all what I had been through. So I thought that it would be best to get it checked out. A previous MRI showed no problem with the bones so I was referred to a physiotherapist.

Since gaining my strength and the weight back I have tried my best to be active. I am not strong enough to go out running but I have began to take gentle bike rides with the boys, jogging round the block and I walk everywhere. I believe that it was the walking that has helped me get me to where I am now.

I feel like I have got old before my time. I can no longer bend my knees and get down on the floor without having to spend a few minutes trying to get back up.

You take for granted how your body just does things, like bending down, walking up the stairs, sitting and kneeling down. All these things are now a struggle for me!

My body just doesn’t work like it used to and I have to work on these areas.

The physiotherapist has given me some exercises to do and is hopeful that I should gain some more strength back in my legs. The treatment and the operation has caused muscle loss in some areas and she believes that with a few gentle exercises and being taught how to use some gym equipment I should be on the right road to recovery.

I have two exercises to get on with; where I have to lift my pelvis up off of the floor and level it out and to stand up and sit down from a cushioned chair. I am also going to carry on with my walking as I do believe that in doing this type of exercise it has helped me gain muscle and strength in other areas.

Hopefully (fingers crossed) i will be stronger by the end of the year. I need to stay fighting fit!

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Bowel Surgery My Story Part 1

It’s been a long, hard struggle, but fingers crossed I’m on the road to recovery.

I was admitted into hospital last November 9th, for a scheduled bowel removal operation. I was in good spirits as i arrived to the hospital at 7am in the morning. I had my suitcase packed with a few essential items of clothing, magazines, books and a few snacks for the evenings whilst I was in hospital. I was due to stay in for 7-10 days but all depending on the rate of my recovery. I was told by my surgeon that there wasn’t many risks to the surgery for someone as fit and healthy like myself.

As I laid on the hospital bed waiting to be called into theatre, my surgeon came by to see me, I was in a positive mood and was hopeful that my surgery would be a success. I had tried hard not to think too much about the surgery but had researched the type of surgery I was having. I knew that my rectum was going to be removed as the tumour was sitting on the sphincter muscle, which meant if the rectum was left intact then I would not be able to control when I wanted to release my stools. My surgeon shook my hand and told me that I was first into theatre. I got dressed into my gown and had a last minute trip to the toilet before being wheeled into theatre.

I remember the lights were so bright, everything seemed to be gleaming. I remember sitting on the edge of the bed in theatre and the nurses and anaesthesist running around me, all doing something important. They all seemed to be really busy and I was just sitting there like a little lost lamb. Not sure what to do or say. I remember watching the nurses gather together the surgery tools, placing them onto a trolley, all lined out in a specific way and thinking how shiny and sharp they looked. I took a bug gulp. A deep breath and closed my eyes. I thought about my children at home and how they would be feeling today, how they would wake up and notice mummy not there. I remember a nurse coming over and fitting in a cannula to my hand and a needle into the base of my back (I believe this was an epidural, but I’m not sure). I remember the anaesthesist commenting on how calm and collected I was. How I seemed to be composed and ready. I didn’t feel it. I was then told to lay down. And that was it. I can not remember anything more until I woke up 6 hours later

I was in a different room this time, different people running around me. There was a nurse sitting on a chair next to my bed. When I opened my eyes she asked me how I was feeling. I felt fine. I felt no pain. I felt OK. I didn’t want to look down at my tummy, I didn’t want to see what they had done. I remember feeling hungry and thirsty so the nurse went and got me a yoghurt and some water. It felt so good to eat it.

I had a catheter to help drain the bladder of urine. I also had a colostomy bag on the left hand side of my abdomen. I had a drain attached, coming out of my bottom collecting blood/fluid. I also had 3 little incisions where they had performed a laparoscopy to remove my rectum and lymph nodes.

My parents had come with me to the hospital that morning and I hadn’t seen my Mum since they wheeled me down to theatre, I wanted to let her know I was OK. A nurse told me that My parents were waiting outside in the waiting room and wanted to know how I was. I wanted to see them but they wasn’t allowed through to the recovery room. After an hour or so they were allowed to come through and see me for a quick cuddle and to see how I was. It was good to see them, I held them tight

At about 6 in the evening I was taken upstairs to the surgery ward where a bed was waiting for me. I don’t remember much, I was very tired and kept drifting in and out sleep. Paul was with me and then it was time for him to go home. I didn’t want to be on my own. I slept. I awoke in the middle of the night in immense pain, screaming out to the nurses for help. I can not describe the pain but I remember it being so strong, I was crying. I wanted it to stop. I don’t even know where the pain was coming from, I just know that whatever the nurses gave me it wasn’t strong enough to take it away.

I don’t when, but they hooked me up to a PCA (patient controlled analgesia) where I was in control of when I administered morphine for the pain by pressing a button. This way I was able to control my pain whenever I needed to.

I don’t remember when I got up and out of bed. The days went by in a whirl. I slept so much. All I wanted to do was sleep.

I asked the nurses if I could get up and walk around but they said that I needed to be assessed by the physiotherapy team first.

I remember asking to get out of bed so I can sit in the chair. One of the nurses helped me out and then just as he was walking away I remember feeling really weak, sweating and then nothing. I must have blacked out. The next I remember was being carried into my bed and being hooked up to a saline drip. I believe that my blood pressure was low and that is why i fainted after getting out of bed.

I wanted to try again. I wanted to get better. But I was so scared I would faint again. I felt weak.

Days went by and I was soon feeling stronger. I was eating and drinking but not enough. The food was horrid. Tasteless.

My parents came to visit everyday. My mum helped me wash and when I gained enough strength to get out of bed she helped my shower. I hated seeing myself in the mirror. Who was the person looking back at me. A thinner, weaker version of myself.

My boys came in to see me, but I didn’t want them to see me so ill and weak. My eldest son came to visit after school, on his way home. Most days he would just sit next to my bed holding my hand whilst I slept, other days we would talk about school and his brothers. I hated seeing the hurt in their eyes. I would cry when they went home. I wanted to gold them close but my wounds and stoma meant I couldn’t have them close to me incase they knocked the tummy.

Where my rectum had been removed I had been stitched on the bottom. I wasn’t allowed to sit on my bottom for longer than 10 minutes. It felt weird. I had to keep moving from one side to the other every half hour. Sleeping was uncomfortable. My pert bottom was gone and in replace was a disgusting looking flat piece of skin that covered some bones.

It took over a week for the stoma to start to work. I was told I was constipated and that I needed to drink more but I just couldn’t take in anymore that what I was drinking.  I was given an enema to help. My first stools were watery. I was taught from the stoma nurse how to change the bag and what equipment to use. It didn’t seem too bad.

I was told what I could and couldn’t eat. So much of my normal diet was a no go. I went off of food and could only manage a few mouthfuls at a time. I began to feel sick and started to throw up whatever I was taking in.

I wanted to go home so much. I wanted to be with my boys. I hadn’t seen much of them whilst I was in hospital. So when a doctor came round to see me two weeks after surgery and asked me if I wanted to go home, I obviously said yes. I knew I was being sick but if they thought I was well enough to go then I was happy to do so.

We waited around for the discharge papers. Two hours later I was sitting in the passenger seat of the car and ready to set off home.

Unfortunately the story doesn’t stop here. Read part 2 later on this week. 

Thank you for reading.

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