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!

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.