More results

So we got a phone call on Tuesday from Di. She said the tissue removed during Steve's surgery had been analysed and she had some results for us.

Out of the 29 lymph nodes removed, 3 are cancerous. This means there's a chance of some evil little cancer cells still floating about in Steve's body - this means chemo.

We were told the chances of chemo were slim because Steve's operation was the most drastic that could have been done, so it was likely all the cancer would be taken out. We were told back in July that the scans showed the cancer hadn't spread to any lymph nodes - I've since been told that there would be no way of knowing this until the histology was back from the operation.

She said it was unlikely that any cancer had been left behind as the whole tumour was removed, but chemo would assure that any stray cells would be destroyed.

We have an appointment in about 2 weeks when we'll find out the plan for chemo. Until then all we know is that it will be happening.

We both understand this and in the long run I'm sure we'll be thankful for it. But we'd been so convinced that this would all be over after the operation that we can't help feeling a bit let down and wounded by this news.

Steve's aim had been to reach the end of the 6-8 week recovery period from the surgery and get on with his life. Back to work, back to socialising, back to normality. Now we'd been given at least an extra 6 months on top of that. This seems so far away that we can't even see it. It feels like it's never ending and it's only been 3 months since we first went into hospital after the Isle of Wight Festival.

Just a bit of a rant really! This has been such a tough journey and I've felt so helpless all the way. All I want to do is take it all away from him and make this all go away and there's nothing I can do to make that happen.

I do understand it's for the best - the way I see it, doing chemo now means he hopefully won't have to go through any of this again in the future. Just can't help feeling a bit deflated by it all.

If anyone has any advice or words of wisdom they can offer, please do! Thank you.

Lots of love Xx

Second Biggest Cancer Killer... Really?!

I'd hardly ever even heard of bowel cancer until Steve's diagnosis. I knew it existed but that was about the extent of my knowledge of the disease. But now everywhere I look I'm seeing that it's the second biggest cancer killer. How is it possible that I knew so little about the symptoms?

It angers me that we know so little about this sort of cancer - I'm sure hundreds, if not thousands of lives would be saved each year if there was a bit more awareness of the many symptoms that can occur.

Maybe it's because there is still a stigma attached when it comes to talking about bottoms and poo. It's heartbreaking to think people die of this disease because they don't want to face 10 minutes of embarrassment at the doctors.

So, for anyone who just happens to have come across my blog and isn't aware of the symptoms, here are some of the most common ones:

• Rectal bleeding (bleeding from your bottom) if it persists for more than 3 weeks.
• Abdominal pain, especially if severe but also if it is constant, or comes and goes.
• A change in bowel habit - going more often, less often, looser stools or passing a clear mucus.
• A lump in your tummy.
• Unexplained tiredness, dizziness and breathlessness.
• Unexplained weight loss.

It is unlikely that most of these symptoms will mean bowel cancer, but any change is worth investigating, even just for peace of mind. Speak to your GP and make sure they take you seriously. Too many people are sent away without a second thought because they are "too young." There is no such thing as too young, so please take notice of what your body is telling you. It really is worth it.

P.S. I have to give credit to Bowel Cancer UK and Beating Bowel Cancer - both have been fantastic in raising awareness as well as providing help, information and support for myself and Steve, along with many others I know who are facing this battle.

Home, But Not For Long

Getting Steve home in his parents car was a struggle as the operation he had means he can't lay on his back or sit down for at least 4 weeks. He had to lay on his side across the back seats and was in a lot of pain, especially at every turning or bump in the road. We got him home and immediately he seemed more himself. He was so happy to be back home and felt like he was finally taking a step forward.

(This picture is a little something I got for him for when he came out of hospital - nothing special but said just what I wanted it to say, a reminder that I would be with him through all of this. Inside is a little note from me, saying a similar thing.)

It was a worry that his appetite had disappeared so dramatically. We were warned he would lose his appetite quite a bit, but for someone who loves good food and plenty of it, this was actually quite scary. He didn't want anything, just water. I didn't want to force him to eat anything but at the same time, I wasn't about to let him go a week with no food. I figured out that the best way to encourage him to eat was to say "Well I'm making some for myself anyway, so I'll make some extra and it's there if you fancy it." And usually, once it was in front of him, he did fancy it. Yay!

Steve struggled to stand for more than 5 minutes at a time, but the only rest his legs and hips could get was for him to walk (therefore not really rest them at all). We would put a film on which would end up taking 4 hours to watch because of the amount of times we had to pause it for him to get up and walk around, or switch sides because one had become to painful to stay on. It really was hard to see.

The keyhole surgery meant he had no use of his stomach muscles, which until you can't use, you don't realise how much you actually need them for everything you do! Day to day things became mammoth tasks - if he managed to get up and have a shower each morning, that was an achievement. And even though it doesn't seem like an achievement to the average person, I felt so proud of how far he'd come since that Thursday in hospital.

A week after his op, on Thursday 13th September, Steve said this was the best he'd felt - his urine infection from the catheter was starting to ease as the antibiotics kicked in, and I could see a glimmer of his personality coming back to me. Which is why when he got out of bed and his 'behind wound' gushed blood all over the bed, floor and everywhere else, we panicked. It was not stopping, and it looked like a lot. He kneeled down, leaning over the bed and I put a few towels underneath him while I called the ward, who told me to call a district nurse out.

While we waited for her, Steve got back into bed wrapped in towels and the bleeding seemed to stop. He then got up for a shower and it started again. The bathroom looked like a murder scene, there was blood all over the shower floor and up the walls, it was terrifying.

He managed to get back into bed and when the nurse came out, she thoroughly checked him and said she couldn't understand why this had happened. She called out Steve's GP, who insisted that his wound was really infected. An ambulance took us back to hospital, where a different surgeon examined him and said he was absolutely not infected, and that this was completely normal, and even expected. Could've told us that! I thought I was going to have a heart attack!

I took a few of his good friends to visit on Saturday; it was the first time he'd felt up to seeing anyone else. He had a lovely hour with us and hearing him properly laugh again reminded me that it had been a while since he had. Only about 10 days, but he'd laughed so much up until the day of his operation that everywhere felt cold and empty without that sound.

So now it's Monday 17th September and I'm hoping he'll be coming home today. He's been kept in for 4 nights so far, but the bleeding has pretty much subsided and he's been feeling himself again. I can't wait to have him back home again, this is a big house to be completely alone in.

Fast Forward... Surgery Day

After a horrible day of Picolax (bowel prep) and Preload (high carb drink to aid recovery after surgery) we both had a really broken, troubled sleep. We were both starting to think about what surgery actually meant - there was a 2.8% chance he wouldn't even wake up. Sounds small (and I'm sure most of those people who don't wake up are 90 year olds having cardiac arrests on the operating table, not 30 year old men who are otherwise fit and healthy) but still in the back of our minds was "1 in 28 people die during this operation."

We woke up at 5.45am on Thursday 6th September, surgery day, for Steve to have his last Preload drink. Luckily, we needed to be in hospital by 7.15am and he was being taken into theatre by 8.30am - we'd have all gone crazy with nerves if we'd had to wait any longer.

Steve's mum and I both went into hospital and were allowed to stay with Steve until he was taken to theatre.

Mr H said he'd call me as soon as Steve was out of theatre to let us know how the operation went - it would take a minimum of 4 hours, probably closer to 6.

Needless to say it was a terrifying day, although considering the situation we did manage to keep ourselves busy and almost distracted.

We were having a coffee at 2.15pm when I got the call from Mr H. He was really pleased with how the surgery went, he said it was very successful and he was confident he had gotten rid of the cancer. We were told Steve would be in recovery for an hour or two.

We visited as soon as we were allowed, and I felt a stab of guilt. Steve had a blood pressure cuff on his left arm, a cannula in his left hand, something attached to a finger on his right hand, a boot on each foot that puffed up every minute (I assume something to do with preventing blood clots?), a catheter, a drain out of his bottom wound, an epidural in his back and 6 keyhole wounds covered with clear dressings. And then of course there was all the medication.

Understandably he was very drowsy. He was given injections to make sure he wasn't sick, and wasn't allowed any morphine for half an hour after being injected. He was in agony, and very emotional after what his body and mind had gone through.

Living and working with Steve meant I never had a chance to be upset since his diagnosis. I was determined not to let him see me cry - so I just didn't cry. After seeing him in hospital that night, I went home to our empty house, and 2 months of fear, anger, anxiety, nerves, and now relief and happiness poured out of me and I cried for hours and hours. My head was aching from crying and I completely tired myself out. I had tried to accept what was happening, and did a good job of pretending that I had, but that night I screamed and cried about how unfair and evil this was. My Steve did not deserve this and for those few hours, I hated the world.

It was so difficult to see him all wired up to things, and to make matters worse he wasn't allowed to lay on his back or sit down, and won't be allowed to for at least another 4 weeks. His legs and hips have been in excruciating pain from taking constant pressure. In hospital he had to switch sides every half an hour because the pain got too much - quite a challenge when you have numerous things attached to every joint of every limb.

Each day in hospital he seemed to get a little bit better - I never missed a visiting hour, 3-4 and 7-8, religiously I'd be waiting to be let into the ward. Nothing else mattered. Every time I saw Steve, one of the many things he was attached to had been removed and although it still devastated me, I left the hospital more content every time because I could see an improvement. By Saturday, he was walking 1500m when they told him 250m would be fantastic. Obviously that wasn't straight away - he was full of drugs, very dizzy and therefore passed out a couple of times, but once he got started there was no stopping him. One visiting hour I even found him waiting in the corridor for me.

By Monday 10th September he was allowed home with me, and despite what we'd gone through and what was inevitably ahead of us, that was when I knew what it was to be happy.

Scan results

Finally Tuesday 24th July came. We had a meeting with Di, Steve's key worker, to discuss the results of his recent scans.

She told us they showed signs of a very early cancer with no spread! It should be easily treatable with surgery and a possibility of chemotherapy afterwards.

I left the hospital feeling really positive - after all of this, he'd be cancer free and we could get on with our lives together. I was holding back tears of happiness - his first symptom had been so drastic and he's lost such a large amount of blood that we'd started to fear the worst. I was thrilled that the cancer was treatable. Steve was understandably very nervous for surgery, but mostly just relieved and happy that he was going to be okay.

Di told us we'd have a further meeting on Friday 10th August, where Steve's surgeon, Mr H, would be present to further discuss the surgery and provide us with a date. Di told us it would very likely be the following week, and we prayed that it would - waiting was excruciating.

Mr H gave us a date - 6th September. We'd have to wait nearly 4 weeks! We didn't want enough time to think about what was being done, we just wanted it done. I did take some comfort in the fact that they were letting us wait so long - I've learned from previous experiences that if it was really serious, they'd have wanted to operate immediately.

We didn't have much choice - we waited nearly 4 weeks, and tried to put all of this to the back of our minds. (Impossible!)

From diagnosis onwards...

When Steve was diagnosed, they weren't able to tell him how advanced the cancer was, if it had spread or if it would be treatable.

I can honestly say, 6th July 2012 was the worst day of my life, and Steve's too. I was filled with an overwhelming sense of guilt and helplessness, I don't know how else to describe it. I was desperate to take it away from him and go through it all myself if it meant he wouldn't have to.

It took hours to get to sleep that night, and we woke up in 15 minute intervals throughout the whole night until 6am, when we decided to give up on trying to sleep. I remember waking up and praying that it was nearly morning, and it was still only 2am. Longest night ever.

Steve couldn't bring himself to tell friends and family, so I left him downstairs with Mike whilst I went to our room and made the phone calls. Everyone had the same question - is he going to be okay? And I couldn't give them an answer.

He had MRI and CT scans, lots more blood tests, and his next appointment was on the 24th July. That meant 18 days of pure agony and waiting in limbo for answers.

He kept saying "what am I going to do if they tell me I've got 6 months to live?" and "I really wanted to go to Glastonbury festival next year but I don't see much point in planning that far ahead anymore." It broke my heart to see him scared and wondering how long he had left.

I knew this was a very serious matter, but from day 1 I really did believe he was going to be okay. I told him that, but he probably thought I was just trying to comfort him. I suppose in a way I was trying to comfort both of us. He had everything on his side - young, physically fit, no previous symptoms, a strong mind and a fantastic support network. But cancer doesn't care about those things.

How it all began...

Firstly, I want to talk about Steve's diagnosis and the time leading up to it.

We'd been at the Isle Of Wight Festival in June this year - my first festival and one of the muddiest there has ever been. It was supposed to be a Thursday-Monday trip, but Steve took a slightly drunken fall on the Friday and sprained his ankle. He didn't have the strength in his ankle to walk through thick, knee-deep mud so by Sunday morning we'd decided to come home.

My instincts were telling me we needed to get home ASAP. I've never really paid attention to instincts before, but there was something about this one that made me feel very uneasy.

Sunday was fine - we got home, had nice hot showers and a hot dinner, watched a film and had a good night's sleep - until about 6.45am, when Steve got up the go to the toilet. I was half asleep when he came back into our room and told me that he'd just lost about a pint of blood on the toilet.

Straight away I sat up and told him we needed to go to hospital right away. I didn't know the symptoms of bowel cancer, and at this point hadn't considered that cancer could be the reason for this "episode", but I knew that something like this is your body's way of telling you something isn't right.

There was no way Steve was going into hospital without putting up a fight - "Forget I said anything", "I'll call the doctor if it happens again", "I'm not having anyone examining me". Within half an hour, we were at Bournemouth Hospital A&E being seen by a doctor.

Steve was examined by a few different people and had bloods and blood pressure checked. Everything looked fine, so we were both anxious when we were told he'd be staying in hospital overnight.

On Tuesday 26th July, following a flexi-sigmoidoscopy (long flexible tube with a camera on the end to look inside the bowel), Steve was allowed home. We were told "a number of polyps" had been found and would be sent off for biopsy and that we'd have the results in about 2 weeks. A week later, Steve got a call to say his results were in and he had an appointment on Friday 6th July to discuss them.

This is when he was diagnosed.

Steve had never even considered that he could have cancer - he said that not ONCE did the possibility cross his mind. He thought his diagnosis was "a number of polyps" and that this was the reason for his bleed.

Having dealt with my mother's cancer for 8 years and therefore recognising a lot of the medical terms used by doctors when they were referring to Steve, I had suspected from quite an early stage that this bleed was a sign of something a lot more sinister than we'd previously thought.

I hadn't been allowed the time off work to go with Steve for his results, so his parents went with him. Steve's dad had suffered from pancreatic cancer a few years previously and both parents also had their doubts about the diagnosis, although they never told him that.

Steve and I work for the same company, and he was due to come back into work around 4pm, after collecting his results. 4pm came and went... I was clock-watching and looking at the door, waiting for him to walk through it and tell me everything was fine, although deep down I knew that this was not going to happen. After what seemed like hours, I saw the Mike, the company director (and a very good friend of ours) come into the office and have a hushed conversation with one of the managers - I remember clearly thinking "They're going to tell me that I need to go home now, because Steve has cancer." I went light-headed and woozy, I saw my manager's face appear in front of me and I heard "Gina, Steve is at home, you need to go. Mike is going to take you."

I was silent for the 5 minute car journey home because I was trying to prepare myself for what I knew I was about to hear. I walked into the lounge and my heart broke. My 6ft 2 boyfriend looked at me with terrified Bambi eyes and said "I've got bowel cancer." He fell into my arms and all I could manage was "I know, but it's going to be okay."

Hello :)

Hi!

Thank you for visiting my blog... I started this to document my partner's journey in his fight against bowel cancer.

Despite his hesitance (to put it mildly), I dragged Steve to A&E when he lost about a pint of blood going to the toilet, and after about 10 days of various investigative procedures (flexible sigmoidoscopy, colonoscopy, internal endoscopic ultrasound along with the usual swabs and blood tests), he was diagnosed with bowel cancer.

This blog is an account of what we are going through day to day - not only from a sufferer's point of view but also from the eyes of a loved one.

Lots of love Xx