Update :)

I haven't written for a little while so thought I'd give you all a quick update!

Steve starts his chemotherapy on Saturday 3rd November. The drugs he will be given are:

• Oxaliplatin
• Capecitabine (Xeloda)

We've been told any side effects that occur will be treated as soon as physically possible which is reassuring, and although Steve has entered the SCOT trial (Short Course Oncology Therapy) we will not find out until the day of his first chemo whether or not he will be having 6 months of treatment or just 3. In the meantime he will need a CT scan and some other tests.

We are both apprehensive but also really keen to get chemo out the way so we can have a bit of normality back and get on with our lives - my brother moved to New Zealand recently and has a 2 week old baby, so when this is all over we are looking forward to booking a 3 week holiday over there!

The day of Steve's first chemo is also the day of our nephew's Christening, so we're hoping he won't be suffering too much so we're still able to make it - can anyone tell me if this is feasible?! Are we being naive in hoping he'll feel well enough to attend after session 1 of chemotherapy?

In other news, I have moved departments at work which makes me super happy! I really like the company I work for, but am definitely in need of a new challenge. I now have a lot more responsibility and need to know a lot of technical information which is a learning process, but I'm really excited about this. It also means I am working 8am - 4pm Monday to Friday, instead of 11am - 8pm Monday to Friday and every other weekend, which is amazing for us - also the fact that Steve's chemo will be 3-weekly on a Saturday means I can always be there with him, whereas if I hadn't moved departments this would not have been possible.

And one more thing... It's my birthday soooooon! Thursday 25th October will be my 22nd birthday. I'm off work Thursday to Sunday, and I know Steve is planning some sort of getaway but that's all I know! All a big mystery, so I'll fill you in on that this time next week! :)

Til then, lots of love & hugs.

Xx

Chemo Plan: Take 1

Lots of appointments today!

• Meeting with surgeon Mr H to check wounds and have stitches removed
• Meeting with stoma nurse
• Meeting with oncologist to find out the chemo plan

That's what we thought anyway...

First two appointments were fine, although some skin had started to grow over Steve's stitches so they were quite painful to remove!

The meeting with the oncologist was the one we were most apprehensive about. It was quite a shock to hear Steve would need chemo in the first place so we were looking forward to hearing the plan and being able to prepare.

But the oncologist didn't have much information for us apart from that chemo would be 3 weekly, for either 12 weeks or 24 weeks depending on whether or not Steve wants to take part in a trial meaning the cycle would be shorter than the standard.

Steve wants to be fit for my birthday at the end of October, so the oncologist said it's likely chemo will start the following week - about 4 weeks from now. No dates or names of drugs, and it felt like he didn't have a lot of time for us so we left quite quickly not knowing a lot more than we had when we arrived.

So not much to update everyone on really, but as soon as I do you'll all know about it :)

Just wanted to send all my love to my Twitter BC friends too... I'm completely overwhelmed by the love, support, kind words and help I've received from everyone I've been in touch with via Twitter, it's been absolutely incredible! I've noticed recently that some of my closest friends seem to have disappeared since Steve's diagnosis but people I've never even met have been unbelievable, so I'm really grateful for that and want to let everyone know how amazing they all are! Massive hugs!

Lots of love Xx

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!)