Reflections

We go into hospital tomorrow for Steve's first infusion of the trial drug he's going to be on for the next 8-16 weeks. With that coming up, and having re-read some of my earlier blog posts lately, I've been reflecting quite a bit on the past few years.

To be honest, I've spent the past couple of months blissfully trying to ignore everything health-related that's been going on so we could focus on the baby, and it's been quite nice. That horrible dark cloud of dread has come over me every time someone has asked about treatment, but I know it's totally unrealistic to not think or talk about it, and that we're really lucky to have so many people around us who care. It's never been far from my mind, however much I've tried to ignore it recently.

I also feel guilty for trying to forget about it for a while - I always preach about how we need to talk more about bowel cancer to raise awareness and make sure people know what to look for and how important it is to discuss, so I'm disappointed in myself for not practicing that recently.

Steve's illness came up in conversation with one of the midwives during my pregnancy when I was admitted to hospital with a virus. She was putting a cannula into my hand to give me some fluids as I was severely dehydrated and Steve casually mentioned how strange it was to watch, considering I'd never had a cannula before and he'd had plenty. Obviously, this led the midwife to question why he'd had so many and we ended up discussing his entire story from the beginning until now (which we are absolutely fine with and don't mind discussing it at all - again, the more people who know, the better). The look of shock, horror, sympathy and utter confusion on her face as we spoke reminded us how abnormal our situation appears to be. It's become our "normal" and we are used to living with it on a daily basis, and we very quickly forget what a shock it is to others who may not have experienced something like this before.

We were discussing this over lunch recently when Steve was on paternity leave. What is so unusual about the position we are in? If ever it comes up in conversation with a total stranger, they are shocked and interested to know all about it. There have even been occasions where we've met friends of friends for the first time, and as soon as either of us introduces ourselves, the person knows all about us and has lots of questions. Why? Everybody wants to know everything... How old is he? He looks far too young to have cancer... Does it run in the family? It seems so odd that this has happened to someone of his age... How was he diagnosed? Most people don't know the symptoms...

The sad thing about it is, it's not unusual at all. Cancer affects 1 in 3 of us, and although most of them are around the age you might expect cancer to become apparent, a lot of them aren't. Steve was 30 when he was diagnosed, and he isn't the youngest person I know who's had cancer.

It's easy to sometimes fall into a self-pitying state of mind and wonder, why us? But really, why not? Cancer is sadly so common now and we never stay self-pitying for long - we make sure to remind each other that we are so, so fortunate Steve is okay and even though we're still very much in the battle, we are grateful that his cancer was caught early enough that all of the treatment he's had so far has even been an option to try.

Medical advances are happening all the time but prevention is ALWAYS better than cure. It's imperative that people are made aware of the signs and symptoms, and that they speak up to their GP... If you're not satisfied with their response, keep pushing, request to see a different GP, and do not stop until all of the appropriate screening has taken place. We're lucky that Steve was referred for the right testing immediately, but I know of far too many cases where people are considered "too young to get bowel cancer" and are sent away with no testing. This DOES happen to people of all ages, and I've seen far too many families torn apart because they've been misdiagnosed or not taken seriously. It might be slightly embarrassing but it's worth it, either for your peace of mind if it's nothing sinister, or for an early diagnosis so the relevant treatment can go ahead. Don't risk your health because you're embarrassed. It's absolutely not worth it.

A quick reminder of the signs and symptoms to look out for:
- Weight loss
- Weight gain
- Bleeding from bottom and/or when going to the toilet
- Pain or a lump in tummy
- Extreme tiredness
- A change in bowel habits
These symptoms may not mean cancer, but occasionally they do so it's always worth getting checked!

I hope anyone who comes across this and has any questions or comments will contact me - GinaParker21 on Twitter - I'm always interested to hear people's perspectives and will be as helpful as I can to anyone who needs it! :)

Lots of love always Xx

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.