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

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.