One of those horrible ones

Firstly, apologies for the huge delay in any sort of update - as you've probably guessed, it's not for a good reason.

We felt euphoric after Steve's last chemo and we were told he wouldn't need a CT scan until September/October time. For some reason though, the oncologist wrote to us about a week later and said he'd like to do one just to be sure. Good job he did.

The scan was about a week before a wedding we were attending in Italy, which we'd been looking forward to as a celebration of two of our closest friends get married, as well as a celebration of the end of a horrible time. We called the hospital several times as we were desperate for the results before we went away. We were told "your results are in, I have them here on my desk but you'll have to wait for your appointment" - this appointment was for June. We were at the beginning of May. After several more phone calls and some stern words, it was agreed that our results would be given over the phone the day before we went away.

Steve had a tumour on his lung.

Thankfully, this time wasn't like the first time where they told us he had cancer and made us wait 3 weeks to find out if he was going to be okay. They told us immediately that it was very small and very treatable which is amazing, but at the time even that didn't help the feeling of being kicked in the face.

Fast-forward from then to now, and I'm sitting in the living room waiting to take Steve to the hospital, ready for surgery tomorrow. The plan is keyhole and the surgeon is confident he will be able to get the whole tumour, plus a wide margin around the edge, using this procedure.

Steve is showering in antibacterial shower gel, which he has to do twice before surgery and three times afterwards, and he seems calm enough. I'm not quite so calm. I've been teary and shaky and sick, not that he knows because I've always hidden it well. I don't remember feeling this terrible last time, maybe because I didn't know what to expect then, or maybe just because my memories of last time are slightly distorted. Either way, I'm looking forward to getting the next few days out the way and moving forward. I want us to start enjoying the remaining wedding plans instead of them being tainted by this cloud hanging over us.

As usual, I've had the most amazing support from the lovely online community and will feel forever indebted to them because of it. I don't know what I would do without that constant love and friendship.

I will write again soon to update you on surgery but if you're reading this, please keep me in your happy thoughts, positive vibes and prayers.

Lots of love Xx

News

I realised a couple of days ago that I'd completely forgotten about my blog during the chaos of the last few weeks. Sorry about that!

Where to start... We've moved into a beautiful new flat and are absolutely loving it! It was extremely stressful - work suddenly became hectic just as we were moving, Steve went on a stag do the weekend we moved (so I pretty much moved in by myself) and then I was on the hen do the following week, so this weekend has been our first full weekend in the flat together so there's been a lot of sorting out to do.

Health-wise, a throwaway comment from Steve about his neuropathy at his last pre-chemo caused quite an uproar among the chemo team... Apparently it shouldn't last more than 4 or 5 days, however there had been three and a half weeks since his previous treatment and he was still getting severe pins and needles.

Even after Steve's first chemo it lasted 8 days... Nobody had ever told us it shouldn't last that long! (Steve was almost as annoyed at finding out our parking tickets could be invalidated, instead of spending about stupid money every time we went to the hospital)!

The doctors are slightly concerned it may have caused permanent nerve damage, and have continued the capecitabine but stopped any more oxaliplatin infusions, which he's thrilled about as it's the infusions that make him so poorly. Only time will tell if there has been lasting damage but at the moment he isn't at all worried about this. Steve was about to have Infusion #7 out of 8, but apparently it's rare to make it past 6 and still feel well enough for any more, so they were happy to stop it there.

I was at work when Steve was told. We work for the same company, so when he returned to work from his pre-chemo, he popped into my office to let me know.

Steve had a lot of time after surgery and after each chemotherapy to think about what's happened to him in the last year and begin to accept it. I've worked all the way through, and have never really allowed myself to overthink it, apart from within this blog. So I've always envisioned the day we're told we don't have to go through anymore chemotherapy - it felt like it would never come. I knew Steve would say his thank-yous and leave the hospital quite happy, and I would be a blubbering mess on the floor when the relief smacked me in the face.

This isn't far from what happened. In the middle of the office. Brilliant. Luckily I was very close to finishing work for the day...

I immediately burst into tears and crumbled into him, like he did to me when he told me he had cancer, and cried about how happy I was he would never have to go through that again and how proud I was of him.

Needless to say, until my outburst, Steve had been quite pleased. But of course, as soon as I cried, he did. Along with half the office watching us. What a performance!

In other news, I've booked a ticket to Bowel Cancer UK's Patient Day! Steve isn't coming as he feels it will be too difficult, which I can understand because the way he deals with things is to know as little as possible and try to ignore what's happened. I'm really looking forward to meeting some of the wonderful people I've met through various charities and on Twitter.

It's been a very surreal experience and feels like it has gone on forever, however now we're nearing the end it chokes me up to think about the things we've gone through together in the last year.

Going through this has taught us so much about ourselves, and made us stronger than we ever thought it was possible to be. I've met some incredible people and feel like a better person for the things it has encouraged me to do.

Our wedding day is fast approaching and every day we talk about our future together, the children we can't wait for and the things we want to do. It's strange that something we've feared for so long, has somehow made us fearless at the same time. We know now that we can handle whatever life throws at us, and we are so excited to start our next chapter!

Watch this space :)

Loads of love as always

Gina 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

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!)