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

Rollercoaster...

What a crazy month. I'm not sure where to start.

Firstly we are distraught at losing yet another Twitter friend, aged 30, to this horrible illness. Rest in peace lovely Hannah. I hope you can see everyone painting their nails for you, even the men. Love makes people do funny things.

This weekend I attended Beating Bowel Cancer's Patient Day and it was so lovely to finally meet lots of the people who have helped me through so much in the last year and the whole place was so full of love. There were some extremely inspirational people there and it really gave me hope. Thank you for that.

Steve finished his last dose of Capecitabine chemotherapy two days ago and I can't describe how we are feeling. Of course we're relieved and happy that it's over. I feel like a huge weight has been lifted. But I also feel like we've been handed a whole new challenge that we weren't at all prepared for: Life.

I feel awful being so anxious but I can't help it. For months we've had strict rules to live by and hospital appointments to keep. Now I feel like we've been thrown back into the big wide world and expected to get back to "normal" - normal is a stranger now. It's going to be a "new normal" and it scares me a bit!

Steve called his keyworker to try and find out if there is any further support available following his treatment. Apparently there isn't. I can't believe people go through so much and are then thrown out the door and expected to carry on with pre-cancer life.Steve still has some physical healing to do but emotionally we feel exhausted and that's hard to ignore. We'll keep looking, and maybe speak to his GP instead. MacMillan has also been recommended so we'll definitely look into that.

If this experience has taught us anything, it's that fate exists. We met right at the time Steve needed me, we had enough time to fall completely in love with each other. This gave us the hope and strength to be able to handle the challenges we were about to embark on together, and he has been there for me as much as I have for him. I may have said this before, but I believe the heaviest burdens are placed upon those who can carry their weight. We played the hand we were dealt. It got tough but I think we played it the best we could and I am proud of us.

There isn't much else to say, other than thank you again to those who have been there for us. It has been life-changing. To those friends who have melted away through our difficult times, I'm sorry you didn't feel strong enough to be there for us, however I will be there for you if you need me because it's partly down to you that I've learnt the importance of real friends.

Bye bye for now, I'll be back soon :)

Lots of love Xx

Bowel Cancer Awareness Month

Today is the first day of Bowel Cancer Awareness Month.

At the beginning of my blog, I wrote that I took Steve to the hospital within half an hour of his first symptom. I've since learned that this isn't completely true. I took him to the hospital when he had an explosion of blood going to the toilet after a weekend at the Isle of Wight Festival - the first symptom that I was aware of. I now know that he'd actually noticed small bits of blood going to the toilet in the months previous to his diagnosis, but it only ever happened after a night out, so he had always blamed alcohol and thought nothing more of it.

I have often written about the incredible support I have found through various charities and Twitter. It breaks my heart that since September, three of these lovely people have sadly passed away from this horrible disease.

It is so important to be firm and assertive with your doctor if you think something isn't right. In our case, we were lucky that Steve was admitted as an emergency and had the necessary medical attention immediately. I've heard of far too many people being dismissed by medical experts and their illnesses therefore becoming more advanced, and in some cases, incurable.

I'll keep it short for today but if you have come across this blog and it has made you think twice about a symptom you or someone you know has shrugged off, please don't ignore it. Even if it only happened once. It may be nothing, but it may be something. And if it's something, the sooner you know, the better.

That's it for now. Lots of love as always. Xx

@GinaParker21

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

Chemo #5 and Chemo #6... And life : )

Where has the time gone?! I've just realised I hadn't written a post after the last chemo session so this will be a bit of a catch-up.

Chemo #6 was yesterday... three quarters of the way through! GO US!

Steve was extremely tired afterwards and suffers a lot with the neuropathy, however apart from that he rarely has any complaints. From hearing other people's stories about chemotherapy and its' side effects, I have to say it seems we've got off quite lightly (bar Chemo #3 when it was absolutely horrendous).

The next two Chemo's are being delayed by a few days because we have stag/hen do's to attend, and then a wedding. Obviously we didn't want to jeopardise Steve's health at all, so we spoke to numerous doctors and nurses before deciding to delay the final two, however nobody seemed concerned about this. It's a shame the end of the course will be slightly delayed but Steve's lifelong friends are getting married in France and he wasn't going to miss that - this cancer has taken enough already!

In other news, our wedding plans are coming along beautifully and we are so excited. People would argue that there are zero positive things to come from being directly affected by cancer, but our wedding and our life afterwards is going to mean so much more to us because of it - we have been given a second chance and are absolutely going to make the most of it. While I'm on that topic, see our wedding website!! It's: http://steveandginagethitched.blogspot.co.uk/

I also want to say another huge thank you to everybody I've met through Twitter who have helped us through the most difficult times of our lives - Steve is apprehensive to speak to anybody else regarding his diagnosis which I can understand, however he's still benefited from your help massively because of the support you've given to m - it has helped me to be strong which in turn has helped him. I cannot explain the love I have for you all because of this. You're all inspirational :)


Lots of love Xx

Chemo #4

Hello!

I'm actually quite glad to say the last few weeks have been relatively uneventful.

After Steve's last chemo session, he was extremely apprehensive about having any more treatment, and I had a lot of sleepless nights worrying about what might happen if he didn't complete the course.

However, thanks to some of my amazing Twitter friends, I was able to convince him that we would get hold of some different anti-sickness drugs so he could carry on. I'm amazed I even managed to put the idea into his head because for 2 weeks he had been so against returning to that hospital.

Three days before chemo #4, I went with Steve to his "pre-chemo" session. Usually, this is a very quick height and weight measure, a blood test and then a short chat with a doctor to make sure he's healthy enough for the upcoming dose.

Neither of us like to cause a fuss, but I wasn't going to let Steve get that poorly again when I knew there were other solutions available - different drugs (Emend has been highly recommended), syringe drivers (this would go into Steve's hand on the morning of chemo and stay in for around a week - a district nurse would come out at the same time everyday to replace a 24 hour 'cartridge' releasing strong anti-sickness medicine) and other things. But every time I mentioned this to the doctor, he completely ignored me, turned to Steve and said "I'll just reduce your dose of chemo."

We weren't happy with this! I tried telling the doctor how sick Steve had been and that if he happened again this time, he would not come back. The doctor insisted that reducing the dose of chemo would mean this was unlikely to happen again, but I wasn't going to risk Steve getting that sick and then refusing to go back.

It took me a good half an hour, but by the time we left, a new plan had been put in place. The doctor still insisted the dose be reduced, but he would prescribe Emend for every session from now on, and in case this didn't work, a syringe driver would be on standby for every treatment so that 24 hour anti-sickness could be given if necessary.

I've been told by lots of people how effective Emend is, so I was quite concerned that the dose was going to be reduced - If the new anti-sickness was as good as everyone said, would the dose need to be lessened?

It didn't matter anyway because we got a call the next day to say another doctor had looked over the new plan and agreed that there was no need for the chemo to be reduced as the new plan would almost definitely be enough to ensure the sickness didn't happen again. And with the new drugs, chemo #4 was a success! No sickness, no feeling of sickness, and even the rest of his side effects seemed to disappear a few days quicker than they had on previous treatments. Yay! :)

A few days ago, I was thinking about Steve's operation and it suddenly hit me how far we've come. I felt like bursting into tears! It physically hurts to think about when I first saw him after surgery, hardly conscious with a blood pressure cuff on his right arm, a cannula in his left hand, a drain coming out of his back, a failed epidural also still attached, a catheter, and boots on his feet that puffed up constantly to prevent blood clots. I never missed a visiting hour, although during the evening ones, the ward staff often let me stay late because Steve seemed much happier to them when I was there. Coming home to an empty house knowing that he would be there on his own, uncomfortable and wide awake all night, used to break my heart (and I'm holding back tears now just thinking about it!) - the hardest part for me was not being able to be there when it was all I wanted. Even if I couldn't do anything, I just wanted to be there to talk to him and hold his hand and it devastated me that I couldn't.

When I think now about the fact that we're half way through chemo and planning our wedding, it makes me wonder where all that time went! People ask me how we even get through each day, and for me, the honest answer is adrenaline. We have to get through each day together because the alternative is not an option for us.

I really believe that the heaviest burdens are placed upon those who can handle their weight, and when I say this experience has taught me things about myself that I never knew before, that's exactly what I mean and I know Steve feels the same.

Thank you so much to everyone who has advised different things for us and encouraged me to be persistent with the doctors, you have been lifesavers.

Lots of love to you all.

Talk soon!

Xx

Chemo #3 and recent things

Steve's 3rd chemotherapy session was nearly 3 weeks ago which means his next one is this Saturday.

After the last one, to say we're not looking forward to it is an understatement. Within seconds of the cannula being removed, Steve had to rush to the toilet to be sick, was sick on the way home from the hospital, and was sick every 15 minutes for the next 6 hours.

After about an hour of this, I called for a district nurse to administer an anti-sickness injection - we waited 4 hours for her to arrive, all the time Steve still being uncontrollably sick, and when she did arrive she discovered we hadn't been given the correct paperwork signed by a doctor to authorise her giving the injection. So she went away, and returned another 2 hours later having gone to the hospital herself to have something signed.

It was heartbreaking to see him so poorly - those few days following on from Chemo #3 were definitely some of the most emotional days we've had since the diagnosis.

Steve started to lose confidence in chemotherapy after being reassured so many times beforehand that any side effects would be treated immediately and this clearly not being the case this time. We've spoken to the doctors and nurses who have promised us this will not happen again, and have some different anti-sickness drugs on standby for Saturday and every treatment thereafter. I have also received some advice from friends regarding alternatives, e.g. to provide him with 24 hour anti-sickness among other things. (While I'm on that topic, thank you so much to everyone who has given me advice and recommended different things, I really do take it on board and discuss it with the doctors and nurses!)

After this Saturday, Steve will be half way through his intravenous sessions of chemo, so we are looking forward to reaching that milestone and being able to count down the remainder! Definitely going to plan an "end-of-chemo" party when it's all over!

Saying goodbye to 2012 and welcoming 2013 last night was strangely emotional. I'm struggling to put into words how I feel about the past year because it's been so full of love and happiness yet fear and heartbreak all at the same time.

I feel so lucky to have met my amazing husband-to-be and have had the time of my life with him, and I've also been heartbroken and scared more than I ever thought it possible to be. I've pictured spending my life with this person I love so much, and then I've had to picture it maybe not working out that way. I've learnt things about myself that I never would've known had this not happened to us, and I've been inspired by the selflessness of our amazing friends and family during the most difficult time of our lives. I've been disappointed in friends who I haven't heard a single word from since Steve's diagnosis in July, and massively appreciative of those who have been by our sides throughout. There are aspects of the past year that will still break my heart in 50 years time, but others that I will look back on for the rest of my life with the most love and happiness a person can possibly feel.

2013 is the year we are cancer-free, happily married, and ready to start our lives together properly. Here's to the next big adventure.

Xx