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Monday, 25 March 2013

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

Sunday, 17 February 2013

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

Sunday, 20 January 2013

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

Tuesday, 1 January 2013

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

Monday, 26 November 2012

Happier :)

With a new week comes, hopefully, a new attitude -I've been very tired today, probably down to the fact that Steve's anti-sickness drugs come with "euphoria" as a main side effect, resulting in me being nudged several times between 2.00 and 6.00 this morning, along with the words "what shall we do?!"

It's the middle of the night. SLEEP is what we will do. But I just can't help finding it endearing, and end up responding with something like "word association game! Duck."

Needless to say, I am exhausted. But I feel a bit better this week, and have realised that even if we're wide awake throughout the night because of the weird and not so wonderful side effects, I don't resent him for one second, and we always end up in fits of giggles over something regardless of what time it might be.

I'm quite looking forward to tomorrow. Steve is one of those annoying people with a birthday on 22nd December, so tomorrow I'll be starting Christmas and birthday shopping. The only problem is I want to buy him everything. Things I know he wants (hardly anything) as well as things I know he'll probably have no use for at all. I'm really excited! Not that this has any relevance to... anything really. I'm just excited and wanted to share. Yay!

Just a short one today because I have a chocolate orange in the fridge and a lovely euphoric man pestering me for entertainment. I just wanted to let everyone know that we're both okay, because I was such a mess yesterday... but really, we're fine :)

I love you all. Xx

Sunday, 25 November 2012

Chemo #2 and a bit of a whinge...

Hmmmm... Interesting couple of weeks.

Chemo #2 happened yesterday - Steve feels slightly worse this time than he did the first round, but is more fed up than anything. He's irritated that he can't even open the fridge without his face immediately stinging with pins and needles, and that we couldn't go for lunch with all our friends today because he feels sick and cold. He's not in loads of pain thank goodness, just very uncomfortable.

The chemo ward has to be the chirpiest ward at the Royal Bournemouth Hospital though - the fun we have! Honestly. It's not our first choice of places to be at 9.00 on a Saturday morning, but we already feel like we've made friends out of the staff and other patients. Everyone is so chatty and upbeat, you wouldn't think they're all being pumped full of chemicals.

I've been ridiculously emotional this last week and I have absolutely no idea why. Nothing out of the ordinary has happened, but every day I've just wanted to scream.

I'm keeping as calm and composed as possible because the last thing I want is for Steve to know that I've had a tough couple of days. He is my priority and I refuse to let him worry about me, he's got enough on his plate.

I don't know if I was just getting worked up over the looming chemotherapy, knowing that my boy would be poorly for a good 10 days - or if it was people constantly wanting to know every single detail of our situation. Or if it's the pressure of trying to plan a wedding, move house and beat cancer all at the same time.

Whatever it is, I feel like I've hit breaking point this week. Except I haven't. I know I haven't - and I know I won't, because I need to keep being okay for my Steve. I just feel really angry with cancer.

I feel angry that me and Steve had only been together a few months when this thing reared it's head. I'm angry that the person I love more than anything in the world has to suffer. I'm angry that I can't do anything but sit and watch while he suffers. I'm angry that we have to plan everything we do for the next 6 months around chemo. I'm angry that we can't get a decent night's sleep anymore. I'm angry that I get sympathetic looks around the office (although I'd probably be the worst culprit for that if someone else was in our situation). I'm angry that just as some happiness came my way, someone up there decided they might not let me have it after all.

I don't want to sound like I'm just having a moan though - there are also a million things I'm so thankful for. I'm thankful I've found my best friend and love of my life, cancer aside. I'm thankful that this cancer can, and will be beaten. I'm thankful to all the amazing people who have helped us in every way possible. I'm thankful for the incredible support network I've found because of this - people I truly consider my friends. I'm thankful for the things I've learnt about myself over the last few months. I'm thankful that my boy will never doubt how much I love him.

It breaks my heart that this is happening to us, but we're a team and I know we'll get through it.


Friday, 9 November 2012

Chemo and other fun...

Oh my goodness, lots to catch up on!

My birthday getaway turned out to be a trip to a 5* hotel in Chelsea with a lovely shopping trip (when I grow up I want to live in Selfridges) which was amazing, although the best part of my surprise was a beautiful engagement ring! The last couple of weeks have been spent visiting venues and buying every wedding magazine I can find. I'm a very excited girl!

Chemo started last Saturday - I could feel how nervous Steve was on the way to the hospital but yet again he amazed me with his courage and positive attitude.

It was all a bit nerve wracking and there was a lot of information to take in, but we were out of the hospital within 2 and a half hours - he'd managed fine until the last 15 minutes where the cannula was causing him a lot of pain but other than that he was brilliant.

He's since had chronic pins and needles everywhere including in his throat. He's been very sensitive to the cold and has felt quite sick, but that's all so far and the last couple of days he's felt much better.

It's horrible leaving in the mornings to go to work when he isn't well - I've been putting all his clothes, including gloves, socks and hat on the radiator as soon as I get up so they're nice and toasty for him when he gets up, making hot water bottles and boiling a full kettle before I leave so if they get too cold he won't have to wait long until there is plenty of hot water for a new one. I'm so paranoid that he's going to get too cold and have these horrible pins and needles!

Not much more to update you all on at the moment, will write again after next chemo!

Lots of love Xx