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
Showing posts with label capecitabine. Show all posts
Showing posts with label capecitabine. Show all posts
Monday, 29 April 2013
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
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, 21 October 2012
Update :)
I haven't written for a little while so thought I'd give you all a quick update!
Steve starts his chemotherapy on Saturday 3rd November. The drugs he will be given are:
We are both apprehensive but also really keen to get chemo out the way so we can have a bit of normality back and get on with our lives - my brother moved to New Zealand recently and has a 2 week old baby, so when this is all over we are looking forward to booking a 3 week holiday over there!
The day of Steve's first chemo is also the day of our nephew's Christening, so we're hoping he won't be suffering too much so we're still able to make it - can anyone tell me if this is feasible?! Are we being naive in hoping he'll feel well enough to attend after session 1 of chemotherapy?
In other news, I have moved departments at work which makes me super happy! I really like the company I work for, but am definitely in need of a new challenge. I now have a lot more responsibility and need to know a lot of technical information which is a learning process, but I'm really excited about this. It also means I am working 8am - 4pm Monday to Friday, instead of 11am - 8pm Monday to Friday and every other weekend, which is amazing for us - also the fact that Steve's chemo will be 3-weekly on a Saturday means I can always be there with him, whereas if I hadn't moved departments this would not have been possible.
And one more thing... It's my birthday soooooon! Thursday 25th October will be my 22nd birthday. I'm off work Thursday to Sunday, and I know Steve is planning some sort of getaway but that's all I know! All a big mystery, so I'll fill you in on that this time next week! :)
Til then, lots of love & hugs.
Xx
Steve starts his chemotherapy on Saturday 3rd November. The drugs he will be given are:
- Oxaliplatin
- Capecitabine (Xeloda)
We've been told any side effects that occur will be treated as soon as physically possible which is reassuring, and although Steve has entered the SCOT trial (Short Course Oncology Therapy) we will not find out until the day of his first chemo whether or not he will be having 6 months of treatment or just 3. In the meantime he will need a CT scan and some other tests.
We are both apprehensive but also really keen to get chemo out the way so we can have a bit of normality back and get on with our lives - my brother moved to New Zealand recently and has a 2 week old baby, so when this is all over we are looking forward to booking a 3 week holiday over there!
The day of Steve's first chemo is also the day of our nephew's Christening, so we're hoping he won't be suffering too much so we're still able to make it - can anyone tell me if this is feasible?! Are we being naive in hoping he'll feel well enough to attend after session 1 of chemotherapy?
In other news, I have moved departments at work which makes me super happy! I really like the company I work for, but am definitely in need of a new challenge. I now have a lot more responsibility and need to know a lot of technical information which is a learning process, but I'm really excited about this. It also means I am working 8am - 4pm Monday to Friday, instead of 11am - 8pm Monday to Friday and every other weekend, which is amazing for us - also the fact that Steve's chemo will be 3-weekly on a Saturday means I can always be there with him, whereas if I hadn't moved departments this would not have been possible.
And one more thing... It's my birthday soooooon! Thursday 25th October will be my 22nd birthday. I'm off work Thursday to Sunday, and I know Steve is planning some sort of getaway but that's all I know! All a big mystery, so I'll fill you in on that this time next week! :)
Til then, lots of love & hugs.
Xx
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