I've wanted to write a post about this for a little while and didn't get round to it but I've just been prompted and wanted to write whilst it's still fresh in my mind.
I've written quite a bit about the experiences we've had with some doctors, oncologists etc regarding Steve's treatment - I've had numerous battles with lots of hospital staff due to not feeling like Steve was being taken seriously, not feeling like the side effects of treatment were being dealt with efficiently, and lack of referral for further tests where they were clearly necessary.
I stick by everything I have said with regards to these things - I still feel that he has been let down in some aspects, as have many other patients I've heard of, and I feel I've had to get more worked up than necessary on some occasions before anyone took notice and realised that I've done my research and (although not a medical professional), I sometimes know what's best for my husband.
That being said, I really wanted to write a quick note about the more positive experiences we've had too. We have genuinely had some outstanding care. The chemo nurses in general have always been lovely, caring and accommodating and it's clear they always do their best to make sure chemo runs as smoothly and comfortably as possible for all the patients.
The oncologist I mentioned a couple of posts ago had been fantastic recently too - I'm not sure if this is because I scared him with my outburst, or whether it's just coincidence, but he has shown real compassion for us since our appointment in February and always makes a point of trying to see us in person whenever possible, instead of us being assigned to any of his team.
What's prompted me to write this post today is this: we've just had a district nurse out the flush Steve's chemo lines before his penultimate session on Wednesday (I've been trained in doing this myself and have all the equipment but Steve had an appointment he had to get to today and the district nurses tend to be much quicker than me so we asked them to come this time!), and I have to say she was the loveliest lady! She was slightly late, so when she was finished, Steve had to quickly rush off to his appointment. I expected her to follow him out and leave as she had finished but she stayed and chatted with me for 25 minutes after Steve left, asking how we were both coping and if there was anything she could do for us. We're actually both coping extremely well, but the fact that she was so interested/concerned for our well-being reminded me that we're both humans, not just a patient and a carer!
So I know I'm a bit of a complainer when it comes to Steve's care sometimes, but I wanted to write a quick post just to show my appreciation for the NHS (who are amazing and who, quite frankly, we'd be screwed without) and in particular for the people who make a real difference and have made us feel like people. It will never be forgotten and we are so grateful to people like you who have the ability to make a horrendous experience that little bit easier. Thank you.
Lots of love Xx
Friday, 27 June 2014
Thursday, 26 June 2014
Another (very late) update!
I've done it again! Forgotten to keep you all updated! Ooooops... Sorry.
Just a quick one this time :)
Chemo has been pretty smooth sailing so far... At Steve's 6th pre-chemo, all hyped up thinking he was going in for his final one, he was told that because it was working so well, they wanted to increase treatment from 3 months to 6 months. Given how blasé some of the doctors have been in the past, we can't and won't complain about this, but Steve felt so deflated when he learned that he was only half way through. Although it hasn't been as bad as the oxy/cape regime last time, he's been totally exhausted and feeling sick all the time. He's also getting horrible acid reflux, sleepless nights, infections in his tunnel line... The list goes on. He's somehow managed to work full time through all of this and I have to say I really admire that!
Fast forward to now, and we have two sessions left out of twelve. He's had the occasional reaction to certain medications etc but in general all has been going well. He had a second scan and they're still really happy with the progress so here's hoping it will continue to work its magic!
That's all for now, please leave a comment or tweet me @GinaParker21 if you have any questions or comments :)
Lots of love Xx
Just a quick one this time :)
Chemo has been pretty smooth sailing so far... At Steve's 6th pre-chemo, all hyped up thinking he was going in for his final one, he was told that because it was working so well, they wanted to increase treatment from 3 months to 6 months. Given how blasé some of the doctors have been in the past, we can't and won't complain about this, but Steve felt so deflated when he learned that he was only half way through. Although it hasn't been as bad as the oxy/cape regime last time, he's been totally exhausted and feeling sick all the time. He's also getting horrible acid reflux, sleepless nights, infections in his tunnel line... The list goes on. He's somehow managed to work full time through all of this and I have to say I really admire that!
Fast forward to now, and we have two sessions left out of twelve. He's had the occasional reaction to certain medications etc but in general all has been going well. He had a second scan and they're still really happy with the progress so here's hoping it will continue to work its magic!
That's all for now, please leave a comment or tweet me @GinaParker21 if you have any questions or comments :)
Lots of love Xx
Sunday, 30 March 2014
Update...
I need to start by apologising for not writing for such a long time, and for leaving my blog on an uncertain note.
I'm going to pick up where I left off, but it's been a while and a LOT has happened so bear with me!
Steve's lung surgery was a huge success. I went to the hospital with his mum once we got the call to say he was back on the ward, and the difference in him compared to how he was after his last operation was unbelievable and a welcome relief. He was sitting up in bed, with his oxygen mask still on but a huge smile as soon as he saw us. He kept telling me how much he loved me and that all he thought about on the evening before surgery, and on the morning as he was being wheeled down, was seeing my in my wedding dress in 7 weeks time. He was full of all sorts of drugs but was so happy and upbeat.
Two nights later, he was allowed to come home. He recovered very quickly, as luckily the surgeon managed to use keyhole surgery to remove the tumour.
We had 7 lovely weeks leading up to our wedding, and had the most beautiful day imaginable. I'm still on cloud nine when I think about it, despite other things that have happened since.
Steve started to get severe chest pains and a "bubbling" sensation in his left lung around October time, and went to his GP. His GP listened with a stethoscope before promising Steve that if the cancer had returned, he would have been able to hear a blockage when listening, which he didn't hear. He sent Steve away with all the confidence in the world and no referral for further tests.
About a month later, Steve went back with the same pains, but worse. Again, the same GP told him there was definitely no problem and reassured him that the next routine scan would confirm this.
Steve had his next CT scan and we were petrified for results. However, when we saw the oncologist, he said there were two tiny specks on Steve's lung which he believed 99% were scar tissue from surgery. He arranged a PET scan to be sure, but filled us with confidence and told us he truly believed there was no reason for concern. He told us that if the two specks did turn out to be cancer, they would be easily treated with radio-frequency ablation (RFA) and that no further treatment would be required. He also said the pains Steve had would not be cancer related, even if the specks were cancer, because the specks were so minor.
We left feeling extremely positive - the fact that the GP and now the oncologist seemed so confident, especially following a scan, was really reassuring.
However, the PET scan took place and when we walked into the oncologist's office for results, I instantly knew there was something wrong.
When the oncologist asked how Steve had been, and Steve mentioned his chest pains, the oncologist delved a lot deeper and asked lots of questions about where the pains started and finished how often they occurred etc. I got fed up with all the questions - it was obvious something was wrong.
The oncologist explained that the PET scan had highlighted some activity which hadn't been picked up on in the CT scan. The specks were cancerous, but there was more than two. He didn't specify and we didn't ask - he just said "a few".
Steve sat shell shocked, in silence, and I got defensive and went into my usual robot survival mode. I asked what this meant with regards to treatment. I asked if RFA was still going to take place. He told me that ablation was no longer the best option. He said they were thinking of chemotherapy, and that they were thinking maybe a couple of weeks, and they were thinking bla bla bla. Why all the thinking and no doing?! It's an extremely rare occurrence, but I don't mind admitting that I totally lost the plot in the oncologist's office and my voice may have got a little bit louder and angrier than what people are used to. I'm not sure who was more shocked, Steve or the oncologist but I didn't care. This was my family. I told him that if chemotherapy was happening, it needed to happen IMMEDIATELY and that we wouldn't wait any more. I told him that given the damning CQC report on the hospital, I'd have thought this would be obvious. I asked him to look at me and tell me he was genuinely surprised the cancer was progressing given that Steve had to wait two months before each operation. I was greeted with silence, followed by "would you like me to call oncology now and send you down there right away to make an appointment for chemotherapy to start?" My response? "No thank you, because that's not my job, it's yours. Why hasn't it already been booked? You prepared us for amazing news today and now you tell us this, and you haven't even arranged treatment. We're going home, you can book chemo for this week and you can call me and let me know when we need to be here".
10 minutes after arriving home we got a call from oncology explaining that we had to go back the next day for a tunnel line to be fitted into Steve's chest so they could administer chemo this way. Chemo would be the following day, followed by a biopsy of the cancer the next day.
Steve started on Irrinotecan and 5FU, with Avastin, and after three of the six treatments, he had a CT scan to check the progress. He said after his second treatment that the pains and disappeared and that he really felt like it was working. HE WAS RIGHT. The results were amazing - the plan had been to use RFA on any remaining cancer once chemo was over, but he was told during pre-chemo before treatment number 4 that the chemo was working unbelievably well and that they don't even think RFA will be necessary because of how well he is responding. They are confident that the cancer will be gone by the end of chemo, and will do a scan to confirm. If not, they are still happy for RFA treatment to go ahead.
We are absolutely over the moon and are finally feeling confident after the first good scan results in almost 2 years.
That just about brings you up to date... I promise to not leave it so long next time!
Love love love xxxxxx
I'm going to pick up where I left off, but it's been a while and a LOT has happened so bear with me!
Steve's lung surgery was a huge success. I went to the hospital with his mum once we got the call to say he was back on the ward, and the difference in him compared to how he was after his last operation was unbelievable and a welcome relief. He was sitting up in bed, with his oxygen mask still on but a huge smile as soon as he saw us. He kept telling me how much he loved me and that all he thought about on the evening before surgery, and on the morning as he was being wheeled down, was seeing my in my wedding dress in 7 weeks time. He was full of all sorts of drugs but was so happy and upbeat.
Two nights later, he was allowed to come home. He recovered very quickly, as luckily the surgeon managed to use keyhole surgery to remove the tumour.
We had 7 lovely weeks leading up to our wedding, and had the most beautiful day imaginable. I'm still on cloud nine when I think about it, despite other things that have happened since.
Steve started to get severe chest pains and a "bubbling" sensation in his left lung around October time, and went to his GP. His GP listened with a stethoscope before promising Steve that if the cancer had returned, he would have been able to hear a blockage when listening, which he didn't hear. He sent Steve away with all the confidence in the world and no referral for further tests.
About a month later, Steve went back with the same pains, but worse. Again, the same GP told him there was definitely no problem and reassured him that the next routine scan would confirm this.
Steve had his next CT scan and we were petrified for results. However, when we saw the oncologist, he said there were two tiny specks on Steve's lung which he believed 99% were scar tissue from surgery. He arranged a PET scan to be sure, but filled us with confidence and told us he truly believed there was no reason for concern. He told us that if the two specks did turn out to be cancer, they would be easily treated with radio-frequency ablation (RFA) and that no further treatment would be required. He also said the pains Steve had would not be cancer related, even if the specks were cancer, because the specks were so minor.
We left feeling extremely positive - the fact that the GP and now the oncologist seemed so confident, especially following a scan, was really reassuring.
However, the PET scan took place and when we walked into the oncologist's office for results, I instantly knew there was something wrong.
When the oncologist asked how Steve had been, and Steve mentioned his chest pains, the oncologist delved a lot deeper and asked lots of questions about where the pains started and finished how often they occurred etc. I got fed up with all the questions - it was obvious something was wrong.
The oncologist explained that the PET scan had highlighted some activity which hadn't been picked up on in the CT scan. The specks were cancerous, but there was more than two. He didn't specify and we didn't ask - he just said "a few".
Steve sat shell shocked, in silence, and I got defensive and went into my usual robot survival mode. I asked what this meant with regards to treatment. I asked if RFA was still going to take place. He told me that ablation was no longer the best option. He said they were thinking of chemotherapy, and that they were thinking maybe a couple of weeks, and they were thinking bla bla bla. Why all the thinking and no doing?! It's an extremely rare occurrence, but I don't mind admitting that I totally lost the plot in the oncologist's office and my voice may have got a little bit louder and angrier than what people are used to. I'm not sure who was more shocked, Steve or the oncologist but I didn't care. This was my family. I told him that if chemotherapy was happening, it needed to happen IMMEDIATELY and that we wouldn't wait any more. I told him that given the damning CQC report on the hospital, I'd have thought this would be obvious. I asked him to look at me and tell me he was genuinely surprised the cancer was progressing given that Steve had to wait two months before each operation. I was greeted with silence, followed by "would you like me to call oncology now and send you down there right away to make an appointment for chemotherapy to start?" My response? "No thank you, because that's not my job, it's yours. Why hasn't it already been booked? You prepared us for amazing news today and now you tell us this, and you haven't even arranged treatment. We're going home, you can book chemo for this week and you can call me and let me know when we need to be here".
10 minutes after arriving home we got a call from oncology explaining that we had to go back the next day for a tunnel line to be fitted into Steve's chest so they could administer chemo this way. Chemo would be the following day, followed by a biopsy of the cancer the next day.
Steve started on Irrinotecan and 5FU, with Avastin, and after three of the six treatments, he had a CT scan to check the progress. He said after his second treatment that the pains and disappeared and that he really felt like it was working. HE WAS RIGHT. The results were amazing - the plan had been to use RFA on any remaining cancer once chemo was over, but he was told during pre-chemo before treatment number 4 that the chemo was working unbelievably well and that they don't even think RFA will be necessary because of how well he is responding. They are confident that the cancer will be gone by the end of chemo, and will do a scan to confirm. If not, they are still happy for RFA treatment to go ahead.
We are absolutely over the moon and are finally feeling confident after the first good scan results in almost 2 years.
That just about brings you up to date... I promise to not leave it so long next time!
Love love love xxxxxx
Thursday, 11 July 2013
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
Monday, 29 April 2013
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
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
Monday, 1 April 2013
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
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
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
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