Hi guys,
Since I last wrote, there have been a few changes happening and I'm just about ready to go into it all.
On Tuesday 28th July, Steve went to the hospital for his pre-chemo appointment ready for treatment on the Friday.
We were right in the middle of moving house so we decided I'd stay at home with Esmée and keep packing whilst he went to his appointment. These appointments are never eventful and the clinic is usually running late so it seemed pointless for us all to go.
When Steve came to meet me at the house afterwards, I instantly knew something was wrong.
They had told us previously that Steve's breathlessness was caused by fluid on the lungs, which would need to be drained at some stage.
However, at this appointment, the doctor told Steve that the X-ray showed the treatment had stopped working altogether and the cancer had quite drastically spread and grown, now covering huge portions of both lungs.
We were in complete shock - the last CT scan had shown that the disease was stable and the plan was to continue with it indefinitely.
The doctor mentioned a second clinical trial which Steve may be eligible for, and told him she was cancelling the current trial (Xilonix) with immediate effect.
We spent the rest of the day feeling as though we were floating, but not in that nice, dreamy way. As though the world had disappeared from beneath us. It was like we were drowning or struggling to breath. Anyone know has been through something like this will know the feeling.
We travelled the couple of miles to Steve's parents house to break the news, and of course they were just as devastated. Steve's brother, sister in law and nephews were also there, so we all rallied round for a chat, told them everything we knew and promised each other we must all stay strong and positive.
We arrived home around 5.30pm, I think.
At around 8pm, I noticed I had a missed call from my maternal Nan. I called her back, to be told that my mum was not expected to make it through the night. She had been in hospital since Sunday and had taken a bad turn. Her sodium levels were extremely low and a salt drip didn't appear to be helping. The doctors decided to stop the salt drip.
Steve and I hardly slept, and in the morning, when I heard my mum had improved slightly over night, we decided to go and visit her.
We were surprised by how well she seemed - thankfully, she didn't know quite how poorly she was, and so was in good spirits. She was chatty, playful with Esmée and was making jokes.
She was moved to the hospice a few days later and we're waiting to find out whether she'll stay ther for the duration of her life, or whether she'll go home or to a different sort of care home for a few weeks before going back to the hospice. We hope she can either stay where she is, or go to another care home for a while, as she's been getting confused and is quite nervous being home alone when her partner is at work. My nan drops in to see her, but my grandad has late stages of Parkinson's disease and so he also needs constant care from her.
We had a meeting with our oncologist this week regarding the plan of action for Steve's treatment, but we didn't find out anything new. We had some clarification on what we heard last week, and we are now waiting for scans and some more information on the trial.
Hopefully we won't have to wait too long and I can update again soon
Thank you so much for the lovely messages and continued support, it's very much appreciated!
Lots of love Xx
Showing posts with label chemo. Show all posts
Showing posts with label chemo. Show all posts
Sunday, 9 August 2015
Wednesday, 12 November 2014
Another (long) update!
Hi all,
I am such a rubbish blogger... I always forget to blog!
Loads has been going on since my last posts so I'll try to remember as much as I can.
In July we hosted a cheese and wine night on a Saturday evening for some friends. We'd been wanting to do it for a while but with chemo and other things going on we hadn't got round to it. It was a really lovely night and most people (not including me!) had quite a bit to drink.
The next day, Steve was feeling really sorry for himself - obviously we put it down to having had a few drinks after a good couple of months of not drinking. He spent most of Sunday asleep, which was unlike him but I wasn't worried because again, it seemed obvious that it was due to a night involving lots of alcohol after being sober for a while. He still felt awful in the evening so we had an early night and I told him to try and sleep it off some more.
In the middle of the night, I woke up to our whole bed shaking. I sat up and realised it was Steve... He was shivering like nothing I've ever seen before but still seemed very sleepy. I was extremely worried and woke him up to check he was okay. He told me he felt freezing cold but when I turned on the light to find him an extra blanket, I saw that he was dripping with sweat. I put the extra blanket over him anyway because he said he felt so cold, but I stayed awake whilst he went back to sleep because I was too concerned to get anymore sleep myself.
On Monday morning he felt the same - still shivering and complaining that he was freezing cold, but still sweating profusely.
We called the chemotherapy ward at our local hospital where Steve had undergone all of his treatment, and asked their advice. They told us he would need to go immediately to the Cancer Centre at another local hospital; one we'd never been seen at or treated at before. They asked if we'd like an ambulance sent to get us there right away but he seemed okay at this point, so we said no and made our own way there.
On the way to the hospital, Steve deteriorated massively. I had to keep shaking his shoulder and shouting at him to try and keep him awake - he was slipping in and out of consciousness and was completely delirious and hallucinating.
I had to run and get a wheelchair when we arrived at the hospital because there's no way Steve could stand, let alone walk to the department we needed to be in.
He was hooked up to some general intravenous antibiotics and fluids to hydrate him whilst I answered lots of questions. I kept reiterating that he'd been drinking over the weekend and was desperately hoping that this was the cause of his condition, and nothing more sinister.
The doctor kept talking to Steve to see if she could ascertain what sort of state he was in, and it was apparent within a few seconds that something was seriously wrong.
They took lots of blood cultures and sent them off for testing. He was sent for an x-ray, which showed nothing we weren't already aware of.
He seemed to perk up a bit and feel slightly better throughout the day, and he was sent down to a private room on a different ward in the Cancer Centre where he would have to stay. As I was getting ready to leave, he seemed to get worse again - severe shivering/rigor and complaining he was freezing cold despite feeling extremely hot to the touch and sweating.
I called for help and within a few seconds the room filled with nurses who were pulling off his bed covers, putting pillow cases full of ice all over his body and on his head, and shouting that his temperature was at 41 degrees. Two nurses leant over me to throw open the windows. One of them hurled a fan to me and told me to plug it in and hold it on his face. I cried that I didn't want to - he was almost in tears himself at how freezing cold he felt and was begging them all to leave him alone and give his blankets back. They even took his socks off. I felt totally heartbroken that he was suffering so much and they seemed to be making it worse. Very reluctantly I sat by his side with one hand stroking his face talking gently to him, and the other hand holding the fan. I was holding back tears. By this point, he was throwing up and his face and body were bright red.
After about an hour, his temperature had dropped slightly, although it was still around 40 degrees C, and visiting hours were over. As I left to go home (still in tears and petrified), one of the nurses stopped me - seeing I was pregnant, she gave me a really sad, sympathetic look before giving me a huge hug and writing down all the different phone numbers I could call to find out his condition at any time.
I called the second I got home - he'd been sick again since I left but was improving slowly.
I cried myself to sleep, eventually drifting off through sheer exhaustion at around 1am, and I called them again when I woke at about 4am. They told me nothing much had changed overnight - they were still monitoring his temperature and still had IV fluids going. They didn't have results for the blood cultures yet so the antibiotics were still generic ones.
Tuesday wasn't quite as bad, although still very worrying and it didn't look like Steve was any closer to coming home.
They got the blood results back and told us Steve had a Staphylococcal infection in his blood. It had entered through the site where the tunnel line was positioned for chemotherapy - the line leading directly into his heart. This sort of infection can shut down the vital organs, and very quickly. I was petrified that his heart could shut down at any moment. Luckily, Steve was unaware of this so was able to stay calm and focus on resting.
The antibiotics were changed to much stronger and more targeted ones for this particular infection.
After a few more days, Steve was eventually feeling much better.
They decided not to give him his last chemotherapy session and to remove the tunnel line on Thursday, before letting him come home. This would prevent any further infection. They felt the small chance of benefit from the final chemotherapy session (it becomes less effective towards the end) was outweighed by the risk of further infection if they were to keep the tunnel line in for the remaining two weeks.
Two doctors performed a quick procedure to remove the line and we were very happy to see the back of it!
He was discharged from hospital later that day with lots of oral antibiotics to continue with to ensure the infection was completely gone.
On our way out, that same nurse who had given me a sad look and a cuddle said something neither of us will ever forget - "you had us all scared for a while there, we had crash teams at the ready outside the door of your room - it really was touch and go for you these last few days" - it sent shivers down our spines and I still feel sick thinking about it. I hadn't realised how close I'd come to losing the love of my life and I never want to feel that feeling again. We don't speak about it because it upsets us both, but this blog was always intended to be an honest account of what we're going through and the feelings we've felt, and I want it to stay that way.
I was told to continue monitoring Steve's temperature every few hours for about another week. Any sign of it heading above 37 degrees C and we were to go straight back in.
We were both really grateful to have some time off from treatment and we had a lovely rest of the summer.
We now have a 5 and a half week old beautiful little girl called Esmée! She is absolutely our world and we're besotted. She is definitely a Daddy's girl. He adores her and she looks so much like him! She's brought such an amazing joy into our lives and nothing makes me happier than seeing my husband cuddling our little girl and staring into her eyes. It melts my heart (and I have to keep deleting things from my phone to make room for photos - I already have about 600 pictures of her, mostly with her dad!).
Steve will soon be starting on a trial drug, the main aim of which is to eradicate the symptoms of cancer (pain, fatigue, nausea etc) and to build muscle mass, enabling him to better fight the disease. It also aims to prevent the cancer from spreading anywhere else in the body, keeping it contained to his lungs. Following this, it's likely he will continue with more chemotherapy and possibly other treatments.
His oncologist is really excited about this new drug so we have high hopes.
Apologies for the 5 months of quiet since my last posts, I'll try not to leave it so long next time!
Lots of love as always
Xx
I am such a rubbish blogger... I always forget to blog!
Loads has been going on since my last posts so I'll try to remember as much as I can.
In July we hosted a cheese and wine night on a Saturday evening for some friends. We'd been wanting to do it for a while but with chemo and other things going on we hadn't got round to it. It was a really lovely night and most people (not including me!) had quite a bit to drink.
The next day, Steve was feeling really sorry for himself - obviously we put it down to having had a few drinks after a good couple of months of not drinking. He spent most of Sunday asleep, which was unlike him but I wasn't worried because again, it seemed obvious that it was due to a night involving lots of alcohol after being sober for a while. He still felt awful in the evening so we had an early night and I told him to try and sleep it off some more.
In the middle of the night, I woke up to our whole bed shaking. I sat up and realised it was Steve... He was shivering like nothing I've ever seen before but still seemed very sleepy. I was extremely worried and woke him up to check he was okay. He told me he felt freezing cold but when I turned on the light to find him an extra blanket, I saw that he was dripping with sweat. I put the extra blanket over him anyway because he said he felt so cold, but I stayed awake whilst he went back to sleep because I was too concerned to get anymore sleep myself.
On Monday morning he felt the same - still shivering and complaining that he was freezing cold, but still sweating profusely.
We called the chemotherapy ward at our local hospital where Steve had undergone all of his treatment, and asked their advice. They told us he would need to go immediately to the Cancer Centre at another local hospital; one we'd never been seen at or treated at before. They asked if we'd like an ambulance sent to get us there right away but he seemed okay at this point, so we said no and made our own way there.
On the way to the hospital, Steve deteriorated massively. I had to keep shaking his shoulder and shouting at him to try and keep him awake - he was slipping in and out of consciousness and was completely delirious and hallucinating.
I had to run and get a wheelchair when we arrived at the hospital because there's no way Steve could stand, let alone walk to the department we needed to be in.
He was hooked up to some general intravenous antibiotics and fluids to hydrate him whilst I answered lots of questions. I kept reiterating that he'd been drinking over the weekend and was desperately hoping that this was the cause of his condition, and nothing more sinister.
The doctor kept talking to Steve to see if she could ascertain what sort of state he was in, and it was apparent within a few seconds that something was seriously wrong.
They took lots of blood cultures and sent them off for testing. He was sent for an x-ray, which showed nothing we weren't already aware of.
He seemed to perk up a bit and feel slightly better throughout the day, and he was sent down to a private room on a different ward in the Cancer Centre where he would have to stay. As I was getting ready to leave, he seemed to get worse again - severe shivering/rigor and complaining he was freezing cold despite feeling extremely hot to the touch and sweating.
I called for help and within a few seconds the room filled with nurses who were pulling off his bed covers, putting pillow cases full of ice all over his body and on his head, and shouting that his temperature was at 41 degrees. Two nurses leant over me to throw open the windows. One of them hurled a fan to me and told me to plug it in and hold it on his face. I cried that I didn't want to - he was almost in tears himself at how freezing cold he felt and was begging them all to leave him alone and give his blankets back. They even took his socks off. I felt totally heartbroken that he was suffering so much and they seemed to be making it worse. Very reluctantly I sat by his side with one hand stroking his face talking gently to him, and the other hand holding the fan. I was holding back tears. By this point, he was throwing up and his face and body were bright red.
After about an hour, his temperature had dropped slightly, although it was still around 40 degrees C, and visiting hours were over. As I left to go home (still in tears and petrified), one of the nurses stopped me - seeing I was pregnant, she gave me a really sad, sympathetic look before giving me a huge hug and writing down all the different phone numbers I could call to find out his condition at any time.
I called the second I got home - he'd been sick again since I left but was improving slowly.
I cried myself to sleep, eventually drifting off through sheer exhaustion at around 1am, and I called them again when I woke at about 4am. They told me nothing much had changed overnight - they were still monitoring his temperature and still had IV fluids going. They didn't have results for the blood cultures yet so the antibiotics were still generic ones.
Tuesday wasn't quite as bad, although still very worrying and it didn't look like Steve was any closer to coming home.
They got the blood results back and told us Steve had a Staphylococcal infection in his blood. It had entered through the site where the tunnel line was positioned for chemotherapy - the line leading directly into his heart. This sort of infection can shut down the vital organs, and very quickly. I was petrified that his heart could shut down at any moment. Luckily, Steve was unaware of this so was able to stay calm and focus on resting.
The antibiotics were changed to much stronger and more targeted ones for this particular infection.
After a few more days, Steve was eventually feeling much better.
They decided not to give him his last chemotherapy session and to remove the tunnel line on Thursday, before letting him come home. This would prevent any further infection. They felt the small chance of benefit from the final chemotherapy session (it becomes less effective towards the end) was outweighed by the risk of further infection if they were to keep the tunnel line in for the remaining two weeks.
Two doctors performed a quick procedure to remove the line and we were very happy to see the back of it!
He was discharged from hospital later that day with lots of oral antibiotics to continue with to ensure the infection was completely gone.
On our way out, that same nurse who had given me a sad look and a cuddle said something neither of us will ever forget - "you had us all scared for a while there, we had crash teams at the ready outside the door of your room - it really was touch and go for you these last few days" - it sent shivers down our spines and I still feel sick thinking about it. I hadn't realised how close I'd come to losing the love of my life and I never want to feel that feeling again. We don't speak about it because it upsets us both, but this blog was always intended to be an honest account of what we're going through and the feelings we've felt, and I want it to stay that way.
I was told to continue monitoring Steve's temperature every few hours for about another week. Any sign of it heading above 37 degrees C and we were to go straight back in.
We were both really grateful to have some time off from treatment and we had a lovely rest of the summer.
We now have a 5 and a half week old beautiful little girl called Esmée! She is absolutely our world and we're besotted. She is definitely a Daddy's girl. He adores her and she looks so much like him! She's brought such an amazing joy into our lives and nothing makes me happier than seeing my husband cuddling our little girl and staring into her eyes. It melts my heart (and I have to keep deleting things from my phone to make room for photos - I already have about 600 pictures of her, mostly with her dad!).
Steve will soon be starting on a trial drug, the main aim of which is to eradicate the symptoms of cancer (pain, fatigue, nausea etc) and to build muscle mass, enabling him to better fight the disease. It also aims to prevent the cancer from spreading anywhere else in the body, keeping it contained to his lungs. Following this, it's likely he will continue with more chemotherapy and possibly other treatments.
His oncologist is really excited about this new drug so we have high hopes.
Apologies for the 5 months of quiet since my last posts, I'll try not to leave it so long next time!
Lots of love as always
Xx
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
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
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
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
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
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.
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
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
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
Wednesday, 3 October 2012
Chemo Plan: Take 1
Lots of appointments today!
- Meeting with surgeon Mr H to check wounds and have stitches removed
- Meeting with stoma nurse
- Meeting with oncologist to find out the chemo plan
That's what we thought anyway...
First two appointments were fine, although some skin had started to grow over Steve's stitches so they were quite painful to remove!
The meeting with the oncologist was the one we were most apprehensive about. It was quite a shock to hear Steve would need chemo in the first place so we were looking forward to hearing the plan and being able to prepare.
But the oncologist didn't have much information for us apart from that chemo would be 3 weekly, for either 12 weeks or 24 weeks depending on whether or not Steve wants to take part in a trial meaning the cycle would be shorter than the standard.
Steve wants to be fit for my birthday at the end of October, so the oncologist said it's likely chemo will start the following week - about 4 weeks from now. No dates or names of drugs, and it felt like he didn't have a lot of time for us so we left quite quickly not knowing a lot more than we had when we arrived.
So not much to update everyone on really, but as soon as I do you'll all know about it :)
Just wanted to send all my love to my Twitter BC friends too... I'm completely overwhelmed by the love, support, kind words and help I've received from everyone I've been in touch with via Twitter, it's been absolutely incredible! I've noticed recently that some of my closest friends seem to have disappeared since Steve's diagnosis but people I've never even met have been unbelievable, so I'm really grateful for that and want to let everyone know how amazing they all are! Massive hugs!
Lots of love Xx
Lots of love Xx
Saturday, 22 September 2012
More results
So we got a phone call on Tuesday from Di. She said the tissue removed during Steve's surgery had been analysed and she had some results for us.
Out of the 29 lymph nodes removed, 3 are cancerous. This means there's a chance of some evil little cancer cells still floating about in Steve's body - this means chemo.
We were told the chances of chemo were slim because Steve's operation was the most drastic that could have been done, so it was likely all the cancer would be taken out. We were told back in July that the scans showed the cancer hadn't spread to any lymph nodes - I've since been told that there would be no way of knowing this until the histology was back from the operation.
She said it was unlikely that any cancer had been left behind as the whole tumour was removed, but chemo would assure that any stray cells would be destroyed.
We have an appointment in about 2 weeks when we'll find out the plan for chemo. Until then all we know is that it will be happening.
We both understand this and in the long run I'm sure we'll be thankful for it. But we'd been so convinced that this would all be over after the operation that we can't help feeling a bit let down and wounded by this news.
Steve's aim had been to reach the end of the 6-8 week recovery period from the surgery and get on with his life. Back to work, back to socialising, back to normality. Now we'd been given at least an extra 6 months on top of that. This seems so far away that we can't even see it. It feels like it's never ending and it's only been 3 months since we first went into hospital after the Isle of Wight Festival.
Just a bit of a rant really! This has been such a tough journey and I've felt so helpless all the way. All I want to do is take it all away from him and make this all go away and there's nothing I can do to make that happen.
I do understand it's for the best - the way I see it, doing chemo now means he hopefully won't have to go through any of this again in the future. Just can't help feeling a bit deflated by it all.
If anyone has any advice or words of wisdom they can offer, please do! Thank you.
Lots of love Xx
Out of the 29 lymph nodes removed, 3 are cancerous. This means there's a chance of some evil little cancer cells still floating about in Steve's body - this means chemo.
We were told the chances of chemo were slim because Steve's operation was the most drastic that could have been done, so it was likely all the cancer would be taken out. We were told back in July that the scans showed the cancer hadn't spread to any lymph nodes - I've since been told that there would be no way of knowing this until the histology was back from the operation.
She said it was unlikely that any cancer had been left behind as the whole tumour was removed, but chemo would assure that any stray cells would be destroyed.
We have an appointment in about 2 weeks when we'll find out the plan for chemo. Until then all we know is that it will be happening.
We both understand this and in the long run I'm sure we'll be thankful for it. But we'd been so convinced that this would all be over after the operation that we can't help feeling a bit let down and wounded by this news.
Steve's aim had been to reach the end of the 6-8 week recovery period from the surgery and get on with his life. Back to work, back to socialising, back to normality. Now we'd been given at least an extra 6 months on top of that. This seems so far away that we can't even see it. It feels like it's never ending and it's only been 3 months since we first went into hospital after the Isle of Wight Festival.
Just a bit of a rant really! This has been such a tough journey and I've felt so helpless all the way. All I want to do is take it all away from him and make this all go away and there's nothing I can do to make that happen.
I do understand it's for the best - the way I see it, doing chemo now means he hopefully won't have to go through any of this again in the future. Just can't help feeling a bit deflated by it all.
If anyone has any advice or words of wisdom they can offer, please do! Thank you.
Lots of love Xx
Sunday, 16 September 2012
Scan results
Finally Tuesday 24th July came. We had a meeting with Di, Steve's key worker, to discuss the results of his recent scans.
She told us they showed signs of a very early cancer with no spread! It should be easily treatable with surgery and a possibility of chemotherapy afterwards.
I left the hospital feeling really positive - after all of this, he'd be cancer free and we could get on with our lives together. I was holding back tears of happiness - his first symptom had been so drastic and he's lost such a large amount of blood that we'd started to fear the worst. I was thrilled that the cancer was treatable. Steve was understandably very nervous for surgery, but mostly just relieved and happy that he was going to be okay.
Di told us we'd have a further meeting on Friday 10th August, where Steve's surgeon, Mr H, would be present to further discuss the surgery and provide us with a date. Di told us it would very likely be the following week, and we prayed that it would - waiting was excruciating.
Mr H gave us a date - 6th September. We'd have to wait nearly 4 weeks! We didn't want enough time to think about what was being done, we just wanted it done. I did take some comfort in the fact that they were letting us wait so long - I've learned from previous experiences that if it was really serious, they'd have wanted to operate immediately.
We didn't have much choice - we waited nearly 4 weeks, and tried to put all of this to the back of our minds. (Impossible!)
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