I'm in serious countdown mode until treatment finishes. Including today, it's 37 days until my last pump is removed and I will be chemo forever (fingers very much crossed.) I have to fit three more sessions in that time, I'm starting to find it a little more difficult each time to shake the side effects, but that's to be expected with the cumulation of chemo in my system. I keep the mantra ~this is not forever, this feeling is transient~ going around in my noggin. Hard sometimes when I'm feeling green around the gills, but I do try!
Things that help me through the nausea, pain and neuropathy are that the following things are going to happen before Christmas;
A make up day in London with Bryony and Alice (most probably a couple of glasses of bubbly thrown in for good measure.)
A spa day with Jo and Veri, us girls really need this.
A trip up to Yorkshire to stay with Emma, we'll also be planning our road trip next year to the west coast of the USA.
A getaway for just me and Paul.
Cooking many dinners for friends and family, getting back to one of the most pleasurable of things for me to do.
Setting up a new blog, it'll most likely feature food, recipes and pictures of what I like to cook and bake.
Meet new friends I've made through this journey. Cancer has few benefits, but I've had the fortune to get to know many very wonderful people also affected by this disease. It's truly a humbling experience and I'm very much looking forward to meeting these people in real life.
Volunteer work for various charities, I want to give back and support people who have been affected by cancer.
RETURN TO WORK (before this year is out - again, fingers crossed!!!) I'm itching to get back.
So, quite a busy three months leading up to Christmas. I feel like a new lease of life is heading my way and I'm going to grasp it with both hands and treasure every minute of it!
Hayley x
Wednesday 29 August 2012
Friday 24 August 2012
Chemotherapy #9
I'm 3/4 of the way through chemo! Nine down, three more to go, it's a good feeling!
So how did it go this time? Well, it wasn't quite a smooth sailing as the previous two cycles but nothing too bad at all.
The chemo day was fine, no waiting around and sat in a private room. Got home and things were pretty standard for after chemo; incredibly tired and lots of tingly sensations. Later on in the evening I started to feel more nauseous than usual. I've been coping with nausea much better since taking Emend - however I was a little unwell Tuesday night. I took some Cyclizine and Levomepromazine quell that uncomfortable feeling.
Paul stayed awake until I feel asleep at around 3am, to make sure I was ok, bless him! I woke up periodically to take my usual antihistamine and paracetamol to prevent any reaction to the chemo and it all worked out to be an ok night.
Fast forward to Thursday 4pm which would have been 47 hours since my 5FU pump was attached. I like to give it a little extra than the required 46 hours, just to make sure I get every last drop of that "liquid gold." Unfortunately, the pump was on the go slow for this infusion. It hadn't finished in 46 hours, my picc line had a slight kink in it. Dammit, another night with the pump attached! The nurse moved my line so it now runs straight up my arm and the chemo pump was back in working order. I reckon it finished around 10 hours later than it should have. I wonder what Dr B will have to say about that? I'm sure he'll find some way to tell me off!
To be honest, I should have noticed this kink in my line when I was having the Oxaliplatin infusion on Tuesday. Everytime I bent my arm there was an occlusion in the line which stopped the chemo being pumped through. This meant that Nurse S had to keep coming in everytime it beeped to start it up again. Nevermind, the pump has been disconnected now and I can look forward to 11 days of freedom.
It was a sad day yesterday. It was a year since we said goodbye to Autumn. Paul and I wanted to go to where she rests, a beautiful part of The South Downs in a corner of a very peaceful forest. It's quite a walk whilst the chemo is still coursing through my body, but I'm so glad that I got to talk to her. I talk to her all the time, but standing there, where life is so abundant due to her energy is such beautiful poetry to me.
Autumn continues to give so much even though she's been gone a year. Amazing.
Hayley x
So how did it go this time? Well, it wasn't quite a smooth sailing as the previous two cycles but nothing too bad at all.
The chemo day was fine, no waiting around and sat in a private room. Got home and things were pretty standard for after chemo; incredibly tired and lots of tingly sensations. Later on in the evening I started to feel more nauseous than usual. I've been coping with nausea much better since taking Emend - however I was a little unwell Tuesday night. I took some Cyclizine and Levomepromazine quell that uncomfortable feeling.
Paul stayed awake until I feel asleep at around 3am, to make sure I was ok, bless him! I woke up periodically to take my usual antihistamine and paracetamol to prevent any reaction to the chemo and it all worked out to be an ok night.
Fast forward to Thursday 4pm which would have been 47 hours since my 5FU pump was attached. I like to give it a little extra than the required 46 hours, just to make sure I get every last drop of that "liquid gold." Unfortunately, the pump was on the go slow for this infusion. It hadn't finished in 46 hours, my picc line had a slight kink in it. Dammit, another night with the pump attached! The nurse moved my line so it now runs straight up my arm and the chemo pump was back in working order. I reckon it finished around 10 hours later than it should have. I wonder what Dr B will have to say about that? I'm sure he'll find some way to tell me off!
To be honest, I should have noticed this kink in my line when I was having the Oxaliplatin infusion on Tuesday. Everytime I bent my arm there was an occlusion in the line which stopped the chemo being pumped through. This meant that Nurse S had to keep coming in everytime it beeped to start it up again. Nevermind, the pump has been disconnected now and I can look forward to 11 days of freedom.
It was a sad day yesterday. It was a year since we said goodbye to Autumn. Paul and I wanted to go to where she rests, a beautiful part of The South Downs in a corner of a very peaceful forest. It's quite a walk whilst the chemo is still coursing through my body, but I'm so glad that I got to talk to her. I talk to her all the time, but standing there, where life is so abundant due to her energy is such beautiful poetry to me.
Autumn continues to give so much even though she's been gone a year. Amazing.
Hayley x
Sunday 19 August 2012
My heart
It's been a year since I held you. My precious little girl; you're my waking thought and my evening solace. I still remember how warm you felt, how you smell and the tiny cries when you were being brave having needles and lines stuck in you.
My heart is still broken, you never came home but I was at home when I was with you. You were only tiny, but you had a massive spirit. I could see your personality when I looked in your beautiful blue eyes. You had your Daddy's eyes and my fingers and toes.
I have so many happy memories of you, the first time I saw you, the first time I held you, the first time you looked at me, the first time you held my hand with that tight grip. We did your cares, I got to wash your face, change your nappy and arrange your bedding.
You had two major operations on your tummy, first one was a success. Within 2 weeks you were being weened onto my milk, millileter at a time you were getting stronger. The doctors and surgeons were so impressed with you, such a clever little girl. Your lungs were so strong, you could breathe on your own for 20 minutes at a time. I'll never forget your face. Such a beautiful, perfectly formed and tiny face. Without all the breathing apparatus, we got to see you. You were just amazing.
I'll never forget the day when I couldn't leave you. I knew you weren't happy. I knew you were in pain. I knew I could do nothing to stop it. I held your tiny hand, I watched you cry. I hurt everytime tiny tears rolled down your face. I knew that it wasn't right. We left for an hour and the call came. It was the nurse telling us we should come back to see you. We raced back as fast as we could, you were hooked up to more machines and you were lying still. No longer the CPAP machine, but on the ventilator. The doctor said it wasn't good. The big tall surgeon came by to tell us that he wanted to see how you progressed overnight, he didn't want to have to open up your tummy too soon. I sat one side of you and daddy the otherside, we both held your hands. We both willed you to get better.
We stayed next door to you all night, whilst the lovely surgeon, doctors and nurses monitored you. Your breathing started to stabilise, but you were everso poorly. Mr W, the surgeon told me and your daddy he'd have to operate in the morning. We signed the scary consent forms to allow him to go ahead.
We waited, it was agonising. We waited some more. We paced the room, the clock seemed to standstill.
An hour and a half later, we could see the surgeon, doctor and nurses coming towards our room. Mr W, the doctor and nursed came in, we sat down. We were told that you wouldn't be with us for long. I've never known what it's like to have my heart taken away from me, but I did from that moment. I wanted to rip the walls down, I wanted to scream. I cried, I was sick. This couldn't be happening to you. We are supposed to protect you, we are supposed to see you grow up, speak your first words, take your first steps, encourage you on your first day of school. Your dad would comfort you when a boy broke your heart and I would cry when you looked so beautiful on your wedding day.
We took you into our room next door and we sat with you. Slowly, all the equipment was taken away and we were left with you. Just me, daddy and you. It wasn't supposed to be this way. Daddy and I took it in turns to cuddle you, you were so warm all wrapped up in the blanket. Your eyes were open, but they started to close. The nurse came in and listened to your heart; "she's still here," she said, then she left us. You were still with me and daddy, you were such a little fighter. I kissed your head, with soft beautiful light red hair. We didn't want to let you go. I've never felt pain like this, your life was slipping away in our arms and we couldn't help you. The nurse listened again, "she's still here," you were sleeping now, the nurse left us again. Your eyes were closed and you looked so peaceful. We talked to you, we told you we loved you, how proud we were of you. We didn't want you to be on your own in this journey, we wanted you to hear our voices until you fell alsleep.
Nurse E came back and listened to your heart. "She's gone to sleep now." Our beautiful baby girl, you were at peace now. No more scary operations, no more needles, cannulas, blood pressure sleeves, test after test, after test. You were free now. We held onto you, crying like we could never, ever stop. Our hearts are broken and nothing will fix them. The nice doctor came in and made it official, that Autumn Selina Charlotte Hovey, the little girl with the big name, was gone. I told the doctor that I couldn't let you go on anymore in pain, I couldn't see you wired up to those machines anymore. The nice doctor said I was thinking like a mummy.
I thought I would die from the pain I felt, but I haven't. I suffer day in and day out knowing that I watched your life slip away in our arms. I try to think about the all the lovely times we had together, but the dark cloud of that day spoils my thoughts. We can't and never will get over losing you, no parent should outlive their children.
I've been missing you so much the past week or so, we just had your birthday and we're coming up to that horrible day when we said goodbye.
I'll always remember you, my sweet girl. You have changed my life forever, I will always love you. Big kiss X
My heart is still broken, you never came home but I was at home when I was with you. You were only tiny, but you had a massive spirit. I could see your personality when I looked in your beautiful blue eyes. You had your Daddy's eyes and my fingers and toes.
I have so many happy memories of you, the first time I saw you, the first time I held you, the first time you looked at me, the first time you held my hand with that tight grip. We did your cares, I got to wash your face, change your nappy and arrange your bedding.
You had two major operations on your tummy, first one was a success. Within 2 weeks you were being weened onto my milk, millileter at a time you were getting stronger. The doctors and surgeons were so impressed with you, such a clever little girl. Your lungs were so strong, you could breathe on your own for 20 minutes at a time. I'll never forget your face. Such a beautiful, perfectly formed and tiny face. Without all the breathing apparatus, we got to see you. You were just amazing.
I'll never forget the day when I couldn't leave you. I knew you weren't happy. I knew you were in pain. I knew I could do nothing to stop it. I held your tiny hand, I watched you cry. I hurt everytime tiny tears rolled down your face. I knew that it wasn't right. We left for an hour and the call came. It was the nurse telling us we should come back to see you. We raced back as fast as we could, you were hooked up to more machines and you were lying still. No longer the CPAP machine, but on the ventilator. The doctor said it wasn't good. The big tall surgeon came by to tell us that he wanted to see how you progressed overnight, he didn't want to have to open up your tummy too soon. I sat one side of you and daddy the otherside, we both held your hands. We both willed you to get better.
We stayed next door to you all night, whilst the lovely surgeon, doctors and nurses monitored you. Your breathing started to stabilise, but you were everso poorly. Mr W, the surgeon told me and your daddy he'd have to operate in the morning. We signed the scary consent forms to allow him to go ahead.
We waited, it was agonising. We waited some more. We paced the room, the clock seemed to standstill.
An hour and a half later, we could see the surgeon, doctor and nurses coming towards our room. Mr W, the doctor and nursed came in, we sat down. We were told that you wouldn't be with us for long. I've never known what it's like to have my heart taken away from me, but I did from that moment. I wanted to rip the walls down, I wanted to scream. I cried, I was sick. This couldn't be happening to you. We are supposed to protect you, we are supposed to see you grow up, speak your first words, take your first steps, encourage you on your first day of school. Your dad would comfort you when a boy broke your heart and I would cry when you looked so beautiful on your wedding day.
We took you into our room next door and we sat with you. Slowly, all the equipment was taken away and we were left with you. Just me, daddy and you. It wasn't supposed to be this way. Daddy and I took it in turns to cuddle you, you were so warm all wrapped up in the blanket. Your eyes were open, but they started to close. The nurse came in and listened to your heart; "she's still here," she said, then she left us. You were still with me and daddy, you were such a little fighter. I kissed your head, with soft beautiful light red hair. We didn't want to let you go. I've never felt pain like this, your life was slipping away in our arms and we couldn't help you. The nurse listened again, "she's still here," you were sleeping now, the nurse left us again. Your eyes were closed and you looked so peaceful. We talked to you, we told you we loved you, how proud we were of you. We didn't want you to be on your own in this journey, we wanted you to hear our voices until you fell alsleep.
Nurse E came back and listened to your heart. "She's gone to sleep now." Our beautiful baby girl, you were at peace now. No more scary operations, no more needles, cannulas, blood pressure sleeves, test after test, after test. You were free now. We held onto you, crying like we could never, ever stop. Our hearts are broken and nothing will fix them. The nice doctor came in and made it official, that Autumn Selina Charlotte Hovey, the little girl with the big name, was gone. I told the doctor that I couldn't let you go on anymore in pain, I couldn't see you wired up to those machines anymore. The nice doctor said I was thinking like a mummy.
I thought I would die from the pain I felt, but I haven't. I suffer day in and day out knowing that I watched your life slip away in our arms. I try to think about the all the lovely times we had together, but the dark cloud of that day spoils my thoughts. We can't and never will get over losing you, no parent should outlive their children.
I've been missing you so much the past week or so, we just had your birthday and we're coming up to that horrible day when we said goodbye.
I'll always remember you, my sweet girl. You have changed my life forever, I will always love you. Big kiss X
Saturday 18 August 2012
Chemotherapy #8
As far as side effects go, this cycle of chemo may rank as the easiest so far.
I've mostly dealt with nausea the week after the infusion and some abdominal pain, but I was able to contain these fairly successfully with a combination of Cyclizine and slow release morphine. The combination of these two drugs should have sent me into a slumbering state, instead I've had the complete opposite. I've been suffering with insomnia, I can normally drop off to sleep at the drop of a hat, however I've been waking up at around 2.30 am a few times and unable to go back to sleep.
I have so many thoughts going through my head and in the dead of night, it seems almost impossible to forget them and count sheep.
Thoughts of my future. I'm excited, but also a little scared. Believe me, the sooner I can finish this treatment the better. The flip side to that is that without treatment, without the bi-weekly monitoring and blood tests - I'm on my own as far as medicine is concerned for six months at a time. I'll no idea what's going on in my body. I'll be relying on T cells to ensure nothing comes back. Cancer can be sneaky. It can bloom and flourish without us even knowing about it. Many symptoms (especially small reoccurrences) will not present themselves and are only detected with CT scans, which I'll be having every six months.
I've only discovered recently that I ticked a box at the beginning of my treatment (yeah, great reading of the small print there) to take part in the SCOT trial. As well as this being of benefit for future bowel cancer patients, it means I get monitored that little more cloesly over the next seven years rather than five. More frequent CT scans and blood tests means that *if* anything were to rear its ugly head, it can be knocked on his ugly head in a swift fashion.
I can really see the end of the tunnel now. Next Thursday will mark my six week countdown until my last 5FU pump is removed, if I put it that way it seems like no time at all!
We're starting to plan for life after treatment. Celebrating Christmas this year will be nice, a big holiday next year amongst other big plans we have on the horizon. The rest of our lives are ahead of us and we are extremely grateful.
Hayley x
I've mostly dealt with nausea the week after the infusion and some abdominal pain, but I was able to contain these fairly successfully with a combination of Cyclizine and slow release morphine. The combination of these two drugs should have sent me into a slumbering state, instead I've had the complete opposite. I've been suffering with insomnia, I can normally drop off to sleep at the drop of a hat, however I've been waking up at around 2.30 am a few times and unable to go back to sleep.
I have so many thoughts going through my head and in the dead of night, it seems almost impossible to forget them and count sheep.
Thoughts of my future. I'm excited, but also a little scared. Believe me, the sooner I can finish this treatment the better. The flip side to that is that without treatment, without the bi-weekly monitoring and blood tests - I'm on my own as far as medicine is concerned for six months at a time. I'll no idea what's going on in my body. I'll be relying on T cells to ensure nothing comes back. Cancer can be sneaky. It can bloom and flourish without us even knowing about it. Many symptoms (especially small reoccurrences) will not present themselves and are only detected with CT scans, which I'll be having every six months.
I've only discovered recently that I ticked a box at the beginning of my treatment (yeah, great reading of the small print there) to take part in the SCOT trial. As well as this being of benefit for future bowel cancer patients, it means I get monitored that little more cloesly over the next seven years rather than five. More frequent CT scans and blood tests means that *if* anything were to rear its ugly head, it can be knocked on his ugly head in a swift fashion.
I can really see the end of the tunnel now. Next Thursday will mark my six week countdown until my last 5FU pump is removed, if I put it that way it seems like no time at all!
We're starting to plan for life after treatment. Celebrating Christmas this year will be nice, a big holiday next year amongst other big plans we have on the horizon. The rest of our lives are ahead of us and we are extremely grateful.
Hayley x
Friday 3 August 2012
Chemotherapy #7
I'm wondering why I'm writing a post for this particular chemo. I haven't had any weird side effects, no 4 am visits to the hospitals and I'm feeling fairly well. As well as you can, two days after chemo.
I guess I intended this blog to remind me of each experience through treatment and recovery. If I feel half human, this is a good thing. I believe that we may have cracked it (she whispers, very gingerly). The combination of a mostly liquid diet two days before and two days after chemo, a huge amount of antihistamines and paracetamol to keep the reaction at bay and some rather elaborate (expensive) anti sickness drugs have made the past three chemo experiences the less of the living hell they could have been!
If I can give some advise to anyone going through chemo, ask for the anti sickness drug called Emend (Aprepitent), it's just fabulous. I'm sure NHS oncologists would try and gag me for sharing this information. It's expensive, but it really works. I've also suggested this to a couple of people who had horrendous sickness, they are now a whole lot better for taking this.
Don't get me wrong, Emend aside; I still feel a bit 'icky, lethargic, and the neuropathy and tummy pain has started to make an appearance again, but these are all very manageable. If I can get through the next 5 sessions like this, I'm a happy girl.
I'm even embracing my steroid blush, makes me look less like a cave dweller!
Hayley x
I guess I intended this blog to remind me of each experience through treatment and recovery. If I feel half human, this is a good thing. I believe that we may have cracked it (she whispers, very gingerly). The combination of a mostly liquid diet two days before and two days after chemo, a huge amount of antihistamines and paracetamol to keep the reaction at bay and some rather elaborate (expensive) anti sickness drugs have made the past three chemo experiences the less of the living hell they could have been!
If I can give some advise to anyone going through chemo, ask for the anti sickness drug called Emend (Aprepitent), it's just fabulous. I'm sure NHS oncologists would try and gag me for sharing this information. It's expensive, but it really works. I've also suggested this to a couple of people who had horrendous sickness, they are now a whole lot better for taking this.
Don't get me wrong, Emend aside; I still feel a bit 'icky, lethargic, and the neuropathy and tummy pain has started to make an appearance again, but these are all very manageable. If I can get through the next 5 sessions like this, I'm a happy girl.
I'm even embracing my steroid blush, makes me look less like a cave dweller!
Hayley x
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