Meant to put in prayer points for those of you who are praying for us :
The nausea is pretty rough at times so praying that it subsides
For Millie - it is weird time for her not having Mummy on form every day and having to watch me be very poorly and withdrawn at times. Please pray she feels secure and loved, and God gives her peace
That I have grace for not being the Mummy and Wife I want to be, but the one that I can be
We may qualify for critical care money from Ray's work which we have applied for. Please pray that we have peace as to the decision as it could really help us out with Ray having to take time off with no pay, but we're trusting God for provision.
That we can make it to our church service or lifegroup at least once a month
Thank you faithful friends
Friday 28 January 2011
2nd cycle
Had 2nd cycle yesterday which we went through quite quickly which was great. It knocked me out more this time and I looked I'll with it as well, so just rested and was quiet. No sickness this time thankfully. We changed the order of the drugs and that seems to have helped. I still get some strange symptoms in the first 24 hours which make sleep difficult so I had a bad night, but they seem to have gone so am just on to the strong anti nausea stuff for a few days.
Have had an ok week. Finally shaved hair off on Tuesday as it was so itchy and it was difficult doing normal things through concern that at any moment large chunks could fall out. Must admit it was surprisingly scary actually doing the final shave but I made myself do it and have felt a lot better afterwards as you can just get on with everyday life. It helped taking control.
It is a comfort getting back in to the cycle of hospital and you feel quite safe as you are in constant contact with the experts and you feel productive. This last week has felt strange, partly I suppose because of the hair going, but also because you are doing a lot of waiting and starting to get your strength up before you get zapped again. Felt vulnerable at times and more hormones have been affected, which they said will happen and just to ride it out. I can't say I've had the highs and the lows though which they warned me about, so that has been helpful as just been constant and steady really.
Been so appreciative of all the texts, emails and gifts everyone has given me. They really make a difference to my day and I am so grateful to have such wonderful friends and family. It has put a smile on my face everyday knowing that people are thinking of us and helping us through.
It was funny yesterday though as we took Date Night a movie with us to watch but I was laughing so loudly that we had to turn it off as it was distracting the other patients, most of them who were over 60, but the nurses thought it was hilarious. We realised we may have to vet the movies each time for appropriateness!
Have had an ok week. Finally shaved hair off on Tuesday as it was so itchy and it was difficult doing normal things through concern that at any moment large chunks could fall out. Must admit it was surprisingly scary actually doing the final shave but I made myself do it and have felt a lot better afterwards as you can just get on with everyday life. It helped taking control.
It is a comfort getting back in to the cycle of hospital and you feel quite safe as you are in constant contact with the experts and you feel productive. This last week has felt strange, partly I suppose because of the hair going, but also because you are doing a lot of waiting and starting to get your strength up before you get zapped again. Felt vulnerable at times and more hormones have been affected, which they said will happen and just to ride it out. I can't say I've had the highs and the lows though which they warned me about, so that has been helpful as just been constant and steady really.
Been so appreciative of all the texts, emails and gifts everyone has given me. They really make a difference to my day and I am so grateful to have such wonderful friends and family. It has put a smile on my face everyday knowing that people are thinking of us and helping us through.
It was funny yesterday though as we took Date Night a movie with us to watch but I was laughing so loudly that we had to turn it off as it was distracting the other patients, most of them who were over 60, but the nurses thought it was hilarious. We realised we may have to vet the movies each time for appropriateness!
Sunday 23 January 2011
Not such a good day
So the above post was written a few days ago but I've not had a chance to publish it. This actually is the one for today - my hair has just started falling out.
I had my hair cut short on Jan 4th after visiting the hospital and chatting to my cancer nurse called Catherine, who is hilarious by the way and a real gem. Ray and I just walked in to a hairdressers down in town and I said can you cut all my hair off please? It was quite weird but I felt ok and the hairdresser was excellent guiding me through it and I felt in control and prepared. It wasn't traumatic at all but quite cold though! Took about a day to not expect my hair to be there when I looked in the mirror but it was a great way of preparing for the inevitable and getting used to wearing hats.
From the beginning I've had a bit of stinging in my head around my scalp which was getting increasingly worse. It has been a bit weird so mum and I went wig shopping. It was a bit strange but like everything I'm trying to just see it as a journey so was sort intrigued to see what I'd look like. I tried on loads and some silly ones which just reassured me why I have never had a hair cut like it as it was hilarious! I settled on one closest to my original colour, with a small fringe and bob. To me it is always going to be poor substitute but I think it will help if I want a day when I want to look a bit more average than a bald person. I've got lots of hats too which I've researched so am sort of prepared and they've helped me feel proactive about it. Also wearing them it looked like I had no hair so I got used to people's double takes around the shop before I felt too vulnerable.
My scalp was sore last night so I couldn't really lay my head down and by 11pm I felt my hair starting to fall on my face. It seems to be going quite fast now so I may just cut it very short by the end of the day as it is getting a little irritating. I had a little cry in the shower when quite a lot came out and said a goodbye. It is a funny thing as it has literally been part of you for as long as you can remember but it is more the unknown of what, or who you are, without it. I know it is very very unlikely it won't come back but again, it is just the unknown of what hair you get afterwards and how that will make me feel. I prayed and felt peace about it and Ray and I joked, "hair today, gone tomorrow". I am really thankful that I've known true beauty is not what is on the outside for a while and know that Genevieve is still here shinning through even though I am starting to have less hair than my toddler!
I had my hair cut short on Jan 4th after visiting the hospital and chatting to my cancer nurse called Catherine, who is hilarious by the way and a real gem. Ray and I just walked in to a hairdressers down in town and I said can you cut all my hair off please? It was quite weird but I felt ok and the hairdresser was excellent guiding me through it and I felt in control and prepared. It wasn't traumatic at all but quite cold though! Took about a day to not expect my hair to be there when I looked in the mirror but it was a great way of preparing for the inevitable and getting used to wearing hats.
From the beginning I've had a bit of stinging in my head around my scalp which was getting increasingly worse. It has been a bit weird so mum and I went wig shopping. It was a bit strange but like everything I'm trying to just see it as a journey so was sort intrigued to see what I'd look like. I tried on loads and some silly ones which just reassured me why I have never had a hair cut like it as it was hilarious! I settled on one closest to my original colour, with a small fringe and bob. To me it is always going to be poor substitute but I think it will help if I want a day when I want to look a bit more average than a bald person. I've got lots of hats too which I've researched so am sort of prepared and they've helped me feel proactive about it. Also wearing them it looked like I had no hair so I got used to people's double takes around the shop before I felt too vulnerable.
My scalp was sore last night so I couldn't really lay my head down and by 11pm I felt my hair starting to fall on my face. It seems to be going quite fast now so I may just cut it very short by the end of the day as it is getting a little irritating. I had a little cry in the shower when quite a lot came out and said a goodbye. It is a funny thing as it has literally been part of you for as long as you can remember but it is more the unknown of what, or who you are, without it. I know it is very very unlikely it won't come back but again, it is just the unknown of what hair you get afterwards and how that will make me feel. I prayed and felt peace about it and Ray and I joked, "hair today, gone tomorrow". I am really thankful that I've known true beauty is not what is on the outside for a while and know that Genevieve is still here shinning through even though I am starting to have less hair than my toddler!
Story to far...
Well this post I think is going to be full of firsts as I take my first steps through chemo and all its side effects and implications. I had my first session on 6th Jan having had lots of meetings with nurses and Drs to confirm where I was at with diagnosis and to talk me through all the drugs, their uses and possible implications. I must admit the first time they tell you it is cancer I think the fear of those words are worse than the reality of it actually. I felt nothing but relief once they told me and you suddenly feel quite safe in this hospital bubble surrounded by experts who are telling you that it is a curable cancer and that is what they are aiming for. I laughed when they told me they are not God so can't guarantee that they will cure my cancer, but that they are committed to working towards that. My prayer since this all started was that Drs treat and God heals so it helps to know that ultimately they are helping in this process hugely but my fate rests with Almighty.
So first treatment went well. I had no allergic reactions to the 4 chemo drugs they give you through IV in hospital so it went through speedily in just over 5 hours. Ray and I kept ourselves entertained and distracted by watching a movie. I had a normal reaction to the last drug which takes about 15 mins to go through which was like stinging around my nostrils and eyes. Not so much painful as uncomfortable. Felt fine leaving but within about two hours after trying to get as many of the huge number of tablets I take down me, the sickness started. I think it was a combination of not getting the strong anti-sickness in me quickly enough and having a large dinner but anyways it only lasted about 14 hrs and then it went from strong nausea to mild to non existent within 5 days. Once we sorted which tablets happen when it was fine.
I have felt surprisingly well throughout the first cycle so far. The major symptoms you get with R-CHOP the chemo I am on are quite specific. I've had a numbness in the end of my fingers since about 7 days in, and occasionally a sore mouth and gums. I've managed to eat well though and go for at least one walk a day to stay active and get some fresh air. I've not always needed a nap in the day but once Millie goes down for hers it is good to rest up as much as possible. As all the mum's will know, raising toddlers is tiring at the best of times so I know I have to be really careful to totally give in to sleep when I need to.
I have also felt pretty ok in myself as well. The hardest thing to begin with is just being aware of how many very strong drugs are in your body and what it is doing. I felt so well in comparison to lots of people who have this cancer, and looked normal that it was a bit of a battle knowing the chemo is going to be quite brutal on my body and soon it will be obvious I have cancer. Especially once the hair goes.
I've been really aware of how to focus on getting through the treatment but any time you think too far ahead it is easy to start imagining a different future, new expectations and happier times. This can be helpful I know in some circumstances and whilst I have hope this will all happen, I find that if you are not careful you start escaping and then when you "wake up" if you like even if it has just been for a few minutes, you go through a sort of re-entry in to your reality which can be very unsettling. It is not that I spend everyday thinking I have cancer but I certainly don't spend long thinking I don't. I have found it much easier and more real to just be me in every moment, with cancer but laughing, watching tv, playing with Millie, organising decorating the house, rather than feeling the two are not compatible. So far this has allowed me to take captive thoughts that don't lead to anything productive or peaceful and as I constantly remind others, no one knows what tomorrow will bring.
I have been so blessed to know Joy though so far throughout this journey. It is a funny thing as it is not happiness, but a sense of knowing I'm secure in God. It is like a contentment that I am right where I should be and even through all the strange symptoms of the chemo I have known a peace that this is my path at the moment and in comparison to many it is a relatively easy one to walk. The world of cancer with its treatment, tests, waiting, tests and waiting, is just a world that is my new normal. It was funny as there was an excellent article in The Observer last Sunday about cancer written by a US physician who was talking about this "new normal" which I'd been saying to family since my diagnosis. It was excellent and explained how with a growing elderly population and 1/3 women diagnosed with cancer in the US in 2010, can we say cancer is an abnormality still or is it now part of our humanity and reality. I found it hard reading as I am still fighting my cancer and are not in remission yet, but still it was thought provoking and affirmed my attitude that you have to find a way of living with this disease for a while. You still fight it, you still hope it will go one day, but you don't dwell on the life you had without it or you just exhaust yourself. That is where I am at in my head I think, and you count every day as an opportunity again like when you were a child and you can't think to the end of the summer holidays at it is such a long time away that it is crazy trying.
So first treatment went well. I had no allergic reactions to the 4 chemo drugs they give you through IV in hospital so it went through speedily in just over 5 hours. Ray and I kept ourselves entertained and distracted by watching a movie. I had a normal reaction to the last drug which takes about 15 mins to go through which was like stinging around my nostrils and eyes. Not so much painful as uncomfortable. Felt fine leaving but within about two hours after trying to get as many of the huge number of tablets I take down me, the sickness started. I think it was a combination of not getting the strong anti-sickness in me quickly enough and having a large dinner but anyways it only lasted about 14 hrs and then it went from strong nausea to mild to non existent within 5 days. Once we sorted which tablets happen when it was fine.
I have felt surprisingly well throughout the first cycle so far. The major symptoms you get with R-CHOP the chemo I am on are quite specific. I've had a numbness in the end of my fingers since about 7 days in, and occasionally a sore mouth and gums. I've managed to eat well though and go for at least one walk a day to stay active and get some fresh air. I've not always needed a nap in the day but once Millie goes down for hers it is good to rest up as much as possible. As all the mum's will know, raising toddlers is tiring at the best of times so I know I have to be really careful to totally give in to sleep when I need to.
I have also felt pretty ok in myself as well. The hardest thing to begin with is just being aware of how many very strong drugs are in your body and what it is doing. I felt so well in comparison to lots of people who have this cancer, and looked normal that it was a bit of a battle knowing the chemo is going to be quite brutal on my body and soon it will be obvious I have cancer. Especially once the hair goes.
I've been really aware of how to focus on getting through the treatment but any time you think too far ahead it is easy to start imagining a different future, new expectations and happier times. This can be helpful I know in some circumstances and whilst I have hope this will all happen, I find that if you are not careful you start escaping and then when you "wake up" if you like even if it has just been for a few minutes, you go through a sort of re-entry in to your reality which can be very unsettling. It is not that I spend everyday thinking I have cancer but I certainly don't spend long thinking I don't. I have found it much easier and more real to just be me in every moment, with cancer but laughing, watching tv, playing with Millie, organising decorating the house, rather than feeling the two are not compatible. So far this has allowed me to take captive thoughts that don't lead to anything productive or peaceful and as I constantly remind others, no one knows what tomorrow will bring.
I have been so blessed to know Joy though so far throughout this journey. It is a funny thing as it is not happiness, but a sense of knowing I'm secure in God. It is like a contentment that I am right where I should be and even through all the strange symptoms of the chemo I have known a peace that this is my path at the moment and in comparison to many it is a relatively easy one to walk. The world of cancer with its treatment, tests, waiting, tests and waiting, is just a world that is my new normal. It was funny as there was an excellent article in The Observer last Sunday about cancer written by a US physician who was talking about this "new normal" which I'd been saying to family since my diagnosis. It was excellent and explained how with a growing elderly population and 1/3 women diagnosed with cancer in the US in 2010, can we say cancer is an abnormality still or is it now part of our humanity and reality. I found it hard reading as I am still fighting my cancer and are not in remission yet, but still it was thought provoking and affirmed my attitude that you have to find a way of living with this disease for a while. You still fight it, you still hope it will go one day, but you don't dwell on the life you had without it or you just exhaust yourself. That is where I am at in my head I think, and you count every day as an opportunity again like when you were a child and you can't think to the end of the summer holidays at it is such a long time away that it is crazy trying.
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