Sunday 20 February 2011
ps
Oh yes, and I've decided I'm going to try and make a patch work blanket for Millie. I have some side effects of the treatment which means the nerves in the end of my fingers are not really working, so may have to put it off. But if any one can recommend a good book or can point me in the right direction as to where to start, that would be great!
Therefore we do not lose heart. Though outwardly we are wasting away, yet inwardly we are being renewed day by day
Well i'm writing this post from bed having seen a lot of it over the last three days. Chemo #3 is done and dusted and I'm starting to get to the other side of the intense symptoms. I had a reaction to one of the drugs they give you in the hospital which was unexpected and caused some nasty symptoms. The first 24 hrs were the worst yet but rode them out and have felt surprisingly better with the nausea just v.tired; thus the need for sleep.
Since last time I posted we've had a lot on. Got keys to our new place, hurrah, but said good bye to our car which decided to conk out on a busy roundabout in Bournemouth at rush hour. I was driving down to pick Ray up from the train station and despite feeling a bit ropey was not anticipating having to make get the RAC out and the police to help push the car out of a busy road. Thankfully I didn't get ill as it was really cold and had to wait a good hour in the cold before my dad rescued me with his fancy car with heated seats! So having to figure out how to buy a new car and pay for the house, but hey as Ray says, it wouldn't be faith if you could see how it was all going to work out.
I've been slowly getting more tired and Millie seems to be getting more active so together we've had to bring in a new babysitter who helps me out two mornings a week every two weeks on. When Mum in Law is down, she takes over, and it is great as Millie adores her so I can rest and my Mum can get some time to do other stuff too. She has been an absolute star through all this and I thank God daily for her faith, strength and generosity.
We celebrated out 5th Wedding Anniversary the day we got the keys to the house and remembered that we actually stayed in Bournemouth on our wedding night so it felt like a full circle to be out to dinner that night not far from the hotel. Millie will probably think we've always lived around her as she grows up but we've got lots of stories to tell her about her brief stint in London and her posh birth certificate showing she was in fact born in the Borough of Chelsea and Westminster.
We've been sorting stuff out with the house and saw a builder this week to get a quote for some reasonably extensive building work. He seemed really positive about the whole thing and can turn it around quite quickly. With the unexpected car expense may have to put that on hold for a bit but exciting that our plans weren't totally mad and he said the kitchen/diner would look great.
I've noticed most people down here look so tanned and healthy despite being winter. Seems like the sun ignores the season and shines a lot more down here and we've had some lovely days exploring the New Forest and Beach. Millie is already a beach babe and adores the beach so much that she has started making her own sandpit down the bottom of Mum and Dad's garden with some of Dad's left over patio sand. She is quite a girl with a plan and now she is starting to really talk it is hilarious keeping up with what she's decided to do with the day.
On a final note, been really struck by the verse above from the Bible that has been encouraging me this week. I had a good chat with the specialist MacMillan Nurse this week who always helps me with the symptoms. We don't know if we are getting it yet but I've found out that after more investigations my staging is the earliest which means that they are assuming the drugs are working. We were talking about how it feels to start loosing your hair, energy, appetite, etc and I spoke about that even though that is all happening I still feel peaceful. It is true though. I'm learning to live in the moment and as the chemo is getting more in to my body it is very hard and sad at times which me waste away before my eyes. It is especially hard to watch the impact on those closest to me who have to care for me and take over with Millie. I often think it takes just as much courage to face this alongside someone as to go through it as they can feel at times helpless and scared. But inside I can feel my character being refined, I'm growing up lots, learning a lot about courage and what it really means to enjoy every bit of life. I know it may sound strange to some of you but I wouldn't change the path I'm on (at the moment anyway :)I'm learning so much about God's compassion for me and getting an insight in to His Love for me and strength that I can relate to Paul, the writer of the verse, that even though I may look like I'm wasting away, inwardly I'm getting all I need to be Gen, love God back and get enough energy to get through the day.
Since last time I posted we've had a lot on. Got keys to our new place, hurrah, but said good bye to our car which decided to conk out on a busy roundabout in Bournemouth at rush hour. I was driving down to pick Ray up from the train station and despite feeling a bit ropey was not anticipating having to make get the RAC out and the police to help push the car out of a busy road. Thankfully I didn't get ill as it was really cold and had to wait a good hour in the cold before my dad rescued me with his fancy car with heated seats! So having to figure out how to buy a new car and pay for the house, but hey as Ray says, it wouldn't be faith if you could see how it was all going to work out.
I've been slowly getting more tired and Millie seems to be getting more active so together we've had to bring in a new babysitter who helps me out two mornings a week every two weeks on. When Mum in Law is down, she takes over, and it is great as Millie adores her so I can rest and my Mum can get some time to do other stuff too. She has been an absolute star through all this and I thank God daily for her faith, strength and generosity.
We celebrated out 5th Wedding Anniversary the day we got the keys to the house and remembered that we actually stayed in Bournemouth on our wedding night so it felt like a full circle to be out to dinner that night not far from the hotel. Millie will probably think we've always lived around her as she grows up but we've got lots of stories to tell her about her brief stint in London and her posh birth certificate showing she was in fact born in the Borough of Chelsea and Westminster.
We've been sorting stuff out with the house and saw a builder this week to get a quote for some reasonably extensive building work. He seemed really positive about the whole thing and can turn it around quite quickly. With the unexpected car expense may have to put that on hold for a bit but exciting that our plans weren't totally mad and he said the kitchen/diner would look great.
I've noticed most people down here look so tanned and healthy despite being winter. Seems like the sun ignores the season and shines a lot more down here and we've had some lovely days exploring the New Forest and Beach. Millie is already a beach babe and adores the beach so much that she has started making her own sandpit down the bottom of Mum and Dad's garden with some of Dad's left over patio sand. She is quite a girl with a plan and now she is starting to really talk it is hilarious keeping up with what she's decided to do with the day.
On a final note, been really struck by the verse above from the Bible that has been encouraging me this week. I had a good chat with the specialist MacMillan Nurse this week who always helps me with the symptoms. We don't know if we are getting it yet but I've found out that after more investigations my staging is the earliest which means that they are assuming the drugs are working. We were talking about how it feels to start loosing your hair, energy, appetite, etc and I spoke about that even though that is all happening I still feel peaceful. It is true though. I'm learning to live in the moment and as the chemo is getting more in to my body it is very hard and sad at times which me waste away before my eyes. It is especially hard to watch the impact on those closest to me who have to care for me and take over with Millie. I often think it takes just as much courage to face this alongside someone as to go through it as they can feel at times helpless and scared. But inside I can feel my character being refined, I'm growing up lots, learning a lot about courage and what it really means to enjoy every bit of life. I know it may sound strange to some of you but I wouldn't change the path I'm on (at the moment anyway :)I'm learning so much about God's compassion for me and getting an insight in to His Love for me and strength that I can relate to Paul, the writer of the verse, that even though I may look like I'm wasting away, inwardly I'm getting all I need to be Gen, love God back and get enough energy to get through the day.
Sunday 6 February 2011
Needing to make some changes...
Had a really funny week since I last posted. Chemo really knocked me out after the last session, and although I have been told that each cycle is very different from the next, I must admit I was ill prepared. The nausea and sickness lingered for about 7 days and I had fatigue and moments of feeling a bit vacant. Now having got through the other side I feel remarkably normal again and have found that I can reflect on how to try and cope better if the next session is the same. I think it is partly because I am trying to be a full time mummy to a 19mth old and so I was not fully resisting, which allowed the nausea subside, or being fully mummy which meant Millie was finding it hard me in and out during the day. Mum and I have worked through a more effective schedule and calling in a lot of help so I can really give in to the immediate extreme symptoms and just rest to allow my body to not reject the drugs and start the sickness up.
Emotionally am feeling more tired but managed to get along to church community group and see some friends so felt uplifted and supported again. It is just the readjustment to my new normal that I suspect is just going to be a daily process and as long as I come back to God and times of prayer and being quiet I get back on track quickly. It is hard at times not to worry and think what if this doesn't work but when I work through what I believe is true and reaffirm that I won't live a day longer or shorter than God ordains, it does give me comfort and I remember the importance of living every day like it is your last. It is funny as I can go from being really deep to really trivial in a sentence that I'm surprised my family can keep up! I do believe that it is not my time, and that I have words over my life that I have things yet to do, but I'm sort of coming to a serene peace that even if it is my time, God is in control of those closest to me, my friends and the timing. I've been thinking how important it is to deal with this in the moment otherwise I can't imagine how I'd deal with the remission part and trying to live with not knowing if the cancer is going to come back. Oh there you go getting all deep again...! How amazing are people who live with life threatening illnesses all the time? I mean how do they cope? I've found it really inspiring hearing stories about how they live with such uncertainty and it really helps to stay focused, and know that compared to so many this is a light burden.
I've got my post chemo tomorrow and I'm planning to ask more about the staging of the cancer and if they are still planning to cut down my treatment to 5 not 6 sessions in total. We figured out today that if I do 5 I'll be done by Easter and start May hopefully in remission. That is a good thought but we are still a little unsure how to plan ahead to be honest. There is a holiday away with some peeps from church in August and I'm guessing I'll feel a lot better by then so we're thinking about going on that. Oh and before that Millie's 2nd bday is something to plan for too.
We're due to get the keys to our new place on Friday which is so exciting especially as I'm planning to get the builders in straight away to do start out kitchen/diner/play room re-design if possible. We need to make the most of us not living there and having a Dad whose worked in the building trade it is really useful as he's got a lot of knowledge about what we need and how to get the best. It sounds mad though doesn't it?! But we don't know how long this process could last as if they don't get kill the cancer than we are on to radiotherapy straight after, so if we wait for a "better" time we may never actually get up and running in our new place and the three of us really need a home. Having looked at the finances though we are needing the Lord to provide but if it is right He will.
Well, I'm completely bald now. I'd had no massive hair loss for about 10 days then suddenly yesterday in the shower the rest of the very short hair fell out. Literally a whole covering of hair in one short shower! So funny as I said to Ray "Get Millie ready, and I'll have a shower, then we'll go to Waitrose", 5 mins later, I was out completely bald, no warning. Poor Ray got a bit of a fright when I came out! Bless him, he found it really hard, much harder than cutting it short. I had sooooo much hair on my head though that I knew it would take ages to completely go. Now I have the unattractive patchy look so will need to shave it properly. I've not found it hard at all as I think the major surrendering to it happened when it started falling out the last cycle. Millie says my hair is asleep now and when I ask where it is, she points at my wig in my room. I have no idea how much therapy that poor child will need to get over this one, but hey.
She has been much calmer in herself since we prayed with group on Thursday and partly I think because I feel so much better. She is very intuitive and picks up a lot on how I am feeling. This is partly why we are calling in more support as it allows me to really give in to rest and so when I see her I can actually play and give her quality time. I'm treasuring every moment with her at the moment like never before and realising how amazing it is that God is letting me borrow her for this precious time when she is so little and needs me absolutely.
Imsomnia is not fun though. Sigh. As you can see I'm up late for me and it is hard as you don't get great sleep when you do fall asleep. Partly the chemo affects and as I have two very noisy sleepers in my ear - Millie on the monitor in one, and Ray in the other. Ear plugs are helping though and naps in the afternoon help me pace myself.
5th Anniversary on Friday - woo. We're going to get takeaway and go sit in out new house. Can't wait! First night out in months so feels like it is needed and I know poor Ray could do with some time out as he's coping with so much at the moment what with more responsibilities at work, the commute, picking up all the slack from me and just the stress of having a sick wife fighting a life threatening illness. But before you feel too sorry for him he always has energy to disagree with his wife about an array of topics - this week "is that a plane in the sky or is it Venus?" After 20 minutes of said sparkly green star not moving and me blue in the face listing why Ray should take my astronomy credentials seriously (including my 100% in the space section of my Physics GCSE :) he caves in and admits it could well be a planet!
Emotionally am feeling more tired but managed to get along to church community group and see some friends so felt uplifted and supported again. It is just the readjustment to my new normal that I suspect is just going to be a daily process and as long as I come back to God and times of prayer and being quiet I get back on track quickly. It is hard at times not to worry and think what if this doesn't work but when I work through what I believe is true and reaffirm that I won't live a day longer or shorter than God ordains, it does give me comfort and I remember the importance of living every day like it is your last. It is funny as I can go from being really deep to really trivial in a sentence that I'm surprised my family can keep up! I do believe that it is not my time, and that I have words over my life that I have things yet to do, but I'm sort of coming to a serene peace that even if it is my time, God is in control of those closest to me, my friends and the timing. I've been thinking how important it is to deal with this in the moment otherwise I can't imagine how I'd deal with the remission part and trying to live with not knowing if the cancer is going to come back. Oh there you go getting all deep again...! How amazing are people who live with life threatening illnesses all the time? I mean how do they cope? I've found it really inspiring hearing stories about how they live with such uncertainty and it really helps to stay focused, and know that compared to so many this is a light burden.
I've got my post chemo tomorrow and I'm planning to ask more about the staging of the cancer and if they are still planning to cut down my treatment to 5 not 6 sessions in total. We figured out today that if I do 5 I'll be done by Easter and start May hopefully in remission. That is a good thought but we are still a little unsure how to plan ahead to be honest. There is a holiday away with some peeps from church in August and I'm guessing I'll feel a lot better by then so we're thinking about going on that. Oh and before that Millie's 2nd bday is something to plan for too.
We're due to get the keys to our new place on Friday which is so exciting especially as I'm planning to get the builders in straight away to do start out kitchen/diner/play room re-design if possible. We need to make the most of us not living there and having a Dad whose worked in the building trade it is really useful as he's got a lot of knowledge about what we need and how to get the best. It sounds mad though doesn't it?! But we don't know how long this process could last as if they don't get kill the cancer than we are on to radiotherapy straight after, so if we wait for a "better" time we may never actually get up and running in our new place and the three of us really need a home. Having looked at the finances though we are needing the Lord to provide but if it is right He will.
Well, I'm completely bald now. I'd had no massive hair loss for about 10 days then suddenly yesterday in the shower the rest of the very short hair fell out. Literally a whole covering of hair in one short shower! So funny as I said to Ray "Get Millie ready, and I'll have a shower, then we'll go to Waitrose", 5 mins later, I was out completely bald, no warning. Poor Ray got a bit of a fright when I came out! Bless him, he found it really hard, much harder than cutting it short. I had sooooo much hair on my head though that I knew it would take ages to completely go. Now I have the unattractive patchy look so will need to shave it properly. I've not found it hard at all as I think the major surrendering to it happened when it started falling out the last cycle. Millie says my hair is asleep now and when I ask where it is, she points at my wig in my room. I have no idea how much therapy that poor child will need to get over this one, but hey.
She has been much calmer in herself since we prayed with group on Thursday and partly I think because I feel so much better. She is very intuitive and picks up a lot on how I am feeling. This is partly why we are calling in more support as it allows me to really give in to rest and so when I see her I can actually play and give her quality time. I'm treasuring every moment with her at the moment like never before and realising how amazing it is that God is letting me borrow her for this precious time when she is so little and needs me absolutely.
Imsomnia is not fun though. Sigh. As you can see I'm up late for me and it is hard as you don't get great sleep when you do fall asleep. Partly the chemo affects and as I have two very noisy sleepers in my ear - Millie on the monitor in one, and Ray in the other. Ear plugs are helping though and naps in the afternoon help me pace myself.
5th Anniversary on Friday - woo. We're going to get takeaway and go sit in out new house. Can't wait! First night out in months so feels like it is needed and I know poor Ray could do with some time out as he's coping with so much at the moment what with more responsibilities at work, the commute, picking up all the slack from me and just the stress of having a sick wife fighting a life threatening illness. But before you feel too sorry for him he always has energy to disagree with his wife about an array of topics - this week "is that a plane in the sky or is it Venus?" After 20 minutes of said sparkly green star not moving and me blue in the face listing why Ray should take my astronomy credentials seriously (including my 100% in the space section of my Physics GCSE :) he caves in and admits it could well be a planet!
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